Forever Mighty Max

Thankful for nurses (6 years gone)

2009-11-24T23:59:00.001-06:00

Today an anonymous person sent us cookies with Max's picture on them. To whomever sent the cookies: Thank you. Looking at his face I feel like a Wild Thing telling Max, "I'll eat you up, I love you so."

The distractions are gone. I don't have to go to work tomorrow. Grace doesn't have school, and Margaret's pushed her grad school studies away. It's time jump into some intense grief. No point in trying to avoid it. He died on a Wednesday, the Wednesday before Thanksgiving. This year the actual date is on the holiday, but like most years, it's a matter of just getting to Friday.

Thanksgiving isn't fun. I'm not going to pretend it is. We'll be thankful again on Friday. But we aren't thankful for this anniversary.

Tonight (Tuesday night) is the anniversary of the last night we spent with our boy. We began to know then the finality that we still feel now. We chose that day to say goodbye forever, and the final night was our chance to hold him for the last times until the proceedings of the final day could be performed in the manner we best saw fit. This night we spent with the nurse who spent the most nights with Max, and it was right she was there. She had taken care of Max so carefully for so many nights, all the while keeping us up to date until we couldn't hold our eyes open any longer, usually around 3 in the morning. She had a way of suggesting it was OK for us to sleep, not just because we had to function, but because it would be OK, Max would be OK, that she would be looking after him. Her name is Yuri, and her nightly routine, her shift, was so very important to us. We are grateful that she was there for us that final night.

On Wednesday morning 6 years ago, the shifts changed and Max's primary nurse Anmarie came over. She came in to be with us for this shift. To be with us to help us let him go. We know now that she had to let him go too, that she had probably come to feel very close to him, maybe even to love him. Maybe it would have been just part of her job, just part of her routine, but I don't believe that. Even now I'm in awe of her strength to be with us in that room to be there for his last moments, trying her best to give us our final moments of privacy. Oh how she helped to clean his lifeless body with Margaret, to help us dress him before anyone else came in.

Often we talk about the Ronald McDonald House and the care and love that we received while living there. What we learned about ourselves and about the world was informed by the most naked display of compassion that keeps such a place full of light in a sea of darkness. But tonight I just wanted to recall two nurses who saw us at our lowest point, who saw our son at his lowest point, and after that. They saw us looking like total hell, and they saw a boy dying day by day.

They surely knew his future before we did. That was their job. They see sick kids and they see kids die. They must know it when they see it. How then, does one care for a child whose destiny is foretold? How then, to care for parents whose hope blinds logic? First they dive into their routine, they check the meds, they read the machines, they write their notes. But second, they turn and listen. They listen to the parents' fears and they listen to their raw need for support and they never, ever, ever, ever, ever, ever, judge. While there was still a glimmer of hope in our hearts for our son, however dim it might have seemed to their training and experience, they turned to us and to our son, and matched our love to the very end.

It's right to ask what are you thankful for this time of year. I'm thankful for my family, for a wife and daughter who give me support and love and who have helped me climb out of the deepest holes of despair and grief.

I'm also so very thankful for the nursing care Max received in Minnesota. Thank you for making the care of others your life's work. You are what I'm thankful for today, tomorrow, and of course, on Thanksgiving.

Is it OK if I have another cookie? Will it heal the pain if I have a cookie for every year he's been gone?

Friday Margaret will try to Black-Friday-shop the grief away, then we'll put our Christmas tree up, with Max's picture in the front. Saturday we'll push Thanksgiving away finally by going to the windows at Macy's, walk around the German Kindermarket and city tree in Daley Plaza, and see A Christmas Carol. In Scrooge, we'll see a metaphor for our feelings this week. We'll see Scrooge start as the most miserable, ornery, nasty beast of a man (waking up Wednesday). As they play goes on, we'll see him transform into the happiest, most insanely buoyant picture of joy (walking out of the play on Saturday).

Will we really be as happy as Scrooge? Will we really be able to make that transformation?

We'll try. Like every Thanksgiving, we'll try.

--Mike, Margaret & Grace

Happy Birthday Max

2009-07-06T22:48:00.009-05:00

July 7, 2008

Max would be 7 years old today, on what Grace would call, his “golden birthday.” It is so hard to believe 7 years have passed since his birth, and 5 ½ years since his death. How unnatural it is for a child not to be here to celebrate his birthday, and oh how we miss him every minute of every day. Just look at our beautiful boy.

Time passes so quickly, and it seems as if we just wrote our Thanksgiving update. So much has happened since then. Grace finished a very successful 3rd grade year and is busy with lots of different activities this summer, including dance, swim, pottery, guitar lessons, invention camp, and classes at the Art Institute. Mike is busy with work (as always) and is training for another run, despite a back and hamstring injury. We are both trying to live healthier, and exercise more. In an effort to combat grief last November I started attending an outdoor women’s boot camp. I must have been out of my mind at the time, but I have stuck with it, and though I am still the worst person there, I am making improvements, and feel much stronger and healthier. When Mike and I push ourselves, we do it for Max and Grace.

I have been very involved in my women’s club for many years now, and I joined it as a way of paying back all of the kindness that was shown to us when Max was sick. We do many community service projects throughout the area, and it has meant so much to me to be able to be a part of doing good. I have always done it in Max’s memory. I have been President for the past two years, and was looking forward to ending my term on a positive note this spring. Our world came crashing down around us when we learned a very close family friend, who was the treasurer of the group, had been writing herself checks since she began her term last year. Mike and I were devastated and heartbroken, as were all of the women in the group.

Grace and this woman’s daughter had been best friends since kindergarten, and our families spent many holidays and events together throughout the years. We are left feeling extremely taken advantage of, embarrassed, stressed, and worried. Since I brought her to the group I feel a tremendous weight for what she did. I know many people are furious with her and disappointed in me. While Grace does not know all of the details, she knows the families are no longer friends, and she is sad. Mike and I are confused and very hurt.

Why do I even mention this in an update on Max’s birthday? It is because it has forced me to take a very long look at myself. I realized that I have thrown myself and my family into all of this volunteering over the years not just to honor Max, not just to pay it forward, but because in some way I felt I had to atone for the fact that we could not save him. In fact, though it sounds completely nuts, it took until last November for me to actually realize that all of this volunteering was never going to bring him back. And while I attribute the volunteering to helping save us, and especially me, from the depths of grief, I must admit that I used it too much as a crutch. It became too much of who I was as a person, and when someone I thought was a friend destroyed what I had worked so hard on, it really took a toll, and continues to do so. My mother tells me my former friend’s actions do not negate the work that our group did over the years, it is just heart breaking for it to end this way.

So where does this leave things? Mike is encouraging me to take control over my life and start working on myself for a change. Exercise is a part of it, as is my enrollment in graduate school next fall. I will continue to volunteer, but hopefully have a healthier outlook on it. And, as always, we are trying hard to keep focused on the positive things in our lives, even as the grief and sadness try to weigh us down.

One positive will always be an excuse to entertain and to be among friends. This 4th of July we threw our biggest outdoor party ever and though it rained on us, we did hear Grace tell her friend's little brother that she was sure that her brother would be friends with him if he were alive. She spoke so matter-of-factly and confidently about what kind of person her brother would be that it was another remarkable reminder of how her strength comes from the purest, most direct, emotionally hopeful place. Spending as much time as we do with this family and with this little brother, I'm sure she's right!

While one person did so much damage to our lives, we have to think about all of the people who jumped in to help during this episode. We are blessed to have some very smart and professional friends to advise us and step in when needed. And it reminds us of all of the other people who have come to our aid over the years, and put up with the fact that we are absolutely and forever changed by the loss of our son. Whether it be a family member who took off work to spend time with us in Minnesota, a long-lost cousin who drove up on Thanksgiving and packed up our belongings to move them back home after Max died, a mom who befriended me after Grace announced to her new pre-school classmates that her brother had just died, a new friend who takes the time to learn about our experience, and especially for those who remember our precious boy - we are grateful for you. We are so grateful for the brief time we had with Max, for our wonderful daughter, and for each other.

Happy Birthday, Max. Every ounce of us loves and misses you so very, very much.

~Margaret & Mike

5 Years Ago

2008-11-25T17:00:00.005-06:00

It's that time of year again, and the past few years it has been the only time we ever write an update. We toyed with the idea of writing an update a month ago before all of the sadness settled in, but Ilife got the best of us and we never did get around to it.

The beginning of November brought with it the usual sadness, but overall we were feeling a bit more "normal" this year. That didn't last long, and we find ourselves at grief week again. It has been 5 years now since Max left us. And the 26th falls exactly as it did 5 years ago - the day before Thanksgiving. Unbelievable.

To quote another website (who quotes someone else who lost 2 children), November feels like this:

“... those deathdays are hard. Or, I should say, it is the anticipation of the deathdays that is hard. For me, the day itself is not so bad. it is the days leading up to it, as I have a sense that death is coming again and I can’t stop it. I feel a sense of dread and helplessness."

We are not usually ones to start quoting other people, but when we read this we immediately understood what she meant. In November, the memories of Max's greatest suffering come back. It really is quite exhausting. And sometimes it is even worse to remember the good times - his smiles, his laugh, because then you realize just how much you have lost.

We cannot say enough how much small gestures from friends or family mean to us, especially in November. They get us through our days. To know that he is remembered, when it seems he is being more and more forgotten, is a lifesaver. So thank you to those of you who still read this, and to those who let us know you think of Max.

Grace broke down in tears tonight at dinner when we started discussing our plans for Wednesday. Grace is going to play at her friends house while we go to the cemetery. We usually bring her whenever we go, but this day we like to keep her from our deepest grief. She just doesn't understand why something like this happens. She has been a very sensitive girl these days, and crying comes very naturally, but tonight she cried a different cry. After requesting and watching some videos of her and her brother, she felt much better. Seeing her 3 and almost 4 year old self interact with her brother on video really makes her laugh. They really were beautiful together.

We don't have any answer to Grace's question of "why did he have to die?" Because there isn't an answer. Even when we try to remind her of the positive changes in our life that have risen from the rubble of 5 years ago -- new friendships, new perspectives -- it doesn't seem enough. In so many ways we want to believe that we are "better" for having gone through such an enormous tragedy. We think we're better people to others, we think many ways we're better parents to Grace. But who knows? Our relationships with others are certainly affected by the layers of grief that are always covering us, no matter how transparent they may seem. Our parenting of Grace comes with an inevitable weight of over-protection, over-sensitivity as we try so hard to make sure that the one child who remains is never hurt again.

We are members of a club whose membership no one wants. Even five years out, when work is a normal day, and school is a normal day, and all of the minutia of everyday life is filling all of the little cracks of grief, the dam can break suddenly when a memory comes rushing to mind. People who have lost a child know this, people who have watched great suffering know this. When we are with these club members, there is a shorthand, an ease to understanding. We are thankful for the friendships that have been made through mutual sadness, however strange that sounds.

Since we last wrote an update life has been very busy. A few days before last Christmas we had some very messy, very expensive plumbing problems with our old house, followed by some very drawn out, expensive heating problems. Luckily things on the home front have settled down. We will soon celebrate Grace's 9th birthday, and our 13th wedding anniversary. Mike is busy with work as always, Margaret is busy volunteering, and Grace is busy with everything! We are so very grateful for each other and for everything we have.

This summer Max was featured in an ad for the Ronald McDonald House charities on the back of the USA Today sports page. What a feeling it was to see his picture in print like that. We hope that his story continues to inspire people to help others in need, just as his smile and his struggle keep inspiring us everyday.

And we cannot end this update without mentioning a very special, very beautiful 9 year old girl. Sweet Susannah White, daughter and sister to our good friends Amy, Klane, and Madeline, joined Max in heaven this past July. Her fierce battle with Hurler Syndrome and complications from transplant, her determination to live, and her absolute love of life will never be forgotten. The same weekend of Susannah's funeral, Mike travelled to New Jersey for the burial of his grandmother. The emotions surrounding the passing of a 9 year-old and a 90 year-old were very different, but comfort came from knowing Max has the best, most lovely playmate now, and is probably sneaking candies from the dish of the greatest storyteller we knew.

Best wishes for this Thanksgiving and the holidays.

Margaret, Mike, and Grace

4th Anniversary / Thanksgiving

2007-11-20T21:43:00.000-06:00

It has been four years now, four years since we lost our baby boy, heard him laugh, saw him smile. Where has the time gone? Sometimes it feels like only yesterday, other times it feels like a million years since we've held him in our arms, or kissed his baby soft skin. We have worked really, really hard at life since Max left. We've worked hard to honor his memory and to keep on living. Fall is especially difficult, and despite all of the efforts to keep the sadness away, grief is a powerful force, and it manages to creep in. Halloween parties, volunteering, meetings, play dates, get-togethers, and work all serve as distractions, and we try to pack our fall with activities. Everyone thinks we are psycho for having bought and wrapped, and even shipped many of our Christmas gifts already, but we do it because we have to. Because if we sit around for too long with nothing to do in November, it all comes crashing down around us. This week, grief week, there is no keeping the sadness at bay.

People keep asking what we are doing for the Thanksgiving Holiday. We just say, "staying in town, what are you doing?" What we would love to say is, " Grieving. Fighting hard to survive what should be a joyous holiday. Trying not to panic when we see everyone at the grocery store loading their carts for Thanksgiving dinner. Putting on a brave face for our daughter. Reliving our son's last days, the sound of his very last breath. Remembering the look of sheer helplessness and terror in our spouse's eyes as we watched Max slip away, giving Max a bath after he left us and dressing him so that his sister could come over from the Ronald McDonald House and say goodbye, watching Grace climb into bed with him so happy that he was no longer connected to tubes, and try and stick his pacifier in his mouth." That is what we would like to say, so that people know just how hard this is.

Without a doubt we are grateful this Thanksgiving and always. We are probably more thankful than most people. To have survived this, to have such a wonderful daughter and spouse, to have had Max even for such a short time, to have managed to create a new life for ourselves - these are all things to be grateful for. But it will be hard, harder than anyone can imagine unless they have gone through it themselves. It is true that as time goes by, the day to day gets easier. We just have to accept the fact that Thanksgiving is always going to suck. This holiday weekend we will take Grace to the movies, visit with friends, and shop. We will get through it like we always do, but oh how we miss our son, and how our hearts ache for him.

What we miss today and always:

Happy Thanksgiving,

Margaret, Mike, and Grace

5th Birthday

2007-07-07T00:10:00.000-05:00

Today is 7/7/07 and the news has been reporting what a good luck day this is, how people have picked this day to be married, or at least to buy a lottery ticket. For us it doesn't feel very lucky, it's Max's birthday, and his 5th one at that. The 5th birthday is really the first "big" birthday, loaded as it is with the thoughts of kindergarten. When Max was sick it was hard to imagine him as a 5 year old kid because he surely wouldn't have been like any kid I could see around us. But since he has passed away, we have seen Grace pass through the big 5, and as she began school we have seen plenty of little boys grow and turn 5 as well. None of them have the complications from Hurler syndrome or from stem cell transplant, but they run around with their big sisters and they see Grace and they show us a small sign of what might have been. Who's to say what kind of 5 year old Max would have been? But it sure gets your mind racing when you see the kinds of boys who chase Grace around the playground.

Grace still has a hard time processing the unfairness of being an "only child" when all of her friends have siblings. While the advantages of such a fate seem obvious to us in both goods (stuffed animals, art supplies) and services (personal chauffeur, chef), these pale in the thought of what it would be like to have a playmate in the house every day. As she has grown, she does seem to be slowly accepting her situation, but that doesn't mean she doesn't push us. In time I'm sure what she is acting out is the same feelings that we have. She's not really jealous of anyone else, she's just sad for her loss. She doesn't really want a baby in the house, she just wants to be with her baby brother again. This, I believe has nothing to do with being an "only child" and everything to do with being the "only child left". Still, when she is truly sad about her life, it can be devastating.

Last week we were interviewed on camera for a video for Ronald McDonald House Charities. In between interruptions for audible airplanes, trucks, and an occasional premature firecracker we tried our best to tell our "story." We have a mostly accurate account of the day-to-day process of transplant, thanks to this and our previous website. And we have a photographic record of our son that still contains some of his very best smiles and memorable moments. But talking about our son, side-by-side with lights shining and with camera make-up on is another story altogether. In some ways it is performance, we are storytellers, and while we very much can recall images and moments as painful and as real as if they are happening in the present, there are other facts that remain somewhat elusive under the pressure of an "interview." I'm not sure when (if ever) there will be a time when we can talk about our son in a way that is effectively quotable for this sort of thing. What we said, and how we said it seems like a blur. Writing is always erasable, and spell-checkable, and for that, I have been always grateful. But speaking is live, unscripted, and once the words are out they have taken on meaning, and we can only hope that the editors of the video can find meaning to portray our son in a light that both dignifies him and reflects positively on the Ronald McDonald House. It is truly an honor to be asked to tell Max's story. In talking about our son, we are keeping his story alive And if that story can reach an audience and perhaps inspire others, he will have given a wonderful gift.

After we were finished they interviewed Grace in her bedroom. She was able to easily conjure up stories based on pictures I had shown her in the morning, but when pressed was a little foggy on some things that seemed so very important only 3 and half years ago. But of course, for her, that's half a lifetime. She mentioned her friends from the house, Rileigh, Rowan, and Kendall. She told the interviewer that Rowan was from Egypt and Kendall had died. They mostly asked her about what it was like to live at the RMH and she did her best to remember many of the good times. She even told them a hospital memory, when she was leaning in close to Max's bed and fell off a high stool and while falling said "I'm OK" before she had even hit the ground. She was very poised on camera, and made us very proud.

As in the video we made a few years ago for the RMH in Minnesota, they took some "B Roll" of us just walking around the yard and watching old videos. Grace was cracking up at herself, how little she was and how silly her brother was trying to climb the walls of our room. For all of his complications, he really was a little spark plug of a kid and he was so determined! So much of that is in Grace too, of course, but to see how far he could "walk" along walls is still very inspiring. As Margaret likes to say, he had "fire."

The night before the interview we cooked a luau dinner for our local RMH and we were touched by some of the compliments we received for our decorations and for our food. On the video Margaret explained that she first called our local RMH two weeks after Max died and they must have thought she was crazy. But it remains our most direct way to give back to the people that helped us so tremendously, and to try to help families that are struggling through the exhaustive care of a sick child.

And yesterday we received a small card from the RMH in Minnesota, our true home for the 5 months Max was in the hospital. It told us that he was being thought of, and it was a simple gesture of kindness that we have come to treasure, though certainly not expect. I can imagine that with a house so large, they have to send cards for nearly every day of the year. With all of the other things going on, and all of the kids who need care now, it means an awful lot to be reminded that we still have a place in the minds of those who cared for us.

Since our last update was about MPS Day, it seems like a long time since we gave our family news. Grace finished first grade like a rock star, adding new friends and great families to her already large social circle. She remains active in gymnastics and ballet, and has added swim, camp, and a couple art classes to keep her busy this summer. She just lost her first front tooth, another sign that she is growing up way too fast. Margaret continued her work in Grace's school and in her women's guild, even telling our story as a way to get her group involved with RMH. She just got back from a Vegas weekend with Grannie and Aunt Katie, where she managed to win a small amount of money on a version of Wheel of Fortune. In between lots of busy work weeks, I had a fun trip to NYC for work to support one of our designers who won an award and was able to see my old friend Jeb. When not trying to out-shred the other Oak Park/River Forest Guitar Hero parents, I've kept up with running and have even enjoyed myself in an 8K and a 5K, with a 10K coming in August. In addition, we had a visit from Grandma Chick in January, Aunt Lisa and cousin Viv in April, and Aunt Dana, Uncle Geoff and all the Maryland girls in June. For Spring Break we took on Walt Disney World for the first time and had a great week. Whew!

Many thanks for the support this year, and may all your lottery tickets be winners.

--Mike, Margaret & Grace

International MPS Day

2007-05-13T21:34:00.000-05:00

This Tuesday, May 15, is International MPS Awareness Day.

Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials. Individuals with MPS have a dramatically shortened life span.

As most people know, our son Max was born with MPS 1 - Hurler Syndrome, and like so many other children born with this disease, he passed away from complications from a stem cell transplant 3 1/2 years ago. He died far too young, and we have suffered far too much. Tuesday is a day that many families like ours will be taking a moment to remember, recognize, and rejoice in each other. We ask only that you consider this email a reminder of this day, and that MPS disorders are just one of far too many diseases that are too rare for cures to be funded properly. "Awareness" means an increased understanding of the reality and presence of something otherwise unknown. We had not heard of MPS or Hurler Syndrome before our son was born, and we certainly had no idea that our beautiful boy - so pure and full of love - would be gone so soon.

Perhaps you will have a moment this year to make a contribution to a charity of your choice. Please consider the National MPS Society. It is a grassroots group of families who have created a community to engage with doctors, pharmaceutical companies, and each other to work continually towards future cures and current quality of life concerns.

To make a donation or to learn more, please visit:
http://www.mpssociety.org/

Thank you for your support,
Mike, Margaret & Grace Ciacciarelli

3rd Anniversary

2006-11-21T21:53:00.000-06:00

Nov 2006

It is hard to believe a full year has gone by since we did a proper update. The last anniversary of Max's death was truly an exhausting experience. Last year at this time we were feeling the depth of our loss while witnessing the rest of the world moving on. Rationally we know that the world keeps going even after such a light has been taken from it, but during the depths of our grief it sometimes feels unbelievable, unnatural, and almost insulting that it does. Time should stop, shouldn't it, at least for a day, to recognize the loss of our son? And yet, even we go on, and we find ourselves at the 3 year anniversary of Max's death. Grief week has begun.

Something about the change in weather as fall begins always brings about memories of Minnesota. Things we haven't thought about or talked about in months and years come back to us - a certain nurse will come to mind, moments with Grace in Max's hospital room will be remembered. Even Grace is reminded of her time there. Just when we thought she was starting to forget it all, she remembered the most obscure game she used to play at the RMH. The feelings of helplessness as we watched Max get sicker and sicker come back as well, and the fear and panic. With the best intentions, this week many people will encourage us to "be comforted by the good times we had with Max." The truth is, remembering the good times is almost more painful than remembering the bad. It is in the memories of the good times that we realize how great our loss really is, and when we miss him the most. We also miss what life could have been with him, what we had planned on it being. We mourn that Grace will never have a sibling to play with or confide in. We mourn the loss of our old selves, and the parents we used to be. Without a doubt we have tried our best to be good parents to Grace and partners to each other, and we are proud of how well we have done, but we can't help but wonder what we would be like without the weight of the last few years.

This year Grace has undergone a transformation in her understanding of and reaction to what has happened to her and her brother. She has eased up a great deal on the incessant asking for a brother or sister, though she still points out every cute baby that comes into her view. Much to our sadness, she has also chosen to keep information about her brother private from friends. At the beginning of first grade she was chosen to be student of the week. As part of the assignment and oral presentation she had to list her family members. She chose not to list her brother, which just about broke our hearts. She argued that she was afraid she would cry in class at the mention of him. She was also afraid her classmates would not believe her, and would ask too many questions. It was very painful to hear her say this, but at the same time we understood her desire to not feel so different. At times we too feel the uneasiness of others at learning our situation, and wish to be "normal." As most disagreements with her (the master negotiator) end, we compromised with her and she placed a star on our family picture to represent Max.

Grace is doing very well in all other aspects of her first grade life. Ballet and gymnastics continue along with the addition of Brownies this year. She also completed a season with the Soccer Sisters and a 2-4-2 record. Mike was the ref for almost all games, and remained (mostly) impartial to Grace's team. She is doing really well in school, and if she isn't at an extracurricular activity or on a play date, Grace can be found watching SpongeBob with her father, in her art room, or with her nose buried in a good book.

Mike continues to do well at his job, and has taken up running, with his first 5K race on Thanksgiving day. Grace and I will be there to cheer him on, and after we will head over to our favorite restaurant to stuff ourselves. With Grace in first grade, I am adjusting to an empty nest. I started off the beginning of the year full of home improvement ambition, but as time has gone by I am missing the company of my girl more and more. She grew up way too fast. I always thought I'd have Max at home when Grace started school, but now I find myself with too much alone time. I am volunteering at school and with my women's club, and am still cooking at the Ronald McDonald House, but still really feel like I need to fill my life with something else. What that is I really don't know, and am feeling extremely lost. A few moms have (innocently) commented on how wonderful it must be to have so much free time, but I'd much rather be busy chasing my son around than have extra time to complete tasks or read a book. I'd much rather have a home cluttered with toys than the neat and tidy one I have now. I am really hoping something will come to me and I will have the guidance to know what to make of this new phase of my life.

Mike and I had our 10th anniversary in February. We met in college many years ago in Italian class, and what better way to celebrate than to travel to Italy! With Grace and Granny in tow we headed to Rome to visit Margaret's sister Katie (studying there for a semester) for 10 days. We rented an apartment, visited all of the local attractions, walked a lot and ate a ton! It was the trip of a lifetime, and we were all very sad when it was time to come home. Grace asks almost every week if we can go back to Italy. This summer we attended a family reunion on the east coast, where Grace got to visit with her cousins. We ended the trip with a stay in NYC, where Grace got to attend her first Broadway show, The Lion King. We also had a fantastic trip to MOMA, and got to see the work of some of Grace's favorite artists. A few weeks ago we hosted Grace's annual Halloween party, and had a record attendance.

Best wishes to everyone this holiday season. We are very thankful for those who still support us and think of Max.

Margaret, Mike & Grace

National MPS Awareness Day

2006-02-23T14:19:00.000-06:00

Last year the U.S.Senate passed a unanimous resolution, officially making February 25 (Saturday) National MPS Awareness Day.

As most people know, our son Max was born with MPS 1 - Hurler Syndrome and, like so many other children born with this disease, he passed away from complications from a stem cell transplant. He died far too young, and we have suffered far too much. Saturday is a day that many families like ours will be taking a moment to remember, recognize, and rejoice in each other. We ask only that you consider this email a reminder of this day, and that MPS disorders are just one of far too many diseases that are too rare for cures to be funded properly. "Awareness" means an increased understanding of the reality and presence of something otherwise unknown. We had not heard of MPS or Hurler Syndrome before our son was born, and we certainly had no idea that our beautiful boy - so pure and full of love - would be gone so soon.

Perhaps you will have a moment this year to make a contribution to a charity of your choice. Please consider the National MPS Society. It is a grassroots group of families who have created a community to engage with doctors, pharmaceutical companies, and each other to work continually towards future cures and current quality of life concerns.

If I may be allowed to quote from a press release from the MPS Society:
Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic disorders that cause cells to perform improperly, resulting in progressive damage throughout the body, including the heart, bones, joints, respiratory system, and central nervous system. The diseases are rarely apparent at birth, but the signs and symptoms develop with age as more cells become damaged. As the damaged cells accumulate in the body, the body shuts down, eventually leading to a premature death. At this time there is no cure.

As the original sponsor of the resolution, U.S. Senator Lindsey Graham, R-South Carolina, said, "It is a parent's role to make sacrifices for their child; yet, for the parents of a child diagnosed with MPS, the sacrifices are exceptional. I have had the opportunity to meet with a number of parents of MPS children. These parents exhibit amazing hope, love, grace and humor that can often mask the many trials they undergo in caring for their children. My staff and I are constantly impressed at their ability to advance their cause while also selflessly caring for their children."

Additional information is available online here:
http://www.mpssociety.org

Thanks for your continued support,

Mike, Margaret & Grace

2nd Anniversary

2005-11-23T00:52:00.000-06:00

While Saturday the 26th is the calendar anniversary of Max's passing, we will forever feel the weight of his loss today, the day before Thanksgiving. At this time of reflection and giving thanks, we are compelled to measure the depth of his loss with the joy of the memories he created in his short time with us. Margaret asked me the other day if I thought he forgave us for all that happened to him. Nothing was his choice, of course, all decisions were our own. And while I believe Max never grew old enough to cast blame, I too hope that when the time comes to see him again, he will understand we only wanted the very best for him.

The second year has been harder in many ways than the first. The first year is shock: "I can't believe this is the way it is." The second year is just the opposite: "This IS the way it is." The reality hurts more than the disbelief. We have found ways to push away the sorrow, often burying ourselves in house projects or just focusing completely on Grace. But this time of year (known quite seriously as "Grief Week" around here) puts the emotions front and center. We are put back in his room, back on 4A, back at the Ronald McDonald House, back at the funeral parlor, back in our house alone, without him.

Our lives manage, day by day, but there are moments, sometimes only for a few minutes or two, where it is clear that no one else can really imagine what we're going through. For every kind gesture where someone mentions his name, there are far more parents meeting us for the first time who ask us if Grace is our only child. Yes and no, we tell them. We had another, but he passed away. She's the "only child," the only child left. Oh my God, they say. "I had no idea." One never knows the private grief of another, and while they can not imagine our pain, from our perspective, we can not imagine their good fortune. And that opens the door to what is fair. There are parents unable to have children. Surely this is unfair. Perhaps they are jealous of the joy we have in our daughter. When they see us out with our beautiful girl do they feel the way we do when we a big sister help her Mom with her baby brother?

Grace continues to be our light, our glowing shining light. While no one wants to read me complaining about what is fair or not, the truth is we are faced with a reality that makes us ask the question every single day. Grace wants to know why she can't have a sister. She wants to know why we don't just have another baby. She understands the genetics, and she would never wish suffering on anyone, but doesn't understand the inequities of not being given the same thing that all of her friends have been given. We should be happy with what we have. But that would be so much easier if what we have was what we had, but it's what we have left.

Faith? Should that get us up and out the door? Perhaps. I am jealous of the true believers, those whose faith is blind. I am jealous of their peace. But I have a hard time reconciling a benevolent God with a wife in so much pain and a daughter so lonely. "God must have had a place for him" they say. What place is better than in his mother's arms? Or next to his sister, laughing on the floor? "He's not sick anymore," they say. Well why was he sick at all? Even the priest at his funeral had to admit that there is no explanation for so much suffering in a soul so pure. Two years ago this week there was a tube that was pulling up blood and the lining of his intestines while dialysis machines cycled his blood and his skin scabbed over. And yet I haven't given up on heaven, if only because I won't let myself. It's the only part of faith hanging onto, the part that predicts future reunion.

So we send our daughter to public school, happy that she doesn't have to believe in something that doesn't have all the answers, while at the same time admitting that neither do we. How should we act? How should people act around us? We've seen people change when they hear "our news." Soon after Grace started kindergarten I received a call from the school social worker. I asked him about how to deal with delivering our news to other parents. He warned me about becoming part of a "pity party." He warned me of a kind of group reaction of shared gossip, under the guise of shared sympathy. He warned me that just as quickly as people will attach themselves to us, they will leave us. We have seen this on many levels, often times choosing to not share our grief or our story. Maybe that's why so many people seem to think we must be "over it." Far fewer people checked on this year. Maybe it's because we haven't been updating (who's still reading?) or maybe it's because people have moved on.

There is no timetable for grief. We will never be "over" our son's death. But we will move forward. I am so very proud today to be with my wife and daughter and to have a future with them. Pain this deep has destroyed marriages and/or has rendered one or both parents unable to take care of their children. But we are as strong as anyone can be in our situation. That doesn't always make us easy to be around. But we are buoyed by our love for each other, by the knowledge that there is goodness in the world, by the small feats (getting out of bed every day) that when added up are in fact great accomplishments. I am proud that when called to speak about our son at his funeral we both were able to speak so proudly. But I'm even more proud that 2 years later we still all climb in bed at night to read stories.

Grace is deserving of an amazing update all about her, but this day is for Max, and I've vented long enough.

So I will end this note with lyrics from a Mason Jennings song that's been playing on our "painting stereo"

If this darkness came from light
then light can come from darkness, I guess

Happy Thanksgiving,

Mike, Margaret & Grace

Summer Update '05

2005-07-02T01:00:00.000-05:00

As usual, it has been very long since our last update. We often struggle with these updates, as they can at times be very exhausting. We agonize over what we write, as it leaves one very vulnerable to others' judgment . To be honest, we aren't sure how much longer to continue writing. But for tonight, we will write, as much has been happening in the Ciacciarelli household since January.

February was a busy month, and we celebrated our 9th wedding anniversary. This year it was a little easier to celebrate
than last. We went out for a nice dinner and movie, and before we left Grace slipped us an anniversary card which read "I will miss you guys." She was jealous not to be included on our date. The next day we took Grace to Wisconsin for a day of skiing (her first time) thanks to Aunt Peeps and Uncle Charlie. Most of the day was spent picking her up off the ground. She was getting quite frustrated and Mike was getting quite tired when we finally decided to just let her go down the mountain. She made it down the bunny slope one time all by herself (when she started going too fast we had her plop down on her bottom to stop). It was nice for Mike to get on skis again like he did when he lived in New Hampshire, and for him to share his old hobby with Grace.

We had the opportunity to watch Grace's cousin Vinny for a few days at our house in February. Grace was more than happy to act as her younger cousin's unofficial babysitter, and to have a playmate around the house so much. She truly loves her cousin (just one month older than Max), and often asks if he can come and live with us. Grace continually asks for a brother or sister, which just makes our hearts ache. She is very bright, and we think she understands the genetics of why we cannot have another child, but is a master negotiator, and just will not let it go. "Maybe the next baby won't die," she says, and even suggested taking her ballet teacher's baby once it is born ("she has two other kids"). Her desperation is apparent, and our situation sets her and us apart from everyone in every way. Almost everyone she knows has a sibling. She recently said to me out of the blue, "I am mad at God because he made my brother sick." Her grief and understanding of our situation is always evolving as is ours.

Our desire for Grace to be around more kids, and our determination to give our only child the best opportunities to succeed prompted us to make a very big decision. Just a little over a month ago we left the only home Max lived in and moved one town over. The decision to move was very hard, and very complicated.

The two towns neighboring ours both have excellent school systems, and being that Grace is very bright we wanted her to have the chance to attend those schools. Though it's a financial stretch to move to these towns, their proximity to Mike's work and to friends who already know our story made them our best option. We made it clear to our realtor, however, that it would take a very special house to get us to move from the home we loved. After some looking we found what we thought was that house. We made a bid, and to strengthen our offer, put our house on the market. Well, thanks to an unscrupulous realtor (not ours, the seller's), we lost the house we bid on, and within less than 24 hours of putting our house up for sale our house was sold! I guess all of the work we put into it paid off, and you would have thought we were excited about selling our house so quickly. We weren't, and instead immediately regretted our decision. But, the house was sold, the buyers wanted to close quickly, and we still wanted all of the same things for Grace so we went on a frantic search for a house.

