Day +16, +17

Day +16
evening update

Max is in trouble. He is fighting very hard against this infection, but his blood pressure keeps dropping and the ICU doctor was just in here. They are trying lots of things to raise it up, and it is finally going up a bit. If this doesn't work or he is struggling more to breath he will be intubated. The chances of this are high. he is on oxygen now and is still having some trouble.

Sunday, August 31
Day +17

It's about 2 o'clock out here at the hospital. Max is still in a lot of trouble. We now have a full-time nurse, and that is so helpful. The discussion right now is about just how many meds he's getting. It's so many that if a couple more have to be done simultaneously, he may need to get another line put in. It might be put into his leg or arm. Hopefully not. His breathing is still pretty good, but the mention of intubation is constant. He is being observed by an ICU doctor as well and that is who is working on getting his blood pressure up. His condition is described as "very guarded"

He is very sick. Nothing has come back positive as an explanation for anything. The only things left would be things that take a really long time to grow. Hopefully one of the meds he is on will help him before they even know what it is.

Bethie and Grampa J are at the RMH with Grace and Margaret (finally getting some sleep). Grannie S is here with me. It's really nice to have help at this difficult time. Margaret and I will both be able to spend some time at his bedside this evening and that will be the first time in a while that we can look after our boy together.

Keep rooting for our guy!

--mike

Day +16

WBC 2.8

Look at that WBC! That's the best news of the day. The rest of the report, however, is not as good. They still haven't identified what is making Max feel so yucky. Overall, he's lost about a kilo (2.2 lbs.) has almost no energy, and is pooping constantly. The vomiting has slowed down (only two times today) but still contains blood flecks and we've seen them in his stool as well.

The best explanations for this are: 1. Gastrointestinal graft vs. host disease. 2. Late reaction to chemo 3. A virus.

The first option is possible considering Max seems to be engrafting. But GVH in the gastrointestinal area can be difficult to identify and treat so we are hoping this is not the case.

Most of the nurses around here find the idea of a sudden reaction to chemo to be a little unlikely.

Some sort of virus in the gut is the best explanation but he has tested negative for most of the obvious ones. His stool has been sent off for cultures two different times today.

While he showed some energy overnight and in the morning, he has been lethargic or asleep all day. Maybe his days and nights are mixed up and he will have me up all night, but if so, I'll just be glad to see my guy with a little energy. They've decided to switch some of his maintenance fluids to have less potassium and glucose and they've decided to hook him up to oxygen saturation and heart rate monitors all night.

Max looks and feels really sick. The nurses who have had Max many times have never seen him this bad. He has virtually no personality and does not seem comfortable. He's on morphine to try to offer some comfort but that makes him sleepy too.

Please continue to root for Max to fight off this virus or whatever he's got and to get back to his old self. Special thanks to Margaret for staying up all night with him and for taking such good care during the wee hours. Thanks to Grace for napping today and for giving Mom a break.

Go Max! Grow Cells Grow!

Mike

Addendum as of Sunday, 8/31 at 7:14 A.M.

Dear Max's holiday weekend fans,

This morning I was told that Max's counts are 0.5. Yikes. As quickly and as sharply as they rose, they have fallen back down. He is also running a fever and he's on Tylenol. Today will probably lead to more questions than answers. Max has not been himself for 3 days now. Not at any point last night did he have any real "awake" periods. He's sleeping most of the time, and when he wakes he just grabs his ankles and poops. He's best described as a shell of himself. This is not the way we want to see our son. He's really sick and trying to fight off something. Any advice from the Hurler community would be welcome at this time.

More scared than ever (but not wanting to be scary),

Mike

Day +15

WBC 1.4

Our poor Max is not doing well today. He has been vomiting every 2 hours or so since yesterday. He also has bad diarrhea. He lost 2 lb over 24 hours and he is slightly dehydrated. They have increased his fluids, added another anti-nausea med, and given him morphine and ativan for the pain and discomfort. There are flecks of blood in his vomit, probably caused by broken blood vessels. A CT scan of the head was ordered and then cancelled due to the risks of sedation with Max. There are 5 possible reasons for all of this, some much scarier than others:

1. Effects of chemo - Although it is a bit late in the game for this every kid reacts differently.

2. Reaction to his new blood pressure med - They changed his med a few days ago because of the rash (which by the way looks so much better), and he may be reacting to the new med. They have discontinued it so they can rule it out.

3. Virus - They are checking his stools for this.

4. Hydrocephalus - Dr. Charnas, Max's neurologist just ruled this out. If it was hydrocephalus we wouldn't see the messy diapers along with the vomiting, and the vomiting would be different. His fontanelle feels softer today than yesterday.

5. Dreaded Graft vs. Host Disease (GVH or GVHD) - We are looking for signs of this. There would be more blood in his vomit and vomit in the stools as well. They are monitoring his bilirubin for his liver as well.

We are very relieved to hear Dr. Charnas' opinion and pray that this is not GVH, but rather the chemo. Max looks so sick today. He can barely sit up and has had trouble sleeping. He is finally sleeping soundly so I am off to sleep myself. I am hoping he wakes up in the middle of the night feeling much better and ready to play.

-Margaret

Day +14

WBC holding at .7

All day Max was a little crab. He just couldn't get comfortable. And on the advice of the resident I tried to increase his amount of formula vs. apple juice. It's just so much easier to give Max apple juice because it's in the room and ready to go. Formula is in the fridge and we have to warm it up in the microwave out in the kitchen area. But since he's been doing so well drinking, it made sense to give him more nutrition and calories via formula. Maybe this was a good idea, but at the end of the day, after his belly was looking enormous, he puked like he's never puked before.

And then he felt a little better. After some anti-nausea meds he napped again and woke up at the end of the night a little more like his old self.

Speaking of his old self, his bad butt is back. So we're back to the rubber cement product, ILEX, and hopefully that will help. The good news is that his count is still a good number and his rash is much much better. If his tummy and butt can just feel a little better, he'll be the champ again that we know he is.

