Friday, November 28, 2003

Thanksgiving

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

Wednesday, November 26, 2003

Farewell Sweet Prince

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

Tuesday, November 25, 2003

Day +103

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

Monday, November 24, 2003

Day +102

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

Sunday, November 23, 2003

Day +101

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

Friday, November 21, 2003

Day +99

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

Thursday, November 20, 2003

Day +98

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

Wednesday, November 19, 2003

Day +97

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

Tuesday, November 18, 2003

Day +96

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

Monday, November 17, 2003

Day +95

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

Sunday, November 16, 2003

Day +94

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

Friday, November 14, 2003

Day +92 - Let the Juicing Begin

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

Thursday, November 13, 2003

Day +91

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

Wednesday, November 12, 2003

Day +90

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

Tuesday, November 11, 2003

Day +89

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

Monday, November 10, 2003

Day +88

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

Friday, November 7, 2003

Day +85

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.

Wednesday, November 5, 2003

Day +83

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

Tuesday, November 4, 2003

Day +82

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

Monday, November 3, 2003

Day +81

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

Saturday, November 1, 2003

Day +79

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