In the middle of all of this, we took a very nice trip to Maryland to see Mike's sister Dana and her family for Easter. His sister Peeps came to visit as well, and Grace "totally" loved playing with her cousins and helping take care of her littlest cousin Viv. The trip was too short, and we were too distracted with the idea of being homeless, but we had a really good time.

Once we got home from our trip, as fate would have it, Margaret ran into a friend of Mike's from a previous job. This woman had helped us find our apartment when we first got married, and put us in touch with the person we bought our first house from. Wouldn't you know it, her brother was being relocated and needed to sell his house right away. To make a long story short, we are in his old house right now! It is very old, very crooked, and needs a lot of work (all of which made it more affordable for us to buy). We have our work cut out for us here, and have made many trips to the paint store already (the clerks know Grace by name). Grace and Max's pediatrician happens to be our next door neighbor, which is nice, and it is on a really beautiful street directly across from the school Grace will attend. We went to the open house and she made herself right at home in the kindergarten classroom.

The days before the move were very difficult, and the emotions were often at times very powerful. It is almost too hard to believe that we cannot take our son with us to our new home. To move to a place with no reference to Max, no memory of him is very sad. Not to be able to sit in his room anymore and remember him sleeping in his crib is very hard. The night before we moved we packed Max's dresser, where we had been keeping some things of his we like to look at (the hand prints and molds we made the day before he died, his pacifier, jacket and Super Boy outfit ...). It was very emotional to say the least.

Of course we wouldn't sell our house to anyone who wouldn't let us take Max's tree and rose bush with us. It simply wasn't an option to leave them behind, so thanks to the help and very hard work of Uncle Vince and our dear friends Chris and Craig and Marko and Tunia the tree and bush came with us to the new house. Despite the stress of moving and the drought we are experiencing in Chicago, they are doing quite well. The area of the yard they are planted in looks quite pathetic though, so Mike and I will be spending Max's birthday (July 7th) sprucing it up.

In the days just prior to the move we celebrated Mother's Day and Mike's birthday, and of course we recently celebrated Father's Day. On the days we honor parenthood it is especially painful not to have our son with us. Grace, however, really loves those days and as always brightens our moods.

We are settling in to our new home, working our tails off painting and decorating as we prepare for the arrival of Mike's sister Dana and her family for the 4th. After they leave we will be visited by some transplant friends who are stopping in Chicago on their way to MN for check ups. Last week we met up with our RMH neighbor and Grace's friend Dustin. He looks so wonderful, now 3 years old and cancer free! Grace really enjoyed playing with him at the park and we enjoyed catching up with his parents. Besides visiting with friends and family Grace is busy this summer with t-ball, swimming and will soon start gymnastics. She finished dance a few weeks ago with a dance recital performance of Petticoat Junction. She is quite a little lady, really into fashion and friends these days. She is a challenge, a wonder, and a joy.

We hope you all have a safe and happy summer.

Love,
Margaret, Mike and Grace

Tax Day aka Diagnosis Day

2005-04-15T23:27:00.000-05:00

To most people, April 15th is the day their tax returns are due. To us, April 15th marks the day when our lives changed forever. Two years ago today Max was diagnosed with MPS. We will never forget looking at his smiling face as the doctor told us the news. We will never forget the anguish we felt knowing he'd probably only live 5-10 years. Little did we know that he'd be gone only 7 months later.

It's been very hard this week as this anniversary approached. We miss our son more and more each day, and Grace deeply misses having a brother. It is still all so unbelievable to us, and yet all too real.

Much has been happening since we last wrote, but we will save all of that for another update. Tonight we just want to remember our sweet Max.

New Year Update

2005-01-16T22:47:00.000-06:00

Our last update ended right before Halloween, so I guess we should begin there.

Halloween was filled with LOTS of activity and fun for us, especially Miss Grace. She was beautiful as Sleeping Beauty, and had a wonderful time at her school party, cooking at the RMH and at her own Halloween bash at our house. A highlight was Mike being wrapped in toilet paper as part of the game "Turn a Daddy into a Mummy." She especially loved meeting her new cousin Vivienne that weekend. Grace has such a love for babies and other children, and it showed as she helped her Auntie Peeps care for Viv. Amidst all the other partying, we managed to also squeeze in a Ralph's World concert, one of Grace's favorite musicians.

The festivities of Halloween helped keep our minds off of the anniversary it
marked: one year prior Max had become extremely ill, and it was the beginning of the end of his life. Once the excitement had died down, and the company had gone home, reality set in once again as we began the month of November.

November was a month of remembering and reflecting. At times we grieved harder than we had since Max died, other times we felt pride and relief that we made it through the year. The impending threat of Thanksgiving week loomed over us, as we wondered and worried how we would handle the
anniversary of our son's death. As the world around us worried what it
would be serving for Thanksgiving dinner, we were worried that the anniversary would mean an end to the significance of each day. After all, every day for the first year we could remember where we were the year before, and how our son was with us. After the anniversary, each day now
means that it has been more than a year, and it seems too far away. In
April he will be gone longer than he was here, and that too, is an anniversary of sorts, and a reminder of the awful cruelty of his fate.

One of the harder moments involved bringing in a family photo for Grace's class Thanksgiving bulletin board. Looking through old photos during an already tough month brought back so many memories and so much grief. Max was such a beautiful and happy boy, how did all of this happen to him? To look at ourselves in those photos is to look at different people - so young and naive, so completely unaware of what was about to happen to their child and their family. What made the assignment extra hard was that we have only a couple of pictures of the four of us together, and that there will never be an opportunity to take another family photo again. In the years to come as Grace grows older and is asked to bring in family photos, we will no longer be able to present a picture of her at age three with her brother, but will one day have to turn in a picture of only Grace and us.

While the date of Max's death (Nov. 26th) was the day before Thanksgiving, this year it fell on the day after. So it was almost as if we recognized two anniversaries. This year we spent the day before Thanksgiving in Grace's classroom, at a "Thanksgiving Feast" of pumpkin pudding, muffins and popcorn that the children made. Grace was dressed as a pilgrim, and we watched their Thanksgiving presentation with joy and sadness. The bulletin board was a main attraction, and a reminder to us of what we had lost. Afterwards we went home where we found numerous packages and cards on our front porch. So many people remembered us, and most importantly remembered Max, that it truly touched our hearts and lifted our spirits (or maybe that was the candy elevating our blood sugar?).

Since we did not know how we'd handle the holiday we opted out of a big family Thanksgiving dinner and instead made reservations for the three of us at one of our favorite restaurants. The morning was a very emotional one, and we stopped at the cemetery on the way to dinner. Once there at Max's grave we felt much calmer (as we always seem to do), and we headed off to celebrate Thanksgiving, much more for Grace than for any other reason. We thought the restaurant would be somewhat of a lonely hearts club, but it was actually very crowded and festive. Our mood improved (especially after so much yummy food and dessert), and after dinner we spent some time with family at Margaret's sister's house. There Grace got to spend some time with cousins and friends, who were helpful in shielding her from our deepest sadness. Auntie Beth was kind enough to let Grace sleep over and we headed home to be by ourselves and our grief.

The next morning was the actual date of Max's death. Most years we'd be out shopping at 6 am at the crazy day after Thanksgiving sales, this year we were buried in grief. We got ourselves together, stopped at the flower shop for some arrangements for Max's grave, and headed to the cemetery to visit our son. Afterwards we picked up Grace and once we saw her we started to feel a bit better. It is amazing what a light Grace is in our lives. By the end of the day we even felt up to taking Grace to the Holiday Lights celebration at the zoo. We have literally dragged ourselves through this year, for Grace and for each other. The desire for her to have a good and happy life has forced us to face situations we would not have faced, and do things we would not have done to make ourselves feel better.

Though hard, this December was easier than last. We were so numb last year we barely remember what we did. This year we were actually able to enjoy ourselves. Grace seems to have developed her mother's love for shopping, and so we had many enjoyable trips to the mall with her to buy special gifts for family and friends. She also enjoyed the holiday windows in downtown Chicago, a Christmas party at school and seeing Santa at Mike's work. December was another busy month for our girl.

We were scheduled to cook at the RMH Christmas Eve, but thanks to a triple case of strep throat in our house, we were unable to go. Luckily, Margaret's siblings took all of the food and decorations to the house and did a great job. We were disappointed to have missed an opportunity to honor Max's memory in person, but we know that his spirit was felt. Thanks to Margaret's mom, sibs and cousin for their help that night. By Christmas day we were all feeling much better. As usual, Santa was very generous. Grace attacked the presents with gusto, but even she pooped out at the end, and we had to help her open the last few. We had a nice quiet dinner with Margaret's family that evening.

Grace was looking forward to New Year's weekend almost as much as Christmas, due to the arrival of her cousins Anne, Ems and Veronica from Maryland. It was amazing to see her so entertained without us. Grace has always been independent, but since Max's death we have been her main playmates. With the girls around it was almost as if we were invisible. We had a blast New Year's Eve, letting the girls stay up until "New York midnight," banging on pots and pans, blowing noise makers, and screaming when the ball dropped. We were all very sad to see them return home.

All of the excitement of New Years must have taken its toll on Grace's recuperating body, and she caught a nasty cold soon after, followed by the stomach flu. You would think with our experience we'd have germ control down pat, but despite all of our antibacterial wipes, we have had a lot of sickness this year. It is hard not to panic when Grace gets sick, and trips to the doctor bring back memories and much anxiety. Grace seems to get anxious herself at the mention of illness. Recently she told us that she worries about dying, but knows it would be okay because she would be with Max. We have to remind her that she does not have Hurler Syndrome like her brother. Luckily, Grace is now feeling much better just in time for her Birthday!!!!!!!!

Yes, our little girl is turning 5 this week, and as we type this we have so many good memories of the awesome party we had for her this weekend. She was the host of about 20 kids at a children's gym and everyone had a fantastic time. As we drove away, Grace said, "Today was the happiest day ever." Of all the things you want to hear from your kid after you throw them a party, that's about the best.

We cannot believe how time flies. Birthdays have always been important to us, but having only celebrated one birthday with Max, they have even greater meaning to us now. We simply cannot understand parents who do not have parties for their kids. We are so blessed to have Grace, and so proud of her. She is a miracle to us. Her pregnancy was difficult and scary, and she was born premature. She could have very easily been born with Hurler instead of just being a carrier. And despite all that she has been put through the past few years, she remains the smartest, prettiest, friendliest, most social, adaptable, and wonderful child in the world. Can you tell how much we love her? She is our Amazing Grace.

Well, we have many post-party thank-yous to write, and also some exercise too. Yes, that is right, we are trying to work off some of that grief weight. With a Christmas purchase of a treadmill (or as Grace calls it, the Dread Mill), maybe we will be a bit smaller the next time we see some of you.

As always, thanks for checking in on us. Hug and kiss and take lots of pictures of your loved ones!

-Mike, Margaret and Grace

Almost 1 year, RMH Gala

2004-10-23T17:28:00.000-05:00

It has been such a long time since we have updated, and we apologize to our loyal readers. We are not sure just how many people still check up on us, and sometimes we wonder if we should be writing this journal any more. But then we remember that this diary will one day be read by Grace when she is older. Hopefully it will help her understand who her parents are and why they are the way they are.

The past few months have marked the anniversaries of so many important dates for Max. August 14th was the anniversary of Max's transplant. We were filled with such hope that day, and were so grateful for the second chance at life being given to our son. It was just 14 days after transplant that Max became very ill. We have been going back into our journal and reading our entries from last year. It is all so unbelievable to us, and sometimes feels like it was just yesterday we were in his hospital room with him. Our most difficult times are ahead of us, as we remember Max's sickest days. On November 26th it will be one year since he died. God we miss him so very much.

Since Max's death we have tried very hard to keep ourselves busy. Grace, of course, helps out with that. A very large part of us is proud that we have kept going, kept living life for each other and for Grace. We have never spent a day in bed crying, sent Grace to someone's house because we were too emotional, etc. Sometimes we wonder if this has been the smartest thing to do. The weight of all of it seems to be settling in, and we are feeling very tired. I guess it is only to be expected. Here is a recap of just what has been keeping us busy ...

Mike's parents came for a visit in August. Grace had a great time with her Grandma and Grandpa Chick, especially during their visit to the newly opened Millennium Park in Chicago. Hopefully we didn't wear them out too much. In an effort to keep ourselves distracted (and because it was badly needed), Mike and I decided to remodel our kitchen. The Ciacciarellis' visit came in the middle of the messiest part. They endured the less than perfect accommodations, and helped out a lot with the work. While the Ciacciarellis were in town Margaret's mom and sister decided to throw an early surprise birthday dinner for Margaret. It was a nice party that unfortunately ended badly. Margaret's mother fell down one step and broke her leg so bad that we had to call an ambulance to take her to the hospital. She had to have surgery, and has been stuck on her couch for weeks now.

Margaret's actual birthday in September brought back many memories of Minnesota. The day before she turned 30 Max went on the ventilator a second time. We never believed though that he wouldn't be here when Margaret turned 31. Like last year, Margaret's family tried very hard to give her a great birthday, and they did. Margaret said it was hard to feel too sorry for herself when Grace was so thrilled to celebrate. Grace just exudes a love for life.

Speaking of Miss Grace, she has been very active as usual. She started 3 day preschool as well as ballet and gymnastics. Grace caught her father's Olympic fever this summer, and after catching her trying to do some dangerous gymnastics moves, we decided she would benefit from some real instruction. She absolutely loves the class, and as she said the other day "It is just so much fun!" She has the same preschool teacher as last year, which helps as she is well aware of our situation. We were a little worried about the fact that her best friend would not be in her classes with her, but Grace seems to have adjusted well. It is awkward at times as Grace meets and wants to play with new kids. We always stress about the appropriate time to bring up the topic of Max, as we don't want anyone (especially kids) to be freaked out by our experience. So far we haven't had any problems, and the moms have been very understanding.

Grace continues to talk about and miss her brother. Her teacher even told us that Grace brings up Max about once a week. We are not sure how much she really remembers, but she often looks at pictures of him and asks to watch home movies of them playing together. Several of her friends have had recent additions to their families. This has brought up many questions for Grace. One day upon seeing my not-so-flat, grief-enlarged tummy Grace excitedly said "Mom you have a baby in your belly too!" (OUCH). I had to give her a mini genetics lesson on the spot. She is very bright and you can see her trying to work things out in her head. She recently asked me whether her best friend's new baby sister would need a transplant too. She sighed a huge sigh of relief when I told her no.

This summer we were contacted by the Ronald McDonald House in Minnesota and they asked us to be the guest speakers at the house's 25th Anniversary Gala. We were touched and honored to be asked, and of course said yes. It is always a good feeling to talk about Max and to share his story with people who are willing to try to understand our loss. But after the difficulty we had speaking at the hospital memorial, we were concerned about our ability to convey the dignity of Max's life in front of a large audience. First we were told that we would be making a trip to Minnesota the week before the gala to be taped with Don Shelby, anchorman of the local Channel 4. Then it was decided that Don would make a trip to our home that same weekend and interview us here. This turned out to be a great idea. We had to scramble a bit to get the house in order after the kitchen remodel, but it all got done. Don came with Tony, the RMH marketing manager, and Bill a cameraman who was donating his time. Don even brought his grown daughter who turned out to be a wonderful distraction for Grace. They shot footage all around the house and the discomfort of wearing the microphones was minimal. They shot us looking at movies on our computer, they shot us in the yard and then we settled in for the interview. Don Shelby made us feel very comfortable, and we were able to tell our story to one sympathetic interviewer (and a camera!) which was a lot easier than a room full of people. After the interview was over, we all had lunch and we spent some time with Don looking at pictures. He was very kind to us both on and off camera, and we are grateful for his patience and understanding.

Tony also asked us if we would come on stage at the gala with Don after the video played and perhaps say a few words after he acknowledged us. Our concern was that it would be hard to know what to say without seeing the finished piece. Thankfully, as we arrived in Minnesota on Friday, Tony met us and told us that we could see the DVD at his house. We were blown away. They chose all the best pictures of Max and the footage of Grace was edited so well with our interview. They had put our material across two segments. Everything was tasteful and dignified and we found ourselves caught up in our own story. It was very emotional. In addition there were also some very powerful pieces made about "The House That Love Built" in honor of the 25th anniversary and these were very moving.

After we killed a couple of hours at the hotel, we got dressed up -- Grace was so very proud to wear a ball gown -- and headed off the the gala. They had a huge ballroom decorated beautifully inside and out. Grace had a blast just watching the drinks being poured through an ice sculpture. Outside were tables of silent auction items and inside were tables for the guests and a stage for the speakers and band. The show began and it was a mix of emotional videos and sincere expressions of gratitude to so many generous donors with exciting live auction items. A puppy even went for $4100! As our videos played it was breathtaking to see our beautiful boy on screens so big. I know my heart was pounding and I'm sure Margaret's was too. It was such a relief when it was over and we could see so many people touched by Max's story. We still had another video to go and some more items went for auction. Some people around us leaned over and thanked us for telling his story. This made us feel really great.

Before I mention how the second video went I want to mention Rowan, Grace's friend from a year ago who was back for her brother's check-up. Her family is from Egypt and it is such a long trip for them. Rowan was so thrilled to see Grace and her mom told us that Rowan still had the picture Grace made for her the night before we moved out of the house. It was so nice for Grace to see her friend and to have a buddy in an otherwise adults-only event. It was also great to see Bryanna, a little girl whose treatment for cancer has lasted over a year and was about to begin a kidney transplant from her Dad. We wish them well.

As the second video began, I started to wonder why we were chosen to be the guest speakers. After 25 years, surely there were "happier" stories to tell, things that would better show the "success" of the house. But I realized that our story rightly emphasized the true mission of the Ronald McDonald House, to be the support for the FAMILIES of terminally ill children, and we are certainly very appreciative examples of this goal. The second video played and ended with Margaret's beautiful words of how in the context of confusion and turmoil that has been our year, the only thing that makes sense is the Ronald McDonald House. The only thing that matters is how you treat people, and the shining example of that is the staff and volunteers of the house. The crowd applauded and Margaret, Grace and I got on stage. Margaret said a few more words of thanks and then I introduced the Adopt-A-family Program. They were hoping to get 48 audience members to stand and pledge $500 each to adopt a family at the RMH during the holiday season. We were really touched when 81 people stood up. This part of the evening raised $40,000 and for that we are so very proud of our son.

Overall, the experience was quite overwhelming. For the rest of the night people approached us to thank us for sharing our story, to say what a beautiful boy Max was, and to wish us well. For the most part, Grace was unaware of how emotional the night was for us. Grace was more worried about Rowan seeing her waving on stage than she was about anything else. And truthfully, we were glad for that. Too much of Grace's innocence has been lost already and we were happy to see her having fun.

After the videos and auction, a band headed up on stage for some dancing and entertainment. Grace was looking forward to this part of the night, and she stood right in front of the stage doing her best "moves." She really didn't want to dance with anyone, only herself, and was quite annoyed that many people, having recognized her from the video, were coming up to her and patting her on the head. "People keep doing stuff to me!" she said in a huff at one point. But she was more than thrilled when I began to throw her up in the air during a few numbers.

Since the gala itself was so emotional, we decided against visiting the hospital, although it would have been nice to see many of Max's caregivers. Instead we opted to take Grace to Camp Snoopy at the Mall of America. She had a great time riding all of the rides, and left with a new Enchanted Princess doll from the Disney Store. The trip was both difficult and rewarding, sad and joyous. We are really glad we went.

The coming weeks are expected to be very busy. Halloween is fast approaching and with that Grace's annual Halloween party. Grace had one 2 years ago when Max was just a few months old, and great fun was had by all. Max, appropriately donned in a Superman costume, slept through the entire party. Last year we were in MN for Halloween, enjoying a great party at the RMH and suffering great heartache at the hospital. Mike's little sister, her husband and new baby will be visiting us for Halloween. We are all so excited to see them, and meet the newest addition to the family. In addition to the festivities in our house Grace has parties to attend at another friend's house, ballet, school, Mike's office, and our local RMH. We are sure to have candy coming out of our ears! Also somewhere in the middle of it all we will be attending another concert by Grace's favorite rock star. No wonder we are tired!

Thank you so much for checking in on us. Sorry for the lengthiness of this update. Happy Halloween!

-Margaret, Mike and Grace

2nd Birthday Eve

2004-07-06T21:30:00.000-05:00

It is the eve of what should be Max's second birthday, and words cannot begin to describe how much we miss him. We should be helping him unwrap his birthday presents, not struggling to pack up his room.

The events of Max's birth are still so very clear in my mind. People had been commenting on how big I was. A stranger at the store had said a few days earlier that I must be due soon. I guess she was right. The night before his arrival Mike and I were watching a movie when my water broke. I was only 31 weeks pregnant at the time, and we thought we knew how serious the situation was. I calmly called the doctor, got dressed, and we drove to the hospital.We stayed calm throughout, and I remember feeling like my life was taken out of my control. There was really no point to panicking, it would do no good or change what was about to happen. Moments before his birth we decided on his name. It was between Matthew and Max, and we chose Max because it sounded tougher and we knew he had a fight ahead of him.

Max was born at 4:48 PM. They took him from me immediately, and all I could see was the back of his head and that beautiful, thick, dark hair. We heard a very tiny cry, and that reassured us. We were so surprised to hear he weighed 4 pounds, 15 ounces. The doctor had predicted he would only be 3-4 pounds. As the doctors continued to work with me I could see the team of doctors and nurses working on Max in the back of the room. One nurse snapped a polaroid picture and brought it to Mike and me so we could see what Max looked like. Before they whisked him off to the NICU they stopped his incubator by me so I could see him in person, and touch his tiny little fingers. He was intubated, and his chest was covered in electrodes. He was beautiful.

It was a few hours before they would let us up to the NICU to see him, and it was over a week before I had the privilege of holding my son. Many of the nurses referred to him as a "big boy." Though he was tiny to us he far out weighed many of his NICU neighbors. His hair also endeared him to many on the staff. We'd come in to see him, and the nurse would say "I couldn't help myself, I gave him a bath and just had to spike that hair up." His hair fell out a few months later, and thinner, lighter hair grew in, only to fall out once again during chemo.

Last year we planned Max's first birthday party knowing that it could be his last. We were to leave for transplant soon after his birthday. For the party we made a poster with a picture of Max from his NICU days and a picture of him at 1 year clapping his hands. The poster stated, "what a difference a year makes." I think about that poster all of the time now. So much can change in a year.

Max entered this world much like he left it - too early and hooked up to too many machines. But unlike his birth, at his death I had the honor of holding him in my arms. Sometimes I think he was taken because I wasn't good enough to have had someone as special as he. Other days I wonder how I got so lucky to have had him for only just a short while. It was a privilege to be his mother.

I have so may birthday wishes for you, sweet Max. I hope you are having the most wonderful party in heaven, joined by your friends who also left this world too soon. I hope they have apple-strawberry-banana baby food, piles and piles of Cheerios, vegetable crackers, breakfast bars, Carnation formula and apple juice. I hope they have a Baby Einstein movie marathon, and your most favorite toys for you to chew. I hope there is a little electronic piano for you to bang on. Grace tells me there is a mom in heaven who takes care of all the babies, and I hope she is letting you hold her fingers as you do lots of laps around the dining room table. I hope she plays clap-clap and sings your favorite songs in your ear (No, No, No, You Are My Sunshine, and the prepositions song). I hope you have someone like your sister to make you laugh. I hope you like the balloons Grace is going to send up to heaven, and the pin wheel she just had to have for your grave. I hope you know how much you are loved by so many people, especially me, Dad and Grace. Happy Birthday beautiful boy.

April & May

2004-05-22T20:00:00.000-05:00

We haven't done a proper update for almost 2 months, so I will begin with a recap of April.

For most people, when they think of April 15th, they think of tax day. For our family it marks a much more significant event in our lives - the day Max was diagnosed with MPS.

On April 15, 2003 Mike and I took Max to a neurologist for the slight tremor he occasionally had in his chin. We noticed it the day he was being discharged from the NICU, and it was initially thought to be a reaction to one of his meds, or caused by an immature nervous system. It wasn't going away, however, so the doctor wanted us to see a specialist. We had to wait quite a while for an appointment, and we expected he was going to tell us it was a result of the brain bleed Max had at birth.

In the week prior to Max's visit to the neurologist Max had two other significant appointments. He saw an orthopedic doctor for the lump on his back, who diagnosed him with kyphosis. He also had his 9 month check up, where we learned his head had grown significantly. Max's head had always been large, and I remember one of the nurses commenting that preemies had to grow into their heads. I knew his head was getting bigger, as I had just purchased a new hat for him, but I wasn't that worried because he was a such a big boy.

I usually attended Max's appointments by myself, as he had many of them and Mike couldn't miss that much work. Thank goodness he came with me that day. I don't know what I would have done without him. I think we knew something serious was going on with Max, we just didn't want to believe it. We had looked up kyphosis in infancy on the web, and had read about Hurler. We dismissed it because it sounded too horrible to be true. How could it be true, as we had gone through so much to have him, and he had been through so much as a preemie already? And, we had already been to so many doctors and therapists and so far no one had suggested anything genetic.

The doctor told us he suspected MPS, and told us it would affect Max's mental and physical development. He did not, however, tell us it was terminal. Instead he let a resident print out the home page of the MPS Society for us, and sent us on our way to the lab. We almost couldn't breathe when we read the description of MPS. We called our families from the car. When we got home my mom and sisters were at the house with Grace. We sobbed the entire night. It wasn't until several lab mix ups and weeks later that we got the final diagnosis of Hurler. We never imagined that come this April he would be dead.

Of course, April also marked the celebration of Easter. It was much harder than we had expected it to be, and we missed Bubba greatly. Grace was treated very well by the Easter Bunny and his associates, as many people remembered her this year. Thank you all so much. We made dinner at the RMH near us, and it was a great success thanks to the help from my mom, sisters, brother, aunt and cousins. We also had a fiesta at the RMH for Cinco De Mayo. Thanks to my family and the Micucci's for your help with that, or should I say gracias?

Everyone who reads this site knows how grateful we are to the RMH in MN. We were extremely honored to be a part of two publications by the house. Max and Grace's pictures appeared in the RMH newsletter and pledge card. I really hope their faces inspired a lot of donations - who could say no to those smiles and dimples?

May was not lacking significant events either. Although, when your child is gone most dates become significant. We celebrated Mother's Day on May 9th, and Mike's birthday on May 10th. What better way to celebrate than by running away from our troubles? Thanks to some secret planning by Mike and his accomplices, we were able to take a MUCH needed trip to San Diego! Mike and Grace presented me with a locket containing Max's pictures before we left. We wanted to get most of our crying out of the way before our vacation.

TRIP RECAP: We spent 4 very quick days in San Diego and it was beautiful.
We stayed at an amazing resort on Mission Bay and we swam every day in the heated pool. The grounds of the resort were spectacular, modeled after a tropical paradise, and the foliage and flowers were gorgeous. We felt a million miles away from Illinois. We spent Saturday exploring the resort and jumping on the bed. Sunday started with a great Mother's Day brunch and a trip to Legoland. We discovered that our little princess LOVES rides. Lucky for Mom and Dad's queasy stomachs, Legoland is rather gentle in the ride department. Grace rode on two boats, a safari jeep, two roller coasters, and was totally in her element. She loves Legos and she got to see so many sculptures that were almost too good to be true. The highlight was probably Mini-Land, an area that took 16 million Legos to build, and is home to reconstructions of New York City, San Francisco, New Orleans, Washington DC and so much more. It was a perfect day.

Monday all the frenzy of travel, swimming and running around caught up a bit at Sea World. Grace was less than impressed. The park and the shows were outstanding, but after Legoland, our little tyke sure was looking for some rides, and some weren't open, and some weren't opening until after Memorial Day. But we still had a good few hours and getting home earlier gave us a better jump on what turned out to be the highlight of our trip - our visit with the White family, our San Diego Hurler friends. We learned about their amazing daughter Susannah when her Mom, Amy, first spoke with Margaret before we ever went to Minnesota. We met Susannah, her big sister Madeline, and their parents right before transplant began, and they were supportive to us on a daily (and very-late nightly) basis. Amy was able to make it to Max's funeral, and while the outcomes of our respective transplants are very different, the level of understanding and mutual admiration was clear from the moment they welcomed us into their home. It was as if we were seeing family, and in way, we were. Grace plotted and played with Madeline like a big sister, and the way she talked about Susannah was another indication of the unconditional love she had for her brother. When we met the Whites last July we had an indication of what could be, and less than a year later, we saw what might have been. Both Margaret and I remarked that a hug from Susannah sure felt like our Bubba. Most Hurler kids look alike, but Susannah was very much a girl and while she didn't look like Max, she did feel like him. Thank you Amy and Klane for your extraordinary generosity. Tuesday came all too quick, but we squeezed in a short drive up to La Jolla and had a great lunch and a little trip to a rocky beach before we had to head home.

Returning home was very hard. It was as if we had just pushed Mother's Day back a few days. We also learned that Niki, a beautiful girl with Hurler undergoing a transplant in Chicago, had passed away on Mother's Day. Our thoughts and prayers continue to go out to all the families affected by all aspects of this disease. We want to say thank you to everyone who sent messages on Mother's Day. It really means a lot to us, and it really helped us get through the week.

This week marks the 6 month anniversary of Max's death. I am sure it will be very hard for all of us. We have been attempting to pack up Max's room. It is unbelievably hard, but we are slowly getting it done. We have also made some very good progress sorting the 100+ envelopes we have received from our insurance company. We put it off as long as we could, since every charge is a reminder of the countless procedures Max had endured. We are already worried about making it through Max's birthday in July.

Some of our friends in the Hurler community sent us a flowering tree which we planted in our yard in Max's memory. They told us about the tree after Max died, but of course you can't plant trees in Chicago in the winter, so they had it delivered to our house a couple of weeks ago. It is a beautiful reminder of our beautiful boy and the wonderful friends we have met along this journey. Our green-thumbed friends Chris and Craig (the web-mistress and master of this site) have offered to help us plant some flowers near the tree to create a little memory garden.

Now on to Grace news ...

As many of you already heard, right after our March update we took Grace to her very first (kids) rock concert! Ralph, of the Ralph's World CD's, held a kiddie rock concert in a bar close to our house. Don't worry, the bar was made kid-friendly, complete with a carpet to dance on and juice-box serving waitresses. Grace danced the entire time with her friend Mary. We enjoyed watching her so much, and were swept away from everything for a brief period. I can actually say it was the first time I felt pure happiness in a very long time. Once I realized I was happy of course my eyes welled up with tears and my heart ached for Max. Soon after the concert we realized Grace had developed her first crush. She talked about Ralph with a funny look in her eye, and stated "Mom, I don't want to be a doctor anymore when I grow up. I want to be a rock star!" I told Grace she could be both.

Grace is wrapping up the school year, and we cannot believe how quickly time has passed. Her best buddy Lindsey moved last week and over all Grace handled it pretty well. A little girl moved next door, and Grace of course is thrilled. They have yet to play together and we are hoping they will be well matched. Ballet is also coming to a close, and the class is preparing for their recital. We are hoping Grace and Lindsey can stop giggling for the few minutes they are to be on stage.

Thanks to all of our loyal supporters. Have a wonderful Memorial Day weekend.

Love,
Margaret, Mike and Grace

Mother's Day

2004-05-06T21:03:00.000-05:00

I am full of so many mixed feelings as this Mother's Day approaches. I miss Max more and more each day. And yet I feel so incredibly honored and blessed that I was chosen to be his mom for the brief time he spent on this earth.

Every day I think about how lucky I am to have Grace. (Even when she is driving me insane!) We are so fortunate that she was spared the health problems her brother endured. Like her brother, Grace was born prematurely, but she spent no time in the NICU. We are so blessed that she only carries Hurler and is not affected by it.

This Mother's Day I am also grateful that I wais able to meet so many wonderful mothers this year. All mothers work hard, but no one works harder than the mothers of children with chronic or terminal illness. How blessed am I that I have come to know such strong, loving and amazing moms! You are all such inspirations. I thank you for the example you set, and the friendship you have offered.

Happy Mother's Day!

-Margaret

Cold and Flu Season

2004-03-25T21:17:00.000-06:00

remember last year I waited and waited for the beginning of spring and the end of the cold and flu season. We wanted so badly to be able to take Max out of the house and be a "normal" family. I had no idea what was in store for us.

Much has happened this past month and the ups and downs of grief continue; if only the ups could be much higher and the downs not so deep. Last week I finally had the courage to call our social worker at Fairview to see if Max's autopsy report had been completed. A few days later I received a call from Dr. Grewal, Max's primary BMT doctor. We went over the report on the phone, which confirmed just how sick Max really was. I hesitated to give details in this update, partly because I didn't know if I could bare rehashing my beautiful boy's suffering, partly because I didn't know if anyone cared to read such a thing. But then I realized that we had the autopsy done to help other Hurler and BMT children, and this information could quite possibly help one of our readers. I will do my best to explain everything, and I hope I understood all of the information correctly.

As we already knew, Max was suffering from uncontrollable GVH of the skin and gut. The report revealed that his gut was SEVERELY damaged and scarred. In addition, his pancreas was enlarged (reason unknown), and his liver had excess bile from either GVH or TPN (IV nutrition). Hurler deposits (GAGS) were found in his coronary artery, but the deposits were not significant enough to explain his need for blood pressure pressers (the more likely reason was infection). As we knew, he had hydrocephalus (fluid on the brain). At the time of diagnosis, it was unclear whether this was caused by the brain bleed he had as a preemie, or by Hurler Syndrome. The autopsy showed Hurler Syndrome to be the culprit.

Two things found in the autopsy took the doctors by surprise. The first was the presence of cytolytic thrombi in Max's lungs. These are kind of like a stroke in the lungs. The doctors were surprised at this finding because they are not very common, and because Max had so many of them. They are only found in patients with GVHD, and often are misdiagnosed at first as fungus via a CT scan. They are definitively diagnosed by a lung biopsy or autopsy. They went undetected on Max's CT scans because of the bleeding in his lungs.

What frustrated us so much during Max's treatment was the disagreement between different doctors on whether or not GVH of the lung exists. Some argue that GVH of the lung does not exist because of the lack of apoptotic cells (cells which have self destructed), present in GVH of the gut and skin. Cytolitic thrombi are not referred to as GVH of the lung per se. However, they are treated the same as GVH. Some medical personnel think they are manifestations of GVH in the lung, others believe they are a separate entity. They also found bleeding in Max's lungs, something we also already knew, which also was the cause of death listed on Max's death certificate. While Hurler children are more likely to have lung bleeds during transplant compared to patients transplanted for other diseases, thrombi are not known to cause a lung hemorrhage, though in Max's case they may have been a contributing factor.