As for G, well she and I attended our first event in the Metrodome. We went to the Minnesota Viking preseason game against the Cardinals. We took a city bus to the game and went right to our seats. They were pretty high up in the upper deck but the view was pretty good. Grace was into the game, and enjoyed the scoring because that meant we got to try to sing the Vikings song (who knew) which begins with "Skol, Vikings, Let's Win This Game" Ahh these Minnesotans love their heritage. The mascot was a treat too, his name is Ragnar, and according to his website he is the most recognized mascot in the world. Of course, that could be because he's pretty much the only human mascot in professional sports. Anyway for a treat, check out his story:

http://www.ragnartheviking.com/about.htm

Grace and I shared a bottle of Coke and she was content to just sit in the seats. I asked her many times if she wanted to get a snack but she always said no. She was very well behaved. A lady next to us gave her a purple bead necklace and Grace was happy. The game was slow paced and unmemorable except for former Northwestern running back Damian Anderson running for a long touchdown for the Cardinals. During one long injury time out the TV screens kept showing different couples framed by hearts. This was called the "Kiss Cam" and the idea is that when you see yourself on TV you should kiss. The crowd seemed to really enjoy this. One time it stopped on a couple and the woman hid her face and the man was trying to shake his head to get the camera to go on someone else. The many possible reasons for their behavior were fun to consider.

Just before halftime Grace asked me if the game was over. I said no, and is this a good time to get a snack. She said yes and she wanted to go home so I said OK. As we got out to the food area, halftime arrived and a dome full of people surrounded us. Grace looked like she had to go the bathroom so we went in the men's room. I guess it's been awhile, because I hadn't seen the classic stadium "urine trough" in a long time. I told Grace it was too dirty and we got out of there. With a bucket of popcorn in hand we headed for the exit. Grace opened a door and we were in a room that led to the outside. She tried and tried to press a button to open the door but it never opened. So I pushed the door and we headed out. What we forgot to realize is that the entire roof of the Metrodome is supported by forced air. So the exits open an air lock. As we moved outward the air began to push us out and Grace almost got knocked over. Instead all her hair blew forward over her face and the top third of her popcorn just blew out of the container into the crowd. Grace just lost it. She's been so emotional and she just got so mad. "That's not nice! I want ALL the popcorn!" Tears were streaming, people were feeling awful for her, and we just sulked our way out. Finally we found a taxi and we headed home. In the cab she said she had a great time at the game but a bad time LEAVING the game. When I told her how she looked, she stepped back and said, "Wow, Dad, that was funny." Now I'm back at the hospital for what I hope is a peaceful night.

We are doing our best to help our kids while we are all away from home. We will have many memories of our time here. But the luau the other night and the unsealed air lock tonight will be two of the best.

Thanks for your support, especially all of you who take the time to write in the guestbook (our lifeline),

--Mike

addendum from Mike 8/29 6:08 A.M:

Since I returned to the hospital at around 9:30p.m. Max has been throwing up all night. But that's not all. Let's just say that it's been coming out both ends. The want a CT Scan in the morning to look at his brain. Everyone feels that the most likely explanation for this is chemo. It's strange to us that Max's tummy would start to go bad on day +14, but we're still in that window of when all the bad stuff should happen. They want the CT Scan to make sure that his brain is still doing OK as far as the hydrocephalus is concerned. Unfortunately non-stop vomiting is also a sign of high pressure build-up in the brain. Please pray for Max that his stomach gets more settled and that his brain is OK.

And now the big news. The nurse just came in and said, "I know it's been a rough night, but his counts are really good: his white blood count is 1.4" Grow cells grow!!!!!

--mike

Day +13

WBC holding at .7

Hello Max Fans,

Today was pretty uneventful (we like it like that) so I will keep it short. Max's rash is looking better. His face is not as red, though his legs look a tad worse. They really think it was the Hydralazine, one of his blood pressure meds. He was kind of crabby and tired and I really think his teeth are bothering him. He has been biting everything.

Max had PT and OT today and was crabby for both. The highlight of the day was when the PT suggested we allow him to walk to the bath (holding my hands of course). It never occurred to me to try this. For one, the floor is a source of germs and you also need help moving the IV pole. Since he was heading to the tub and his feet could be washed immediately and the PT was managing his IV's we were able to do it. As many relatives can tell you, Max loves to walk around the house holding on to someone's hands. He did well, although he was not as fast and stable as he used to be.

Mike got free Vikings tix from RMH and is going to attempt to take Grace tomorrow night. It will be nice for them to venture out of the RMH/hospital area. We will let you know how that goes.

Please keep praying that Max's counts continue to grow peacefully.

Love,
Margaret

Day +12

Compared to yesterday, today was pretty calm for Max. He was pretty tired and a bit crabby. He has had a red rash on his face for the past few days and it is getting worse. It is now on his arms, back and tummy. His face is as red as a tomato. They are not sure what the cause is. It can be a medication, a combination of medications, or Graft vs. Host. Today they changed one of his blood pressure medications to see if that helps. They have also started him on 2 different creams in case it is GVH. He is losing his eyebrows and I think his beautiful long eyelashes too. It makes him look a bit sicker. His WBC was up to .7 today (up from .3 yesterday) which was good. They need to see consistent growth before anyone gets excited.

Grace and I had quite a day today. We have been worried about her lately. Most of the kids around here are older than her. It has been an adjustment. Sometimes they do things that she is too young to do or shouldn't do, and it has been hard explaining this to her. Also, older kids don't always want to play with someone so much younger, and it absolutely breaks our hearts when she asks if she can play and they are not interested in playing with her. Most of the time they are willing to let her join in, but sometimes Mike and I have to ask on behalf of Grace. She has been picking up on the intense stress around here and has been crying a lot.

Today was much better, and Grace attended the last session of "Camp Wanna Read A Book", a summer book club at RMH run by a retired teacher and her husband. They went all out, pitching a tent and cooking lunch outside on propane stoves. We also made paper snakes and cookie sandwiches.

After a late nap Grace and I attended a Luau at RMH. It was a huge event, much bigger than I had anticipated. In addition to a big meal and extensive decorations, they had live music, dancing, caricature artists, and fun outfits for the kids. Grace had on a grass skirt, lei, flamingo hat, flower tattoo and blow up guitar. She, of course, stood right in front of the musicians and danced along to the music.

After all of that we went to the hospital to see Mike and Max. We stopped in Kendall's room to drop off a lei for her. Grace got to go inside and see her friend for the first time in almost a month. It turns out Kendall's cheeks look just like Max's and they are using the same creams.

As I watched the luau, I got choked up several times. The staff and volunteers at RMH have devoted themselves to making life better for families in unthinkable situations. The children and families at RMH have amazing will and spirit. Max is no exception. Despite the harshness of a BMT, Max has continued to make developmental progress. He is consistently pushing himself to sit from laying down. He has learned what the words hug, kiss, nose and "where's your movie" mean. His fine motor skills are coming along. We are so proud of both our children.

-Margaret

Day +11

WBC 0.3

After the power outage last night (it only lasted about 2 hours) Max settled in and slept until about 4am. Then he woke up ready to rock and roll. His energy and happiness was a welcome site for the night nurse and respiratory therapist. Little did we know that they maybe really needed a smile.

It turns out that a little girl passed away on the unit last night at around 2am. We didn’t know her or her family. She had a form of leukemia called ALL. She fought very long and very hard. You can read about her fight and about the anguish facing the parents of these kids at:
http://www.caringbridge.org/mn/priyanka

Margaret asked the aide tonight if someone died last night and her eyes welled up and she said it had been a very bad night. They are not supposed to show emotion around the other families. It is a reminder that every day in the hospital and every day for the next few years Max is at risk for graft vs. host disease and for a risk of infection. We have tried to make our updates positive and to spread our daily enjoyment of Max with all of you, but please know that while the chemo is over, and the transplant is over, the process is definitely just beginning. And now, and for the next 100 days, we are very very scared.

That said, here's the story of how Max's central line popped a hole:
As avid readers of this site know by now, Max's Hickman catheter is a tube that connects his jugular in his neck with the outside world. It comes out in one bifurcated tube that splits off to two tubes for medicines and for blood draws. Because it is connected directly into his bloodstream it is a dangerous source for infection and is something that on a daily and nightly basis the nurses, aides, and Mom and Dad obsess about. We are constantly following Max and untangling his feet from all of his tubes (sometimes there are as many as 4 meds going in at a time at different points along the tubes). We are constantly making sure his dressing over the line is clean and fresh and that he never never pulls on it.

Even with constant vigilance, his tube has been problematic. The biggest problem is at the point where one tube splits off into two (imagine an upside-down Y) it is always twisting over himself. This sets off alarms and prevents his meds from getting in. Max is so active that he gets extra tape and bandages to hold it all down and it still twists.

So this morning at around 8 his nurse was infusing a flush and POP! his tube tore open and a mixture of saline and blood spilled out. They quickly clamped and called for help. Then they detached everything and Max was for the first time in about 3 weeks unattached to any machine. Other than his clamp hanging off his tube (it looks like a pair of scissors) he looked great. He was happy and smiley and having a ball. His nurse felt really bad about what happened but truth is, it had to be weak from so much twisting. It was fun to expand his little world about 4 feet wider in circumference by being able to carry him around.

So one of two things would have to happen: Repair or Replace. We wanted repair because replace would mean intubation with all of the anesthesia risks for Hurler kids and Max's special spinal cord concerns. And we also would have to worry about the risk of infection and his ability to heal because he has very little white blood cells at this point. So we all were hoping for repair. So they first sent up a woman with a small tube of glue. This she rubbed over the hole about seven times and then we waited 15 minutes. I would call this “The teenage bike tire repair kit” technique. It was a failure. It was still leaky. Now dear old Dad was getting a little scared about how long this might go because Max is on so many medicines and some of them are constant drips.

Next they sent up a surgeon and he came with all of the sterilized towels that they drape over patients on all those TLC shows. Plan B involved cutting away the broken tube, sliding a double metal connector into the bifurcated tube and gluing a sleeve over the outside. The final step would be the creation of a crude splint from a tongue depresser. I call this the "Even MacGuyver's not that crazy" technique. It seemed simple, but the glue dries VERY slowly and it was important for Max to stay still. So we popped in another Baby Einstein movie (or as we call it, "video morphine"). The surgeon tried 3 times and by the third time his brow had soaked through his little surgeon's cap and actual sweat drips were coming down. The guy remained cool even though we all could see that it wasn't working. He stopped and went out to get another kit. We called in one of the head nurses for another set of hands and on the fourth try they got it but they had to open up the flow in one of the sides of the tube with Heparin. Then we had to put all meds on hold for 4 hours for the glue to set (which it did) and after 48 hours it should be just about as good as new.

So it was intense and our little Max didn't have to get a new tube. It only took a few weeks to pop his first one, let's hope he doesn’t need another.

Thanks for reading this far and for your continued support,

mike

Day +10

Well this is interesting. All the power went out on the streets around the hospital about 5 minutes ago. This follows the realization that the phone in the room is not working (but not because of electricity, it's just broken). As for the room and Max, he still has power going to the devices regulating his meds and there is limited light for the room. This laptop has a full battery so I should have another two hours left to type this message.

I remember when the power went out on the east coast that I wondered what the hospitals did during that time. I guess I'm about to find out.

Before I get to the day's news, both Margaret and I would like to say congratulations to our friends Jeb and Sarah. Today was their wedding in upstate New York and under less difficult circumstances, it would have been nice to attend. According to Jeb (my best man at the ice nuptials) the pastor was going to put in a good word for Max. So thank you to them for that and again, congratulations and best wishes for many happy years ahead. We love you guys.

I was just told not to open the doors because the vents that control the clean room are not working due to the power outage. Yikes!