The other surprising bit of information learned from the autopsy involved Max's brain. More Hurler deposits were found in Max's brain than in any other Hurler child autopsied at Fairview, including those who were significantly older than Max. Theoretically, children older than Max at the time of death should have had more deposits since the disease had more time to progress. Dr. Grewal and Dr. Charnas, Max's neurologist, are very puzzled by this, especially since Max was doing so well neurologically at the time of transplant. They have pulled the autopsy reports of the other Hurler patients and will be reviewing them in more detail in hopes of learning something from this.

Where does all of this information leave us? I wish I could say we now have total closure, but that is not exactly true. We do know that we made the right decision to withdraw life support. Dr. Grewal said that knowing how sick Max was he feels that they did not have the technology to save him. We could see that he was suffering greatly, the autopsy showed that he was suffering more than we imagined. Our hearts are forever broken at the thought of this, and we will never understand why such a beautiful child such as Max had to endure so much. The world simply is not fair.

One thing we do know for certain is that Max was stronger and more determined than we realized. Because he was born so prematurely, we held our breath for every developmental milestone. We were filled with sadness, as we knew he was further behind than he should have been. Then he was diagnosed with Hurler and we realized how much he was overcoming. In some ways his diagnosis set us free, and we were able to enjoy what he could accomplish each moment, instead of worrying about what he wasn't able to do. Now that we know how severely his brain was damaged by Hurler, we are even more proud of him. Max was born 9 weeks early. He had a brain hemorrhage at birth. He had asthma. He had all of the problems associated with Hurler Syndrome. His brain was filled with Hurler deposits. Despite all of this, before transplant he was pulling himself to stand and walking along the furniture. He was sitting and crawling. He knew how to feed himself, and give hugs and kisses when asked. During chemo he mastered pushing to sit from his belly. He was a star and we knew it, we just didn't know exactly what he was battling in order to perform all of these tricks. He had amazing will and spirit and we are so very proud. We are also thankful for his three therapists who worked with him each week to help him gain these skills and have a better quality of life.

This weekend we were able to summon the strength to finally go and purchase the marker for Max's grave. We didn't do it after he died because it was winter in Chicago and they cannot be placed in the frozen ground. How we wished we had made the arrangements back in November, when we were somehow possessed by people able to make life and death decisions. We put it off as long as we could, but now that the snow finally melted we knew it was time. Grace picked out the color (we had to steer her away from pink), and the stone will read "Our Brave Boy, Max Ciacciarelli." We also ordered a ceramic tile with Max's picture on it to be placed on the stone.
Now on to Grace news. This month was busy for her as well. It started off with parent-teacher conferences at preschool. Mike and I both went, and were most proud when the teacher told us what a lovely transition Grace made into the class mid-year. Other parents have commented on her social skills as well. We are so lucky to have her, and so lucky that she is so adaptable. It certainly helped throughout the past year. Grace's teacher also told us that she talks about her brother all of the time, and seems at peace with him being in heaven.

Grace recently gave us quite a scare. She had the stomach flu last week like half of her preschool class and then she caught a cold. She developed a pretty bad cough and the next day she started breathing fast. I called the doctor and she told to me try a few things which I did and they seemed to work. Then right before bed it happened again. It was if she had just run a race when all she was doing was laying in bed. At first I thought I was overreacting or imagining things but then Mike got home and told me I wasn¹t crazy.

We took her to the ER which was stressful for all of us. Grace told me recently that if you go to a hospital you don¹t ever get to come home again. She must have been so scared, but she was really brave. She got a breathing treatment, which is a really simple thing, but was hard for Mike and I to watch. They gave her the same oxygen mask Max had several times in the hospital. She also got a chest x-ray (something Max had one or more times a day). She handled it all really well until they swabbed her nose for RSV then she cried her eyes out (I don¹t blame her).

The x-ray showed a little pneumonia, though her pediatrician said it was borderline and could have just been bronchiolitis. Her ear was also infected. We stayed up all night in shifts watching her breathe. We were so freaked out, and I think I was nearing a nervous breakdown at one point. You would think with all we have been through that this type of thing would be no big deal to us, but it was extra scary I think.

The other day I had to break the news to Grace that her life-long best friend and next door neighbor was moving. Some of you may remember our neighbors who ran the awesome Mighty Max raffle, and who have been so helpful to us this past year. When hearing the news Grace immediately began sobbing. Her brother died, her cousins moved to Maryland and her best friend is moving soon as well. I think sometimes it is just too much loss for one 4 year old to bear in such a short period of time. She calmed down when I told her they would only be a short drive away, and she seems to be okay with things now. She loves her friend so very much, and we are so grateful to have had such wonderful neighbors for the past four years. Though we are sad to see them go, we are glad they are not going too far. They are really great people who deserve every happiness in life.

We are so sad that we lost our son, but we are most sad about Grace losing her brother. Being Max's big sister brought out so many wonderful things in her. He was so much entertainment for her. He was her buddy, her Bubba. When discussing lucky things on St. Patrick's Day Grace listed not having Hurler Syndrome and getting to be on earth as her lucky things. While we realize Grace probably understands the important things in life better than most adults, we often wish she could be a "normal" four year old for a day and list some things like her classmates did - toys, money, and treats.

Before I end this rather long update I must also extend our deepest thanks to those who made contributions to the RMH in MN in Max's name. Because of your donations, we recently learned that Max's name was placed on a tile on a wall at the house. On the tile is a glass heart, and a replica of the heart was sent to us as well. It is such a nice way to honor Max's memory. The RMH truly is the house that love built.

Thank you to everyone who continues to check in on us. It means so very much. Happy Easter and Happy Spring!

--Margaret, Mike & Grace

Why Not Us?

2004-02-22T00:07:00.000-06:00

It's hard to know how many people are still checking in on us these days, but the smattering of encouraging notes on our guest book tells us that some of you have been very patient with us and and are due for some news so here it goes:

There isn't a day that goes by that we aren't brought to an emotional standstill as we feel the full impact of the loss of our son. Some days this is felt like an impending storm, clouds swirling and no sun. Others it is a brief but powerful rain shower in an otherwise bright day. What brings these moments on is hard to explain. Sometimes it is just the emptiness itself, the void that remains because part of us is gone forever. Other times it is a thought, an idea, of the future that previously would have included him, but now in that moment only includes the notion of him not being there. In fact, this (second, unintended) future is the hardest part to bear of all because, well, we live for our kids. We are secondary to them. Our future, and every facet of the future was being driven by the very presence of our children, one of them very sick, and every idea for what comes next is an idea that, however interesting or exciting is also one that can only be achieved because of what is NOT there. Since Max died there hasn't been one thing that we have done that was like what we did before. His presence was that focal to our lives. His needs were great and he was the axis around which the rest of our lives spun. Without him, we have been doing our best not to spin out of control.

Our last month and a half has included lots of busy work - better to keep the mind active so as not to get pulled by the undertow of grief. I've returned to a very busy schedule at work. Margaret has been on a home improvement binge, organizing and cleaning and trying to catch up on all of Max's medical and insurance concerns (a task no grieving mother should have to do). Though it comes at the same time every year, our anniversary seemed to arrive this year in a most suspicious manner. It felt like a challenge, like it was daring us to do something good for each other when neither of us felt like it. But we did manage to have a nice day and we were able to realize that 8 years of marriage is an achievement for any couple, but for all that we have been through we have a lot to be proud of. Having read so many accounts of the difficulty this sort of emotional trauma can cause in a marriage we feel fortunate to be able to lean on each other, and to balance each other out as needed.

Finally this brings us to Grace, now four years old and wise beyond her years. It is in her that we find our greatest joy and our most searing pain. She carries in her small heart such enormous love. She talks about her brother constantly, often to strangers and speaks truthfully and matter-of-factly. When her schoolmate introduced Grace to her younger baby brother, Grace told her, "I have a baby brother who is 1 named Max who died!" With us, the comments range from the nostalgic "Remember when Bubba used to drop all his spoons off his high chair?" to the brutal - "I don't want to wear my 'Supergirl' tee shirt today, Mommy. I'm not a super hero, I didn't save anyone. I didn't save Max." But by talking about him so much she is bringing his wonderful light and smile out again. Driving home the other night she first was upset because Max's star stopped "following" our van. But then she thought about it and guessed that Max probably knew a shortcut. She was so excited to see his star when we came home. Her joy for her brother is the definition of bittersweet. We celebrate the amusement of these moments, but we are crushed by the reality that had he lived, what a wonderful team they would have become.

Which brings us back to his loss, and what to make of it. When we were watching him deteriorate every day, when we saw all the equipment come in and out of his room every day we had to be so narrowly focused on his progress that we had very little time to place his situation in the context of his disease or in his process. But since we've left Minnesota, of the children who we've been following closely, we have seen much more suffering than success. The lesson we learned the hardest is that life is not fair. And for so many families of terminally ill children, that lesson is learned over and over again. There are just so many sick children. We have come to realize that the question is not "why us?" but rather "why not us?" as such tragedy can happen to anyone.

In addition to all of the amazing Hurler families that we have on our site, we would like to turn our readership to the following families, all of whose hospital stay were concurrent with or overlapped Max's:
Saralee - (AML) - what a fighter, over 60 days on a vent http://www.caringbridge.org/mn/saralee/

Marshall (Fanconi Anemia) - one of two children in the same family with Fanconi who we met at RMH http://www.caringbridge.org/la/marshall_n_amelia/

Dylan (JMML, passed away February 11) http://www.caringbridge.org/mi/dylan/

Tom (Fanconi Anemia, passed away February 17) http://www.caringbridge.org/ri/tom/

Cade (Fanconi Anemia, passed away February 18) http://www.caringbridge.org/nc/cadesmith/

In addition, we would like to invite as many of Max's followers to Christopher Joseph's site, he is a boy with Hurler just like Max and he is in the thick of the tough days of transplant at Johns Hopkins: http://christopherjoseph.com/

A boy who lives not too far from us has a rare disease called adrenoleukodystrophy (ALD) and his progress is being recorded at: http://www.hultmanhome.net/

We would like to extend our most sincere thank you to everyone from Fairview University Hospital and the Ronald McDonald House of the Twin Cities who reached out to us with notes about our son. Our time there will be remembered for so much more than our greatest tragedy, it will also be remembered for so much goodness, personified by so many of the staff of the hospital and the RMH.

Finally we would like to direct you to check out the updates for Max's little buddy Susannah White. Her Mom, Amy helped us through many long nights at the hospital with supportive phone calls and Yahoo instant messages. She has written a beautiful tribute to Max on her site and we hope that all who came to know our son take the time to read it. Thank you Amy for being such a good friend and a champion for our son.

Until next month ...
Mike, Margaret, and Grace

The Holidays Came and Went

2004-01-11T00:17:00.000-06:00

It is so strange not to start an update with the number of days post transplant and Max's white blood count. But then again, life is strange these days. We are doing well, as well as can be expected, maybe even better than some people expected. We miss Max more and more every single day. I really do not think we will ever get used to the fact that he is gone.

The holidays came and went, and we celebrated for Grace. Without her I do not know where we would be. With the help of my brother, sisters and two of my sister's friends we cooked dinner at the Ronald McDonald House near Loyola Medical Center (where Max was born and lived in the NICU for almost 6 weeks). At first it seemed like no one was going to show up to the meal and we were very disappointed. But then more and more people started arriving from the hospital and it was a success. The families were very appreciative. We were so grateful to have the opportunity to honor Max in that way.

For some very strange reason, New Years Eve was harder than Christmas. We have never celebrated New Years before, it was just hard to accept the fact that we were moving into a new year without our son.

Mike returned to work on Monday the 5th after being off for 6 months. We were SO FORTUNATE that he was able to get the time off to be in Minnesota with us. Mike would have never forgiven himself had he missed that time with Max. We spent the past month catching up on some Mike and Margaret time and Grace time. Even though we were all out in MN, we were rarely together, since one of us was always at Max's bedside. To have this past month, with only each other and our daughter has been a very special time. Mike and I saw a few movies and even went to a play. It almost seemed gluttonous to have so much time together. We took Grace to museums and new restaurants, and we spent a lot of time with family and friends. Right before Max died Mike and I took Grace to dinner while Mike's mom and Aunt sat with Max. It almost seemed like this past month was an extended Gracie date and someone was sitting with Max. At times we feel like we should be able to walk out our door and walk over to Fairview hospital to be with Max like we did so many times in MN. Mike's return to work ended the unspoken fantasy land we have been living in the past month. Now it is back to "life as usual" and we keep wondering how we can ever feel normal again.

Grace has been doing well. She talks about her brother all of the time, to anyone who will listen to her. She struck up a conversation with a woman at the bakery about Max, she told a woman waiting for an elevator at the museum about him, and she told a woman at the mall with a son the same age as Max '"my brother died in Minnesota, " leaving the woman a little shocked. Most times she is much more articulate than that. She explains that he was very sick, that we had to move to MN, and that he is in heaven now. When her friend asked her "how is Max going to get better, how is he going to get back from heaven?" Grace explained that Max was already better in heaven and that he was not coming back. Her eyes then filled with tears.

Grace started school this past week and attended her second ballet class. You would think she would be a little scared, especially since all of the kids have been in school for months, but not our Grace. She went in and made herself at home, barely taking the time to say goodbye to us. This week will be busy, as her birthday is coming up and Thursday will be her day at school to pass out treats and do Show and Tell. It is so hard to believe she is turning 4. While she's at school twice a week I will have some time to myself. I feel like I should be spending that time with Max, taking him to therapy, or just enjoying him. Instead, I will try to catch up on things around the house and maybe do some more volunteering. For now, distraction seems to be our best coping strategy.

We want to extend our warmest thanks to those who have continued to check in on us. It means so very much, and it truly keeps us going. We are very behind on thank you cards and emails and for that we are very sorry. Speaking of keeping in touch, I have misplaced our address book and therefore have lost all of our contact information. To our family and friends (especially our friends in MN), please send us an email with your number and address so we can keep in touch.

Take Care and Happy New Year,
Margaret, Mike and Grace

Our Mailbox Has Been Full

2003-12-20T00:19:00.000-06:00

The holidays are here and we are preparing the best we can without our son. I've been thinking for a long time about what to write in this space. It's hard to know if people are still reading, but it's been a few weeks and even if there's no one to read this, it will do some good to get some things down.

Surely people want to know how we are doing. I think we are dealing with things well. We have our moments (sometimes much longer than a "moment"), but overall we are doing well. Other families who have been through our horror have reached out and been very helpful. Thank you, and yes, you are the only people that can truly say "I know how you feel." We still have no regrets for the decisions we were faced with at the end of Max's life, but we will never understand or be able to justify the suffering that he endured prior to his final peace.

Our mailbox has been filled since we've been home, first with sympathy cards then with a mix of sympathy and holiday cards, and now mostly holiday notes. We have to say thank you to all of you who did take the time to write to us. Many of you couldn't make it to Max's services and we know from your cards how much you care. Thank you. Special thanks to the nurses and therapists who wrote from Fairview. Such a simple gesture, but such a deep impact. We miss you all. Many of you have written that 4A is not the same without us, and that is very kind. We would give anything to be back with all of you.

I'm still not back at work and Margaret and I have strived to make the most of this extended generosity (thank you Optimus!) to spend special time with Grace. We have been to the Play Zoo, the Children's Museum in Oak Park, brought her to her school and ballet classes (both begin after the New Year), gone on a carriage ride downtown in Chicago, and we've had great mommy-daughter or daddy-daughter time out shopping for each other. This time with her is very special. Since Max was born she has been cared for with less direct attention, and it is a pleasure to focus on her as a beautiful little girl and not as "the sibling" of her sick brother. She sure misses her brother, though. She talks about him every day and night. She even made a pretend call to heaven on the phone (only she knows the exact number). We try to have our breakdowns away from her, to lessen her burden. But she too is hurting, and we think hurting rather deeply. She doesn't ask "Why?" thank God, because that's unanswerable. But she does miss him. And she's lonely. She spent the last five months with other kids accessible by walking down a hallway or going to an event at the Ronald McDonald House. So now she's home, and her friends have their own schedules, and they live down the block, and you can't just knock on their door.

And then there's my sister. Unfortunately for us, especially for Grace, my sister moved to Maryland. Her husband began a great new opportunity and they left this week. Grace had really enjoyed the time with her three cousins since she's been back, and it's a blow to have that loss on top of Max. We know that they're going to do great in Maryland and they've got each other to lean on, but Grace is lonely without her brother and now without her cousins. Hopefully she can make new friends, but it will be hard for us to establish friendships with people who have no understanding of what we've been through. That's why the loss of family at this time creates such loneliness. But we have to persevere because the reality of life for us is that the overwhelming majority of people in our life will have no understanding of our pain and suffering.

We've been slowly going through Max's things and his room and some of the stuff that was "easier" to pack up and donate was given to a family that we heard about through Max's therapists. They have a little baby who was born at 24 weeks and has made it home from the neonatal unit and the family has sort of been "adopted" by the nurses and caregivers at Loyola. We feel good knowing that Max is helping those in need during the holidays. And in that spirit, Margaret volunteered to cook Christmas Eve dinner at the Ronald McDonald House near Loyola. We will be spending the whole day there, decorating and cooking and it's the best way for us to think of and support the Ronald McDonald House family that supported us so wonderfully. It will be good for our souls to be there.

We have encountered our fair share of "weird reactions" to us. People who can't look us in the eye. People who didn't call or write until Max was dead now feel "terrible" and want us to relieve their guilt. People who say incredibly inappropriate things, etc. We know it is hard for people to be around us. They do not know what to say or do. But as hard as it is for people to be around us, it is SO MUCH harder to be us. Anyone who has followed this journal knows that we are not going to fall apart at the mere mention of Max's name. In fact, we love to talk about our wonderful son and the wonderful people we have encountered the past 6 months. Please do not be shy, we are not. Some people we haven't seen or talked to since we left are acting as if nothing had ever happened, like our beautiful son never existed. It is crushing. We've tried to stay positive. It is very hard to find the silver lining in a storm cloud. We did receive some generous meals from our friends and family and while it might seem like a small gesture, it is truly the nicest thing you can do, and it means more than you all know.

We've tried to keep up with the other families whose stories have touched us and we've been reading of families having to spend the holidays without their children and families who know that their child's life is their best Christmas gift. Our thoughts are with all of you. Please know that while we may be writing less, we will be checking in more as our lives stabilize. We hope that Max's spirit and giant heart are looking down on all of you in
whatever situation you may be in. We hope that people reading this
continue to check on the other families that check on us.

An Eleanor Roosevelt quote read on a Christmas card:
"Yesterday is history, tomorrow is a mystery, today is a gift. That's why they call it the PRESENT" Please consider sharing your gifts with others.

While nothing can justify Max's suffering and death, we would like to know that good things have resulted from it. PLEASE consider volunteering. Support your local Ronald McDonald House (cook a meal there, drop off food, collect pop tabs and donate them for recycling). Write to the guest books of Max's Hurler friends. These are such small sacrifices that mean the world to people going through similar situations to what we went through.

It's not what's under the tree, it's who's with you when you get there. We miss our Max so much. Please hug your kids and celebrate the joy, recklessness, and terror of children at holiday time.

Merry Christmas to all, and love to all,
--Mike, Margaret, and Grace

Day By Day

2003-12-07T00:20:00.000-06:00

The days following Max’s death were a scramble. Maybe it’s best to go day-by-day:

Wednesday, November 26
Following Max’s death, we were able to get him dressed and have some time with him. Margaret and Anmarie bathed him and it was amazing to watch the love and care from both his loving mother and the nurse who spent the most time with him. The entire experience at the hospital was always so respectful and to the end the care shown by Anmarie and all those who were needed to help with all the equipment and machines showed tremendous respect. Thank you. After a couple hours, Grace, Grannie, Auntie Bethie, Auntie Katie and Grandpa J. came over and sat with Max for the last time at the hospital. Grace came in first and climbed right in bed with him. She asked “Where’s Kendall?” because she thought that if Max was in the room and he was dead, then the other angel that she knew should be there too. She gave him kisses and was very loving. As time passed, more nurses came in and were so nice to us and told us how much they would miss Max. A few of his doctors came in and told us we had done all we could. They have to say that, but it was nice to hear at that moment. At around 3:30 in the afternoon, we slipped out, carrying the last of his stuff from the room, and entrusted Anmarie to follow Max’s body to the morgue. Max’s autopsy was scheduled as well. We hope with all our hearts that something can be learned from Max that will help other children suffering from Hurler Syndrome and all other children undergoing.

Thursday, November 27 (Thanksgiving)
We began to make the funeral/visitation arrangements over the phone, and we are thankful to both Grannie and Pat Micucci for making most of the phone calls for us. We decided to drive back on Thanksgiving because spending the holiday with all the other families at RMH would have been difficult emotionally. Aunt Eileen and cousin Jenny jumped in their car with no notice on a holiday and drove their van up to get the rest of our stuff. We left at around 4 and got back in great time because there wasn’t really anywhere to stop on a holiday. Grannie, Katie, Aunt Eileen and Jenny all drove back the same night and got to our house at around 5am.

Friday, November 28
Most of this day was spent trying to recover our house. We found the emotion of the homecoming to not be as overwhelming as we feared. There were some signs of our little guy throughout the house, but these conjured up all good memories. Max’s life in Illinois was pretty good; it was in transplant in Minnesota that he suffered. We found a house that still had stuffed closets even though we had been wearing clothes and playing with toys the whole time in Minnesota. It was clear that we needed to do some house cleaning. Margaret and I started to bag and box up lots of old stuff for donation, and we cleared out a lot of Grace’s toys when she wasn’t looking. Our neighbor Jodi was nice to take Grace for most of the day so we could get so much cleaning done. Grace was happy to see her old neighbor girlfriends, Lindsey and Megan. Max’s body meanwhile was being autopsied.

Saturday & Sunday, November 29 & 30
This weekend we got a lot of errands done related to the funeral with a lot of help from Grandma and Grampa Chick. Grace spent some time with her cousins and we were able to meet with the funeral parlor and church. The funeral parlor was very helpful in quickly setting up a lot of the arrangements. They did not have a lot of suggestions for readings in regard to the death of a child so we were eager to speak to the priest. When we met with Father Kilbridge on Sunday, he remembered baptizing Max and that was a comfort. He also listened to all of our stories about him and said he would read the big printout of Max’s story that we wrote. As he said, “This is a lot of information for someone only 16 months old.” That night we finished making the poster boards with Max’s pictures.

Monday, December 1 – VISITATION 5-8pm
In the morning we drove to the cemetery again. We had driven out on Saturday and seen the “Guardian Angel” section and we were a little concerned that it might not be right for Max because some of it was a little unkempt. But we were shown other sections and they just didn’t seem right. Max was a baby, and the Guardian Angel section is just for babies. It seemed right that he should be buried alongside other babies and we found a spot next to a nice tree that was open. The guy who we met with told us most people don’t even bother coming to the cemetery when babies die, they are just too overwhelmed or they want it over quickly. How sad. Later a good friend told us that when he saw all the colors on all the tchotchkes left all over the graves it was a beautiful, vibrant sight on an otherwise dreary day.

When we got to the funeral parlor we had only one concern: Was Max presentable? Because of his condition at death (scabbed over eyelids, broken down skin, etc) and the autopsy, we weren’t sure we would be able to have the casket open. But the funeral parlor did a great job of dressing Max and covering his wounds with make-up. He was wearing a red hat and they told us not to touch it so we obeyed. In the casket we put a picture of Max and his sister and a little stuffed stegosaurus that she gave him. The only other thing was a pair of min-boxing gloves because he had been such a fighter. He looked like our Max when you stepped back a bit. But up close, we could still see the suffering and we did our best to put on a brave face. As people arrived, we realized that it was as close to a homecoming party for us that we were ever going to get. We had both thought many times of the day we could show Max off after transplant and to say thank you for all the help. The outcome was as far from anything we could have ever hoped for, but we still wanted to show our son off. He had fought for so long and had been so brave, we thought we should match his effort and not break down if that was at all possible. But the truth is, it was so great to see so many people. People who had meant so much to Max and to us and to our ability to take care of him. Many of his pediatricians and therapists came and even nurses from his time in the NICU. There were flowers from all over the country, even from other Hurler families and from the MPS Society. There was a huge group of people from Mike’s job and we were able to say thank you for being so generous with his time. We saw so many comforting faces and it really helped for us to be able to have so much love in one room. We know Max felt so much love in his time here and we hope he knows it continued on after he passed.

Tuesday, December 2 – FUNERAL (10:30am)
This day was much harder. All of the positive energy from the night before seemed to lose steam as we saw Max’s body again. We both felt more overwhelmed by the reality of things and it really hit home when the casket was closed and put into the hearse. It was so small. We had four pallbearers (all of Max’s uncles) and they were nearly on top of each other. We went as procession to St. Vincent Ferrer and the pallbearers brought Max into the church. We saw the faces of people who weren’t able to attend the visitation and there was so much sadness. We could hear the voice of the soloist and it was beautiful. We would not have known anyone to sing at the funeral but the soloist was wonderful. She began with “I Am Not Afraid” which was strong and clear. At this time it bears mentioning Auntie Dana did a tremendous job with the program for the day, it looked great. Thank you. Father Kilbridge did a great job talking about Max and trying to find answers for his loss. The gifts were brought up by Jenny Birmingham and Amy White (two moms of transplant survivors for Hurler). What a wonderful gift to us it was to have such amazing moms at our son’s funeral. Thank you so much. After “Amazing Grace” (the perfect song for so many reasons), the emotion was very powerful. Soon it was our turn to talk, and Margaret gave the eulogy and Mike talked about what came next. You can read our words here:
Margaret’s Tribute
Mike’s Tribute

Then we hugged some more outside the church and went to the burial. Father Kilbridge was short and sweet under the tree and everyone put a flower (Thank you Chris for gathering them!) onto the casket. Then most of us went to a lunch set up by Auntie Dana and Uncle Geoff and it was our last chance to be with everyone in one room. Of course as always there wasn’t enough time to spend with everyone and say proper thanks.

We were so touched by the amount of support our son received. The amount of flowers (each one outstanding in its beauty), the amount of travelers, the amount of cards and notes was astonishing. Our son was a gift. So too has been the love he created. Thank you all so much.

That’s about all we think our audience can stand to read at one time and it’s about all we have strength to write. That said, we heard again and again about how people were inspired or encouraged by our writings so for all of you we hope this update will suffice for a time. PLEASE NOTE: We have also updated the “Max’s Story” Section of the web site found on the bottom of the home page. This summarizes Max’s journey for those new to the site, or those who want to review his short life.

Love to all,
Mike & Margaret

Max's Story

2003-12-05T23:58:00.000-06:00

Our son, Max Ciacciarelli, was born on July 7, 2002. But his story and his fight began in the months prior to his birth. In December of 2001 Max's Mom (Margaret) was scheduled for surgery to remove a suspicious lump from her breast. Things became much more complicated when she realized she was pregnant. Surgery was put on hold as the oncologist, OB and anesthesiologist weighed the benefits and risks of performing surgery. Eventually it was decided that we wait until she was 12 weeks pregnant for the operation. It was an extremely difficult and stressful time.

Margaret underwent surgery with only a local anesthetic to minimize the risk to the baby and thankfully the tumor was benign and the baby was fine. We were so relieved, and thought for sure that the rest of the pregnancy would go well (our daughter Grace, now 3, had been born 6 weeks premature). Even after the surgery the pregnancy would be high risk, but we thought we'd endured enough stress that fate would give us a break and a full term baby. We were very wrong. On July 6th Margaret's water suddenly broke and there was no stopping Max's early arrival. The next day he was born 9 weeks premature. He was on life support, but after 5 1/2 weeks in intensive care we brought him home. He had a feeding tube, heart and apnea monitors and began speech and occupational therapy. Soon the tube was out, the monitors were gone and he began to make slow progress.

Max had always been described as "floppy" with low muscle tone, which was attributed to the fact that he had an interventricular hemorrhage at birth. Winter 2003 was very long, as Max developed chronic wheezing whenever he got a cold. He began receiving daily breathing treatments and oral steroids as needed, similar to an asthma patient. He had tubes placed in his ears for minor hearing loss, and his slight far sightedness was being monitored. He remained delayed in his development, but we remained hopeful that he would outgrow his problems.

By 8 months it became apparent Max's back was developing abnormally. He was very arched when he attempted to sit, and he was referred to an orthopedic doctor who diagnosed kyphosis. At his 9 month check up his head was abnormally large. It became apparent that something more serious was going on with Max. A pediatric neurologist recognized Max's symptoms to be indicative of MPS. In May he was diagnosed with MPS Type 1, Hurler Syndrome.

Once diagnosed, our first response was devastation. Our early readings of the disease were of all of the gravest and most tragic kind. We learned that the disease had no cure and the children affected had very short life spans, within which there was extraordinary suffering. We spent time crying together and then we began to find some resolve to do our best to give Max the best life possible.

Our research began slowly, first by making contact with the National MPS Society and then by reading story after story. We came to learn that the latest most exciting treatment (Enzyme Replacement Therapy) was more appropriate for children with less severe symptoms. We also learned that if diagnosed prior to age 2, many children had been given successful stem cell transplants.

While the transplant carries risk, and has a less than perfect survival rate, we realized that if successful, Max would be able to enjoy some quality of life. By destroying the cells that lack the enzyme he needs, and by replacing them with cells that do, the progression of the disease would
be halted. There is a significant chance that Max may die or may end up
with chronic issues for life because of transplant, but without it, there is a 100% chance he will die.

Once we made our decision, the next step was to find out the best path for treatment. Hurler children are rare, and the total number of transplants worldwide is still extremely small. There are a few hospitals with more experience with others, but they differ greatly in their approach. Our goal was to find out which facility would be the best for our son. We were willing to go wherever we had to go to fight for Max.

Looking back, we can now see that a lot of Max's issues may have been early signs of Hurler. All of the doctors and specialists who were following the path of prematurity may have been a little too focused in one area, but we know now that their efforts to help Max "catch up" to his real age were also helpful in fighting the progression of his disease. In fact, the therapies (occupational and physical) he has been on have been helpful in slowing the progression of the disease compared to a child without these therapies.

So now at the time we write this, we have decided to undergo a transplant at Fairview Hospital. And we've decided to share our story with friends, family, and fellow families affected by this devastating disease. We are hopeful that Max's story will be an inspiration for many people and that his life will be one of determination and strength.

Max arrived in MN on July 19, 2003 to begin his work up for transplant. After a few delays, he was admitted to Fairview University Hospital on August 3rd and began chemotherapy the next day. Max's bone marrow and immune system had to be wiped out so he could receive his donor cells. After 10 days of chemo he was given a new chance at life when he received his cord blood transplant.

Contrary to what most people think, a stem cell transplant is not a procedure, it is actually a blood transfusion administered by a nurse. Max's transplant took less than 15 minutes.

In true Max style, he handled the chemo beautifully, with minimal side effects. In addition to destroying the bone marrow, chemo also attacks other cells in the body. He continued to eat well, had some but not too much nausea, and avoided the very uncomfortable mouth and gut sores that many patients get. As expected, his hair fell out but he looked adorable. He remained extremely active for a transplant patient, and even learned a few new tricks while in the hospital.

Then day +14 came. Fourteen days post transplant Max got horrible diarrhea and vomiting. A few days later his blood pressure became dangerously low and he had trouble maintaining his oxygen saturation. It became obvious that Max was septic: he had an overwhelming infection in his body of unknown origin. They began treating the mystery infection with everything they could, and they medicated Max so his heart would pump more. A few days later, just when his blood pressure began to stabilize, Max's lungs became flooded with fluid and he ended up being put on a respirator. A bronchoscopy of the lungs showed bacteria known as VRE was growing. Because of this, from now on, anyone who entered Max's room had to wear a protective gown and rubber gloves as to not spread the infection in the hospital.

During the time Max was on the vent, we received two pieces of information. He was 100% engrafted with donor cells and his body now had the enzyme he so desperately needed and lacked because of Hurler Syndrome. However, he was suffering from Graft vs. Host disease (GVHD), whereby the donor cells were attacking certain parts of Max's body. His skin, gut and liver were under attack by his new immune system.

After almost 2 weeks on the respirator, the breathing tube was taken out and Max was left to breath on his own. Soon after, he began treatment for the GVH with a drug called ATG Max suffered a massive asthma attack. Despite all efforts to try and stop it, Max had to be intubated a second time.

During his second period on the vent his skin and liver began responding to the GVH treatment, but his gut did not. For weeks he stooled massive amounts of straight blood. But, his breathing steadily improved and a little over a week later he came off the vent once again.

Despite intense Respiratory Therapy, after about 7 days breathing on his own he began wheezing again. The doctors tried all possible treatments, but after 5 more days of working extremely hard to breathe, Max was intubated for the third time.

What was so strange about his third intubation was that his wheezing stopped after the breathing tube was inserted. This led the doctors to believe Max had an upper airway problem. After 6 days on the vent, Max was extubated once again and an ENT scoped his throat. No upper airway obstruction was found. He was doing well breathing on his own, but he began to shake and move his arm randomly. He had a glassy look in his eyes and was unable to focus on anything. He had this look during intubations 2 and 3, but this time it was worse. An EEG of Max's brain activity showed he was having continuous seizures. The cause of the seizures was never pinpointed, but some possibilities were drug toxicity, hydrocephalus or the GVH.

Despite the seizure activity and medication to suppress it, Max’s breathing had improved to the point where he was receiving very minimal oxygen support via a nasal cannula. But one morning after a breathing treatment Max experienced a pulmonary hemorrhage. His lungs were bleeding, and he had to be placed on a vent for a fourth and final time. The next day his lungs bled again, the left side of his heart was collapsing and he was placed on an oscillating vent. His kidneys stopped working, and his body began to fill with fluid. The doctors sat us down and told us there was nothing more than they could do. We called our family and began preparing for the worst. But the worst didn’t come for a few more weeks.

Max lived through the night and his vitals improved. His kidneys began working again. He amazed everyone. He improved enough to be placed on the conventional vent once again. However, that is where the improvement stopped. Max never made any advancement on the conventional vent, and several times had episodes of lung bleeds. The doctors discovered new bacteria had invaded his lungs, and he began to show signs of infection. His GVH flared once again and he began another round of ATG to treat it. His blood pressure had to be maintained with pressers, and each day it seemed the need increased.

During this time Max’s kidneys began to shut down again. He gained a lot of fluid weight and dialysis was started. Max managed well, but his lungs did not improve with less fluid. In addition, he now was diagnosed with pulmonary hypertension. The conclusion was becoming clear: Max’s lungs were permanently damaged from so much ventilator need and from infection. The likelihood of ever coming off the vent was remote. In addition, his body was now dependent upon dialysis. His graft vs. host disease was not under control and the risk of treating it outweighed the possible benefit. The doctors sat us down again and this time it was a group of all specialists associated with his care. We asked them if there was anything else to try and they said no. Max had reached the end of treatment and his body was not healed and was, in fact, only continuing to decline.