As for Max, he's a little redder and a little rashier than yesterday but they are so far attributing that still to the new antibiotic from the other day. He'll be off that soon so hopefully it'll just go away. He didn't throw up today and didn't have even the slightest fever until tonight but it was slight and he's on Tylenol.

For those of you watching his white blood count, it was 0.3 today so we're still fluctuating. We've had 0.2, 0.1, 0.5, and now 0.3 so much ado about nothing so far. Overall, he's still trying very hard to be his old self but his body just doesn't have as much energy. That just means he's playing more while sitting or laying down. He's still making lots of sounds and smiling a lot -- especially when his big sister comes over and plays peek-a-boo.

Again, it is amazing how well he is doing with everything. He's lucky he doesn't know how sick he is supposed to be. I'm sure all of us would have a lot more to complain about, but he just keeps on smiling. He's added a variation to his "bye-bye" which is instead of just a little open and close of his hand, he now gets the whole wrist involved with more of a wave. He likes to drop this new move on his favorite aide, Sarah, and she loves to flirt right back.

It's getting kind of creepy with no lights outside. I hope Margaret calls soon and tells me that they are OK at Ronnie McD's.

If only I was a vampire,

Mike

Day +9

Another day, another fever.

Max received a few blow-bys of oxygen last night and today when sleeping. His saturation # dropped no lower than 89 and came up quickly with the oxygen. He ate well at lunch, and Dr. Tolar said it is remarkable he is eating at all.

I am not sure if we reported this before, but Max now has a few white blood cells, On Thursday he had .2, on Friday he dropped to .1 and today he had .5. It is normal to have some fluctuation with cord blood. Dr. Tolar did not want to make too much of the numbers just yet. And they don't know if Max is growing the cells of the donor or if his body is growing its own cells again. They will test for this at about day +21, they may be able to test sooner if his numbers are high.

This evening Max woke up from his nap with a fever again (or as Grace says, a favor). He threw up when I was trying to give him Tylenol. They tested for blood in the vomit again and it came back negative. He started breathing pretty fast for a while and then he turned red almost all over his body. They are attributing it to the antibiotic he started yesterday, and now he will get pre-meds to prevent this. This means I will have to wake him up for them and I hope he isn't too mad at me. He must have been feeling better tonight because he was laughing and playing with the respiratory therapist.

Thanks so much for your prayers and words of encouragement.

-Margaret

Day +8

Max slowed down a bit today. He had a great night of sleep, but Max vomited early this morning after taking his blood pressure medication. We attributed it to shooting too much into his mouth at once, but this evening he vomited again and we are afraid the dreaded "rough days" they have been talking about are upon us. There was a little bit of rusty looking blood in tonight's vomit, leading us to believe he has some sores somewhere in his GI tract. Nothing has appeared in the mouth yet, although his tongue is looking white.

Max took 2 long naps today, which was quite a change from the busy bee he has been lately. He just doesn't seem himself. They lowered his TPN (supplemental nutrition) today, because he had been eating so well. But today he hasn't eaten very much so I think they might increase it again tomorrow.

He continues to wheeze, but not too bad. He is getting naps every 2-4 hours as needed. And tonight he has a fever. They gave him Tylenol, he just had a chest x-ray, they started a new antibiotic, and he had a blood culture to see if he has any infections.

We signed up for the Care Partners Program and a family has been assigned to us. They are great people, and they went grocery shopping for us today. I have yet to meet them, but Mike has met them a few times. They want to help us any way they can, and they even have a son named Max.

I have to give thanks to Mike tonight who is bringing a very sleepy Grace back here to switch with me. It is my night to stay with Max, but my tummy hurts and I don't want Max to catch anything from me. I am attributing it to inhaling Subway for dinner, but you can't be to careful around here! Maybe this is more info than anyone needs, but I just thought I'd mention how grateful I am to Mike!

Please pray this fever passes and Max recovers from whatever it is that is making him sick! Also, send some notes of encouragement to Bella and family, she may be discharged to the RMH tomorrow.

-Margaret

Day +7

First the important news: Max has a white blood count. It is 0.2 which means I think 200 white blood cells. This is pretty good. He has to make all of his white blood cells from the tiny amount of stem cells he got in transplant. He can get transfusions of red blood cells and platelets (the other two things stem cells can make) but white blood cells (WBCs) he has to make himself. We've been told to ignore the number because for the next week to two weeks it could fluctuate or stagnate before it starts to increase. That's just part of the process. Still, knowing the chemo took him down to 0, it' s nice to be at 0.2.

As for the day, it was spent with some worry regarding his breathing and wheezing. Different doctors and respiratory people use different terms to describe his wheezing, and this morning we heard that Max's lungs sounded "wet" which frightened us to say the least. We do not want Max's lungs to get too wet, or to develop into more complicated things like RSV or pneumonia which would be very difficult to beat with his immune system so reduced. So it's being monitored and treated with a slightly different regimen of breathing treatments. As usual it sounds worse to us than it seems to make the doctors.

He had a very good time during occupational therapy today, full of belly laughs with a See-and-Say toy. He fell asleep during speech therapy but the therapist took the time to remind me that it's not too early to begin working with Max with sign language because he may be able to use basic sign language before his speech can catch up.

Grace got shut out in BINGO tonight but apparently she took it in stride.

Our webmistress Chris is home from her surgery and doing well.

Grace is now calling the Ronald McDonald House "Ronnie McD's"

There is a very sneaky staircase that heads down from the road behind the hospital directly to the Mississippi River and Grace and I found our way there and dipped one finger each in the water. It was warm. The 12 flights back up seemed to effect Dad more than Grace. Go figure.

Max is now capable of blowing raspberries with his lips. The bald little motorboat is so cute.

One week post-transplant,

Mike

Day +6

Max had a good day today. He has been eating and drinking well, and his breathing treatments were reduced from every 2 hours to every 4 hours. He still sounds wheezy at times, and he always sounds like he has a cough on his chest. We are hoping it gets better or at least stays stable. His nose is runny too. I wish he knew how to blow his nose, I think he'd feel so much better!