We made the decision to stop his life support two days later after some family arrived to surround him with love for the last time. On the Wednesday before Thanksgiving, Max was placed in his mother’s arms with his father kneeling beside them both. He was resting comfortably as they turned down Max’s settings on his machines. The respiratory therapist removed his breathing tube and Max took his last breath. A few minutes later, his heart stopped. The face that we were so excited to see free from tubes and tape looked blue and ashen. His mouth was dry and gray. His spirit was gone, and the body that was left behind was devastated.

Max’s last days included great pain and suffering, and only his passing brought him rest. We would have taken our son home in any condition, no matter how sick, but in the end, that wasn’t possible.

The doctors who visited Max’s body after he died all said the same thing, he was an amazing fighter and there was no other choice. The damage to his body would have taken him shortly. We told one of the doctors that we wished we didn’t have to make the decision, and he said, “Oh, no, you don’t have to make a decision, the decision has already been made.” To the end, we are so proud of our son.

We are grateful for the tremendous effort displayed by all of Max’s caretakers, those with us on his final day. We received wonderful care during our entire process, and we are indebted to their compassion forever for helping us get through those difficult months.

Mike's Tribute

2003-12-02T00:25:00.000-06:00

Father Kilbridge said if I get choked up I just need to STOP and let it subside. I’ll keep that it mind.

Thank you Father Kilbridge for being here today. Sunday when we met with you and you told us you remembered baptizing Max, it meant a lot to us. After that day, the only other time Max met a priest was in the hospital in October when the Blessing of the Sick was performed on him. Life in between these two events was pretty good for Max, but life after the second one was very hard. Thank you for remembering us and for remembering that with a name like Max Alexander it was like Alexander the Great. We certainly thought so.

Thank you also to my wife, my bride, my life, Margaret. No one loved our son more and no one could better speak of his life. It speaks your love and his life that Max could only say two words, “Mama” and “Bye-Bye.”

But my task is not to look backwards, it is to look forward.

The death of a loved one leaves many questions, and the death of a child even more. But we know that “Why Us?” is a trap and that lingering in the past leaves us powerless to seize the moment. And what a moment today is. We will not be able to celebrate our son’s Preschool, Kindergarten, Elementary, High School or College graduations. We will not see him score a goal or win a science ribbon or paint a picture.

We have today. And Max has today. We know what it is to live life day to day. We know what it is like to live like every day might be the last for our son. We know that every day, and in fact, every moment of every day is special. Today is our day to remember and to celebrate our son. We have this time, with these people for whom Max meant so much. Yesterday so many of you saw the boy you only knew in pictures or online. As Margaret said, however, he was real and we loved him deeply. He is gone to this earth but his spirit remains. We hope you saw that last night. We hope that the pictures and the slideshow made clear that while there was great pain, there was also great joy. We hope that we didn’t look too sad. We were too proud to be sad. We cried together before you all arrived and we cried after you left. But in front of all of you, we were proud to show off our son. Our champion.

But all of us who have been touched by Max or by his struggle have the same problem – how best to recall his spirit.

Many people might feel that Max was so chemically controlled that he didn’t even know what was happening to him. Or you may feel that Max lived so long and fought so hard because he was a baby and what else was he going to do? But anyone who ever tried to feed Max a food he didn’t like or made him stop walking around the dining room table knows that Max was determined and in control of his choices. And Max chose life. Again and again. When letting go would have made so much sense, Max chose life. He chose pain and suffering for the chance to live another day. Even with his body rotting from the inside out, he chose to fight from within.

What for? For a mother’s love? For a sister’s hope? For a father’s dreams? We’ll never know. We just know for certain that his will was indomitable, and his heart enormous. Even when the doctors told us that Max’s body would not heal – that his disease and injuries were not reversible, we struggled to say no to such spirit. It was the kind words of an intensive care doctor that helped ease our minds. When we said we wished we didn’t have to make the decision, he said, “Oh no, don’t feel like you have to make a decision, the decision has already been made.” And it was then that we were reminded that there is medicine, there is determination, and there is something else – something untouchable and invisible and in control of the unexplainable.

So it’s what comes next that matters most. Because his choices, and our choices, and his efforts, and the doctors and nurses efforts all have to add up to something.

We received such kindness and charity in our time of need that we have a new understanding of those two words. There is more kindness in an hour of nursing than a lifetime of “good intentions”. There is more charity in a shoulder to cry on than in a lifetime of writing checks.

We lived in a Ronald McDonald House – a house for families of terminally ill children. We imagined that there would be a pall in the air of immense sadness. But the reality was much much different. Instead we felt like we were part of the most loving and caring family imaginable. We were living in the depths of despair but looked around and saw hope. Always. Always hope. For every parent of a terminally ill child there is hope until the very end. You never give up hope, you just change what you hope for.

Today we hope for Max’s impact to last past his death.

We received many emails and notes that Max’s struggle had made people look at their own lives differently. Many people found out they had unknown fundraising abilities. Many people found out how easy it was to send a package or write an email. Many people found that there are great rewards to getting over the “I just don’t know what to say” hurdle. But as Grace told me, “It’s OK, Dad, you don’t have to cry. Bubba’s not sick anymore.” So for the parents who said they are looking at their own children differently and they are appreciating them more, I have to ask, can you do it today? Can you do it with Max above and not sick here on earth?

For people with illness or disease, there is a need for contact. When reaching out there are only two reactions, COMPASSION and PITY. Compassion is love followed by action. Pity is sorrow followed by inaction. Compassion comes from the belief that people live with a disease while Pity comes from believing that they are dying from it. It is our sincere hope that you Max’s death grants us the wisdom to recognize this important difference and to always act with compassion in the face of illness and disease.’ Can you follow example of our daughter, who saw children disfigured and diseased and never asked a question of them except, “Do you want to play?”

Can you never, ever, say to yourself, “I’m sure they don’t want to talk about it”?

The lessons we learned by caring for our son will stay with us the rest of our lives. We will try to be better people, better parents and better friends. We ask today that while the memory of Max will fade for so many of you, the actions he helped you do will stay with you forever. It will be up to us to find permanent and lasting ways to remember and honor our son, and we will reach out to all of you at times to reach this goal. But we ask of you some simple things that are sensible, can be done everyday, and in their own small ways honor our gentle son’s life:

Hug your kids each day. Tight. Take a day off just to be with them. If you are a father, acknowledge the importance of the mother and vice versa. Kiss your wife or your husband in front of your kids. Visit them at school. Thank all of their teachers. Show them love. Show them compassion. Teach them that there are children for whom today is not a guarantee, it is a privilege.

Life is precious. Even one day.

Thank you for this day, Max. Thank you for your lessons. You have all my love. I will miss you forever. Please look down on us from above and help us to live in love.

Margaret's Tribute

2003-12-02T00:23:00.000-06:00

There are so many people who are mourning the loss of our son Max. And yet, there are not many people who really knew him. His prematurity and susceptibility to illness kept him inside and away from crowds, and his treatment over the past four months kept him from home. Max has never been in a grocery store, he never attended a mommy-baby class, and in fact, the last time he was in this church was less than a year ago at his baptism. So when Mike and I were trying to decide whom to ask to speak here today, we had a hard time coming up with names. But then we realized the answer was simple, who knows him better than his mother and father? There was the Mighty Max that people came to know and love from his web site - strong, courageous, and determined. But he was so much more than that to us. He was real. I must admit that at times even I have a hard time believing that statement. Sometimes I am amazed that we were so blessed to have such a beautiful child. Let me tell you about him…

Max started dying from Hurler Syndrome the minute he was born. He was premature, he was developmentally delayed, he had asthma. From the time he was 3 months old he had to be held down and given breathing treatments three or more times a day. He took medicine for his acid reflux, and he had therapy to strengthen the muscles weakened from the brain hemorrhage he had at birth. To someone who never knew Max, these facts make it sound like Max had a horrible life. But he didn’t. He was happy, he was unaware of his illness, and he was capable. He found ways around obstacles placed in his path. For instance, because of the deformity in his spine, Max had a hard time pushing up to sit from a lying down position. So what did Max do? He would crawl over to something, pull himself to stand, and then plop down on his bottom. With all that Max was able to accomplish, how can one ever say a challenge is too hard?

Max had a killer smile and a dimple that could knock your socks off. He loved his bottles and his pa-gos, he loved his electric piano, he loved his Baby Einstein movies, and like most kids, he loved things he wasn’t supposed to have. Many times we used the remote control or cordless phone as motivation to get him to do his exercises. Max’s schedule of doctor’s appointments and therapies challenged even my organizational abilities, and without a doubt, his knack for catching every germ that came his way boosted regional sales of hand sanitizer. But if you really want to get to know Max, just look at his sister Grace.

Though Max had an uncanny resemblance to all other babies born with Hurler Syndrome, he still looked like his sister. Their beautiful big brown eyes, tiny noses and down-turned mouths let the world know that they were siblings. The smiles and laughter they shared told the world they were friends. Max loved no one more than Grace, and she was proud of everything he did. Grace was always determined to get Max to laugh, and she was always successful. Their favorite thing was to take a bath together – Grace in the big tub and Max in his little tub on the floor next to her. Bathtub peek-a-boo and splash mommy were the games to play. Neither one was aware of how sick he was. Grace hugged and kissed him, no matter how bad he looked. After his death, she crawled right into bed with him and got under the covers. Some may chalk it up to the innocence of childhood; I attribute it to the bond they shared. Grace loved him so that she offered Max her spirit so that he could live. I believe that thoughts of Grace kept Max alive for so long.

The thing that we will remember most fondly about Max was that he was a good boy. He never held a grudge against us for all of the medication we had to give him, the doctors’ appointments we made him attend, or the therapies we made him do. He fought to the very end, and tried harder than we could have ever asked of him.

To say that Max suffered greatly over the past four months is an understatement. To say that he is in a better place now than he was before he died is a fact. He was so sick, and death is so ugly. But Max was beautiful and we are so proud of him. We are proud of his will, his determination, his inventiveness. We are proud that he brought out the good in so many people. His life was painfully brief, but his influence was great.

Thanksgiving

2003-11-28T12:25:00.000-06:00

To our family and friends, we thank you for the condolences we have received. We hope these arrangements will be accommodating to most people. It is our intention to celebrate Max's short life as much as we can while at the same time we mourn his loss so deeply.

VISITATION: 5pm -8pm
MONDAY, DECEMBER 1
Peterson Funeral Home
Contact: Tom or Rosie Ahern
6938 W. North Avenue
Chicago, IL
(773) 637-4441

FUNERAL: 10:30am
TUESDAY, DECEMBER 2
St Vincent Ferrer
1530 Jackson Ave
River Forest, IL
(708) 366-9266
All our love,
Mike, Margaret, and Grace

Farewell Sweet Prince

2003-11-26T12:29:00.000-06:00

Day +104

At a little before 10am the final flicker of life left in our son Max's body ascended to join the rest of the stars in the sky. Look up tonight to find the star with the most brilliant twinkle and you will see his glow.

It should be noted that to the end he fought and it was only in death that we could see just how destroyed his body had become. The passing was very quick, indicating how dependent on machinery he was and how sick he had been. The agony of the decision to remove his support was lightened by feelings of relief we both felt in the time after his passing. Even at the final moment, when the doctor had to listen for a heartbeat, Max still was fighting and the doctor had to come back a second time. In the end, his will was stronger than his body. And his spirit has carried him to a better place - free of pain and suffering. He was and is our mighty mighty Max.

Happy Thanksgiving to all. We are thankful for the 16 months we had our son, and especially for his his effort these past three months. Thank you Max. Thank you angel. You are our love.

Grace will be coming over shortly. She just asked us if Max "was just bones now." We told her he still has skin and hair and all the outside stuff but the inside stuff that made him play and love went to heaven. She told Auntie Bethie that "it's fun to play with people in your dreams." She will be our salvation.

Please pray for his soul and for strength for our family at this difficult time. Please continue to look to this update for funeral arrangements.

With love from Minnesota and from above,
Mike, Margaret, & Grace

Day +103

2003-11-25T15:09:00.000-06:00

Today we had fun with Max. We decided against dialysis so we could have less people and machines in the room. We all made hand prints on big pieces of paper, the boys in blue and the girls in pink ink. Then the child life specialist brought in some gel and we made the mold for a plaster cast of Max's hand. We put on kids music and just enjoyed our time. Grace was her usual rambunctious self and didn't stay in the room long. She even toppled off a tall chair trying to watch them draw blood from Max's catheter. We had some alone time with her today and explained things to her once again. She was paying attention for about a third of the time, which isn't bad. There are times when it registers right to her core what is happening, but just as quickly she turns her attention to something else. She is 3 and a half. It's a good age for what is going on. She is the light of our lives. Grannie arrived last night and Auntie Beth, Auntie Katie, and Grampa J all arrived today to see Max and once again we were able to surround him with so much love.

Tonight we told stories about a lot of the nurses and remembered so many good times we've had under the worst of circumstances. We had quite a few laughs - a little humor even on our darkest nights seems to help.

The last couple updates solemnly brought everyone up to date on Max's medical status so there's no need to go through it again. We have received such wonderful encouragement and we hope that whatever decisions we make will not be judged but will be respected.

To the late night readers: Please add Max again to your prayers for wellness, in every sense of the word. To the daytime risers: Please make Max's journey a part of your day - call a loved one, hug your child, remember that there is great love even in the most troubled times.

The best things come in small packages (children),
--Mike & Margaret

Day +102

2003-11-24T15:13:00.000-06:00

Mike and I met with representatives from all of the medical teams caring for Max to discuss his overall health. Each of Max's individual problems range in severity and likeliness of being treatable. But with all of the problems combined, the doctors have given Max a less than 1% chance of surviving. And if he were to survive his quality of life would be greatly compromised.

For the past several days we have been discussing just how far we want to push our son. We have already decided against any major intervention such as chest compressions if he codes, chest tube placement if his high vent settings cause an air leak in his lungs, and any other major procedure unless the team feels it will greatly benefit him. At this point, they do not have any other treatments to add and have said we have come to a point when we cross the line between doing things for him and doing things to him. Though we have been realizing all of this for several days now it is still difficult to take. As one of the doctors said, it is hard because the doctors at this institution are willing to take things very far and then it seems suddenly they have stopped. We asked them if there was anything in the back of their minds to try, no matter how dangerous, and they all said no, nothing that he could survive. We have so much trust in them that we know that if there was something they could do for Max they would be doing it. Now we are left with many difficult decisions, decisions that no parent should EVER, EVER have to make. But we must make them nonetheless.

First and foremost we are going to make Max comfortable. In the past few days it appeared to us that Max started to have more pain. He had been receiving a paralytic to help him on the vent, making him unable to move and therefore indicate pain to us. He had moments between doses where he would move a bit and he seemed okay. But very early yesterday morning in between doses he seemed much more uncomfortable. His pain medications have been increased dramatically several times since then. With the increase of these medications, we run the risk of bottoming out his blood pressure which has been kept up with the help of pressers for several days now. We understand this risk and know that our efforts to make him comfortable may take him from us.

The doctors also gave us the option of withdrawing his life support. We are struggling with this decision. The benefit of doing this would be to offer Max some sort of dignity in death. We would be able to hold him and comfort him and surround him with love. But this is weighing heavily on our conscience, and we have not decided anything yet. While we agonize with these decision however, we are risking a more severe episode for Max that could take him when we are less prepared.

We realize that this is very hard for people to read and accept. We ask for your continued prayers so that we may make the best decisions for our son.

Love,
Margaret & Mike

Day +101

2003-11-23T15:18:00.000-06:00

WBC 10.4

Max has had a rough couple of days. The biggest problem is maintaining adequate blood pressure. They have him on the maximum dose of Dopamine for this, and they are running out of options. There is no real good explanation for this except for seizures or infection. Today Max gets a day off from dialysis which means it will be the first time in over a week his kidneys have had to go it alone. His blood pressure status would probably not allow for dialysis anyway. We'll know more of the severity of his kidney problems by tomorrow. Neurology will come and observe him for seizures this morning.

We've been up most of the night asking ourselves the most difficult questions possible. We are worried that the paralytic they have Max on is masking pain. If so, it's possible he's been in horrible pain for quite a while now and we haven't known it. We are asking the doctors to critically assess all aspects of Max today. They do this in the general sense, but they rely on nursing and mom and dad to tell the general kind of care news. Today we asked the doctors to clinically observe him and to tell us his pain status.

Our son has suffered so much and is still suffering. His tube from his stomach is continually bringing up old blood and bile and it makes us think his stomach is rotting from the inside out. We were given a book that very carefully explains the physical and medical processes of death. Both Margaret and I read this and came to the same conclusion: This book is what is happening to Max. Max is dying. That may seem obvious to many readers of these updates, but for us it has taken a long time to reach that conclusion and to try and accept it. Every process in his body is showing signs of death. He has been very patient, he has made some wonderful achievements, but he may have too many injuries to overcome. If the end is determined we do not want to be in his way because of our hopes and dreams.

We were supposed to have a big team meeting on Tuesday with docs from ICU, BMT, pulmonary, neurology, and maybe renal. But we don't know if Max can make it to Tuesday. So we will try to talk to as many people as we can today.

Last night when I hustled over to the hospital from sleeping by the phone at the Ronald McDonald House, I came off the elevator and heard "Silent Night." It was coming from one of the house's Christmas decorations. I was zipping through the park as fast as I could. Snow was falling, and it was a silent night, indeed. Outside it was beautiful and the song was in my ears: "Holy infant, so tender and mild. Sleep in heavenly peace. Sleep in heavenly peace."

Please continue to hope and pray for our son. Another boy who was on our unit for leukemia passed away at his home last night. Their daughter and Grace were both Belle for Halloween at the house.

Safe inside the hospital with a blizzard outside,
Mike

Day +99

2003-11-21T02:39:00.001-06:00

WBC 8.9

It's 2:30am on Friday night and I'm finally going to lay down from a long hard day & night. Max put another big scare into us today, he began to require more oxygen and the resident told us, "if he keeps going like this, I don't know what else we can do." But after dialysis ended, and things calmed down in the room, Max began to improve a lot. He was also given Factor 7 which helps clot blood in case he had another bleed. Either that or just great nursing or both was the reason for the improvement.

I just spent the last two hours working on stopping some of the bleeding on Max's eyelids and scalp. When they returned from surgery last week Max's eyelids had little cuts on them and were bleeding. Since then he's had huge scabs on and over his eyes. Also, after all the EEG wires were removed from Max's head a few days ago, some more bloody spots were created. So as if he hasn't suffered enough, now he looks totally beaten up and tonight I worked with "topical thrombin" to try to cover the wounds and clot them up. It seems to be helping.

Maybe at this time I will try to describe Max's appearance: In addition to all the bloody marks on his eyes and head, his face is still squished up into fish lips from the ventilator. Consequently his lips are dry and chapped. His head is covered in a nice layer of fuzzy fur and his lip and chin have what could best be described as a moustache and goatee. He lays mostly on his back, because that position keeps his saturations and blood pressure at the best levels. He has skinny arms and legs from dialysis, and though he is less puffy overall, he does still have a big belly, and it is distended from not stooling. His body is still covered in gvhd skin; spotty, splotchy, dark spots, etc. It doesn't appear to be getting worse or better. He has a central line for meds coming out of one side of his chest, a dialysis catheter coming out the other side, an "arterial line" for blood draws coming out of his left forearm, and a foley catheter coming out of his you-know-what for urine. His legs are rashy and seem to just hang limp below his body. It's rare that his legs move at all. They haven't been used in months. Max is incredibly weak from not using his limbs or supporting his weight in any way. He also gets a paralytic to keep him from moving since he also breathes more willingly with the ventilator.

This is all to describe his appearance, but the best way to imagine it is to say this is no way to live.

Today I saw Anthony (Tony the Tiger) and his dad visiting the unit. They were discharged last week and it's amazing that on Day +36 they are already having reunions. He looked awesome and was being a very good boy. Also I read on their website that Bella was leaving the Ronald McDonald House and heading back to Iowa with her parents. She also has been doing great, and went home tonight on Day + 119. These are two amazing stories and I mention them in the hopes that some of Max's supporters can check out their websites and send them some warm wishes. It's not hard to root for these kids, they are little champions and we wish them the best. It is hard to look at their success and wonder why not us? No, more accurately, it's downright discouraging. But every kid is different and must go down a different road. Max's has been uphill the whole way. We never expected things to be easy, but we wish for Max's sake he could have had at least a little bit of good luck. We wish these families the best and wish upon them the feelings of pride and success that reaching these goals warrants, and the appreciation for these achievements that can get lost in the logistics of caring for special children.

I guess I'm just sensitive to this kind of news because technically, at this hour, it's Day + 100 for Max and that should mean it's about time to go home. But for Max it will be just another day (of so very many) in intensive care. He's been working so hard to survive and to fight on and I am so proud to be his father. When his oxygen needs went up I was near tears. But when they went down, I felt like dancing. Is he any less likely to die because he helped his saturations? No, but he was less likely to die today, which in turn means he's one day further down the road to recovery. And for that I am thankful. We are so very frightened of the potential outcome of death for our son. And if we take one step back, we are so very disappointed in this process, that someone working so hard can find no relief. But we are happy to sit with him again, for another day, and we know that there is a glimmer of hope of many more days so we will cling to that. As Dr. Grewal, our original primary transplant doctor told us, "You never know who the next miracle baby will be." We do know. It is Max, our miracle of strength and determination, our miracle of patience and resilience. He is our joy.

Good night,
Mike

Day +98

2003-11-20T10:20:00.000-06:00

WBC 9.1

There is not much to report on the medical front today. Max's dialysis went well. They had to turn his dopamine up during the run because his blood pressure dipped, but that is not uncommon. Otherwise, he has been pretty stabile. The doctor told Mike today that it was time to "fish or cut bait" with the GVH. (I think that is what he said). In other words, it is now or never. His skin has been pretty stabile the past few days so they reduced his steroid dose today in the hopes of making him less immunocompromised. They want to see if he is going to have another flare. If so, I think they will hit it with another treatment, which has yet to be determined. GVH is a horrible, horrible thing.

In other news, Mike's mom will be staying a few extra days until his sister can come up and help out. Max has had so many things happen the past few days that we need to be able to both be at the hospital if things go wrong. So, thanks Grandma Chick, Dana, Auntie Katie and Grannie who are all making arrangements to come this week.

Grace caught a cold so she has been cooped up in our room. We are hoping she feels well enough to attend the RMH field trip to McDonald's and the new Cat in the Hat movie tomorrow afternoon.

Two things made me happy today. Since he was so stabile, I got to lay with Max in his big bed tonight for the first time. It was strange but very nice. Also, Mike and I watched some footage we forgot was in our video camera. It was from May to July. The last footage was in our room at the RMH. So much of it made us laugh out loud. Grace is so good at making her brother laugh. I imagine that is what he has been thinking about this whole time. It is hard to think that the boy on the video who was crawling, dancing, babbling and trying to walk is the same child I look at right now. We want him back so badly. Please keep praying for this to come true.

We have been receiving so many emails recently and we apologize for being so tardy to reply. Please know how grateful we are for them.

Good Night,
Margaret

Day +97

2003-11-19T10:21:00.000-06:00

WBC 8.4

While no one here is convinced yet that there is no more hope for our son, there are a lot of concerns regarding the "what if" part of the equation. And there isn't really much of a point in trying to not type the words since we're worried that Max is going to die every hour of every day. So here it goes: The possibility that Max's problems are unrecoverable increase every day he does not get better. There is a very real chance that he may never get off a ventilator. And there is the very real chance that he has unbeatable graft vs host disease. These two problems have been holding hands since Max got his new cells. The lungs are, however, the main issue. This is his fourth ventilation, and it has lasted almost a month. During this time he has been put on and off an oscillator and has had multiple lung bleeds and infections. The damage to this fragile part of the body is great. So great, in fact that he may never recover. This is probably why even after getting all the extra fluid off his body they don't sound much better, and he's not having the best blood gases. When I asked the doctor directly if I thought he could get off the vent, he said, "the odds are against it." Well, that's our Max.

None of this is news to us and we want most of all to consider Max's best interest. The doctor today spoke of Max's recent blood pressure issues (now amazingly high AND low at times) and thought we could begin to have conversations about whether or not we would want compressions (CPR) should Max's blood pressure bottom out. In other words, we may soon be having conversations regarding the difficult life or death decisions that parents of terminally ill children have to make. In addition, Margaret talked to the child-life specialist today about how to talk to Grace about her brother should he die. I also spoke to the head daytime nurse to try and make sure we are always given a nurse that knows us and knows Max because it could make a huge difference in respect and dignity should that time come. And that word is key, dignity. We don't want Max to suffer any more than he has to and we don't want his body to be damaged any more than is necessary. But we also don't want to be put in that position, so our primary hope is that Max begins to recover or shows a path that we can follow with confidence of his best interests.

Our hearts are broken, but our hopes remain. They have not given us the same speech that they gave three weeks ago, but it's been clear Max is not making much progress. We are trying to be realistically hopeful, if that's possible. He is still inside of his very beaten-up body. We've seen him trying to blink or raise a fist lately and we believe that he still wants to fight and wants us to fight for him. It's amazing that with all the technology, all of the x-rays and CT scans, the doctors still don't see what we can see - Max's giant heart.

Thank you everyone for the recent notes and kind words. We appreciate it so much. Please continue to pray for us, and all of the very sick children in hospitals today.
--mike

Day +96

2003-11-18T10:23:00.000-06:00

WBC 8.2

Max is very unstable. He had a very rough night. Yesterday they were worried about managing very high blood pressures, now he is on dopamine for low blood pressure. He is currently getting dialysis again. So far, while he has taken a lot of weight off, it has not helped his lungs. His skin is still not looking very good which indicates that his graft vs. host disease is still not under control. They are managing each symptom with different medications, but one thing is just chasing the next. He may have had another bleed in his lungs and if he did, it might be from another infection. At this point, after all the graft vs. host disease (and the medication to treat it) Max probably does not have the ability to fight off another infection. That's been an opinion expressed by many doctors, not us. The doctor today said, "if it is an infection, I don' t know that we'd be able to get on top of it." And he described Max's life as being fragile "from shift to shift, hour to hour. He's a very sick little boy." We would still like to believe that he can beat anything. Last night things looked quite bad for Max. The doctors were and still are very worried. Today there are more people around, and they are all scrambling to try to figure out the big picture. Please pray for our son to have the strength to fight on if the fight is worth winning and the peace of mind to let go if the damage has been too great.

--mike

Day +95

2003-11-17T10:24:00.000-06:00

WBC 6.0

Howdy Max Team,

Our little dude was up quite a bit last night and was feisty with his blood pressure. So they changed some meds and now he's taking a snooze on his side. This allows his back to "air out" since it's pretty eroded from being on it for so long. His skin has been peeling and breaking down. Hopefully he'll tolerate it. Thanks for all the support for Margaret's honest update. Everyone's support has been, again, a source of strength. Since there's not much news to report yet, here's another guest report filed by my Aunt Nancy. She just got back to Pennsylvania and sent this back to us. I really like her military analogy. Here it goes:

--mike
_____________

Hi Max Fans! I was fortunate enough to be able to spend an entire week with Mike, Margaret, Grace and Max! I was hoping to be Max’s good luck charm, but during the week Max continued with ups and downs. I want to tell all of the loyal readers that Max truly is the fighter that you all believe him to be. He reminds us daily with the raise of his fist or a scowl on his face that he is still here and ready to do battle. It was so reassuring to actually see that Max has the best army behind him.

It’s also easy to see where Max gets his strength. Mike and Margaret are nothing short of amazing. They’re prepared for the worst and enjoy celebrating Max’s milestones with all of us. They never leave the war room. Their strength and dedication is unbeatable. Max couldn’t have a better advocate.

I feel the need to spotlight two of Max’s nurses, Anmarie and Linda. Not because they are the best (because they are all really great), but because they are the nurses that I met last week. So many great hands take part in Max’s care, but these two truly care for our dear Max. I watched them deliver continuous care with the gentlest hands, and the softest voices that remind Max that they’re still behind him.

And then there’s Grace, AKA, “Princess Many Feathers,” “Dr. Sophie,” or “Chloe” and at times, “Mother”. What a great time we had. I love her imagination and am completely amazed by her ability to live in the “now”. No dwelling on the past or worrying about the future for her. She was truly a joy.

I could write for days, and I know you would read the whole entry because if you’re here, you’re a Max fan. I’ll stop here for now, but just ask that you all continue to pray for Max. Please also say a prayer for Max’s doctors. If you read Max’s updates and have never dropped a line in the guest book, please consider doing it soon. Don’t be shy…Mike and Margaret love to read the entries. It keeps them going through the long days and nights and Fairview.

Let’s hope Max continues to do well with dialysis and the vent.

All my love,

Nancy

Day +94

2003-11-16T10:28:00.000-06:00

WBC 4.8

Sunday November 16
Day +94
WBC 4.8

This is Mike with a quick update from Sunday morning. The rest of this will be from Margaret from last night. This morning he had his third round of dialysis and again, he did very well. They took off about 1.4 kilos today. One part of the machine broke about 20 minutes before they finished, so they stopped early, but he still got most of it. His legs, face, and arms look very skinny. But his belly is still quite big. We need someone to do a "stool" dance for him and get some things moving. They also were able to turn down the rate a little on the ventilator last night so he's still making progress. Now, on to Margaret, and Saturday's report:

Max lost 1.3 kilos today from dialysis and is looking much better than 2 days ago. They had hoped to get 2 kilos off of him today, but his blood pressure dipped a little during dialysis so they backed off a little. The oscillator is still parked outside his door. His blood gases have been on the fence the past few days, and Dr. Cornfield thought he might benefit from it, but he held off to see if today's dialysis would make a difference. It seems to have done just that, as his vent settings were turned down a bit tonight after having been turned up last night. It is a constant seesaw. He will be dialyzed again early tomorrow morning. Since last night he has been bleeding at the site of the new catheter. He was re-stitched two times today and it finally looks like it is going to hold. His blood pressure has been all over the place today, and at times he has been quite uncomfortable.

Keeping in mind the seriousness of Max's lung and kidney issues, Mike and I are mostly concerned about Max's GVHD. New redness on his legs and arms which appeared a few days ago has everyone concerned. We are praying it is a drug reaction, but with his extensive history GVH is the likely suspect. His immune system is already very suppressed from the GVH and the many treatments he has received for it so far. He is extremely susceptible to infection right now and further treatment would make him even more vulnerable. The doctor told us that it is not the GVH which kills you, it is the infection you get when you are vulnerable. This is all very hard to deal with, and we were desperate for the last round of ATG to stop it once and for good.

It has been an emotional day for us. All of the stress from the events of the past few days caught up a bit. Yesterday's surgery and dialysis went very well but it was scary. All of the emotions experienced while taking care of Max in this setting also took a toll tonight. How do I put this? We have been feeling lonely. You are probably asking yourself, how can this be, with all of the support that so many people have showed this past week? Our loneliness stems from the fact that we have the sickest child on 4A, and one of the sickest children at the RMH. People don't know what to say to us, and at times even have a hard time looking at us. When we walked out of the room with Max yesterday to take him down to surgery everyone at the desk got quiet and some people looked away. When we took him down to CT last week people in the hospital were gaping at us and it was all I could do to shout, "This is my son, he is not a spectacle!" The past few months on 4A have been very difficult for the staff. Many children have died, and Max is now the last one of the "really sick" patients who is here. We have been getting the sense from some that they do not want to be in our room, not because they do not like Max or us, but because it is a hard place to be. But no one knows that better than us, and no one knows it better than Max.

At times we worry that people have given up hope, that they know he is going to die. We struggle with these feelings every day. But Max keeps on trying so we have to too. We feel it is an honor to take care of him, not just because he is our son, but because he is such a strong and courageous person. How could you not want to help him? He has been lying in bed for almost 3 months now just waiting for us to save him. He looks terrible. He is puffy, bloody, rashy and hairy, but he is still MAX. And if he is going to die, then that is even more reason to take better care of him. He has earned it. He deserves only the best.

Please do not misunderstand me. Max has received excellent care here. We are so grateful. It means so much when nurses who are not assigned to Max stop by just to see him. And to the staff who cares for him every day, you have no idea what a gift you give us. You give Max dignity. One respiratory therapist recently went above and beyond and it meant so much to me. She said, "you treat them like they were your own." How true.

Despite how hard this all is, we are still in a better place than some, and we think about this constantly. Yet we are not at all where we thought we would be. This is just not how things were supposed to go. He has had such a hard life, he deserves better.

Now, I know I have rambled, and I have succumbed to writing an emotional update. We try to stay away from doing this for a few reasons. Believe it or not, we have received complaints when we have done this is the past, and at this point we cannot deal with the negative judgments of others. But, here it is. Take it or leave it I guess!

In other news, we had several nice things happen yesterday too. When Grace woke up yesterday she asked if we could have a family day. So, Mike's mom and aunt sat with Max while Mike and I took Grace to dinner at her favorite Minnesota restaurant, Appleby's. She loves it because they give her a balloon, although this time the hostess skipped the balloon but asked Grace if she smoked. Yep, that is right, I guess she was trying to be funny (nice). Inappropriate comments aside, we had a nice time at dinner and we both returned to the RMH with Grace. We all climbed in bed together to watch a movie. This is something we have not done in over 3 months. Grace and Mike both fell asleep, I think I may have too for a few minutes.

We also had 2 special deliveries for Max yesterday. Two different former 4A families returned to the unit and distributed toys for the kids. The one toy did not have a tag on it, but the other was from the Hope for Henry Foundation. If Max was awake he would love playing with the "Little People" toys, and I can see him chewing on one of them right now. Maybe some day ...

Finally (boy this update is long), we must thank Aunt Nancy for staying with us this week. Grace loved her and so did the other kids at RMH. She was such a great help to us, and we were especially grateful for her presence during the events of the past few days. She was more than a little sad to leave Max last night, and we were all sad to see her go. Thanks Nancy!

-Margaret

Day +92 - Let the Juicing Begin

2003-11-14T10:29:00.000-06:00

WBC 3.4

Max came through surgery like a champ. But of course, that's exactly what he is. We are so proud of our guy! It's an unbelievable scene, to transport such a sick little guy to surgery. It involves taking him in his bed, his IV pole, his heartrate/BP/saturation monitor, his ventilator, and his nitrous oxide machine, all at the same time. It took about 6 people, with us trailing behind. When we got to the surgical floor we had to say goodbye and our hearts were breaking. We had to go to the recovery room. It's the same room we were in before Max had his first line put in (and all of his other pre-transplant stuff done). Back in late July, the last time we were waiting for results, we were starting with a much healthier kid. It seems like a lifetime ago. The surgeon came out after about an hour, and told us everything went well, and that the dialysis catheter was fed into his heart without any trouble. We came back up to the room to wait for him, and he arrived soon after in a big bed! Margaret had requested a bigger bed to allow us to be able to sit or lay next to him. The crib certainly took up less room, but it has been hard to feel very close to our little guy. We still can't hold him or move him to much because of the ventilator, but it will be nice to be able to be right up next to him.

At around 1:45pm they began juicing him with dialysis. They hope to take a kilo off today and they will be back in the morning. The blood comes out of Max and is passed through a series of filters and gets put back in. Once it's back inside Max, it will be carrying less waste and some of the fluid still in his tissues can be drawn back into the bloodstream and be filtered out. There are many risks, including a need for permanent dialysis, but the hope is that Max will be more stabile from a fluid standpoint in a few weeks. So far it's only been about a half hour, but he seems to be tolerating things well. The dialysis doctor is pleased.

He is still fighting so hard to live. He is so patient. He is just fighting along hoping the doctors can figure out a way to heal his lungs and beat his GVHD. What a good, good boy. WE LOVE YOU MAX!

We have also heard that he fundraiser called Labor of Love in Park Ridge, IL, was a tremendous success in Max's honor. Maybe all that goodwill is what gave him his strength today. Thank you to all who attended, and especially to Mary Beth Micucci for nominating Max and for helping to organize such a terrific event. Thanks also to Aunt Nancy and Grandma Chick for watching Grace today so we could both be with Max.

We don't know how much more Max can take, or how much more the doctors can do, but he sure is trying. He is inspiring so many people, and we are so very proud of him.

--Mike & Margaret

Day +91

2003-11-13T16:00:00.000-06:00

Max's vent settings were increased overnight and this morning with no improvement to his blood gases. His blood pressure dipped and his urine output decreased. Consequently, his weight is up, and his kidneys aren't able to keep up as well as they have been. The doctors have decided that Max needs dialysis. He will be taken to surgery sometime this afternoon to have his Hickman line replaced with a dialysis catheter. If he returns from surgery early enough dialysis will begin tonight. If not, it will begin tomorrow.

There was talk of placing a temporary catheter in his leg at the bed side because of the risk of him traveling to surgery and the risk of the operation itself, but the dialysis doctor felt we should seize our opportunity. If Max's lungs deteriorate and he needs to be placed on an oscillator again they will not be able to place the permanent catheter.

Please continue to pray for our dear Max. He is trying so hard but he keeps hitting road blocks.

-Margaret

Day +90

2003-11-12T10:31:00.000-06:00

WBC 2.9

Tonight we had some stress. Max's breathing seemed to be heavier on the vent. We've seen Max work hard to breathe before and the ventilator has always taken care of the problem. So to hear wheezing going on in his lungs while the ventilator is working is very distressing. What is causing this problem? As usual when it comes to Max's lungs, no one is sure. One thing that is certain, is that his weight loss has stopped. Of the 5 kilos gained, only a little less than 2 were lost. Then we started the three new meds for his lung bacteria and his kidneys are keeping up but not gaining ground. So there is still a fair amount of fluid in his tissues and in his body. Maybe in his lungs. Also in the lungs is the bacterial infection, and the damage done from all the previous ventilations and oscillation. We have been told that once again this area is primary, and will determine the direction of Max's success.

Dialysis will be discussed on a day to day basis. Rather than it being a kidney issue, now it's just a fluid issue as it relates to lungs. We shall see. Dr. Milla, from pulmonology said if he had it his way, they would take the fluid off the fastest way possible. But we've been reminded that this is not a "cost-free" process, and there are several serious risks.

As far as graft vs. host disease, maybe we have stalled a bit. It's hard to say. We saw his skin dramatically improve for a few days, and now it might be improving very slowly, or not at all. Tonight I see some new rashiness that hope is from one of his new meds, and not the GVH returning. In his guts, we have more bloody stuff coming up his OG tube, and he hasn't stooled in a few days. He had been stooling though, so no one is really worried about this.

Yesterday was the 100th day we have been in the hospital (counting chemo and day zero) so today is 101. We are still such a long way to ever coming home or getting out of the hospital. Our primary doctor, Dr. Grewal, came by a few days ago and went over everything with us. He brought us back from our denial mode. He told us he is very worried about Max. He has not made very much progress on this ventilator and since this is the fourth time he is in a very unique category. He looked it up, they did have a kid who was vented five times. But the reality is that Max's lungs are in very poor health. Dr. Grewal told us "the odds are not in his favor." It was hard to hear, no matter how obvious. He may not be able to overcome this and we have to appreciate every day. We've been looking at a lot of old pictures and my sister Peeps sent us a DVD that her husband made with footage of Max at her wedding. We miss the guy from the dance floor. We miss the guy from the pictures. We miss our guy.

Today, after the attending doctor and I talked about all that was going on with Max she said, "Let's try to focus on some positive things" and it meant a lot: his EEG showed no seizures, his kidneys and liver are working well, he has no major heart problems, he is making progress with his GVH, and he is still trying to help us on the vent. This was a great way to end our talk. Then she told me that we were very good advocates for Max and that we have a great understanding of what is going on with him. I got a little choked up because, really, we should. We are his parents, and even in a time of darkness, he is our little firefly. Sometimes it is just so hard to see the glow.

Still flickering hope,
--mike

Day +89

2003-11-11T10:33:00.000-06:00

WBC 2.1

Max has been pretty stable. Yesterday he had some less than perfect blood gases, but last night they were able to turn the rate down on the vent just a tad and he tolerated it. There was some cause for worry last night when they suctioned him and the secretions were pink. This would happen every once in a while during previous times on the vent. Back then it was due to irritation from the breathing tube itself, but this time he is vented for a lung bleed so it gave me a scare to see it. The rest of his vitals and his x-ray have been fine and no bright red blood has come up so it looks like it is irritation this time too, but they will be watching closely. They are also sending cultures in case it is caused by an infection.

They increased his TPN (IV nutrition) yesterday with the hopes that he could tolerate it, but with the increase in fluid from the TPN and all of his new antibiotics it was just too much fluid. He didn't lose any weight yesterday and since he still needs to get rid of all the fluid that accumulated when he was on the oscillator his TPN was reduced today.

His white blood cell count is down again, this time to 2.1. This has been happening for over a week and the doctors seem much less worried than us about this.

The EEG that was supposed to happen yesterday was rescheduled for today and Dr. Charnas read the EEG as containing NO SEIZURES. What this means overall, we still don't know. The medicines he is on have stopped the seizures. So that's good. They shouldn't hinder his ability to get off the vent as his body has adjusted to them by now. But he will be on these medicines for a while, and this issue will still be more on a back burner.

Just to give everyone an idea of the amount of medication Max is receiving I thought I would make a list. It is staggering to say the least:

ANTIBIOTICS
------------------
Bactrim
Ceftoxin
Amikacin
Synercid

GVH MEDS
----------------
TMC cream
HCT cream
MMF
CSA
Methylprednisolone
Actigall (for liver)

BLOOD PRESSURE
----------------------------
Minoxidil (Rogaine)
Nifedipine

LUNGS
-----------
Flovent (for wheezing)
Albuterol (for wheezing)
Viagra (for hypertension)
Milronone (for hypertension and heart)

DIURETICS (help him to urinate)
----------------
Metolazone
Bumex
Spironolactone
Aminophylline

TUMMY
-----------
Protonix (ant-acid)
Carafate

ANTI-FUNGAL
--------------------
Nystatin
Abelcet

PAIN AND SEDATION
-------------------------------
Versed
Dilaudid
Propofol

SKIN
-------
Silvadine (for breakdown and sores)

SEIZURE
-------------
Phenytoin
Phenobarbital

PRE-MEDS TO PREVENT DRUG REACTIONS
----------------------------------------------------------------
Tylenol
Benadryl

I think I got all of them and I hope I put them all in the right categories. This is probably way more info then anyone needs, but it helps to put things in perspective. Max has made great progress recently but he still has a long way to go with many serious issues still hanging around. But two weeks ago today we thought we only had a few more hours with him, and now he is still here. We are tremendously proud of him and grateful for his presence.

-Margaret

Day +88

2003-11-10T10:34:00.000-06:00

WBC 3.2

The biggest news for Max comes not from Minnesota, but from Illinois. The raffle fundraiser that was begun by our neighbor Jodi was held yesterday and was a phenomenal success. She had the idea to ask for donations on our behalf and to organize a raffle of these items. The terrific prizes and the desire to help led so many people to buy tickets that it FAR exceeded expectations by Jodi and certainly by us. Mike's sister Dana also helped a lot and took the time to write a letter of thanks on behalf of our family and it includes all of the details. Please read all about this event. Generosity is a snowball that grows when it can get a push downhill. It started as a nice idea at the top of the mountain, but as you'll read, the generosity was quite an avalanche at the bottom. We've known that this fundraiser was building up momentum for a while now. But a couple of weeks ago we were worried about even being able to use this money. Now that he has improved so much, we promise to honor everyone's charity by putting it to good use in caring for Max. Thank you to everyone who bought tickets, donated prizes, and helped organize the actual event yesterday. We are so humbled by this support and we are in a bit of shock. Congratulations to the winners!

We are so thankful that the Heiss family moved next door to us. In addition to being a great family with wonderful fence-crossing children, we were given the gift of great friendship. Thank you Jodi for being a great organizer, a terrific fundraiser, and a special special friend. We have been shown the power of friendship. Thank you Jodi. It took the help and support of so many people, but it started with one person, and that was you. We appreciate you so much. Here is a link for the information:

Curves Fundraiser

Since it has been a couple of days since we updated Max's progress it's time to let people know that our dude has been pretty stable. Our newest concern is that his white count has been dropping a point or two for about a week and now it is down quite a bit. This is the risk of both graft vs. host disease and the meds for GVH - both suppress his immune system and make him susceptible to infection. He is still off the oscillating vent and on a regular one. His settings are being weaned slowly but are still very high. He is extremely sensitive to touch and is on a hefty dose of pain/sedation medicine. His fluid issues are being worked on by 4 diuretics, and he has lost almost 2 kilos (of the 5 he needs to lose) in the last 5 days. He has stooled a few times, and his bowel appears to be healing. His skin is also improving, with the worst areas remaining visible. He began 3 antibiotics to help attack the bacteria in his lungs and it has been noticed that he has pulmonary hypertension. This means that the blood pressure between his heart and lungs is elevated. Because he is still on nitric oxide to help him breathe, Viagra has been added to his regimen because when used with nitric oxide, it can help with pulmonary hypertension. With the Viagra and the Rogaine (for blood pressure) and his fuzzy mustache, he's the smallest 50 year old man we know. Later today he will be once again hooked up to the EEG machine and we will learn more about the seizures at that time.

Please continue to pray for Max and for every one of his problems. The love and support lately have reached unbelievable levels and they are helping Max get better. Thank you.

--Mike & Margaret

Day +85

2003-11-07T10:35:00.000-06:00

WBC 6.8

Greetings all Mighty-Max fans!!! I was asked to write the update tonight as the guest reporter. I am Auntie Peeps (Lisa)--Mike's younger sister and proud aunt of Max and Grace. I have been in Minnesota since the SOS was called last week. When I made my plane ticket, I thought that I was going to be too late. I thought that my nephew Max would have already passed. And, I thought, sadly, that I wouldn't have had the opportunity to see his beautiful self alive again. But, it is funny how sometimes things are WRONG!!!!! Since I have been here, I have witnessed some baby steps of

opeful recovery. Like my dad wrote before, the nurses and the doctors haven't given up, Mike and Margaret haven't given up, Max hasn't given up, and I definitely haven't either. I know if you follow these reports you haven't either.

I have to admit, i was a little nervous about being here alone after all the other family members left. I know that Mike and Margaret had appreciated all the help of Grannie Judy, Auntie Katie, Grandma Chick, Auntie Dana, and Grandpa John and once they left, I wondered what I could do to help. I have been Gracie's pal, hanging out with her at the Ronald McDonald house. She is doing well. She is a barrel of fun and her imagination is bigger than anyone else I know. She introduced me to her friends at the house--Kirsten, Rileigh, Taylor, Rowan and Amelia. I have had so much fun playing with all of them--hide and seek, tag, wolf, polly pockets, my little pony, etc. Even though I don't have children, I have learned ALOT this week. I will be sad to leave them all. But, the biggest thing that I will remember about Grace is what I heard her say this morning when I woke up. She was talking to Mike and said, "Daddy, I miss Max. I wish he would come back to the Ronald McDonald House. I love him." Mike told her that he loves her too, and that he wishes he could play with her too.

Max, on the other hand is doing great too!!!! I wouldn't call myself very religious, but if there was ever a time to believe in miracles it is now. He is just such a mysterious boy. I got to see him get off the oscillator vent this week (how quiet the room is now) and I saw him work so hard to prove to all of us that he could work harder. I saw his GVH get better. I became excited if he peed or pooped. I got to feel him squeeze my hand. He is taking baby steps on this vent, and today his CT scan went well. Margaret told me it was a little scary at first because a team of people had to cart Max to the CT room. He was off the vent for the voyage and had to be bagged.

They did a scan of his head, abdomen and lungs. His lungs showed some new areas of collapse, but no new spots from the AFB (bacterium). The brain showed a small bleed that the neurologist is not worried about. So far, no one has said anything about the abdomen. Later he had a bronchoscopy, and the pulminologist tried to open up one of the closed areas and said that the Max's lungs overall look pretty good.

In other news, he is still requiring the regular vent to be on very high settings, and he hasn't stooled in almost a week. But, the bottom line is that if you've been wishin', hopin', or prayin', for Max, don't stop!!!!! I have had the opportunity to meet some Hurler's children at RMH--Taylor, Tommy and Bella and their personalities and smiles and laughs--they are all great children who are so loved by their parents. I know that Mike and Margaret wish to have Max play with them one day.

As for Mike and Margaret, they're great. I'm not the best at dealing with difficult situations, but they are rolling with everything. They desire so much for the answer to every situation with Max, they could probably pass med school with all their new found knowledge. The love that they share for one another and for their children is amazing. In fact, no matter how tired they may be, they always make time for Grace even if it is the 10th time they watch the My Little Pony video, or the hour long game of Polly Pockets they play with her before bed. I think that Grace keeps them going. Her jokes, her smile, her hugs, and just her all-around self pick Mike and Margs up when they're down. I am so proud of all of them. And, so proud that I have gotten to share this moment of their lives with them.

I told the kids at RMH that I was leaving Sunday and they were sad. I don't think they're as sad as me. There's so much more that I want to witness. I have learned alot since I have been here. Every experience you have teaches you something about life. Max has taught me not to give up, to keep fighting when things get hard. Grace has taught me jokes, magic tricks, and a love for the simplest things in life. (She also taught me "loco" in Spanish when she called me her "loco" aunt.) Mike and Margs taught me that things may be difficult or hard or confusing, but it doesn't mean you have to be too. They are the same funny, smart, and silly couple that I know and love. The bottom line is, and I apologize for this novel, is that we must NOT give up on each other. As people who follow this site, we are connected in a bond for Max. Keep up all the hard work.

--Peeps

PS--Jodie, good luck with the raffle---It's not too late to be a part of this fundraiser!!!
PPS--Pray for Kaitlyn who begins her pre-transplant work-up next week.

Day +83

2003-11-05T10:36:00.000-06:00

WBC 8.9

The jiggling is over. Max is off the oscillator vent and back to a traditional one. This is significant progress. In the last three days or so they were able to wean him down to a very safe setting for transferring back. We are so proud of Max. What a little champ. As our nurse said, you never lose hope, you just change what you hope for. This is certainly the first time we've ever been so happy about being on a vent.

All of the other issues are progressing in a similar fashion, very slowly. His skin is looking slightly better, he is making a little urine, his weight is a little down, etc. Yesterday they said he has 48 hours to make some significant progress getting the extra fluid off and if he does not they will probably move towards dialysis, something that is much more possible while off the oscillator. In regard to his seizure problem that was tabled, hopefully neurology will do another EEG test to see if he is still having seizures. This test had been on hold because the oscillator made it impossible to put wires on Max's head and keep them still.

He had another echo of his heart today, but we don't have the results yet. They turned off his heart medication yesterday and they want to see if he is tolerating that move. You may recall he was given the medication after his lungs bled the second time. They did an echo at the time and the left side of his heart was collapsing on itself. There has been no evidence that is still happening so the med was discontinued. We will see what the doctors have to say.

The Infectious Disease people came by and talked to us about something called an AFB, acid fast bacillis, which is something that grew in a culture from Max's bronchoscopy on Oct. 23. Basically, it's not the scariest or worst thing that could grow from your lungs, but it does need to be treated. Since the exact name of what grew won't be known for weeks, treatment needs to be made on a "best guess" basis. Three medications were recommended, all of which have side effects that are bad for Max. But when just about every part of your body has issues, this is bound to happen.

Amidst all of the hullabaloo of the past couple of weeks, there have been two events worth mentioning: The Gorham High School soccer team had a successful fundraiser on our behalf. As some of you remember, I played more than a few years of left bench for that team so that really means a lot. Thank you Coach Goodrich and the whole team. Meanwhile, down in Peru (Illinois, that is), my sister Dana's littlest brother-in-law Joshua had a Pudding Sale at Peru Catholic, grades K to 8, and the proceeds went to Max.

All of the hardship Max is enduring continues to bring out the very best in people. Thank you so much to all the pudding salesmen, soccer players, and fellow fundraisers for helping us and, in doing so, for helping others learn about this amazing process.

Today has been a good day,

--mike

Day +82

2003-11-04T10:37:00.001-06:00

WBC 10.7

Max is in a much better place than a week ago. He is still on the oscillator, but he is much more stabile, and he is doing fairly well. A week ago, his kidneys appeared to have stopped, his bowel appeared to have stopped, and he was needing "pressers" because his blood pressure was so low. The doctors told us that because he needed the oscillator, their hands were tied and there wasn't much more they could do. Thankfully, Max (and a lot of diuretics) got his kidneys moving, his bowel moving, and his blood pressure came up.

So this is what it's like: It's a championship fight and Max has been knocked down many times. This time he took the biggest hits of all, and he's not getting up. The ref is standing over him and he is counting. Somewhere around a 7 or 8 count, with the fight almost over . . . the ref faints. No one knows what to do. The fight isn't over, but Max is given a little chance. While they work to revive the referee, Max slowly gets back up on his knees. But he's still wobbly and makes it to his corner. The next round is coming up, so his corner is doing all they can to get him strong and ready to go. . .

Looking back through the tremendous amount of support we received last week is overwhelming. To see the doctors so surprised by Max's progress is encouraging. When they told us he would be on the vent (oscillator or regular) for another month, it didn't break our spirits, in fact it was nice to imagine a length of time as long as a month, and not just a day, or an hour. We are so grateful that Max is with us today. And we are so grateful to have such wonderful family and friends. We have relied on your support and we have depended on your love, but last week we needed even more, and people were there. The flood of guestbook entries kept us going in the hospital, the letters and packages were such nice surprises at the house, and the visitors - so many of you - who dropped everything to come and see us - allowed us so much special time with our guy (and surrounded him with so much love) that we are indebted once again. Thank you.

Finally, and most personally, I want to thank Margaret for being such a rock. Going into this, I was the mellow one, but out here I've been a wreck. I'm in a much better place today because of Max's health, but also because of Margaret. She has helped me take a step back and to try not to obsess over every number, every blood gas, every detail. So much of this is out of our hands and it's important to be clear-headed and not overly analytical. To that end, with things fairly stabile and the timetable for progress so unbelievably slow, don't be surprised if we skip an update every once in a while. This will only happen when there isn't much news, and that's a good thing.

Please keep the kind words and prayers coming. They really help. They've carried us through 93 days of being in this hospital. Please continue to pray for so many sick children and the families of Priyanka, Dan, Jenny, Alan, and Jake who are grieving the loss of their children from this unit. Also, continue to pray for the RMH families of Camryn, Brandon, and AJ who lost children from other units. And never forget Kendall's family and their devastating loss. We told Grace that Kendall was an angel now, and that she was flying around looking after all of us and Max. Grace said, rather jealous, "Why is my friend flying around?" It is very comforting to her to know that Kendall isn't sick anymore in heaven and that she can run and play without pain. She is such a good kid, with such a good heart, and even in our saddest times, she makes us laugh.

--mike

Day +81

2003-11-03T10:39:00.000-06:00

I apologize for not updating last night and I hope I did not worry anyone. I was just a little tired and really did not have anything major to report - which is a very good thing.

He has made some back and forth movements on the vent, again nothing drastic. I wish all of the changes would be steps forward, but I am so grateful that none of the steps backward are major.

We have a new BMT attending today. She filled in for someone last weekend so she has met Max before. She has not seen him in a week and she was happy to see the progress he has made so far. His ventilation settings are much better than they were when she was last here and his skin is improving slowly but surely. Even the skin on his belly is slightly improved today. Dare I be encouraged? It is hard when we have seen him make so much progress in the past only to backslide with more and more complications each time. The doctor did say we can expect Max to be on a vent for a month or two. The important thing though is that he keeps trying and they have not given up hope. Last Tuesday it looked like his kidneys and gut were failing, and we did not know if he would make it another day. Now a week has gone by and if we have learned anything by now it is to never underestimate Max's will to live.

Max has been retaining more fluid the past couple of days. It may be because he is no longer getting one of his diuretics. There is a shortage of the medication and the manufacturer ran out. They have increased the doses of his other diuretics so let's hope that does the trick.

In other news, Mike, Grace and the Aunties went to see the new Disney movie last night, Brother Bear. The movie was a little disappointing, but Grace enjoyed herself nonetheless. My mother and sister Katie leave today and I am very sad. I just feel so much better when they are around. It is snowing like crazy here today and most of the grass is covered. Grace and Mike are pleased, but it is a little too early if you ask me.

Thanks again and again for your support,

Margaret

Day +79

2003-11-01T10:39:00.000-06:00

We are happy to report a very quiet day. And we are taking a night off from our usual long updates. The quickest update would be: skin not getting better or worse, breathing remaining stable, kidneys making a little less urine, and bowel moving slowly. Sorry to be so brief, but we've been rehashing the same things now for a few days, and the most important thing is that Max is still here with us. As our friend Jen wrote in her update on Taylor, yesterday was a day to celebrate Halloween, and to celebrate that we've had another day with Max. Somewhat selfishly, both Margaret and I wished Max would make it through Halloween to make it that much more special, and he came through like a champ. Today Grace got to be a part of Taylor's 2nd birthday party. It's quite an achievement, to say the least, for one of these little transplant babies to make it to their 2nd birthday. We are so proud of Taylor, she's a little sweetie, always brightening our days, and her Mom and Dad have been great to us. Please stop by her site and wish her a happy birthday.

--mike

Day +78 - Happy Halloween!

2003-10-31T10:40:00.000-06:00

Mike and I just got back from the RMH Halloween party and we had a great time. The day started with book club for Grace at 10:30 and then a spooky lunch at RMH, full of yummy mummy hot dogs, a jello brain, halloween cut-out tortillas, etc. Mike, Auntie Peeps, Auntie Katie and I all went and the Grandmas watched Max. Mike and I came back to the hospital for a while and after a nap Grace came over to see her brother and show the nurses her costume. We then left again and the Grandmas returned. We had a great time doing the RMH scavenger hunt and trick or treating. Grace got so much candy and so many treats it will last us all year. We have said it many times, RMH is so amazing and I do not know what we would do without it. We would be so depressed and lonely, and Grace would not be handling this awful situation so well.

As for Max, he "wore" another Halloween t-shirt today and donned his Frankenstein headband for visitors. For most of the day we were in very high spirits, and as I told the nurse, I thought we deserved a "denial day." The fun is over now, however, and as Mike and I walked back to the hospital we walked back to reality.

Max had a quiet day with some small improvements. His blood gases have been up and down today, none of them terrible. He stooled a couple of times and his abdomen was 1 cm smaller than yesterday. His weight was down .8 kilo and he did a great job getting rid of some fluid. We were somewhat excited for all of this, but then it hit us that if the GVH doesn't go away none of the other progress matters one bit. His skin looks a tad better after the four doses of ATG. We have to see some dramatic improvement in the next few days.

Thanks so much for all the recent guest book entries, emails and care packages. Each note, each gesture goes a long way to raise our spirits. Thank you.

--margaret

Day +77

2003-10-30T12:39:00.000-06:00

Max made a little progress with his kidneys. He's finally beginning to push more urine out and for a time today actually got rid of more fluid than he was given. The biggest problem is that a large amount of fluid is in his bowel -- his beat-up graft-vs-host bowel, and it just needs to hold out while his kidneys slowly help him take off the extra fluid. It's just that his bowel is so unhealthy that the worry is that a perforation could happen and if so, surgery will not help him, he will be too sick to heal. One step at a time. They also made a small adjustment on the oscillator today for the first time since Tuesday. So that's good too.

Tonight a surgeon came by and talked to us. His line was "I'm afraid what I have to say won't be very comforting to you." He told us that if Max's symptoms were in one of us, we would be on the operating table. And he told us that Max's bowel is possibly "asleep" and in danger of totally clogging up. But Max's graft-vs-host disease, combined with his lung issues, and transplant in general make him a very complicated boy. He explained that there are no real surgical options for Max if he has perforated his bowel and that he wouldn't make it to surgery anyway. He did put in a bigger tube to help suck up some of the bile and fluid from the stomach and small intestine. He thinks it's one thing he can do to help the distension without surgery.

Sadly we must also report that Grace's buddy Kendall lost her fight with leukemia yesterday morning. As most people know, her family had been extremely helpful to us and we are so lucky to have met Kendall and for our daughter to have such a good friend to look up to. We miss her and her family so much, but we know that Kendall is at peace and that her family was able to surround her with as much love as possible in her last days. Please pray for her family to find the joy of her memory to ease the pain of her loss. Their pain is unimaginable even as frightened as we are for Max. Just a couple of days ago RMH gave us the Christmas cards they produced with Grace and Kendall's picture on them. It seems like it was a lifetime ago that they posed for that photo.

Today we received a note from a friend of our neighbor Jodie. This family, from Michigan, has never met us but their daughter was born with many severe birth defects. The head of pediatrics at the hospital gave them a button that reads "I Believe In Miracles" and she wore it every day. Jodie has told us often of this little champion, her name is Sophie and today she is 3 and doing much better. She and her family endured the same kinds of fear as us when she was born. They sent us the button that Sophie wore and now Max is wearing it. We pinned it to a Halloween sweatshirt that we had to cut open so we could wrap it around his chest and arms. Max looks amazing. He's been in hospital-issue blue shirts for the last 2 months and since the recent events, he's basically been nude. So a little change of clothes puts us in the Halloween spirit and the button has given us a bit of hope.

We hung up some get-well posters that my Aunt Lois's Girl Scout troop made for Max. And we hung some Halloween decorations in the window. We love Halloween so much and we miss being able to decorate our house and going trick-or-treating down the block. But we've tried today to make the best of this situation and it's gone a long way towards improving our spirits.

Please think about Max's little button and what it says. This button already helped one little girl and we're hoping that it'll change our luck. The doctors are still very cautious about Max but he seems to have surprised them a little bit by restarting his kidneys a bit today.

We are really hoping for a quiet night and quiet day tomorrow so that we can attend the RMH Halloween party with Grace tomorrow. She looks so pretty in her Belle costume (thanks again Gretchen and Katie) and you can tell she feels pretty when she wears it. Grannie and Grandma will be Max sitting while we attend with Auntie Peeps and Auntie Katie.

Good night to all and have a Happy Halloween,
Margaret & Mike

Day +76

2003-10-29T12:38:00.000-06:00

LATE EVENING UPDATE

Max didn't make any significant progress today. The relative success of last night was mostly maintained, but he has needed a little more oxygen this afternoon than last night.

Some good things: He is urinating more, almost as much as is going in him. He doesn't have the low blood pressure associated with sepsis. He was surrounded by much love today, with so many members of our family making last-minute trips to see him.

Some not-so-good things: He is still on high settings on the oscillator, and the process of moving back to a regular ventilator seems far away. He had an ultrasound today and it showed that his bowel is extremely distended. If it's his graft vs. host disease, we can only hope that the medicines begin to work otherwise it may have just shut down. He is very very sensitive to touch and may be in more pain. His blood pressure and heart rate increase with anyone touching his skin so they more than doubled his narcotic.

Max isn't quitting. And the question we have is why? He must be so uncomfortable. But he's clinging to all the love that he's getting from us and from so many kind words and deeds on his behalf. The doctors have prepared us for the worst, and we've decided to take our cues from him. When he's ready to stop, we will try as much as we can to have it be as peaceful and gentle as possible. Until then, we will work on his behalf to help him get the best care he can.

Today he squeezed our fingers a little bit more and he even had one small stool. This isn't much, but for Max, as sick as he is, it takes tremendous effort. I wish I could paint an accurate picture of how much Max has been put through. We counted his meds today and he is on 27 different medicines, plus 6 drips. He gets over 55 infusions of something per day.

Our emotions are up and down. His health seems so fragile. When one stops to add up all the hurdles he must overcome to get better it seems impossible. But there is a sequence to it, an order, and step one is to just maintain his breathing on this machine so his lungs can heal and his graft vs. host medicine can work on his cells. We've tried hard to understand why his new cells don't like their new home. Who wouldn't love this beautiful boy?

Hoping again for a peaceful night, stronger lungs, and happier cells,
Mike & Margaret

_________________________________

MORNING UPDATE

Our son has made it through the night. We had come back in the room after our talks with the doctor and we looked at the oxygen saturation and said, "Is that 87%?" and the nurse said, "No, 97%." That little fighter. He had one more night of fight and we'll see how much more he has. Maybe yesterday's problems were related to another small lung bleed overnight and it took the rest of the day to recover. We don't know. They were able to turn down his oxygen needs a little bit and while he's not much closer to being able to switch vents and have surgery, he did make progress. The resident said she was "very very very very worried" but she was ready to take one of the "very"'s away.

We have been reading the guestbook entries and we really appreciate the support.

At this time we have to say thank you to the resident Judy and the fellow Eric who both finished their month-long rotation yesterday. Thank you for making our son's life so important to you and for taking good care of us as well. Thank you for pushing for things and for questioning things and for not giving up. Special thanks also to the team of nurses yesterday, it wasn't an easy assignment, but we got great care.

Hoping for a better day,
Mike & Margaret

Day +75

2003-10-28T12:37:00.000-06:00

EVENING UPDATE

While Max's day and evening yesterday were very stable, his overnight was rough. He began to have low blood pressure at around 5am and his oxygen needs on the oscillator went up at around 2:30am. Neither really rebounded and he sent the doctors and nurses scrambling for answers.

Now it's around 5pm and we just had two very important conferences. The first was with the team of transplant doctors who told us they're doing all they can for Max, but because of many factors, they can do no more at this time, and here's why: He is retaining fluid but can't make it to dialysis because his breathing is not stable on the oscillator and therefore can not be transported to surgery. Additionally he is not oxygenating throughout his body very well. This could be because of the bleeding that happened in his lungs, a virus in his guts, or a number of other things. He may be septic as well since he's having trouble with low blood pressure. The biggest mystery of all is the graft vs host disease. It's affect on all of his systems is hard to guage and so far it's been impossible to conquer. They were clear with us: Max needs to make dramatic progress overnight or the options become more difficult, the risks become very great for all procedures, and death is very likely for any number of reasons. They don't seem very hopeful and that's because they are just being honest. It's hard to see the doctors so frustrated and we know in our hearts that when they tell us there is nothing more to do it is going to be hard for them too. Everyone here has been working so hard, especially Max, and it's heartbreaking to say the least to think about all the effort that has gone into saving our son, and that it might soon be over.

The second conference we had was with Grace to tell her that her brother could die and that this might be her last night with him. We cried more than her, but she still was very sad and said "I don't want him to die" and we told her that's why she should spend some time with him and sit with him. She told us she would do that "after I finish my chips." We told her that we would have to go back to Illinois and be in our house without him and she cried again. We don't think she really understands, and that's OK. We just wanted her to be a little more prepared.

Margaret's Mom and sister Katie are coming in very late tonight so between them and my Mom we should be able to be together at the hospital for whatever happens.

Please pray for a peaceful night, whatever the outcome. Max is the bravest person we know. And we miss him so much.

--Mike & Margaret

Day +74

2003-10-27T12:36:00.000-06:00

WBC 12.5

To be quite honest, I don't really feel like typing an update tonight. So many things have happened over the past few days it is getting hard to remember all of them, and I am drained. But, we know there are so many people out there who check on Max and worry about him. We appreciate you so much and I wouldn't want you to worry more if you didn't see an update.

Today we added the pediatric renal team to our list of specialist following Max. He is so swollen with fluid and just cannot seem to urinate it all out. They ordered some tests and did an ultrasound of his kidneys. The results are not back yet, but the docs are guessing that his kidneys took a hit when his lungs were bleeding and they were deprived of oxygen. In a healthy person this would usually resolve itself, but we all know Max is not healthy so they are not sure what will happen. If the test results show something else is going on or if he doesn't make any progress, he will be put on dialysis and the fluid would be drawn off. This would involve him getting a new central line put in, which means surgery. If his fluid status starts impacting his breathing more they will have to move sooner rather than later.

As for his lungs, they have continued to wean him off the oscillator little by little. Once he hits certain settings he will be moved to a conventional vent. There is no real hurry to do this, as this vent is not hurting him. However, they would be able to do more tests on him on the conventional vent. All of the bouncing on the oscillator makes it impossible for him to get an EEG and we therefore do not know where he stands seizure wise.

The big change today involves his GVHD. It has gotten better at different periods with certain medications, but overall it is very bad. His skin is as bad as it has ever been, and we do not know what is happening with his gut because everything has slowed down with all of his sedation. It comes down to this - one cannot continue to live with GVH as severe as Max's. They described it as Grade Four GVH, which is as bad as it gets. The GVH itself makes him vulnerable to many different infections and complications. It may be playing a role in his lungs and brain already, something they cannot test because biopsy would be too invasive. The treatments for GVH are risky, because they suppress his immune system and make him vulnerable as well. But we can wait and let him die of GVH or we can try something. So, Max will be getting a second course of rabbit ATG tonight and for the next three to four days. God help us, it has got to work.

I told the BMT fellow tonight (Eric, who has taken such good care of Max), that we did not want Max taken off the vent unless his GVH was under control. His sedation and pain medication has to be turned down when he is off the vent so his respiratory drive is not suppressed, and we do not want him to be uncomfortable. He agreed, and in fact had already discussed it with ICU. It was certainly one of the hardest conversations I will ever have in my life.