Max had OT today and was not very cooperative. It was a new therapist and I felt bad about it. The thing is, Max is a determined little boy, and he wants to play what he wants to play, and doesn't always want to work on what he should be working on. He much rather cruise back and forth on the window bench then work on his fine motor skills. She was very impressed with his energy level, and Max worked himself up so much we had to call for an early breathing treatment.

It seems Bubba is getting heavier, so they increased his meds to make him pass more fluid. He is weighed every day and his intake and output are carefully watched to make sure he doesn't retain too much fluid. The change in medication means more wet diapers and wet beds!

Grace played with a Unit Volunteer for the second time this week. We have never left our kids with anyone other than family so this is a big step for me and Mike. Grace is more than happy to go with the college girls to the hospital play ground or to the play room on the pediatric floor.

Please send good thoughts to our friend Chris, the creator of this web site, who had surgery yesterday. We are so grateful to her for all of her hard work and wish her a very speedy recovery.

-Margaret

Day +5

What a day! It started with a phone call at 6am. I jumped out of bed and answered. "Do you mind if we clip Max's hair?" It was my wife. "Sure" I said, "I can't wait to see him." A couple of hours later I awoke with a gymnastic 3 year old vaulting off my torso and the fading dream of my son, suddenly bald, suddenly capable of stunt doubling for Mini Me.

But it was no dream. When Grace and I arrived at the hospital for the big switch, both Grace and Max lit up. "Look at him, Daddy, loooooook at himmmmm!" Then I got a chance to rub my hand across his little head and it felt so stubbly one way and so smooth coming back. And it may just be the impartiality of fatherhood talking, but he looks good bald. Our little cueball's cheeks and eyes look bigger and his dimple is even cuter than ever. Nurses and aides who had heard of the clipping stopped by throughout the day and they all agreed, the cut was very becoming.

Once alone with Max and once I got used to the new look I was reminded of the many concerns of only a day earlier. But soon pulminology came in and said that they heard some improvement in the wheezing and that Max might be able to space out his treatments from 2 back to 4 hours apart. That order finally came in a few minutes ago, at about 10 o'clock. So they hear improvement. They did add that they reserve the right to give treatments as often as every hour if necessary. Anything to stay off the vent. Of course, if we have to we have to and we heard from a few families today whose children needed to be intubated during this time and they did OK. Again, I don't know where we'd be without the community of Hurler families. Thank you all so much.

The new platelet parameter means that Max should bruise less often and hopefully be at less of a risk for internal bleeding. So far so good. He got some more tonight. It's gotta match his blood type and that will change so they have to check that often. Right now it's so early that it still needs to match Max's original type.

Finally in butt news, his little bottom is finally improving. We've been using ILEX which is a little like using rubber cement but it works. And in other news, some college kids showed up at Ronald's House tonight for a big Lego project. Margaret called me to tell me that Grace won the contest for "Best Speedboat" which, considering she's never seen one, certainly proves the concept that kids like to win stuff.

That's about it, the roller coaster continues, the dreaded days are fast approaching so continue to send all those good thoughts for strength up north and we'll pass them along to Max (Baldy).

Oh no!

He's awake . . .

Good night (I hope),

Mike

Day +4

Today was filled with lots of worry and anxiety for me and Mike. The pulminology team came in to look at Max since he is still wheezing. They increased his treatments from every 4 hours to every 2 hours, placed him on a monitor, and ordered a chest x-ray. Luckily they said it could be done with the portable machine so we did not have to venture out of our room and into germ land. The x-ray came back fine. However, Dr. Tolar (the transplant doctor who is currently in rotation - Dr. Grewal is on vacation now) came in and told me that the chances are high for Max to be put on a ventilator in the next couple of weeks. Max is expected to get really sick as the chemo works its way through his body and destroys his mouth and GI tract. Dr. Tolar feels Max may need support for his breathing during this time. He wants to watch Max closely and react early. He would rather have a scheduled intubation with the best staff available, rather than have an emergency situation with staff less experienced with Max's spinal cord issues.

The other scary thing is that Max has begun bruising all over. He is very active and has always sustained a lot of bonks, but he has never bruised like this before. It is freaking me out! They gave him some platelets this afternoon and are likely to give him more in the morning. Dr. Tolar said he normally wouldn't worry, but since Max was a premie with a brain bleed he wants to be cautious so his brain doesn't begin bleeding again!

When I came in this morning I also noticed a few hairs on Max's pillow. By mid-day clumps were falling out! I know Mike just mentioned in yesterday's update that his hair was holding strong. How quickly things change. It is all over the place. His sheets are covered, as are his pacifiers, bottles and clothes. Tomorrow we will give him a buzz cut. I knew it would happen but I have to admit I am a bit sad.

My mom and Katie left today too. We are on our own for the first time in MN.

We have some thank yous to give. We received a check today from the Pampered Chef fund raising event Mike's sister Dana hosted for us. My mom also gave us money her coworkers at Little Company of Mary Hospital raised. Between the two donations, our housing is paid for well over a month! We are so grateful!

Please pray that Max's lungs and veins stay strong!

Love, Margaret

Day +3

Let's call this day Butt Management Day. It's not a national holiday yet, but it oughtta be. Poor Max has a rear end that looks like it's on fire. We've been putting some serious goop on it and the result at the next diaper change is a sight that is something else altogether. Let's just say that he's been a real trooper and that he has only needed the morphine a couple of times.

Today we met with the transplant doctor and he told us Max is doing very well. He said we are doing about all we can do for his butt and that overall Max is going to get worse in a lot of areas before he gets better. He's gained a little weight so they're giving him diuretics to make him pee a lot of the extra fluid out. This is normal. Tomorrow he will meet with pulmonary again to just have another team listen to his lungs before he heads into the really tough days.

His head hair remains the same, no real fallout. It's actually a little unruly. I think we might have to get someone from the local Great Clips to "scrub in" and give him a trim. The CSA stuff that they give him to suppress his immune system is the stuff that will make him grow hair all over, and we think we see some effects on his legs and arms. Maybe we're crazy. There's no doubt we're going to have a little monkey on our hands soon.