What is so hard is knowing that Max is inside there somewhere trying to get out. If he wakes up a little though, he works against the oscillator and it starts alarming. Tonight I was talking to him and touching him and the alarms were going off. The nurse told me to leave him be for a while and she had to give him a paralytic. It stinks that when he knows I am there and he wants to respond it has to be taken away.

Mike's brother-in-law Geoff is here for a couple of days and he sat with Max so Grace, Mike and I could attend a little Halloween party at the hospital. Grace got her face painted as a cat and she looked really, really cute. Geoff is leaving in the morning, but Mike's mom arrived tonight and my sister Katie comes on Halloween. With all the help Mike and I should be able to attend the RMH Halloween party with Grace on Friday.

Grace visited Max tonight and sat at the edge of his crib. She was so excited when his hand moved ever so slightly and she said Max would be waking up soon. She said he thought it was night time and that is why he was asleep. Of course she does not understand it all. Today she said she was going to take a picture with Kendall on Halloween, she still does not get that Kendall will not be coming back.

Please send a nice guest book message this week to Max's Hurler friend and our RMH neighbor Taylor who will be turning two on Friday. She went through two transplants and they have been at the RMH for a year and a half. She is totally blossoming and brightens up everyone's day when they see her. Her family has been a great help to us as well.

Good Night,
Margaret

Day +73

2003-10-26T12:35:00.000-06:00

WBC 10.9

First off, tomorrow (Monday) is Aaron Athy's 2nd birthday. He was leaving Minnesota at around the time we arrived back in July. We met him briefly and saw just how great he looked and we were shown just how good the process can go. It hasn't been the same road for us for sure, but he and his family (especially his Mom) have been so inspirational. They show that it can be done, that these kids do get a second chance and every step forward he makes is one we hope to follow. Congratulations Aaron!

Max is holding his own on the oscillator. He is still bloated and puffed up. His kidneys are working much better, but they are playing catch up now after a few days of gaining weight. His skin is still horribly rashed and even the clearer areas that weren't red and patchy have turned red. His arms and legs are all puffed up. The best word for it is . . . swollen. They were able to turn a few knobs down today and his x-rays have been looking good too.

Last night we had such a nice dinner together and we are grateful for that and for Auntie Bethie coming in so we could be together. At this time, even being 5 minutes away feels too far. It's hard to know how to feel. When the priest left yesterday, he said to Margaret "he looks like he needs to be relieved." And that's accurate. We're hoping that the medicine, machinery, and love that he's getting now offer that relief and that he can stay strong and come all the way back to us. But it's hard to look at him and feel he's getting better. He looks like someone who's being kept alive. And that's exactly what he is. But also, when I put his creams on today to try to help his skin, his arm came up, his little hand rose up, and there wasn't any shaking from seizures, it was just a little wave. I know that he was telling me that he hasn't quit, and I told him that I'm not going to either. As I tell the doctors, I got my medical degree from Dad University, but it still counts. I can't prescribe medicine, but there is one thing I can do for my son and that's not give up.

There was an old door on the floor of our unfinished basement growing up. One day I told my school friends about it and we all wondered if it led to a secret staircase or something. So we all sneaked down with flashlights and moved all the old boxes, tools, and chopped wood off of it, and then with all our might opened the door. And you know what was under it? Nothing. It was the same dirt floor and all the kids laughed at me and I felt stupid. But there was a moment, a split second, where we all believed that we had discovered something amazing. But it was nothing. Just once I hope that happens with Max. I hope that we have hit bottom. I hope that with every x-ray it's just a door, not another staircase down. I hope that one day it's just going to be fear and nothing else. I hope that one day when the doctors look inside, it's just a kid, just a regular kid.

Thanks for checking in on Max, for rooting for Max and for us, and for not giving up.
--mike

Day +72

2003-10-25T12:34:00.000-05:00

WBC 11.8

Max has spent the last 24 hrs. bouncing away on the oscillator. Why bouncing? The machine works by delivering high frequency bursts of oxygen and nitrous oxide to Max's lungs. These bursts cause Max's whole body to bounce up and down rapidly with the machine. And the nitrous oxide acts as a "carrier" to help deliver the oxygen to the lungs more easily. It is actually a gentler way of oxygenating him than the regular vent, and I know he needs it, but it sure looks like torture to me.

On the positive side, Max finally began urinating last night with the help of drugs called Albumen and Bumex (and a pee dance done by Dr, Charnas, Max's neurologist and cheerleader). He has A LOT of catching up to do though, and he is extremely swollen with fluid and air. His abdomen looks uncomfortably huge, as does the rest of him. He has gained over 4 pounds in 2 days.

His skin looks terrible, and his whole body is red. One of the meds he is getting for his heart may be contributing to the redness. Yesterday afternoon his blood pressure was too low, but now it has gone up and they are giving him meds to lower it. What a seesaw!

His vent settings were lowered a tad bit today which is always good news. As Dr. Cornfield said yesterday, they have had kids much sicker than Max live, and have kids as sick as Max die. The trajectory he is on is not good, but there is still hope.

Special thanks go out to Auntie Bethie for flying in today to watch Grace. Other family members will be out the rest of the week to lend a hand.

We received an extra special delivery tonight from our friends, the Whites, from San Diego. Their daughter Susannah was transplanted twice in MN and went through a very difficult time. They sent us dinner, complete with dessert, wine, Halloween plates and napkins. It was delicious, especially the cake, which looked too pretty to cut, and was a much needed indulgence. Thank you Amy, Klane, Madeline, Susannah, and Gayle (who delivered the food)!

Please say extra prayers for Max's friend Sophie. She went into cardiac arrest and stopped breathing for a while. As of their last update, she is stable and is off the oscillator and onto a conventional vent. Please send them a guest book message of encouragement, as it makes a world of difference during times like these. Please also pray for Max's friend Cecelia in Chicago who was vented recently (non Hurler), and the families of two transplant patients who passed away this week. Alan was 13 and Jake was 21. They neighbored Max on both sides, and while we never met them we did meet their families. Alan's sister recently watched Sleeping Beauty and ate popcorn with Grace and another friend. His dad was so dedicated, his mom recently had a baby and we can only imagine how heartbroken they are. Jake married his fiance in his hospital room before he was placed on the vent. His mom Peg is so nice, and she remarked once that she loved to see Grace in the hall because she has so much life in her.

A few weeks ago we mentioned that there were 5 ICU rooms on 4A. Of those 5 Max is the only one still alive. We are so blessed to have each day with him, as we know the alternative is so much worse.

Thanks so much for your support,
Margaret

Day +71

2003-10-24T12:33:00.000-05:00

REVISED AND UPDATED AT 11PM (LENGTHY)

>From earlier:
Max was just put on an oscillator because of new bleeding in his lungs. His saturations dropped very low during a suction and it took a very large team of people a fair amount of time to work him back up to a more stable situation. They bagged his lungs until the oscillator came in and he's now hooked up. The ICU doctor was suspicious of some heart trouble and an echo showed that his heart was a little empty in the left ventricle. This indicated that he lost blood from the bleeding. They have added blood products to replace this and have started a more rigorous schedule of administering some clotting medicine. Overall he is retaining fluid, and they are trying their best to get his kidneys to kick into high gear.

Perhaps most telling of the seriousness of everything, during the chaos the chaplain came and asked if we'd like a priest to administer Anointing of the Sick. It sure can't hurt. Please pray for Max, his doctors, and us as we are put through another tough trial. We will try to write more when we can.

Updated 11pm:
The Anointing of the Sick went well but was nearly overwhelming emotionally. It's awkward to have a priest you've never met and has never met your kid come in to say some prayers. It's hard to know what he was told before entering, but it was clear by how things went that he thought we were close to a place where we would be saying goodbye to our son. In addition to the prayers to get well, there was one that is said as Max gets to heaven. I came so close to grabbing his arm and stopping him because that's what my mind was telling me. "Wait just a minute, these doctors haven't stopped fighting" but my heart was breaking, and with all religious ceremonies, there is such rigid protocol and leave it to me to mess it up. But it was a nice prayer and there was a gap where he asked us to ask God for some of the key things about Max that Max would need to get better. Margaret and I couldn't sob any words outt, but Grannie was there and offered up the most beautiful words for Max. She asked for his courage and his strength first to help him fight on, and she spoke of how much Max has taught us about unconditional love. I can't thank you enough Grannie for speaking when we lost our voices, but for saying what was in our hearts. And for getting us paper towels to dry our eyes and blow our noses. We love you so much.

I know I had some reservations about asking the priest to come in, just because in some way it might show some resignation. But we haven't given up and neither, for sure, has Max. And I hope he knows that.

Also in the not giving up club are Max's doctors and nurses too and I want to mention a very special person in case she is checking up on Max. We have the best nurse in all of 4A in our room every time she works, Anmarie. Now I know that might upset some other nurses, but I asked Max and he said Anmarie. She became our primary before we ever knew how important it was to have one, and every shift she spends with Max she helps him so much. She also is cool under fire and believe me, in this room there is a lot of fire. She is such a good person, and has a good heart, and is very sensitive to our needs. At the key moment today when it looked like things were not going well, I asked her if I should get Margaret and she said yes, and that alone was done with such sincerity and compassion and I really appreciated it. She was asked to stay on for a double today and she agreed even though today must have felt like a triple! I'm sure she's exhausted. She may seem demur, but when she wants to kick a little butt on behalf of Max, she can do it. We hope to have you again on Wednesday!

Now back to Max. Since earlier, he has not gotten rid of any fluid. Are his kidneys failing? Tonight will tell us the answer for sure. His weight is up about 30% and he looks so bloated. If only some Oompa Loompas could take Max down to be juiced like Veruca Salt. Two peripheral IVs have been added because Max is on so many medicines. Another IV pole was brought out to help hold all the auto-syringes. His belly is also full of air because of all the emergency bagging they had to do to get him enough oxygen. His skin is beet red because of many factors, the newest being a streptococcis bug that was discovered with the last bronchoscopy. That may be the cause of the lung bleeds, but most likely it is the abuse his lungs have been taking (like the rest of him) from graft vs. host disease. We got some good news about his EEG, his seizure activity looks the best yet. He is on a new anti-seizure regimen now and it has pretty much put him into a deep deep sleep. That was good for his seizures, and good for all the messing around they had to do today.

Again, with so many systemic issues all going on at the same time, it seems like something major is popping up every day. Today in addition to the bleeding, we had a surprise with the heart looking a little weird. Now it's his kidneys that aren't working well enough. At some point, something, some one thing, needs to get better, or this trend is going to be very bad for Max. Have kids recovered from all this? Yes. And so can Max. But he needs some major good luck.

Max, we are so proud of you. You are courageous and brave. And you have our unconditional love for now and forever.

--Mike & Margaret

Day +70

2003-10-23T12:32:00.000-05:00

MORNING UPDATE - BACK ON THE VENT

Max was ventilated for the 4th time this morning. His saturations took a sharp drop during his breathing treatment and suctioning at 8am. Dr. Milla was able to do a flexible bronchoscopy through his nose and looked into his trachea. He saw blood coming up from his lungs. He said Max needed to be intubated immediately. Within minutes, the team was assembled and it included Dr. Sweeney who had intubated Max before and has been a great help to him while under his care. The intubation went well and they are going to do another bronchoscopy down his ET tube to get a deeper look at what is going on.

Then we were in a waiting room and the entire BMT team, including the guest visitors from Canada and Iowa sat down with us. There was no doubt that a pulmonary hemorrhage is a serious, and potentially life-threatening problem. But as of right now it is the kind of thing they have seen kids recover from. Many kids do go through additional hemorrhages before things are stabilized however, and that is why they predict Max is going to be on the vent for a very long time. Weeks, they said.

It would be obvious to say we are disappointed that Max is on the vent again. He had been doing very well by Max standards and was making progress. In fact, last night his saturation was at the maximum, 100% with very little oxygen help. So, this setback does break our hearts. But this wasn't done for just breathing, it was done for bleeding, and that is more than a little frightening.

Max is a tough kid, a fighter, but how much can they ask of our son? There are just so many problems to try and solve simultaneously it's like nothing gets solved and he's susceptible to new problems. While ventilated, however, they just have so much more control over him and they are able to use many different meds. Maybe during this time they can make some progress with his seizures and his gvhd.

Please pray that the doctors can find some common ground on the path to take.

--Mike & Margaret

Day +69

2003-10-22T12:31:00.000-05:00

WBC 13.0

It's been a busy day so I'll try to be informative and brief. Brevity is hard when your kid is sick, and you've been known to have trouble finding the brake on the keyboard.

Max has fevers even on top of all the antibiotics he's on. And his x-rays show some new "infiltrates" in the middle of his right lung. This could be an area of collapse. Or if in case these two suspects are working together, the best explanation is a fungal infection (very serious in the lungs). He's been put on an anti-fungal medicine called Abelcet that has some crazy side effects. The worst of these is severe "chills" usually manifested in shakes so that just makes the seizure monitoring that much more difficult. I stayed up tonight to watch for these reactions, and so far so good, no reaction.

On the seizure front, Dr. Charnas, Max's neurologist came by today and performed another EEG. While he wasn't having seizures actively, there were still some worrisome areas of activity and he put him on a new med. What's great about this med though is that it comes in "sprinkles" and gets spooned in with applesauce. Max is eating it up just fine. He will do another EEG to watch for seizures on Friday. He's been a lot more awake lately, and today we thought we saw his eyes cross a little and maybe move with a little more determination. He's still not engaging anything or tracking anything, though.

I took Max down for a CT scan of his lungs today and because the machine is so fast, we also got a CT of his abdomen and pelvis. The pulmonary team is going to study the lung CT and see how it will define his treatment. Dr. Milla still wants to put Max on CPAP, a way of forcing positive pressure into Max's airways without having to vent him. Most kids hate this, and Max was put on this a while ago in a last ditch attempt to keep him off the vent. Didn't work. But this is being done more electively and the hope is that the positive pressure can open Max's lungs up in the way that the vent does, but with out having to vent him. Get it? We're scared that this will aggravate him and cause more problems.

His gut and skin remain the same and the new immunosuppressant, MMF, won't show changes for at least a week. Today's abdomen and pelvis CTs should offer some more information for the docs in this fight. All CT results will come back by noon on Thursday.

Thanks for all the support of Max, and for all of the guestbook entries that my Dad's letter inspired. It was nice to read so many little notes in one day. We are so lucky for all of the wonderful support that we have. Please pray for Cecelia, Max's secret girlfriend who is much sicker than Max and has been fighting for her life for much longer. She really needs your support!

Have a good day,
Mike

Day +68

2003-10-21T12:30:00.000-05:00

First, let me say thank you to Mighty Mike for staying two days in a row with Max. I wasn't feeling well and Grace is sick so I thought it best to stay away. Mike, you are such a great, great father!

Max had a pretty stressful night last night. He was quite wheezy. The pulminologist who was here for a few days made some changes to Max's meds the other day. Max had been getting very shaky after his breathing treatments so the pulminologist wanted to cut any meds that may have been contributing to the shakes. It is unclear if Max started wheezing because of the change in meds or if he was headed in that direction anyway.

Today Dr. Milla came on service for pulminology. We met him after Max was first diagnosed and he was one of the reasons we chose to have Max's transplant in MN. He feels that on top of "good old Max" who had a reactive airway to begin with, Max does have some trachea malacia (floppy airway). You may remember that an ENT scoped Max's airway a few weeks ago and said his airway was okay. Dr. Milla said that it is not anatomical, but it is there. I am still a bit confused, but I trust him and it fits with Max's overall picture. Dr. Milla also feels that Max's GVH may be in his lungs or his airway. He said BMT may not agree with him, but he said if Max is showing signs on his skin and in his gut, it makes sense that the angry cells would be in the airway too. He feels Max needs some extra pressure to keep his airway open so he wants to try him on a c-pap machine tomorrow. This is a bit scary to us, as Max was on c-pap before he was vented the first time. He did not tolerate it well. Dr. Milla feels it is worth another try.

As for his brain, Dr. Charnas (neurologist) ordered another EEG tomorrow to check for seizures. They still do not know what is causing them. His soft spot felt much fuller today, and Charnas said he has not ruled out hydrocephalus completely.

Dr. Grewal, Max's primary BMT doc, stopped by today. His main concern is the GVH. He said he has never seen such a bad case in a cord blood transplant before. He also said that Max has one of the worse cases of any transplant he has seen. This is not something we wanted to hear. They started Max on MMF yesterday. It is another drug to fight GVH. They have not taken him off his old one (CSA), instead he is getting them together. There is still a chance that the CSA is causing the seizures.

My mom came in last night to help out. Perfect timing since Grace and I were under the weather.

Please pray that Max's new cells find peace in his body and say some prayers for his doctors as well.

Thanks,
Margaret

Day +67

2003-10-20T12:29:00.001-05:00

WBC 10.6

Sometimes it's hard to think of the right words for the update. It's difficult under the circumstances to try to be both informational and anecdotal. To be real and be encouraging. To be honest and be sympathetic. That's why it's so great when someone else can step up and find the words for us. This is a letter from my Dad, and it's the most encouraging thing we've read yet. We were so moved by this letter, and our spirits were brought up so much, that we thought it best to share it with all of our supporters. Thanks Dad. This really touched our hearts.
______________________________________________

Dear family and friends of Mighty-Max,

I would like to tell you about my recent visit to Minneapolis. After a day of flying from my home in New Hampshire, I arrived at the Ronald McDonald house around 5 p.m. on Saturday, October 11 to relieve Grandma Chick. Despite her assurances that I was about to enter a very special place, I must admit I had more than a few trepidations. Would I see pain, sorrow, pity, or any of the other emotions one might expect to see from people dealing with such serious challenges? From the minute I walked through the front door that evening to the minute I left for the airport this past Saturday, I saw nothing but hope, courage, compassion and above all love. I also came to know the meaning of Super Heroes.

Regular heroes are the historical figures, entertainers, athletes, and others whom we each choose to respect, admire, and sometimes almost worship. In Minneapolis, I had the privilege of meeting people whose exploits far exceed those of my “regular” heroes. These people are on a totally higher level – they are Super Heroes.

Super Heroes are the benefactors, staff, and volunteers (cooks, story-tellers, musicians, teachers, care partners, etc.) of the Minneapolis Ronald McDonald House. They maintain an environment that brings great comfort and solace to all who reside there. I cannot imagine staying in any other place.

Super Heroes are the doctors, nurses, and staff at Fairview Hospital, especially the team up on 4-A. Their dedication and concern for their special patients is so greatly appreciated. (I wonder how long it takes the nurses to commute from Heaven to Fairview each day. I assume they are provided with some special transportation.)

Super Heroes are the children and families who for unknown reasons have been given incredible burdens to bear. I have never seen such beautiful and courageous children and such loving immediate and extended families. Included in this group are Grandma Chick, Grannie Judy, and others who on various occasions dropped everything to quickly bring some needed help to Max and his family both in Chicago and in Minneapolis. Many of you reading this are Super Heroes for what you have done and what you planning to do in the form of fund-raising, comforting messages, and continuing prayers for Max’s recovery.

Super Heroes are my wonderful son Mike and loving wife Margaret who have made all of us so proud. The love they have for each other and for their children is obvious from their poignant updates on the condition of their son. They are handling their situation with the utmost dignity and courage. They are an inspiration to all of us.

A Super Hero is my beautiful granddaughter Grace. She is the smartest, cutest, and most independent three and a half year old in the world. She loves her brother so much and like the other siblings I met, she is forced to sometimes deal with situations that even adults find difficult to comprehend. She is just as strong and brave as the other Super Heroes.

I have saved my greatest Super Hero for last. He is of course my grandson Max (a.k.a. Bubba). He is more important than any historical figure, more handsome than any movie star, tougher than any sports hero, and braver than any Navy Seal. Max is the greatest hero I have ever known and will ever have in my lifetime. I feel so blessed to be his grandfather.

I thank all the Super Heroes for letting me spend a little time in their extraordinary world. They have given me hope, courage, and an understanding of what true heroism is all about.

Love to all,

Grandpa Chick

Day +66

2003-10-19T12:28:00.000-05:00

WBC 11.6

The weekend in review:
Our big worry is still the brain, and he's still not having continuous seizures, and that's the most important thing. While there is an occasional episode of shakiness, they don't seem to last long and seem to be triggered by some agitation and therefore may not be seizures per se. Hopefully these doses hold out and he won't need to step up to the next level of anti-seizure meds since they would suppress his breathing to the point of needing a ventilator again. Elsewhere, Max's skin rash has grown significantly worse in the last 3 days or so, while his diapers have remained the same. Another medicine for graft vs. host disease, called MMR, may be added soon to help. His lungs are holding up well, and he has not needed much help with the cannula. His x-rays are still not perfect and he still sounds "junky" but by Max standards, his lungs are really stable, and it's nice to talk about them last for once.

Goodbye to Grampa Chick, thanks for staying through this difficult time of seizures. And thanks for being a great car for Grace's gas pump game. Hello & Goodbye to Margaret's Auntie Eileen and her cousin Jenny. Thank you so much for coming up and playing with Grace. She really laughed a lot and had such a great time with you guys! "I can't pay the rent . . .You must pay the rent." Once again, someone from Margaret's childhood remarked how much Grace is just like her mother was at her age. What a joy to be given a glimpse into my wife's childhood - so full of life, creativity, and . . . manipulation!

Overall he's still so unbelievably tired. The anti-seizure meds do have a calming effect, of course, but they in and of themselves would not be slowing Max down this much. And he's on very little other medication. The best explanation is that Max is still wiped out from continuous seizures. Even one seizure can wipe a person out, so who knows when he will catch up. Rest is surely good, but we're going on almost 8 weeks since our boy has really opened his eyes. On the other hand, if he saw his skin, he might not like what he sees - raised red splotches all over his belly and back. It's disappointing to have his skin become such a problem because that had responded to gvh treatment long ago and had been doing well. They did take the EEG wires off his head today though, and it's nice to see his big bald bean again.

Halloween is coming soon and I'll be taking Grace to a local dry cleaner to haver her "Belle" costume hemmed and altered to fit. Fall in Minnesota is quite pretty, but we've been told that the campus here had some botanical engineers make sure that all the trees turn yellow and red because those are the school colors. So we've been kicking up lots of red and yellow leaves on our walks between the house and the hospital. Out the window we can see all the college kids going to and from a couple of big dorms. I'm sure I've passed some of the same kids any number of times. They're like every other anonymous college kid on every other campus, and like I was in Evanston not too long ago. But there the colors were purple and white and the botanical engineers were always at a loss, spending all spring and summer cross-pollinating and replanting only to bury their heads into the cold hard Autumn dirt and cry. As for the leaf controllers up here: Where I come from, that's called cheating.

Fighting Crime Before Bedtime,
--mike

Day +65

2003-10-18T12:26:00.001-05:00

WBC 18.2

Good morning. Please check out our new Acknowledgments area in the "How Can I Help?" section. Not only can you learn about upcoming events for Max, you can look back on past events, and you may even spot your name in a Thank You from us. We've tried to remember everyone and everything, but thanks to all of you, that is so hard to do! So many of you are helping us in so many ways that with all that is going on, please forgive us for forgetting anything.The computer went down late last night so no update. But two really good things happened yesterday:

First, the morning EEG showed Max's seizures had stopped. The dosages for the two-anti-seizure meds finally reached therapeutic levels and did their job. They want to leave Max like this for the weekend, and re-check on Monday. Who knows what happens after that. Since they don't know what is causing the seizures, it's going to be hard to know when things can be turned down. They told us he will probably be on these medications as long as he's on his major med (like CSA), which may be as long as a year. The effect of the seizures long-term is, of course, unknown at this time. His MRI did not show acute areas of damage or bleeding, so the hope is that this is more consistent with epileptic behavior - these seizures are a frightening, but controllable, nuisance. They can come back at any time if his levels drop, so this is going to be a long process. This morning, in fact, his hands are tremoring again, so his levels may be down.

Second, our wonderful care partners, Marsha & Pete came by to play with Grace and it turned out the Ronald McDonald House was having a field trip to the movies for "Good Boy!" the new talking dogs from outer space movie. Marsha jumped in the van with about 8 other kids. Grampa Chick watched Max at the hospital and Margaret and I had our first date in about a month. Marsha had picked up lunch for us, which was great, and then we promptly crashed into the snuggliest, deepest nap. That's what happens when you're about 75 days behind in sleep. Grace had a great time with her friends, and it was her first field trip. All the kids had pop and popcorn and Grace said her favorite part was "when the dogs were talking." Hmmmm. Maybe it was a little over her head. Oh well, it's no Finding Nemo.

In other Max news, he's had a fever for a couple of days now and his white cell count has been rising so he may be fighting an infection. He's on all kinds of antibiotics so hopefully this will break. They don't think it's in his lungs or in his brain, so that's good.

Please continue to check out all of Max's Hurler buddies' pages, especially Sophie who's fighting GVHD and Yasmine who's fighting CMV. Also make sure you congratulate Anthony (Tony the Tigre) who now has his new cells. We've been told many times that these Hurler kids can be super-resilient, and their strength can be remarkable. Max has certainly proved that.

Have a great weekend,
--mike

Day +63

2003-10-16T12:25:00.000-05:00

Happy Birthday Great Grandma Ciacciarelli. Number 85!

Today was a fairly quiet day. It was a pretty stressful night for Mike. Max's blood gases were being watched very carefully, and his carbon dioxide was creeping up a bit. He was working pretty hard to breathe, and the vent was parked outside Max's door. He fought it off, thank goodness. And his gases have been pretty good all day.

Max had another EEG this morning, and the seizures are still breaking through. The blood level of one of the anti-seizure meds was still lower then they wanted today so they are working to bring that up. They turned off his Ativan today in hopes of waking him. Mike was very worried this morning because Max was not responsive. He didn't even react one bit when his lungs were suctioned. After 5-6 hours without Ativan Max roused enough energy to squeeze my fingers a few times this afternoon. He also scratched his nose and managed to get his nasal cannula out of his nostrils. In addition to all of the medication making him sleepy, even a "small" seizure can make one very tired, and considering Max has been seizing for days it is no surprise he is so out of it.

The mystery of the day involves Max's blood sugar. It has been trending upwards for no apparent reason (in fact, it is surprising since his steroids have been lowered) so tonight he went on an insulin drip. His rash is looking worse and we don't know how his gut GVH is doing since the sedation has slowed everything down and he hasn't pooped since Tuesday.

Some of you may have already heard about a fund raiser being held for Max. It is a raffle which will be held on November 9th. We knew this was being planned, but had no idea how big it had become. So many awesome prizes have been donated including restaurant gift certificates, gift baskets, and even a 1 week stay in a condo in Hawaii! Many, many thanks to all involved especially to our neighbor Jodi who has led the effort. For more information please contact her at jodiheiss@hotmail.com.

We mentioned a while ago that Park Ridge Newcomers Club chose Max as the recipient of their annual Labor of Love Fund Raiser. It will be held on November 13th at the South Park Recreation Center in Park Ridge. Please contact my sister Beth at micucci4@comcast.net for more info. Thanks again to Mary Beth Micucci for nominating Max.

Please send some encouraging guest book entries to Max's Hurler friends Sophie and Anthony. Anthony was transplanted today and Sophie is not feeling well.

-Margaret

Day +62

2003-10-15T12:24:00.001-05:00

WBC 11.3

The brain, the brain, the scary brain. The plan was to give Max as much anti-seizure meds as they can give him without compromising his breathing. Tonight they hooked up his head to the EEG and it showed major improvement but intermittent seizure activity. They have not stopped yet. There is still one med that has a level that needs to come up and the neurologist feels this might get him over the hump. The nurses and resident here tonight, on the other hand, feel that that one more bump might put him back on the vent. The idea of a fourth vent is sickening to our stomachs, but they've got to get the seizures under control. We've been told that the brain comes first, lungs second. Putting Max on the vent for the fourth time is nobody's goal, but a reality because if tonight's dosages don't do the trick, tomorrow they will need to start other meds that will definitely require the ventilator.

How sedate is he at this point? He's pretty much out cold. He's breathing only about 15 times per minute, and he doesn't even come close to coughing, even when they suction him. He's got no interest in swallowing, and the bottles are out, and a tube may need to go in for oral meds. He's not even stooling, so who knows how his gvhd is doing. His skin is still rashy though, but really, that's the least of our problems.

What's causing the seizures? No one knows.

It's been a hard couple of days. In addition to learning that Max is having seizures, we've had to say goodbye to Kendall and her family. As most readers of this site know, Kendall is 5 and is Grace's best Ronald McDonald House friend and we met them when we first got to the House. Kendall had AML, and was transplanted about a week before Max. Every time Grace visited her brother, she checked on Kendall. Both Kendall and Grace looked forward to the day Kendall could come home from the hospital. She received the news she was 100% engrafted about a month ago, and returned to the house a couple of weeks ago feeling like a champion, and her parents were beaming with pride. She and Grace were able to play a few times in each other's rooms and shared toys and watched movies together. They were the featured friends for the house holiday card. Last week they found out that she is no longer engrafted, and her leukemia is back. This was unexpected, and thoroughly devastating. It is back so aggressively, in fact, that the family was told that no one in her situation had survived to make it to another transplant. Her family made the very difficult decision to bring Kendall back to Florida to be with some family and friends. Her mom told us that she wanted Kendall to see the beach again, and not lose her fight out here in the gray of Minnesota winter.

We have so much love and respect for tough-as-nails Kendall, her brave parents Marnie & Dale, and their wonderfully compassionate son Ty, that we are beside ourselves with grief for this outcome. Yesterday Kendall got enough blood and platelets to make it home, and hospice will care for her after that. They do not have a website, and have tried to keep their situation as close-knit as possible. We've known the news for some time, but until they left, there was some solace in being able to see them. Kendall gave Grace most of her old toys, and Grace has been playing with them. They don't know how much longer Kendall will live, but it will not be long. Grace knows Kendall will not ever be coming back to Minnesota and she is very sad. Today she also asked Margaret if Max was going to die. I think she got scared seeing so many wires coming out of the top of his head. She knows that you go to heaven when you die, and she know that you're not sick when you get there. I told her that, and I hope it is true. Kendall is an amazing girl, and was the perfect match for Grace's spunk and attitude. Margaret and I would both consider ourselves lucky to have had Kendall for a daughter, and in about a year and half, we will have a close facsimile for sure.

Kendall, we love you so much. You are so brave, and Grace misses you already. Marnie & Dale, somehow, in the middle of all this, you came into our lives in such a deep way. We love you for wanting to make every day you have left with Kendall special and beautiful. You understood our fears like no one else could, and we hope we can understand your fears and loss and provide some compassion in your time of need.

That's it for tonight, I'm sending this with the hope Max will remain off the vent and that his seizures will stop. He's such a tough kid.

Did I mention the Cubs?

--mike

Day +61

2003-10-14T12:23:00.000-05:00

WBC 12.5

What a hard, hard day. It began with an EEG. They stuck a bunch of wires to Max's head with strong glue. The wires led to a computer which measured brain activity. The EEG showed that Max has been having continuous seizures. They took him down to MRI right away and ordered another anti-seizure med in addition to the one that was started last night. After his MRI they hooked him up to a continuous EEG which he will stay on throughout the night. The med worked well, but did not totally stop the seizures so he is now getting an Ativan drip which will hopefully do the trick. If it does not work, they will have to try more powerful medication, which will lead to him being intubated again. As the neurologist just said to us, they are trying desperately to prevent this from happening.

The MRI showed increased ventricles (as compared to his MRI in June) and less space for fluid. These are both signs that Max's hydrocephalus has become worse. What is very odd though, is that his head size has remained constant and his soft spot is still the same as well. Initially the neurologist thought Max may need a shunt, but the neurosurgeon came to talk to us and he was not convinced that it is his hydrocephalus. He ordered a lumbar puncture (spinal tap), which was done late this afternoon. The tap showed that his fluid pressure was good, in fact better than it was in July.

They sent cultures of the spinal fluid because another cause of all this may be meningitis. The chances of this are low, as Max has not had any fevers or shown any other signs of infection. The BMT docs have not totally ruled out CSA and steroids as the cause, however, the locality of the seizures in the brain are not consistent with a CSA reaction.

The results of Max's skin biopsy showed grade 2 GVHD. The BMT docs do not believe this result and are having the test run again.

Where does this leave us? We don't know, and neither do the doctors. We are very afraid that the seizures have been going on for a while, as we pointed out to them between intubations 2 and 3 that Max could not focus on anything and he seemed totally out of it. We are frustrated that an MRI was not done during his last intubation as we requested, because maybe this could have been detected earlier (if it had been taking place then). If Max has to be reintubated to fight the seizures we don't know what we are going to do. We have asked so much of him and we keep asking for more. His GVH is not under control, his lungs are unstable, and his brain is going haywire.

Despite all of this, we are still in a better situation than other families. A beautiful 13 year old girl named Jenny passed away last night. She was transplanted a little before Max for Fanconi Anemia. I saw her mother today and she is so devastated. You can visit her web site at www.jennyshields.com. They do not have a guest book.

Grandpa Chick has made arrangements to stay with us until Saturday so we can both be here.

-Margaret

Day +60

2003-10-13T12:21:00.000-05:00

WBC 7.6

This will be a long one, so be patient . . .One day in the hospital can be so BUSY! . . .

First the lung news: Max is breathing well. He still sounds a little "junky" and he still has a wheeze, but he sounds MUCH better than a couple of days ago. His effort to breathe is down as well, and that's nice to see. Margaret found a website of another kid who had Hurler in Canada. He passed away sadly after some breathing difficulty long after he seemed to be out of the woods. He was on the vent for a few days and passed away. While every kid is different, it is some achievement that Max has been able to make it off the vent three times. Keep it up Max! We don't want him to back on. Roger, one of Max's favorite respiratory therapists, asked if he should take the vent out of the room, since he thought it might do well to leave Max a "warning" but I told him I like the symbolism of it leaving the room. When he rolled it out, I shouted after him, "And don't bring it back." I hope it is so. Last night I found an eyelash on Grace's cheek and let her blow it away with a wish, and she said "I wish for my brother to get all better."

Next the gut news: No news, really, but they have decided to do another flex-scope and look up his butt again. He's made some progress, but he's far from looking better. This new look should be in the next day or two.

Swallowing news: Today Max had a swallowing test. While he has been drinking well, the docs wanted to be extra sure that Max wasn't aspirating (food/ liquid going down into lungs) when he swallowed. We took him down to radiology and he drank a liquid that had been mixed with a barium powder. The drink is white, but as they watch him under the x-ray, it's black. He swallowed about 30 times and only one time did anything enter the "vestibule" but he cleared it. In other words, NO ASPIRATION. Then, for the heck of it really, they gave him some vanilla pudding mixed with the same stuff and he swallowed that down too. So, his swallowing is going well and he may be able to move towards more solid foods sooner than we thought. But it will depend on the health of his gut.