Grannie and Auntie Katie will be leaving tomorrow and I don't know what we're going to do without them. We've had help full-time for our entire time in Minnesota, and after tomorrow it'll be back to the four of us. All we can say is thank you so much to our families for spending these crucial days with us. We are so fortunate to have the support of family at such a tough time. Special thanks to our Moms.

Right now it just changed to Day +4 because it's midnight and Max just got his breathing treatment. The RT (respiratory therapist) thought it was pretty funny to see Max sleeping with his butt in the air. I told her it's probably the most comfortable way for him to sleep right now.

I gotta go to bed, check out the newest pictures by clicking on Max's Progress. Have a great Monday. As our friend Tunia says, the best thing about Monday is that Friday is right around the corner.

Wearing rubber gloves,

Mike

Day +2

What a long day it has been! After a late nap yesterday evening, Max stayed up until 12 am. What a surprise for Mike when Max was up again at 4 in the morning! He fell back to sleep at 6, but only for 45 minutes.

All of Max's day has revolved around managing his horrendous diaper rash. I will try to explain without grossing any one out too much. His bottom is completely raw and bleeds when you wipe it. The poor kid poops a little bit every half hour or so, and as soon as that happens the screaming begins. He screeches all through the diaper change too. He has been taking doses of morphine for the pain, and we are considering a continuous morphine drip for him. We're now trying a new cream and spray as well as "oxygen treatment." Max's respiratory therapist recommended blowing oxygen on his bottom to help heal the wounds.

In between all of this he is doing pretty well and is in good spirits. He continues to wheeze a bit and is still eating and drinking. We've been warned several times today that this will probably stop all together. We are just hoping Max can avoid all of the mouth and gut sores.

Well, I just had to stop writing for a few minutes to call the nurse. Max stepped on his lines and pulled them apart again. Luckily, Auntie Katie noticed right away and we clamped them off. Now he is drinking some apple juice and hopefully he will fall asleep soon. Auntie Katie is rubbing his hair (which, by the way, has not fallen out yet) He needs some rest.

Mike, Grace and Katie went to the Children's Museum in St. Paul today and had a great time.

Thanks for checking in on Max!
-Margaret

Day +1

After all the talk of anti-climax, I guess you can say it better applies to Day +1. Day 0 brought so much hope and so much excitement, a letdown was almost certain. So, in truth, there is very little to report today. Max remains himself, full of personality and always happy to show the nurses his dimple. The highlight was during speech therapy when he was taught a new game - crashing down toy towers. His laughs were deep and heartfelt and all in the room were in stitches.

The low point involves his rear end where his output is keeping us from letting enough "butt-paste" do it's job. At one point he was writhing in so much pain that the nurse recommended the smallest dose of morphine and I said OK. We've been told many times that pain management is a key to healing and not a deterrent to engraftment so we should make Max as comfortable as possible.

Grace remains a little stuffed up so we're all wearing masks. When a couple of us are in the room, Max is seeing a vision that will only be repeated in movies involving surgeries or train robberies.

The creamed corn smell is fading, and you know, I kind of miss it.

Dear Green Giant Inc., . . . . .

--Mike

Day 0 - Transplant Day!

What an overwhelming experience to say the least. The staff kept telling us it would be anti-climactic, but how can the chance for your child to live be anything short of a miracle? How can you ever thank the family who donated the cord blood? Max's life has been full of miracles and moments of triumph, today was the greatest of them all.

The day started with lots of coughing for Max. He has begun wheezing again. It could be a residual effect of the ATG, or he may have caught a bug. His nose has been stuffy and runny too. A "sample" has been sent down to the lab for testing to make sure he doesn't have viral pneumonia, but Dr. Grewal is not "too worried" about it. They put him back on oral steroids and he is now getting breathing treatments every 4 hours. He sounds better tonight than he did this morning. Max had no idea what a big day today was going to be.

The transplant was scheduled for 4 PM today, but the cord blood arrived at 2 PM instead. Everything stopped when the blood arrived, Max got a number of pre medications (to prevent reactions) , and then the transfusion began. Thank goodness Mike was at the RMH and got here in time! The entire thing took all of 15 minutes, and then the new cells were in Max's little body.

The charge nurse came in and took some Polaroid pictures of Max, Mike and I, and Max was given a balloon and transplant present from the hospital. He was appropriately dressed in his SuperBoy outfit for the occasion. Grannie, Katie and Grace came to the room briefly. Toward the end of the transfusion Max fell asleep. Some kids cough and vomit from it but Max handled it beautifully. Because of the preservative in the blood, there is an odor during and some time after transplant. Max now smells like creamed corn!

We are so incredibly proud of our son today. The road he has traveled has been very rough. He has been fighting for his life from the moment his life began. He has worked incredibly hard to do what he can do. Just think - one year ago Max was spending his 2nd night at home after living in the NICU for almost 6 weeks. Feeding tube in his nose, heart and breathing monitor attached, we marveled at his strength and determination. Tonight we do the same.

Thank you for all of your prayers and support. Please keep pulling for Max and the other children here. Some of the roughest days lie ahead as the effects of the chemo take their toll. Please say special prayers for Grace's friend Kendall who is having a rough day.

It's now time for bed, and unlike the east coast, there's no lack of power here. Max is wide awake and in the best mood he's been in all day.

Thanks for all your support,
--Margaret

Day -1

Max's last day of chemo was pretty good. He was able to keep most food down, and only threw up at the end of night but he calmed down pretty well with some Tylenol for his fever and some anti-nausea medicine.

By the time most of the readers of these updates are reading this, Max may very well have some new cells swimming around in his blood stream. Tomorrow we will update you about the experience of seeing Max get some new cells. Tonight, I think I want to write a goodbye to all of his old cells.