Skin news: Max had a biopsy done on some of the rashy skin at the bottom of his belly. The dermatologists feel it could be skin graft vs. host disease, but it didn't start or display itself like it did in the past so the transplant docs disagree. We'll learn more in the next day or two.

Finally, the most intriguing and worrisome news, brain news: Max may be suffering from PRES (Posterior Reversible Encephalopathy Syndrome). I'll try my best to explain it. This is the malfunction of the lining of the brain near the back of the head. This area affects vision and can cause seizures. The key letter in PRES is the R because it is Reversible. This most likely is from CSA (his cyclosporin, the drug used to help reduce GVHD) toxicity and high blood pressure. They've been doing a good job of keeping Max's blood pressure down, but his CSA level is hard to monitor because he's been so sedated and drugged up for so many reasons. Now that he's off so many drugs, it appears like he is suffering withdrawal or is rather delusional. His eyes are not focusing on anything and he's not responding to light. He's not using his left side of his body much, and he's moving his right hand randomly. We've been saying every time he gets off the vent that he's "out of it" and this is the best explanation so far. So tonight he's starting an anti-seizure medicine which may take the edge off of what is happening and may stabilize him a bit. He also started monoxidil for his blood pressure. You might recognize that drug as Rogaine. It turns out that the discovery of a new drug for blood pressure helped grow hair - go figure. Kind of funny that Max is starting this when he's still really bald. Tomorrow, they are going to give him an EEG to measure brain function, and he may get an MRI as well. They may have to play with his CSA level, to try and find a dose that is less toxic to him. Since this drug helps fight graft vs. host disease, Max's gut needs it. But it just might be too much for his brain.

This is all so scary. And typical of Max. Now that his breathing and stooling have made slight progress, we learn of something new. This, like most things, is going to be a long journey to solve so the hard thing again is to be patient. Let's hope that their first guess is the right guess, and it has the least long-term consequences.

LAST BUT NOT LEAST:
Thank you Genzyme for your wonderful dinner and for being so thoughtful in our time of need. These people are the makers of the amazing Enzyme Replacement Therapy treatment Aldurazyme that his helping a number of MPS1 patients who have a less severe form of Max's disease. Thank you so much, your dinner fed us and another family on a perfect night where the Ronald McDonald House did not have volunteer cooks.
Thank you Katie and Gretchen from Optimus! Your costume for Grace is perfect and just what she wanted! We are grateful.
Thank you Uncle Marko! Your handmade book for us will be treasured for years to come. Your artwork once again has brought smiles and not a moment too soon.

Thank you - to all the people we keep forgetting to thank! When our heads stop spinning we will try to remember more people. We have such generous friends and family, and we are so blessed to have you all.

Please pray for Max and for all the other Hurler champions and hope that they can bring Max's personality and joy of life back to us! We miss our dude!

--mike

Day +59

2003-10-12T12:20:00.000-05:00

WBC 6.6

Max had a pretty good day today. He has been enjoying his bottles of Pedialyte. Dr. Sweeney said he can have 1 oz every hour, but Max wishes he could have more. He still sounds VERY junky, and is so stubborn when they try to make him cough. If only he would cough he would be so much better. Dr. Sweeney wants him weaned off his narcotics, as they are also cough suppressants, and Max is handling it quite well. He has not needed any bumps on his pain meds or extra meds to help him sleep. The bottle is the best thing for his mood it seems! They just have to watch his ins and outs very carefully so that he doesn't get flooded with fluid and end up in respiratory distress that way.

Max has been very shaky today and he still seems very spaced out so Dr. Charnas, Max's neurologist, will be paying him a visit tomorrow. Dermatology will also be stopping by to check out the yeasty rash that is spreading. His stools continue to be bloody and we are very doubtful that the steroids did the trick, although the docs are willing to wait a bit before doing anything.

Grace spent some quality time with Grandpa Chick today and we are hoping to make it to the Children's Museum of St. Paul tomorrow. Grandma Chick left but will be back in November. She is hoping to see Ma up and around at that time .

That's all for now. Keep those prayers coming for Max and all of our friends at the RMH.

-Margaret

Day +58

2003-10-11T11:59:00.000-05:00

WBC 4.9

Max has CSA eyebrows! With all of his problems, it's kind of nice to see the growth of monkey hair that we've been expecting for some time now. His head is feeling fuzzier and his chin has a little soul patch. He is adorable.

Grandma Chick is leaving early tomorrow (Sunday) and who would've thought that a nine-day trip would have included an intubation and an extubation? Oh well, at least it was eventful. Thank you Grandma Chick for all your help and welcome Grandpa Chick. Your separate trips have the nurses talking, but we know all is well.

Max's first full day off the vent (again) was fairly stressful. Of course. But multi-medical-degreed Dr. Sweeney came by and came up with an unusual plan - irrigation and suction. He feels that if the problems in Max's lungs are not asthma or upper airway, the next best guess is to call it a "secretion problem." His best guess is that when on the vent, there is better access to sucking out Max's secretions. But when off, with less access they get worse. So he wants Max "less dry" because it only makes his lung secretions thicker and tougher to cough up. This is difficult because they are giving him diuretics now to keep his fluid retention down from steroids. So he changed his breathing treatments and he did turn down Max' s narcotic. As he explained, even over-the-counter cough suppressants are narcotics. Even though he's surely uncomfortable and cramping, he's tolerating less pain medication well because it's being balanced with lots of . . . bottles! That's right, the best prescription ever! Max has been cleared to drink and drink often (water or pedialyte), to make up for loss of water from breathing and from not being on the vent. So far he is sucking down bottles and it's going a long way to making him more comfortable.

Late tonight, they brought in a new crib. It is a super-spiffy, and we've heard super-expensive, bed that has percussions (it actually bounces), and can rock back and forth and side to side (he's velcroed into some padded restraints). The idea here is to keep Max moving, vibrating, etc. They want things loosening up and hopefully the bed can help. But it is LOUD. Imagine an outboard motor or pneumatic drill going off under your mattress, and that's what it's like for Max.

The doctors are trying so hard to figure this out, and this new plan is welcomed by us because at least it is something new, and the treatments are very benign. When the doctors here feel confusion and frustration, it's so difficult. We feel we are here because this place has the most experience with Hurler Syndrome and transplant, but even so we've learned that all of these kids have individual issues, some startlingly unique. Sometimes it feels like we are beating our head against a wall that has only new walls being built behind it. But we remember that everyone has Max's best interest at heart and that if there was an easy solution, it would have been tried. It definitely keeps us going to see them thinking, and trying, and not giving up.

Thanks again for all your support,

--mike

Day +57

2003-10-10T11:59:00.000-05:00

WBC 3.8

Max was extubated for the 3rd time at about 2:45 this afternoon. Soon afterward the ENT came and looked at his upper airway via a camera that was threaded down his nose. His upper airway looks good. This leaves us wondering what is really going on with him. It is possible that he had an upper airway obstruction before that is now gone. He is a little wheezy in the right upper lobe. We are kind of shocked that no one from pulmonary has been by today AT ALL - not before or after extubation. Max's pulmonary treatment plan was just written up by Dr. Sweeney of the PICU (who we absolutely love), but we thought pulmonary was going to be more involved considering Max's history. We do not know how his chest x-ray was this morning or if the bronch worked to clear that right upper lobe.

Right before Max was extubated he had a huge diaper that was much bloodier than they had been all week. This was a huge disappointment, as you can imagine. We have to talk to BMT about this. The yeasty rash that was on his diaper area and neck seems to have spread.

We were sad to learn that another 4A patient lost his life. We met Dan's mother at the Days Inn back in June when we first came to MN. He had leukodystrophy, and was 27 years old. He was misdiagnosed for years, and he and his family suffered greatly. I knew he was having a lot of trouble the past few days, but was shocked to see his room was clear this morning when I came in. I only wish I had a chance to talk to his mother one more time. There are also some kids at RMH who really, really need prayers right now.

I will send another update tonight if anything major happens - let's hope you don't hear from me until tomorrow!

-Margaret

Day +55

2003-10-08T11:55:00.000-05:00

WBC 4.9

Max had a good night and good day so far. His oxygen is now down to 40% and this afternoon they lowered his rate on the vent from 22 to 20 (breaths per minute) . As I write this, the doc is about to lower his setting to 18. He is not breathing over the vent when he is asleep. When he rouses a bit for diaper changes or vitals he takes some spontaneous breaths. He is going to have a bronchoscopy sometime tomorrow. They will try to open up the right upper lobe of his lung that has been collapsed for quite a while. They will also check cultures.

Dr. Sweeney, the ICU attending and anesthesiologist, has been brainstorming to try and figure out what is going on with Max. He is going to suggest a study of Max's upper GI to see if reflux is causing the breathing problems. When he is nearing extubation ENT will talk to us about scoping him in the OR.

They have been weaning him off of his Terbutaline (IV bronchodialator) all day and just shut it off. Now maybe they can remove the IV he has in his scalp. We should know shortly after the results of his next blood gas.

He has had a strange rash in his diaper area, unlike one we have ever seen. It also appeared on the back of his neck. The docs feel it is yeast and are treating it with Nystatin cream. Dr. Charnas, Max's neurologist, came by today and said Max is looking good from a neurological perspective. He would normally do an MRI when Max is 90 days out of transplant, but may take advantage of Max's current intubation and do an MRI now. The BMT docs will be discussing this with him.

That's it for now. Keep praying for progress for Max and all of our friends here in MN.

-Margaret

Day +54

2003-10-07T11:54:00.000-05:00

WBC 6.0

As someone pointed out to me today, you just can't play a sad song on a banjo. When the blues man wants to lay down a song of heartbreak and loneliness, he doesn't pick up a banjo. So to the gray-haired, ponytailed music man who comes to the Ronald McDonald House every Tuesday afternoon, thank you. And when my daughter sings along with you, just know that you are playing the happiest instrument in the world.

We are once again adjusting to life on the vent. We have lots of questions about what will happen if (when) he is extubated, but Max still has to make progress working with the machine. Today he did just that. He began to breathe easier, working well with the machine, and was able to breathe with less oxygen support. Not much else to report, time moves glacier-slow when on the vent. Progress is measured in tiny mechanical increments, and we have a long way to go. Diaper-wise, there's still blood in his stool, but it is more black-green, and more sludgy and that's a step in the right direction.

Gracie, Grandma Chick, and Margaret all went to the Como Zoo in St. Paul. It's a free zoo along the lines of Lincoln Park Zoo in Chicago and Grace had a good time looking at the polar bear. It was good for Margaret and Grace to get out, and nice of Grandma to drive. Then there was the banjo-playing music guy "shave and a haircut, two bits!" and an art project tonight at the Ronald McDonald House. Once again we must say that the Ronald McDonald House of the Twin Cities is an amazing place and everyone reading this should know that these houses are for families of critically ill kids and they need all the support you can offer. Please check out your local RMH and see what you can donate or what you can do to help. Max's Auntie Dana already cooked a meal for the RMH near Loyola (where Max was born) and we hope to be able to return the generosity we've received when we get home.

Thanks also for all of the cards, emails, and packages we've received lately. Our mailboxes have been bursting with such wonderful surprises from so many people and it's helped to put some of the overwhelming frustration and disappointment we've been feeling at bay.

--mike

Day +53

2003-10-06T11:54:00.000-05:00

WBC 8.3

I wish we had more answers for everyone today but we do not. Mighty Max is such a Mystery Max that no one is exactly sure what is going on with his breathing situation. He has been wheezing so badly the past few days despite all of the medication they gave him, but he stopped wheezing once he was vented. It was pretty amazing. This behavior may be indicative of an upper airway problem, so ENT will be consulted. I thought ENT was contacted yesterday but they were not. They should have been contacted today but I haven't heard anything yet. The hard thing is that the ENT cannot really evaluate his airway with the breathing tube in it so most likely it will not happen until Max is ready to be extubated. If someone had thought of upper airway obstruction yesterday maybe this could have been done before he was intubated. Now we have to wait until he is ready to get off the vent, check him, and then who knows what.

Last night he got his albuterol, BD's and suctioning and sounded clear afterwards. Then the RT gave him his Pulmicort neb and Max started wheezing pretty bad. They had to give him more albuterol and increase his O2 significantly because his sats dropped. He had been weaned down to 55% O2 prior to this incident but has needed quite a bit of O2 through the night and today. I wish Pulmicort was the easy answer to all of this but he has been on it since last November or December with no problems. It may have been an issue of particle size when blown into the vent with the neb. The last 2 times he was vented he received Flovent puffs not a Pulmicort neb.

The Pulminologist has been throwing around the term Chronic Lung Disease of Prematurity the past few days. Max was never diagnosed with this in the NICU, so it is new to us. The BMT docs told me today that it is on the same spectrum as reactive airway disease (asthma). There was talk of doing a bronchoscopy today too but that did not happen.

Max's sats and blood gases have actually been worse since he was vented. They are not too worried about the gases, for reasons still not totally clear to me so I will not try to explain them here. As for the sats, who knows. As you might imagine, Mike and I are pretty frustrated. We do not want to end up in a horrible pattern of vent, wheeze, vent again. We really want some answers, or at least a better formulated plan for dealing with this. The nurses have been juggling his sedation today as he has been waking up quite a bit. This wouldn't be so bad if he was breathing more in sync with the vent when he took spontaneous breaths.

In other news, Max is retaining some fluid today and his weight is up and he is puffy. The lasix is not working as well as it usually does with Max so they gave him a medicine called Albumen to help draw fluid out of the of tissue and into the blood stream where the kidneys can see it and get rid of it. He has not stooled since yesterday morning, which is great but not necessarily a sign that the GVH is better. Being on a vent slows things down too (it did the last time) so we are not sure what is going on. His steroids will be reduced tomorrow and the GI doc will be consulted to see if she would like to scope him again.

This turned out to be a much longer update than I intended so I apologize. We are so depressed and frustrated right now. I feel sick when I look at him like this again. He was just starting to come back to us and now we are right where we were one month ago.

My mom went home on Saturday when Mike's mom arrived. Mike's dad arrives this weekend. RMH house has asked if Grace could be in a RMH video and we said yes. She is a regular RMH star these days. Tony the Tigre arrived on 4A today so wish him luck as he starts chemo tomorrow.

Thanks for your prayers,
Margaret

Day +52

2003-10-05T11:52:00.000-05:00

Mid-morning update

It is with sad hearts that we report Max was put back on the ventilator for the third time at about 11:15 today. This is what nobody wanted. Please continue to root for Max. Hopefully they will learn more about his lungs and his airway during this time. Special thanks to all the people at the hospital who worked so hard (especially Max himself!) to keep this from happening for so long.

--mike & margaret

WBC 6.7

Saturday was another very tough day off the vent. And last night was even tougher. This morning they told me that Max needed to go back on the vent. It's 8am now and it hasn't happened yet, but here's the story so far:

Max had been struggling. He'd been working very hard, at least as hard at times as when he was put on the vent before. But, his blood gases still looked good and his respiration rate was not high for long. He sounded terrible though. He was wheezing nonstop, and noisy. You didn't need a stethoscope to hear the effort. His expirations were much longer than his inspirations, indicating wheezing as well. Overnight, however, Max's blood gases weren't as good. He was retaining too much carbon dioxide, and was not exchanging oxygen as well. The ICU attending came in to help care for another patient in distress and felt that it was again time for Max to be intubated.

We're thankful that they've been giving Max a chance to beat this. On Friday, pulminology told us that the need for intubation was imminent. Then ICU told us that we could wait a bit and let the meds work. Then they came back at night and the ICU doc sort of shrugged and said it was time. But he has made it another day and two more nights so that is pretty good. He's on all the medication he can get for this wheezing and the high-dose steroids should have helped. But most people (nurses, RTs, docs) feel like there's not much more they can do and he's really not getting better, just holding his own. Either he'll improve, they say, or he'll tire out and be put on the vent. They feel that if nothing else, he'll be more "comfortable" (a word that's sounding less and less encouraging). So the threat of the vent is real and is happening on an hourly basis or so. It is something that everybody seemingly wants to do and wants to avoid.

If Max does get put back on the vent, we will feel deeply saddened by this situation. We have been told that going back on a vent a third time would be a "major setback" and there's no way to shake those words out of our heads. Since they don't have an answer as to why Max is wheezing and having such a hard time breathing on his own, it's hard to feel confident that even if he is able to get off the vent again, he'll be able to stay off. But that's what we have to hope. Still, our hearts will be broken again.

Grannie left yesterday and Grandma Chick arrived. So Grace went from one Grannie to the next for a buddy to play with. We don't know what we would have done during this latest stress period without this help. So once again, thanks to our Moms for being so great.

Breathe Max Breathe!

Mike

Day +50

2003-10-03T11:50:00.000-05:00

WBC 6.4

The care conference was overall not as bad as we feared. Max's situations are critical, our fears are real, but he is still in the game. We had a nurse coordinator, the nurse administrator, a respiratory therapist, a pulminologist, our current BMT attending, the current BMT fellow, our original primary BMT doc, and our neurologist there. Everyone wants Max to get better. And they recognized some of our frustrations and they tried to hear us out. They have changed our nursing situation back to one-to-one in anticipation of intubating Max again.

They all realize that he is still fighting his two battles simultaneously and the plan for his gut GVHD is the increase in steroids. The plan for his lungs is much more difficult to predict. The biggest news is that the pulminologist feels that Max isn't just acting like a bad asthmatic, he's also displaying symptoms consistent with chronic lung disease from prematurity. He wasn't on oxygen or vented very long as a preemie, but when combined with Hurler, he probably has chronic lung disease in some form. He told us that the best treatment for this is growth, but that's down the road as he gets older. Of course, he's got to get through his current trauma to get there, but it was still sort of nice to hear a doctor talk about the future. Every time someone gets vented, they become more of a "high risk" patient, and if it happens for Max it'll be the third time. Nobody feels this is a good thing long term, but if it has to happen it may give him some rest and comfort and hopefully his lungs can open up. His wheezing is getting really bad, and going on a vent is not really a treatment for wheezing, it's kind of a last resort to offer some rest.

I guess the best case scenario at this point is for Max to respond to the new IV bronchodilator. It would be great if that opened up his lungs and we could come off the constant Albuterol mask. But it seems clear that no one is too hopeful for that to happen. So if vented, we have to hope that his lungs can heal again and that his guts will respond to the new steroid doses. Maybe if his intestines can stop bleeding and get better, he can be treated for the breathing slightly different (if he comes off the vent).

Neurology feels Max is medically delirious. He is there, but not there. He is feeling the effects of the meds that sedated him on the vent. Now that he's likely going on the vent again, who knows how much farther that will set him back. He said he's not worried much about Max because these are just meds that take a really long time to wear off.

What can we say? We were told that at day 50, for someone who had been through sepsis, has VRE, skin/gut/liver GVHD, has been intubated twice, etc. Max is doing well. But that was a lot of qualification before "doing well". Still, the alternatives are worse. We are glad Max is here with us even if neurology tells us that he's not mentally here with us. He's fighting so hard to breathe and there's just no quit in our boy. Many many of Max's caretakers have told us that most adults would have given up by now and just been vented. But Max is a trooper.
__________________________________

Midday Update

The docs are trying their last resort before venting Max again. He is working harder and harder to breathe and his blood gases are showing it. They will be giving him an IV broncho-dialator now and if that doesn't help they will intubate him. We have our meeting with the docs in 1 hour and it is looking like it will be a lot of bad news.

He just got a new IV in his head for the new med.

-Margaret

Day +49

2003-10-02T11:49:00.000-05:00

WBC 4.4

We didn't have our care conference today (it will be tomorrow) so it's hard to give an overall picture of Max's health just yet. Suffice to say, we're well past the time of discharge for a "best-case-scenario" but our champ is still holding his own. And he's still facing the same two main issues: gastrointestinal GVHD and unstable breathing/lungs.

On the gut front, he had another flex sigmoid ("butt scope") done today and more biopsies were taken from his intestinal tract. The GI doc felt pretty certain that he was still battling GVH. We thought the return to straight blood coming out of his butt was pretty conclusive ourselves, but tomorrow will once again bring official word. But on the basis of visual evidence the BMT doc has decided to put Max's steroids up to a very high level to try and teach these graft cells a lesson or two. This will result in a VERY agitated kid, so it will again be difficult for Max to come around to his old self. The first time they changed his steroid dose it seemed to give us a glimmer of hope (we actually saw brown again!) so hopefully this change will finish the job.

As for lungs, no changes today. The four-hour constant albuterol nebulizer treatment is now entering it's third day so I guess that qualifies as regressing a bit. They just don't seem to have the best control of his breathing yet. I've said it before and I'll say it again, there is nothing harder than watching your child struggle to breathe. So far they are doing all they can to keep his lungs open and to get his secretions out. He's made it 9 days off the vent so far, with hopefully many more to come. The changes in the treatment for GVHD always seem to come around and give his breathing a little kick in the teeth so we'll see what happens.

Again I make this appeal: Who sent the fruit basket that we got today? Identify yourself so we can thank you proper! Also, we received an amazing stack of books from the New Jersey Ciacciarelli's and two great bears from one of Max's NICU nurses. Once again, we are running out of words to use to describe the gratitude we feel for the generosity we never could have expected.

Finally, please go international with your support of Max's Belgian girlfriend, Yasmine, who has just caught a nasty virus called CMV. Her link is in the "Friends with Hurler" section. It is so amazing to see what happens when Max's little army of supporters is dispatched around the globe. You guys are awesome!

That's about it, I think we'll be able to give a fuller picture tomorrow of Max's progress and his future. Let's hope that this meeting is positive, we could really use some encouragement from the docs. Not false hope, encouragement.

Always trying to keep it short, never succeeding . . .
--mike

Day +48

2003-10-01T11:48:00.001-05:00

WBC 3.8

Today was much calmer than yesterday. Max actually got some sleep and it was so nice to see. He hasn't slept more than 2-3 hours straight all week. He continues to wheeze and is still on the continuous albuterol neb. He is also still getting the atrovent nebs every 4 hours and pulmicort (nebulized steriod) 2 times a day. They added a new medication that I cannot spell or pronounce to help with the secretions in his lungs. It is mostly used for kids with Cystic Fibrosis. We are still extremely worried, but comforted by the fact that he is resting more today.

Just when we thought that his gut was on the upswing, Max surprised us with two diapers full of blood. They will be revisiting the issue of the scope tomorrow. On our request, we will be having a care conference with the different departments caring for Max tomorrow afternoon. We are not sure where Max stands right now, and we just want to get everyone's perspective on things. As Mike mentioned yesterday, we now have all new docs as the rotations have changed. We just want to make sure that someone who knows Max well is always going to be following him. While we know the doctors can't stay on rotation forever, it is really stressful when your child is so sick and the staff keeps changing.

Just to give us one more thing to worry about, Max's central line is slipping out. We noticed during his dressing change that the stitches that used to be under his skin are now hanging out so as I write this the nurse is putting some steri-strips on it. If that doesn't work he will need new stitches. The biopsy of the bruises on his back came back negative for infection.

Grace now has a cold, not surprising since everyone at RMH seems to be sick. Her cold is not too bad, but enough to put me over the edge last night. I am sure Mike and I will get it since we are getting no sleep. I called my mom at midnight last night and had a full meltdown, so Grannie caught a flight today and is now in MN! We can get some much needed sleep now. She will leave on Saturday when Mike's mom arrives.

I am going to hold Max now so I will keep it short tonight.

-Margaret

Day +47

2003-09-30T13:02:00.000-05:00

WBC 4.2

Sorry for the lack of update yesterday, but it was hectic and it's hard to keep up because with less nursing care, we have to be totally vigilant by the bedside with Max. It's been a tough couple of days. It's been 47 days since Max was transplanted and when looked at as total journey it seems like it's been a lot more bad than good. I know we should be glad that Max is engrafted and is still here with us, but damn, the lingering effects of sepsis, VRE, two intubations, and GVHD are just starting to take their toll on us as well as Max. There are so many departments managing his care and it is hard to keep it all on track. Sometimes we are called upon to make the best decisions for Max but we are barely getting enough sleep and we are not doctors and sometimes it is just too much. We are trying to put a consult together with us, nurses, and all the department doctors so that we can at least get everyone together in one room. We know we're getting outstanding care and that Max has been the recipient of a lot of bad luck, but we are feeling a little beat up too and we could use some more good news.

He's still struggling off the vent. I guess it's a matter of perspective. While we felt Max was doing OK off the vent, pulminology has a different opinion altogether. Max went into some minor distress this morning and it was decided that it was time to get Pulminology back involved with Max (ICU had been watching his breathing since he had been vented). We were a little dismayed that they had been away for so long, but glad they were back. Beginning at around noon today, they've begun to treat Max very aggressively. He was given nebulizer treatments every hour and then at 6 o'clock tonight he began a 4-hour constant Albuterol treatment. After this, they will review things again. He is still "junky," requiring suctioning down his throat and nose every four hours. The nebs are for his wheezing which had gone away but has resurfaced today. This constant Albuterol treatment was one of the last things they tried before Max went back on the vent last time so we're more than a little scared.

As for his GVHD, he stooled less than his usual amount yesterday so they postponed the flex scope of his rear end. This was probably good with this lungs beginning to decline. But when we look in the diapers, we don't see much to feel good about.

And in a surprise turn of events, we have a new team involved - Dermatology. Max's back has been bruising and in a couple of spots, the bruises have looked pretty severe. The best explanation is that his capillaries are losing the battle with his increased steroids during BDs (BDs are "bronchial drainage" hits that Max gets on his back and chest to loosen secretions). On his upper right shoulder it even looked sort of black and had a raised spot in the center. So the BMT fellow looked outside and the attending Dermatologist happened to be on the unit. They came in, looked at things and decided to do a biopsy. This involved a small circle-cutting tool twisting into his shoulder and then pulling out the skin sample. Then they stitched him up. They took two samples to be sure it's just a bad bruise and not some sort of mysterious infection.

Additionally, neurology was consulted because even though Max is a lot more awake now, he's "out of it" a lot of times. He's not himself, he doesn't have much personality, and he's kind of off in space. He was curious about something called steroid psychosis, where the patient gets a little delirious from being on high dose steroids. But once he went through Max's medicines, he thinks it's just the carry-over of his intubation sedation, and it may be 2 or 3 weeks before all things straighten out.

Is that it? Whew! With so much going on, it's hard to keep these updates short and sweet. Check out the photos section, we've finally got some new pix on the bottom of the page.

Thanks for reading this far, and thanks for supporting us.
--mike

Day +45

2003-09-28T13:02:00.000-05:00

WBC 4.7

1:34am - Respiratory Therapy just left and it was someone who we've had a number of times in the past but hasn't had Max in about a month. He was so nice and he really gave Max the full service treatment. There's something to be said for nice people - they make all the difference. "RT" has been a huge part of Max's transplant because he has so many lung issues, and they are probably the most overworked department in the hospital. So when one of them really takes the time to take care of Max - extra care even - it means a lot. His breathing has been pretty stable again today. He still needs oxygen through the cannula but it's been turned down slightly. He's on a little less sedation now too, so when he's feisty he reaches up and pulls it out of his nose. It's kind of nice to see that feistiness, it qualifies in my book as an emotion, and it's nice to see some emotion.

Today the doctors told us what separates the levels of severity of gut GVHD and it's all in the amount of stool. Max's total amount is still nearly as high as it was before they started this round of steroids. It is looking a little bit better (less straight blood), so they are still not sure if it is working or not. They told us that if there isn't more improvement in the next couple of days, they will need to take another look inside (bottoms up!) and if so they will need to intubate again. We can't imagine Max going back on a vent, even if just for a procedure, because he's had so much trouble coming off the vent. But they have to do what they have to do and today I even joked that I want a rubber stamp made with my signature so anyone could just sign the release forms for these procedures. If they go in from the bottom while he is on the vent, they are also going to go in and do a bronchoscopy to clear out the upper lobe of his right lung which has remained collapsed for the last couple of days.

This is the fourth day in a row with a WBC drop but the doctors told us his number is still good, and there are going to be "lulls" in the counts.

We also want to alert everyone to a new website for another supergreat Hurler kid. His name is Anthony and he and his family are from Illinois, from the Quad Cities area. He's a twin, but his sister does not have Hurler. Here's the site: http://www.caringbridge.org/il/tonythetigre/index.htm

Please take the time to visit his site and wish him well, it's nice to get some support at any time, but especially heading into transplant. We met his family when they were still researching hospitals, and now that they are here they are going through all of the fears and emotions we went through in the beginning as well.

Finally, Margaret and I both visited the site of a family who lost their son very recently (to hepatoblastoma). They had been living at the Ronald McDonald House for a year and a half and while we didn't know them, Grace played with the boy's siblings a few times. We were reminded that "tomorrow" is not a promise. It is a gift. Somehow, with the pain of their loss so sharp they still have this wonderful advice: "Take a day off of work to be with your children. Even if it is to have fun. Do it. Don't wait. Don't put it off. If you have worked and earned a personal day, do it. Take them in your arms hug and love them. Just think of the great memory: "I took the day off of work and hugged and loved my kids all day. That's all we did."

Please take this advice,
--mike

Day +44

2003-09-27T13:03:00.000-05:00

WBC 5.9

Max had a pretty stable day. Only a few dips in his sats when he was uncomfortable. The first half of my shift (I arrived at noon to relieve Mike) was spent trying to comfort Max. It could have been his gut bothering him, or he just could have been thirsty. He is so desperate for liquid it just breaks my heart. Too much fluid can irritate his gut and worsen his diaper situation. He tried 1 oz of Pedialyte and loved it and then was angry that his pacifier wasn't dispensing anything. We then tried dripping small amounts into his mouth with a syringe. At around 5 PM he finally began to settle in and has slept pretty well ever since (it is 1AM Sunday now).

Max's lungs sounded pretty clear today. At times he is "junky", but he just gave some great coughs all on his own. His treatments are every 4 hours now, which is easier for Max, and easier for me too. It is really hard to watch him go through the trauma of suctioning every 2 hours. We know it is a very necessary evil to keep him off the vent.

As far as the GVHD, we don't know what to think anymore. We had two diapers in the past 24 hours that had no visible blood in them. I was so happy when I saw one tonight I almost did a diaper dance. But then the nurse and I just went over his numbers for the day and he has stooled more and more frequently than he has in a number of days. We are wondering if the increase in oral fluid has anything to do with it.

We are on our first night without a one to one nurse and I don't think I am going to be able to sleep much (not that I sleep much anyway when I am here). It is scary but nice to know he has made enough progress to get to this point. The other day we were very against the nursing change, but today we feel okay. The nurses are paired with one other "light" patient and still spend most of their time in here. Today was the last day for the BMT fellow who has been so nice to us. We are so grateful for the care she has given Max and we are so sorry to see her go.

There are several children up here who are not doing well. It seems every time I walk past the family lounge someone is in there crying. Three patients have died on 4A in our 54 days here. Two children (non-transplant) that we know of from RMH have passed away as well. One can only imagine the suffering behind the 14 doors on this floor. Please pray for all of these families. Please also pray for Anthony, a one year old Hurler child who will be admitted next week for transplant.

-Margaret

Day +43

2003-09-26T13:04:00.000-05:00

WBC 6.5

Before we get to Max, we have two important thank you's to go out: First to Margaret's sister Beth for hosting a Pampered Chef party in Max's name. The turnout was great and all who attended were so supportive of Max. Thank you to all who attended, and thank you Bethie for being such a good sister and a wonderful hostess! Meanwhile, across the country, today was the day of the Gorham, NH school cafeteria Ice Cream Sundae Party. It was a dollar per sundae and the event was a huge success. Thank you so much to everyone who worked on this for us. It means so much to know that Max has so many supporters around the country in his time of need.

As for the little guy, he made slight progress with his breathing today. Basically he was more consistent. He was able to handle the increased "deep suctions" of his nose and throat better today without desaturating much. He was also more awake today on less sedation, and I was able to hold him. He felt heavy even though he's looking a little skinny to us. He's getting a little stronger and he is once again using his videos for comfort. He has been manic for his oral medications, and hopefully that's a sign that he's ready to drink a bottle.

His stools had been starting to improve - less bloody and less watery. But tonight around midnight, I've seen a number of small diapers in a row with more bright red blood in them. It's still not the worst I've seen (it's close), but it seems like a step back from the progress of the last day or so.

Gracie is really enjoying having her transplant buddy Kendall back at the Ronald McDonald House. Grace visited her every time she came to visit Max, and she's happy to have her "home." Also, Max's British girlfriend Sophie found out today that she's 100% engrafted. She's a little cutie and she's been doing so well. Things haven't been as quick for our guy, but we're so happy for her because her family has been so nice and supportive of us. Please be sure to find her link on this site and say congratulations.

Thanks again for all the support. We really need it - especially lately!

--mike

Day +42

2003-09-25T13:05:00.000-05:00

WBC 5.4

The stress continues. Mike and I both feel like we could explode into a million pieces at any moment. Max ran into some breathing trouble last night and has dipped quite a few times today. Just what we were worried about and why we were fighting to keep the one to one nursing care. Yesterday evening Mike was told that Max would be on two to one today, but his desaturations have kept him one to one at this point.

Max is now getting breathing treatments every 2 hours. So you know what Max is going through, here is his current respiratory plan:

Albuterol or Xopenex nebs every 2 hours Atrovent every 6 hours. Deep suction every 2 hours (a suction catheter is stuck down his nose or throat to try and get him to cough) BD's every 2 hours (the RT uses a plastic mask and hits Max repeatedly on the lungs to loosen the secretions) Pulmicort (inhaled steroid) 2 times a day

As you can imagine, Max does not get much sleep, but the doctor said it is a necessary evil right now if we want to keep him off the vent. He is coughing spontaneously sometimes and hopefully he will start to do this more.

His diapers have remained the same, and tonight his feet seemed red, so we will have to discuss this with the docs tomorrow. We are very anxious to see a change and get some reassurance that the steroids are working.

I got to hold Max 2 times today! I got to hold him very briefly when he was extubated last time, but Mike hasn't held him in about 4 weeks. I am sure Mike will get a turn tomorrow. He did well both times I held him. He is so weak that it is like holding a giant infant. He has no head control yet. He is moving more in general, and is more awake too. He tries to get away from the nebs by shaking his head and he closes his mouth tight when they try and get in his mouth to suction. The doc gave the okay for Max to suck on a toothete (tiny sponge on a stick used to clean his mouth) soaked in 5cc of water every 8 hours. Seeing as he hasn't had anything to eat or drink in 4 weeks or so, he absolutely loves it. He also sucks down his oral meds. He is so thirsty! I cannot wait until he can drink a bottle again. He is so skinny that his nickname Bubba hardly fits anymore. No more Bubba cheeks, legs or arms. Max started cutting a new tooth while on the vent. At least he can get some narcotics while teething!

In other news, Grace's friend Kendall was discharged from the hospital today. She is back at the RMH and she and Grace have already played together. They also posed for a RMH Christmas card. I am really hoping the pictures come out. If they do, I think the RMH will raise a lot of money from them from me alone!

Max is getting fussy so I better get going. Pray for clear lungs, healthy gut and strength.

-Margaret

Day +41

2003-09-24T13:06:00.000-05:00

WBC 5.5

What a day, what a stressful day. But a good day too. Max is fairly stable off the vent. In fact, now, it's after midnight and it's the best he's saturated all day. Way to go Max! The stress comes from the desire to fairly quickly transition us out of a one-to-one room situation. We've had a nurse full-time in Max's room for 3 weeks now and while it's a sign of progress to return to the general fold, it's a little scary. Max was reintubated within 48 hours the first time and we had hoped to keep this personal attention for at least that long. Mostly we're afraid of being too sleepy at night to hear one of Max's alarms. We're just going to have to make sure that the nurses stay vigilant with our little guy.

As for the diapers, well, they're still very bloody. Last night Margaret was around for the worst one yet -- bright red blood spilling out onto the sheets. Today's sign of progress is that the stool (can we even still call it that?) is a little darker, and maybe more "clotty" But tonight we still had a nasty one to contend with. Sorry to be so graphic, but that's the way it is. When one of these bad boys is brewing, Max's saturations drop, his belly convulses, his face grimaces, and he needs help with pain meds. However, we've got a doctor now that still remains unimpressed with Max's diapers. He is confident the new doses of steroids are going to work. But he asking us to be patient as it will take a few days to see effects.

The bloody stool and the newly freed up airway are the lingering concerns for Max. He is engrafted, his white blood cells and neutrophils are climbing, and overall clinically he is doing very well. We are very stressed from worry and lack of sleep. We have been impressed with the care we have received at every step of the way here in Minnesota, but at the same time we have been surprised by just how exhausting it can be to be so involved with the care. But we know that we are the best advocates for Max and at his age we have to be his voice. Of course, now that he's off the vent, we can hear his real voice, so frail and tired, coming back to us from days not long ago.

He's still very sleepy from the sedation he needs. He's not strong enough to hold his head up or to roll over or anything like that. But his eyes are open a lot more and he's been able to watch his movies. I keep telling him, "You're awake! What a nap! What did you dream about?" And I feel like he's saying back, "Mozart . . . puppets . . .Bach . . . Chicken with Chicken Gravy . . . animals . . . and Julie Clark, always Julie Clark."

Temperatures dropping rapidly up here: the coats are on, the hoods are up.

--mike

Day +40

2003-09-23T13:07:00.000-05:00

Tuesday Evening Special Update!!!

Max was extubated at about 5:15 this evening. 45 minutes into breathing on his own, he is doing well. He is on a nasal canula at 3 L of O2 and his sats are in the mid to high 90s. His lungs sound a but junky, so we need him to cough some stuff up now that he will not be getting suctioned like he was on the vent. Please pray Max has the strength to stay off the vent and that his sensitive lungs don't start wheezing again!

__________________________________________________________________________
WBC 2.9

The results of Max's biopsy showed that he still has active GVH in his gut. He has even more blood in his stool. The afternoon he stooled about 120cc of straight blood. I cannot describe how I felt when I saw this happening to him. While it is not completely unheard of, it is somewhat strange that his skin and liver responded to the ATG but his gut did not. They doubled the amount of steroids he is getting to try and treat it. The steroids come with their own set of problems, one of which is irritation to the gut so they also increased his antacid. The increased steroids also make him more susceptible to infection.

On a much more positive note, he is currently in the middle of a pressure support trial to see if he is really ready to get off the vent. He is doing excellent. Now that they know what is going on in his gut he does not need a CT scan and could come off the vent this afternoon or tomorrow. It depends on how well he does on the trail and the availability of the ICU attending. He wants to be present when the tube is removed. Max has been much more alert the past couple of days and it is so nice to see his eyes. We want our son to come back to us so badly. We are both excited and very scared at the removal of the vent. We hope and pray this time it is for good and that he can remain comfortable gut-wise.

In other news, our neighbor and friend Jodi Heiss has been working hard at fund raising. She is a Creative Memories Consultant and she hosted a CM party at my sister's house a few weeks ago. We recently received a card from Jodi with the proceeds for the event and we were so overwhelmed by the generosity of friends, family and strangers! Jodi is also planning another event which will involve a raffle. Web Mistress Chris will be posting more info on this soon. My sister Beth is hosting a Pampered Chef party at her house on Thursday as well. We cannot thank everyone enough.

I will send another mini update tonight if Max comes off the vent. Please send some hot prayers our way.

Love,
Margaret

Day +29

2003-09-22T13:08:00.000-05:00

WBC 2.5

All in all, things are continuing to go well. He's even been growing his white count a little bit in the last couple of days without needing the growth factor. He's almost 40 days out from Day Zero and the time has flown by. While some kids are lucky to be out of the hospital by this point, we're still encouraged by Max's progress - and by the support we've received from all of you. Please go back and read the last couple of updates since they include some important thank you's and some information about some outstanding generosity we've received lately.

Also today we saw Anthony, another little dude with Hurler who's from Illinois. He's a twin, but his sister doesn't have the disease. He'll be starting everything very soon so please add him to your kind thoughts and prayers.

Here's the latest on Max: Sunday was fairly uneventful. Max has continued his progress on the vent and is ready to be extubated. But it is on hold because of his gastrointestinal issues. He has continued to have bloody stools and it appears that one of two things is happening: 1. His GVHD of his guts is not responding enough to the ATG and steroids he is on and he will need the next level of treatment. 2. The bleeding has some other explanation.

So the plan is to do a "flex scope" today of his lower GI system from below. They did this before to confirm that he had GVHD. If they see some residual bleeding from his previous biopsy, they can cauterize it at this time. Also they will be doing a new biopsy and results will confirm or deny GVHD by tomorrow mid-day. Because this is a scope, they also can look around and can compare the general health of the region to what was seen before.

If it comes back negative, they will do a CT scan. This will involve transporting Max while he is on a vent. They unplug the vent and have to "bag him" through the whole procedure. The CT Scan can only show the location of bleeding, but can't necessarily explain the cause.

So more mysteries to be solved. Where is Angela Lansbury to solve this one? Wouldn't it be great if she could just ride in on that bike with the basket on the front and have all the answers? What am I talking about?
--mike

Day +37

2003-09-20T13:09:00.000-05:00

WBC 2.2

Same old, same old. Again, that's a good thing. Max continued his progress on the vent and has neared a point where extubation is possible. We have been through this before, so it's like Yogi Berra says - deja vu all over again. In fact, even when he was first born it was the second time they took him off the vent that he was really able to do well on his own. Let's hope history repeats itself. That said, Max may not come off today so we'll keep our fingers crossed. In graft vs. host news, Dr. Billy Rubin says his liver is doing well, but otherwise we're not so sure. Max's skin improved so much, but now we're thinking it looks red again. And while he seems more comfortable overall, he is still making a lot of stools that are bloody red-brown and aren't too fun to look at.

Otherwise, it's been nice having Granny for such a long time (and what a gift to her if she's here to see Max get off the vent!) and yesterday Auntie Beth, Uncle Vince, and cousin Vinny drove north to be with us as well. Grace really got a kick out of her cousin who is talking so much and had a blast motoring around the play rooms at Ronald Mcdonald. What are we going to do after Sunday? It will be the last day we have family help here for a while and we're going to miss it. We know families out here are getting by without any help or spouses are getting by without each other, and we are so grateful for all of the sacrifices people are making to provide us with such great care. Thank you.

Thanks also to our friends overseas, Padraic & Tina, for finding a home for our updates until our webmistress Chris returns from the aftermath of Hurricane Isabel. Don't forget to check on their little Sophie often. She's Max's future European girlfriend I think. Tell her to eat lots of Wotsits!

Please continue to pray for Max and for all the kids here at the hospital and for all the kids fighting for their lives. It really makes a huge difference.
All the best,
--mike

Day +36

2003-09-19T13:10:00.000-05:00

WBC 2.2

Hey Max Fans!

Friday was mostly a day of small progress on the vent. Sometime during Thursday night Max's saturations began to improve and they were able to finally turn the knobs down a little more aggressively and the talk of extubation became a little more serious. So now it seems sooner rather than later again, but no real timetable yet.

Other issues: GVH of skin looks amazingly better, GVH of liver has improved again, but it's really hard to tell if the gastrointestinal GVH has been responding. He is still very uncomfortable when he stools and when he does, it is quite bloody. In addition he's had some blood in his OG tube (tube up from his stomach) and in his ET tube (breathing tube) so they are going to continue to watch all of this. There could be many reasons for this, but they are hoping for a more obvious explanation (continued effects of GVHD) rather than a rarer one (internal bleeding, ulcer, etc.) As Uncle Marko would say, expect the horse, not the zebra.

Elsewhere in the extended world of Max, the Generosity Express (choo! choo!) has apparently picked up steam. The good people of the school district of Gorham, NH - high school teachers, elementary school teachers, superintendent, and others - collected money together for Max and presented it to my parents today. First they were incredibly touched by the gesture, then they were truly blown away by the generosity. When I talked to them today, they were so moved and so happy to be able to stretch this aid across the country to us. Many of these people have become Max fans because of their relationship to my parents and many even still remember me as a student (be nice to your teachers!) but many of these people are not close to any of us but have been touched by Max's story. To all of you: THANK YOU SO MUCH!

The night before, we found out that a women's group in Park Ridge (IL) has chosen Max for an annual fundraiser. Mary Beth Micucci submitted Max's name. I don't have all the details here at the hospital, but again, THANK YOU so much for doing this, we had no idea Max would be able to be a recipient for this kind of help. I'm sure Margaret can explain more in tomorrow's update.

We have received support in so many different ways, both big and small. But there are still many of you who feel like you are not doing enough. Believe us when we tell you that we appreciate even the smallest gestures. Lately we've seen improvement in Max and we know he couldn't have done it without your prayers and kind words. As for us, we've received so many little care packages (especially so many sweet treats) that we really feel so much love and care around us. It's odd to say this under the circumstances, but even now we feel very lucky.

We are blessed,
--mike

Day +35

2003-09-18T13:11:00.000-05:00

WBC 2.9

We have some good news today. The doctor came in and told us the results of Max's RFLP test from 9/4 - he is 100% engrafted! We knew he was engrafting because of his enzyme level and because of his GVH, but we did not know how much until today. What a blessing! When Mike told Grace that Max has all new blood now Grace said, "Hooray! Now we can all be a family again!"

There is not much more news to report. Besides a few moments of agitation and nose rubbing, Max has been stable and restful all day. His blood pressure has been good since they increased one of his medications. We kind of feel like we are in a holding pattern, but we rather have this than the wrong kind of excitement.

Auntie Bethie, Uncle Vince and Cousin Vinny arrive tomorrow and will be staying through the weekend. They will take Grannie back to Chicago when they leave. Grace is very excited to see her cousin Babarino (Vinny) and so am I.

Thanks for all of your prayers. Please keep praying for Max and all the other children up here. Max is one of 3 transplant patients in ICU.

-Margaret

Day +34

2003-09-17T13:12:00.000-05:00

WBC 1.6

It's been kind of a slow day so I thought I'd write the update a little early. Also, we've seen just about all the doctors we're going to see, so I've got all the news that's fit to print.

Max is finished with this round of ATG. This rabbit ATG will still be hopping around in his system for a couple more weeks, but the six-hour infusions are done. Hopefully this medicine in him is less reactive overall and if Max can move again towards extubation it will not have an effect. As for extubation itself, that seems a ways away. His lungs continue to have pockets of collapse and he's not totally opened up yet. Today they're going to start something called "Muco-mist" which is some sort of nebulized treatment that helps open up the lungs. Apparently it smells like rotten eggs so that's something to look forward to.

The doctors have done much to calm our nerves in the last couple of days. We've been told (in the face of much incredulity) that there is nothing extraordinarily frightening about Max's condition. When I brought up the fact that it might be because they've seen hundreds of transplant kids and scores of Hurler kids, the doctor told me again that there is nothing that's making his heart race. I said, well, everything is making my heart race and he said, of course, if it was his kid he'd be doing the same thing.

That said, Max needs to make a lot of progress. He needs to beat GVHD (so far he is starting to respond to the ATG). He needs to get his lungs clear and be extubated. He needs to grow cells (he's going back on the growth factor for a day to help the neutrophils grow). That's a lot of stuff! But hopefully Max will just continue to mosey along down the path to better health one day at a time.

One important thing I didn't really make clear a few days ago: as scared as we were and as hard as it was to watch Max's chest work so hard . . . he never gave up. He was keeping his saturations in the low 90s even though he had to be so uncomfortable. What an inspiration! We wish we had his strength.

Thanks for all the support and birthday wishes,

--mike

day +33

2003-09-16T13:12:00.000-05:00

WBC 2.2

Let me start by thanking everyone who worked so hard to give me such a great birthday. I woke up at the hospital feeling very depressed and not at all wanting to celebrate. But then I received a call from a very excited Grace. She was so thrilled that it was my birthday and it made me feel like celebrating some. I received so many nice emails, cards and packages and I was so touched. Mike and I were able to go on a date too. Max had his primary nurse Annmarie so we knew he was in very good hands. And the BMT fellow offered to stick around while we were out to make us feel more comfortable. The staff here is so wonderful. They signed a birthday card for me that Michael bought and everyone wished me a happy birthday. Now for the important stuff...

Max had a pretty quiet day today. He is no longer on the paralytic, but isn't very active. He rubs his eyes and nose sometimes but that is it. His tummy is pretty swollen today so they ordered an ultrasound of the liver, stomach, kidneys and bladder. The doctor came to talk to me a little while ago and said none of the results were surprising. He has some fluid in his abdomen because his veins are a bit leaky, which is pretty normal. He has what appears to be a small gall stone, but it may be some "sludge" caused by a lack of eating. His liver and kidneys looked okay. The vein leading to the spleen has some retrograde flow, and they are not sure why that is happening.

His body temperature has been low for the past few days and they cultured his blood to check for infection. Sometimes kids go the other direction when they have an infection and get cold instead of hot. He finished his last dose of rabbit ATG today! Hopefully it will take care of his GVH. His skin is looking better and his liver seems to be responding a little. Now only if his gut would too I am sure he would feel much better.

Thanks again and again for all the wonderful birthday wishes. I could not have asked for a better birthday under the circumstances.

-Margaret

Day +32

2003-09-15T13:13:00.000-05:00

WBC 3.6

Happy Birthday Margaret!!!

The doctors just left and overall we were a little encouraged. They are looking at the reintubation as a bridge to get him over the troubles of GVH. So far his skin and liver have responded to the ATG and they expect his GI to follow.

What's most disappointing is that they put Max on a paralytic and he is totally immobile. They also put a peripheral IV on the top of his head because they needed one more place to get medicine. Now he can't wear his Superman hat. We've come to learn that Max's asthma is a little bit of a curveball for the doctors here. They've seen a lot of Hurler patients and all are unique, but Max's asthma seems to be more a problem than most. Ultimately we're back on the vent because his asthma was aggravated too much by either the GVH he's suffering from or from the medicine being used to treat it. Either way, rather than fight these battles simultaneously, they're fighting them sequentially and the GVH is being attacked first.

Also, today is Margaret's birthday. I'm not going to say how old she is, I'll just say that it rhymes with "dirty". She's a little down today (she had hoped Max would be extubated for her birthday, and he was . . . but . . .) and whether she likes it or not, we're going to do our best to give her the best birthday possible. With Max down and out, it's up to the rest of us to help her enjoy her day as much as possible. I couldn't ask for a better wife or friend, and to see her with Max is to see what love really is.

Thanks for all kind words and support, it's meant so much. It's nice to know that Max (and us!) have so many cheerleaders.

--mike

Day +31

2003-09-14T13:17:00.000-05:00

After working very hard to breathe for 2 days Max has been reintubated. The doctors tried many things to try and stop his wheezing. The BMT and pulmonary doctors were becoming increasingly worried that Max was working too hard and was going to tire and end up in an emergency situation. The ICU doctor was willing to give him more time to see if the meds would take effect, but finally the decision was made and the tube went in.

So many things have been tried over the past few days I am not sure if I can relate all of them. The most likely culprit for the wheezing is the ATG he received for his GVH. They have not yet started the rabbit ATG today because his breathing never stabilized enough to give it. Now that he is on the vent he will catch up on his meds. They are running into some medicine compatibility problems again because of all of the new medications, and hopefully they will be able to work those out without having to give him another line.

The pulmonary and ICU docs mentioned that his current lung issues might be caused by GVH in the lung, but the BMT docs do not believe this to be the case right now. His skin, liver and gut seem to have responded a little to the creams, steroids and day of horse ATG he received. We hope and pray that the new ATG will get things under control.

The steroids elevated his glucose level so now he is on insulin. He has been given a lot of sedation and a paralytic so that he can rest. The reintubation itself went smoothly.

I wish I could paint a better picture of what things are like here so those of you who are far from us could understand. I don't really think it is possible to put into words the stress and heartache we feel. Things change from moment to moment and just when you begin to feel optimistic things change again. I know no one wants to hear this but it is truly hard to feel hopeful at times.

Please continue to pray for Max as we know you all will. We love and miss our son so very much.

-Margaret

Day +30

2003-09-13T13:17:00.000-05:00

WBC 5.0

What a long, tough, day. Margaret was up most of the night trying to calm Max and keep him from getting too agitated. He had been having a lot of difficulty breathing in a relaxed state and his oxygen saturation was dropping frequently. By the morning the difficulty continued and she called for me to come over because she was so tired. Soon after I arrived Max began to have quite a bit of respiratory distress and things got pretty scary. Two ICU fellows, the BMT fellow and attending, and a respiratory therapist were soon in the room trying to figure out what to do. They decided to treat Max as if he was having a massive asthma attack.

First they suggested putting Max back on Bi-Pap and they even tried it but Max just fought it off. He was just too uncomfortable and the ICU docs felt that they really couldn't give him any more sedation. So, Max stayed on a basic mask. But they decided to put him on a continuous stream of Albuterol with 100% oxygen flowing in as well. As far as the breathing treatments, there's nowhere else to go. He can't get anymore oxygen and we can't call for a breathing treatment because he's on a constant one.

In addition they more than doubled his steroids hoping to open up his airways and they are changing from ATG (his medicine for Graft vs. Host) that was made inside a horse to ATG from a rabbit. This is to try and see if Max's body reacts differently to a different form of ATG.

So, where are we now? It's 11 o'clock and Max's saturations are finally a little more stable. But not much. His chest and belly are still heaving and he looks like he is working too hard. If he's having an asthma attack, he's been having it for 15 hours so far and one wonders how long this can last. Hopefully he will remain peaceful and acclimate to this situation. If so they can think about slowly weaning him down.

We are beginning to wonder how many times Max is going to pick himself up when it seems he is destined to be knocked down all the time. Finding out he had enzymes and getting extubated were great news. But the enzymes won't mean a thing if they don't get his GVH under control. And being extubated so far hasn't been wonderful. I've seen Max in excruciating pain with constant watery diarrhea, I've seen him feverish and throwing up everything that goes in him, I've seen him turn yellow and sickly from liver difficulties, I've seen him gain and lose weight from fluid imbalances, and I've seen him unable to maintain basic levels of blood pressure. And I've seen all of this in the last 2 weeks. But nothing compares to seeing your child struggle to breathe, the most basic and necessary of all functions. From across the room I can hear him wheeze now.

Let's be absolutely clear: Max has three huge problems:
He has an ongoing strep-like infection called VRE which is very difficult to get under control when immunosuppressed.

He has moderate GVH that has been tested positive in his gastrointestinal system but clearly is all over his skin and is probably affecting his liver.
Max has serious airway issues requiring just about everything but being put on a respirator (again). He is very sick. He is very uncomfortable. He still requires 24-hour ICU care.
I should be up most of the night, if there is any good news to report in the morning I will. Otherwise, it is very busy in the room these days, so updates may have to come a little slower. Then again it is Saturday night so we know our readership is down anyway.
---mike

Day +29

2003-09-12T13:18:00.001-05:00

WBC 5.7

Max has had quite a day. He was extubated at around 12 pm. He has been on an oxygen mask and until late this afternoon was saturating well. His sats dropped suddenly into the 80s. ICU came down and thought his airway was reacting. It is fairly common for kids to have some trouble during the first 24 hours after extubation. His asthma makes things worse. Please pray that Max can make it through this. They have brought the dreaded c-pap machine in here just in case and another chest x-ray was done. He has a new mask on now that delivers humidity along with the oxygen. As of 11:30 tonight he is saturating well when he is calm, but he dips quite a bit when he is upset.

HIs GVHD is described as moderate (the stages are mild, moderate, severe). He is really uncomfortable when he poops. His stools are much bloodier than ever before and his skin is really red. They are attributing the liver changes to the GVHD as well. He has been on steroids for a while so they added ATG to fight the GVH. If you recall, ATG was one of his chemo drugs. He had a hard time with this drug. It is an immunosuppresant. They are hoping it will suppress the lyphocytes (sp?), the part of the white blood cells that cause GVH, but not the neutrophils.

His blood pressure is also way up and they are trying hard to control it. They just switched one of his bp meds because the one he was on can contribute to reactive airway problems.

Getting off the vent was a very big step but he is far from being out of the woods breathing wise. It is extremely difficult to see him so uncomfortable. They are trying to ease his pain with meds that will not slow his breathing.

PRAY HARD PLEASE!

-Margaret

_____________________________________

WBC 5.7

Hello again, what you read yesterday was a very exciting update. But I asked us all not to get ahead of ourselves and here' s why: Max has Grade 2 to 3 gastrointestinal GVH (graft vs. host disease). This means that yes indeed, donor cells are growing inside Max. It also means that they don't like their new home. The effects of this GVH so far had been all in the form of diarrhea and abdominal pain. But now Max's skin rash (skin GVH) is worsening too. Also, his bilirubin is elevated which could either be a drug reaction or the sign of some stress on his liver. So while the message below is pretty positive, we didn't have the latest news. The doctors will explain things to us soon and we will update again tonight. Also, the WBC drop (from 8.9!) is hopefully just a result of stopping a growth hormone.

More to come,
Mike

Day +28

2003-09-11T13:20:00.000-05:00

WBC 8.9
ANC 5.5

Max has enzymes! We came here to Minnesota because Max needed them and they are here! The transplanted cells have grown enough inside him to give him an enzyme level of 46. This is up from zero. What does this mean? Well, probably it means that the donor cells are growing inside Max. The engraftment results are still not in so we don't know how much Max has engrafted. We also don't know what to expect about the enzyme level. We know that all numbers can go up and down so we hope that with a number like 46 we can go either way. But this IS good news, and we are definitely excited about it. We just can't get ahead of ourselves when there is such a long way to go.

Max started his day by having a flexible camera inserted into his buttski and a small biopsy was done from the inside. This was done to test for gastrointestinal GVH, but the results didn't come back today. They should be in tomorrow. The GI doctor thought that Max's insides looked fairly good, but we won't know for sure for a little while. His stools continue to look awful, and worse. Watery, dark, lots of mucous-- if we had to guess, it would be GVH, but we hope not. If it is, steroids will begin immediately.

At around 1 o'clock they noticed Max's hemoglobin (red blood cells) had dropped by 3 points. This seemed to be alarming to the nurses and doctors. It didn't appear to be procedural because the amount of blood lost from a small biopsy shouldn't account for that kind of loss. His abdomen was x-rayed (nothing remarkable), his heart rate and BP remained stable, and his lungs continue to sound clear. He was given more hemoglobin and they are watching it tonight. So, another mystery. The fellow said today that "Max has obviously NOT read the medical books" because he continues to behave in ways they are not expecting. Hopefully there will be an explanation for this tomorrow.

As for being on the vent: The ICU doctor felt that Max is getting very close to being able to be extubated. He continues to do well on the pressure support trials. For periods of time, he is breathing without the vent, only with a little extra oxygen. He is our little champ and I can't wait until I can hear his coughs and cries again. When he's mad he's just so silent, and that's twice as sad as seeing and hearing it for real.

Lots of reasons to feel good today. Thanks for everyone's support. Please continue to visit the Hurler families on our site, they have emailed us and thanked us for your support. Keep it up!

Gotta go, Max just dropped a diaper bomb on the nurse,

Mike

Day +27

2003-09-10T13:23:00.000-05:00

WBC 7.1
ANC 6.3

I’ve added a new feature to our update – the absolute neutrophil count, or ANC for short. The neutrophils are a part of the WBC that fight infection. Kids get a "hall pass" when their ANC is greater than .5 for three consecutive days. Why am I mentioning this now? Well, I realized today that if Max wasn't on the vent he'd be able to venture out into the hallway.

Max had two very significant events today. He had two pressure support trials, where they turn down the vent and see how he does breathing on his own. He is getting them once a shift and they last 2 hours. Once they are done they check his blood gases. He did very well with his trial this afternoon and is finishing up another right now. So far so good, but we won't have the blood gas back for a little while. He should have another trial during the night. If he continues to do well with the trials then they will keep extending the length of them. The ICU fellow told me that if he is handling 4 hour trials well then it is a sign he is ready to come off the vent. His chest x-ray showed improvement in the left ventricle as well. Every four hours he gets his albuterol inhaler and he is suctioned and vibrated.

Unfortunately he spiked a temp this evening of 100.8. He received Tylenol and his blood was sent to the lab for cultures. We joked that the lab is going to have to open up a separate room for all of the cultures they have taken from Max.

Tomorrow the GI team will be performing a scope and biopsy of Max's intestine to check for GVHD. His diarrhea continues and he still has a rash on his legs and arms. The rash has been around for a week now and at times it seems to fade or flare up. The biopsy will tell us more. If it is GVHD they will treat it with steroids and hopefully it will respond.

As you probably noticed his counts are sky rocketing, so they took Max off his G-CSF (growth hormone). We hope and pray that they are donor cells growing not Max's cells rebounding after the sepsis.

Thanks for your continued support. Please pray for Max's Hurler friend Sophie. She is a beautiful baby girl in England who got her transplant today. Her link is http://www.melroseroad.co.uk/ if you would like to leave a message in her guest book.

-Margaret

Day +26

2003-09-09T13:27:00.001-05:00

WBC 3.8

Today Margaret, Grannie & Grace celebrated girls day (or "Girl Scout Day", Troop #99 as Grace called it) with a trip out for haircuts and lunch while the boys held down the fort at the hospital. Max's big event was another bronchoscopy. His lower left lung didn't show much improvement since yesterday so they decided to take a look around.

I got to stay in the room, and it was pretty cool to see Max from the inside out. A bronchoscopy involves sticking a tiny camera down his breathing tube. The fellow operated the camera and the doctor was there to guide him if he made any wrong turns. It was kind of like sitting in the back seat for many of the trips to New Jersey with my parents. But I digress. Once inside they washed out the affected area and also took note of the general health of the lung. You could see some of the mucus and blood and some of it came all the way out and went in a jar for testing. We should know some more about what's going on tomorrow and in the coming days. Overall, the doctor was surprised to see a healthier lung than she expected. As for extubation, his lung needs to continue to improve and the x-rays need to remain clear before they can challenge him again but that is looking like it will be in the coming days.

Max is still unable to talk to us and overall is still very much "out of it." In addition he is molting. I don't know what kind of creature is going to come out of his skin but I'll bet it's an angry one from being kept down for so long. He also is a little rashy on his legs but so far there isn't need to biopsy for GVH. His favorite activity is to rub his forehead and nose with the back of his hand. This seems like very deliberate behavior, but he doesn't really wake up for it. He just rubs in his sleep. It's hard to be patient with our patient at this point, we want that tube out, but he needs it in order to heal up. He is, without a doubt, going in the right direction. Not necessarily in a straight line, but in the right direction. The best evidence of that is that his counts continue to climb.

Thanks for all the support on the website, your notes to us are our little buoys to keep us afloat. Please continue to pray for Max and for us and for all the families of sick children.

Good night,

--mike

Day +25

2003-09-08T13:28:00.000-05:00

WBC 2.0

Go white blood cells! Two steps forward, two steps back. That is the way it has always been for Mighty Max. Yesterday they lowered Max's vent settings and spoke of extubating him today or tomorrow. The BMT resident also scheduled a pressure support trial (which is a test to see if he is ready to come off the vent), which got our hopes up. But then Max's chest x-ray from this morning showed that his lower left lung had filled with some fluid and partially collapsed. Needless to say, the pressure test and talks of extubation were put on hold. We were so disappointed. They raised the vent settings and are suctioning his lungs a lot. They took a sample of the fluid to test it.

The amount of fluid from Max’s og tube (similar to the ng tube he had as a preemie) pretty much stopped today. This tube pulls the fluid from his tummy. It had been pulling a lot of fluid prior to today. They replaced his tube in case that was the problem, and it seems to be pulling a little more out. On the flip side, he began stooling a lot today. I am not sure if the two are related or not. There has been a little blood in both types of output.

Max is shedding his skin like crazy. The poor boy looks as if he has spent days and days in a tanning booth. The doctors attribute this to one of his chemo drugs, Busulfan.

After consulting with the infectious disease doctors, they put Max on a new antibiotic called Synercid to fight the VRE. We are anxious to discuss this with the BMT attending doctor, as we were told the WBC could take a hit with this drug. We continue to wear gowns and gloves in the room. Grace came to see Max today and looked very cute in her enormous gown and floppy purple gloves.

Speaking of Grace, she has had it with Max being in the hospital. Yesterday she told me that she wanted to go back to Illinois so we could all be a family again : ( She is surrounded by sick kids at RMH, and she asked me what type of disease she had. We wonder what is going on in her head throughout all of this. Today she played with a Child Life Specialist and they have plans to meet again tomorrow. They do some medical play as well as other things. Grace really seems to enjoy it. Maybe it will help her cope with things more. Grannie, Grace and I are going to have a “ladies day” tomorrow.

Aunt Dana left early this morning. She and Uncle Geoff will be traveling to London for Geoff’s graduation from business school. Congrats Geoff and congrats to Grace’s friend and Max’s BMT neighbor Kendall. Her parents found out today that she is 100% engrafted. She is all donor cells!

Please continue to pray for Max and his BMT and Hurler friends. It is so hard to see him like this. What I wouldn’t give just to hold him again, or for him to smile at me. Hug your kids!

-Margaret

Day +24

2003-09-07T13:29:00.000-05:00

WBC 0.9

Today was another day of baby steps forward regarding the ventilator. Small adjustments were made to decrease the number of breaths the machine was making for Max and the overall oxygen percentage remained low. The also lowered the sedation a little bit so Max was able to open his eyes a few times and squeeze our fingers a few times.

Overall he is continuing to better live with the effects of sepsis. It’s far from gone, but he is doing okay and it is described as being “under better control.” He is regulating his blood pressure very well and hasn’t had any high fevers.

He does, however, have a new cause for concern. He has a bacterial infection that is not responding to Vancomycin (one of the many broad spectrum antibiotics he is on) and is therefore known as VRE Vancomycin Resistant Enterococci. This is most probably an infection that he got in the hospital. We are now in “contact isolation” which means that we have to wear full-body gowns and gloves and so does everyone who comes in the room. The danger is not to Max, he already has it, but it’s to keep it from spreading further out to the other kids. But who kept Max from getting it? We’ll never know. Since he is improving overall, they are still going to keep him on the same regimen because the “Vanco” may be helping to fight other bad things in and around Max. This new infection may or may not have had an effect on the original sepsis, but hopefully this is something that they can get under control until Max’s immune system can get stronger. As long as it doesn’t grow too much and spread, he’ll be OK. We will learn a lot more about this tomorrow.

We were feeling more optimistic today and took advantage of our help to have a little lunch date with each other. Grannie stayed with Max and Auntie Dana went on a guided tour of Ronald McDonald House with Grace so we could have a little pasta from Maggiano’s in our room. It’s the first alone time we’ve had in about a month and it was nice to say the least. We have so little time for each other that a little reheated pasta goes a long way. Thank you Dana for helping us this weekend, and thanks for bringing the angel hair up from Chicago!

We haven’t talked to Grace’s friend Kendall’s parents recently but they were on schedule to get out very soon, maybe even by the time most of you read this. Congratulations Kendall! Also, Aaron Athy, is in a hospital now fighting his own little bugs and we want to say thanks to Aaron’s Mom for encouraging so much support to come our way and we hope you know it’s coming back from us just as strong.

Good night,

Mike

Day +23

2003-09-06T13:30:00.000-05:00

WBC 0.7

Max had another uneventful day today. His WBC is up, which is good. The number they watch for his kidney function improved slightly. His chest x-ray showed a slight return of the mucus in his lung but it was still considered to be the consequences of the first wave of infection and nothing too serious. Dr. Milla will reassess things in the morning and may do another bronchoscopy. His lungs were suctioned many times today. Dr. Sweeney (unrelated to my mom!), the ICU doc who intubated Max just came in and lowered the vent settings slightly. Max also (mostly because of hospital laundry issues) was back in some regular clothes and even wore his superman hat.

Max had many visitors today. Grannie is still here and Auntie Dana came up for the weekend. Dana brought some food from my favorite restaurant back home - what a treat! Grampa J also stopped by as part of his vacation in Wisconsin, and my Aunt Eileen and cousin Jean made a surprise drive north from Chicago with gift bags for all the kids at the RMH and a special bag for Grace. I haven't seen either of them since our wedding 7 1/2 years ago (yes, we've been married that long), so it was extraordinary that they made the trip up to see us. With Max in still such critical condition, visits were kept short at the hospital but time was spent catching up back at Ronnie McD's. What can we say about such a burst of personal attention when we needed it most? It means so much that neither miles nor time can prevent the good intentions of family.

Mike, Dana, & Grace spent the day at the Mall of America and Grace made it on the big ferris wheel for the first time. She also got a balloon and a special squishy yo-yo just like her Ronald McDonald friend Rowan who is from Egypt. Grace loved all the presents she got from her family members that she had never met and she even took the time to tell Mike and Dana a story using five flower erasers as pages. Apparently there was a little girl who wanted to go in the forest but had to watch out for a bad guy named "Rocky Knockdown". Mike said that it was very funny. She is so creative. She immediately used the art supplies to make some cards for her Illinois friends and cousins.

I am off to bed. Thanks again and again for your prayers - keep them coming!

-Margaret