Dear Max's old cells,

Most of you are gone, the chemo took care of that, but those of you that remain, may you give little resistance to the new cells coming in tomorrow. Max desperately needs you to step aside, and to allow his new cells, full of the enzyme he needs, to take over and offer him hope for the future. Max's Mom and I must remind you that we had the power to create you (unwillingly) and we have the power to destroy you (gladly).

Thanks to you, Max will continue to struggle with many many issues throughout his life. You have done so much damage in so little time, we can only say that the chemo is giving you what you deserve. But because of you we have learned that every day we have to fight for our brave boy. And our little guy will learn to fight to be accepted as "normal" even though he will be starting his journey of life so far behind his peers. But there is great love that comes with appreciating your child every minute of every day. Without his disease we might not know that love.

Finally, if any of you are still listening, please send the message to the surviving cells to help the new ones grow. Max's best chance for success involves quick and thorough engraftment with little resistance.

Thank you,

Mike (Max's Dad)

Day -2

I walked in this morning and found a totally different baby from the one I left last night. Last night was pretty bad. Poor Max couldn't keep a thing down. After some sleep and anti-nausea meds, he was wide awake and ready to party with Mike at 3 am! He was even able to do an hour's worth of therapy this morning. He hasn't eaten much today, only crackers, cheerios and apple juice. They just started him on supplemental nutrition (TPN) via the IV. He is still weak and tired, but what an improvement!

We braced ourselves for another bad night tonight but we were pleasantly surprised. He has not vomited once today! He was able to keep his Tylenol and blood pressure medication down. He did not get a fever after the ATG either. I am hoping he will have a quiet night. Thanks for praying for Max, I am sure it had something to do with him feeling better today.

He finished his course of Cytoxin today, but tomorrow is more ATG. Thursday is transplant day! Dr. Charnas, the neurologist, will be looking in on Max tomorrow. They measured his head yesterday and it was bigger than a couple of weeks ago. Dr. Grewal is not concerned, as Max is still asymptomatic and his fontanel has not changed.

In other news, Mike's mom (Grandma Chick) and Mike's sister (Aunt Peeps) left today. Grandma has been with us for so long it is strange that she is not here. She was a great help to us and we will really miss her. My mom (Grannie) and my sister Katie arrived today from Chicago. They will be here 6 days and then they head back home to move Katie into college. Grace and Max were thrilled to see them.

Please keep praying for our Mighty Max!

-Margaret

Day -3

What a really rough day for Max! He has been vomiting almost all day. After some new anti-nausea meds this morning he was able to eat a little bit, but since then he hasn't been able to keep anything down.

He started the dreaded ATG today and he now has a fever. We have been trying to give him Tylenol because you can tell he feels terrible (moaning, rapid heartbeat and breathing), but he has been vomiting that up too. The nurse just got some in him and we are hoping it stays down long enough to work! Because of the fever, they started him on 2 new antibiotics, did blood and stool cultures and have ordered a chest x-ray. This means we will have to take him out of his germ controlled room and into the real world. He will have to wear a mask of course and we will do it when traffic in the hospital is low. We are still scared though.

He has 2 more days of ATG and then his transplant. His blood pressure is still high and he won't take the meds by mouth so they will probably order IV meds for him. And if he remains unable to eat by mouth they will start IV or NG tube feeds of TPN to make sure he is getting the proper nutrition before and during transplant. Most kids end up needing TPN, but it can take a toll on his insides so we'll have to keep trying to get him to eat some stuff by mouth. Please keep praying for Max. He is really feeling yucky.

-Margaret

Day -4

The golden days are over. Max started to feel the effects of the chemo today. Max had a good night of sleep, and adequate "output" of fluids all day, but this afternoon he began to vomit. The first two times were not much, but tonight was bad. After taking all of his 8 PM meds like a champ he began to cough and he threw up everything. The poor guy was so sad our hearts were just breaking. He didn't eat as well today either. The nurse started him on another anti nausea med which will make him sleepy too.

In other news, his blood pressure continues to be high so they increased his dose of blood pressure medication this afternoon. It was still high when they checked it at 8 tonight, so the nurse was going to tell the doctor and check it again in a little while.

Tomorrow is a big day for Max. He starts at least 3 new medications, one of which is supposed to have horrible side effects. It is called ATG, it is derived from horses (yes, horses) and it causes fevers, chills, vomiting, and hives. Say some prayers that Max doesn't get the worst of it. He also starts CSA and the oral steroids (I incorrectly reported in my last update that he was starting it today).

Keep praying for Max that he makes it through this with little discomfort.

-Margaret

Day -5 aka Mommy's heart attack

1 late nap + 1 late breathing treatment + 1 messy leaky diaper = 1 baby who is ready to party at 11 PM

We have been busy since I wrote in this morning. Let's just say Max has needed 4 sheet changes today.

Dr. Grewal made his rounds today and was pleased to hear Max is still eating well. However, his blood pressure has been on the high side lately and he wanted to know if Max has been very upset during pressure checks. When I told him no he decided to place Max on some blood pressure medication. He begins steroids Monday and that will raise his pressure so they want to be on top of it. Tonight when the nurse checked it was really high. SHe alerted the doctor but when she checked it again it was much lower.

This evening Max scared the pants off of us. Mike and I were getting ready to go on a break when Grandma Chick noticed Max was bleeding. I quickly called the nurse. Mike lifted up his shirt to see if Max ripped out his central line and thank God it was still in tact. Max must have stepped on the IV connection to his venous line (the part of the central line they use for blood draws), and blood was leaking from it. It was not a lot of blood, but it was enough to scare us. The nurse pinched it off and attached a new tube, taping it together so it doesn't happen again. They should have checked my blood pressure after that!

Max has been making the required amount of wet diapers today. He has also given us the added bonus of the leaky messy ones. Besides the bloody sheet change, we've had to do many soiled sheet changes, including one a few minutes ago right when Max started to get sleepy. Needless to say the outfit, diaper and sheet changes woke him up and he was flirting with the nurse's aide.

Max's buttski was looking better this morning but it is red again tonight. I guess the new chemo is irritating it. We continue to use tons of "butt paste."

Mike, Dana and Peeps took Grace to a very nice park today and they had fun. Grace went to bed at a normal hour for the first time since we've been out here. She's been a bit crabby and moody the past few days and I cannot blame her.

We are so grateful Max is doing as well as he is. Let's hope for continued success, lower blood pressure and good diapers!

-Margaret

Day -6

Good morning Max fans. We apologize for not sending an update last night. Mighty Max is doing well. Besides some messy diapers he has yet to show any effects from the medications. Dr. Grewal thinks it is from his antibiotic and not the chemo. He is still eating very well, and is quite energetic. He has started bouncing on the crib mattress, and loves to get out and play on the floor mat. He is becoming more used to the nurses and staff and is not as scared when they come in for vitals.

Last night Max began a "flush." Today at 10:30 he started a new chemo called Cytoxan, which is very hard on the bladder. They are flushing his bladder with fluids to keep things moving so the chemo doesn't settle in and cause any damage. His diaper has to be changed and weighed every 2 hours. If he hasn't gotten rid of enough fluid they will give him something to do so. They don't want him to retain fluid so they will also be weighing him 2 times a day now. He will be on Cytoxan until Tuesday (day -2). Guess who visited Max this morning? None other than Ronald McDonald himself! Max slept through the visit but we did get a picture of them (look for it to be posted soon). Hopefully Grace will catch Ronald when he goes to the RMH. Aunt Dana and Aunt Lisa (aka Peeps) arrived in MN last night much to Grace's delight. They all went to the Mall of America last night and Grace rode the rides at Camp Snoopy. Today Mike is going to spend some time with his sisters, his mom and Grace.

We want to send lots of thanks yous out to everyone. We have received so many thoughtful cards, emails, guest book entries and packages from family, friends and "friends of friends." We cannot express how grateful we are for your support. We apologize that we have been behind on replying to emails .

We will keep you posted on Max's progress.

We love and miss everyone,
Margaret

Day -7

Today Max had another strong, busy day. He's still got a pretty good appetite and his strength is holding up. It's amazing to think about how his body is taking to the chemo. When the nurses bring it in, they wear full body coverage and face masks. I asked them why all the extra protection, and they told me that if it was to spill it could give them leukemia. So they're worried about a couple of drips, and they're putting full vials of the stuff into Max every 6 hours. Yikes! We've been told that things really get nasty on the next chemo and then he gets some stuff called ATG which will really mess him up. So stay tuned!

He had speech therapy and occupational therapy but both times the physical therapist came by he was napping. The physical therapist told Margaret that after Hurler kids learn to walk they lose the range of motion that they have now while they walk with their arms raised holding onto Mom and Dad. The muscles in the shoulders are more constricted in Hurler children. Who knew?

I've been under the weather for Max's first week so Margaret's been bearing the brunt of the hospital time. I must have caught Grace's little bug but it finally seems to be moving out. So that means I'll be moving into the hospital soon enough. Today, Grace got to play with Julia, a Child Life Specialist. She gave Grace a doll with a Hickman catheter in her chest (like Max) and some medical supplies. Grace named the doll Abby, and had a great time with it. She knows how to screw a syringe into the catheter to administer "pretend chemo" and also a new medicine Grace created called "femo." We hope Grace doesn't ever try this on Max! Also, while I've been down, Grandma Chick has really stepped in and tonight was able to cover Max so Margaret could come back for Thursday night BINGO with Grace. Tonight's winnings: a new set of LEGOs.

In other news, both of my sisters are driving up tomorrow so we should find a way to get Grace and Grandma (and us?) out of Ronald's House for a getaway. Also, Max turned 13 months today (8/7/03 Thursday). A year ago he was still in the neonatal intensive care unit and we were so scared. It seems like he's been around so much longer because he's been through so much. But he's still our little champ and we couldn't be prouder of him.

Sadly we also witnessed another family grieving and leaving the home here after the loss of their daughter. We've been told we're going to see a lot of that. There are so many tough cases here and so many hopeful parents and so many sick kids. We must hope that Max will be one of the lucky ones.

Keep on staying positive and keep on checking in. We really appreciate the notes from all of you.

Good night from Minneapolis,

mike

Day -8

Today was another good day for Max and another day for us to get more comfortable with our situation. He spent Tuesday night peacefully asleep through most of his vitals and IV changes. Most of the night was spent with Dad rolling off the bed trying to gather quickly what was going on in the dark with no glasses. I've gotta hand it to the nurse, her silence and her ability to move around only illuminated by a small flashlight were admirable.

Margaret then took over for the day (and night) and the biggest event came when she emptied out his bath and accidentally hit the call light. This button in the bathroom has some sort of high-priority associated with it and the nurse and aide came running in only to find Max asleep. Max's appetite remained good today but the first sign of the effects of chemo came and it was in his diaper so I'll leave it up to the imagination. Let's just say that the nurses are making up a concoction called "Butt Paste" to help take care of the situation.

His attitude has remained positive overall, and we've become more comfortable taking part in most of his treatments. We are allowed to administer most of his oral meds, his ear drops, help with the vitals and breathing treatments, and most importantly administer "mouth care" This is when we use 3 swabs to go all around Max's mouth with salt and soda water. One of the first things that can happen as the immune system is eroded is yeast and mouth sores are the first sign.

We were visited again by some of Max's therapists and he spent some time today working with a physical therapist out of his crib. We have a red mat in the room and Max was able to work and play there. Max has a good time out of his cage, and he just wants to keep going off the mat, but that's a no-no germ- wise.

As for Grace, she was able to visit her brother briefly today and when we returned she was able to work on a craft with some "Viking Wives". Once a month some wives of the Minnesota Vikings come to the Ronald McDonald House and work with the kids. I wasn't able to tell who the lucky players were, but this was a very nice gesture. Grace seemed most interested when she found out the Vikings had purple uniforms. Then at night, a local art teacher came by and the project was called "Van Gogh's Flowers" and Grace and Gram Chick worked on chalk drawing.

So we're still on track for new cells, and we've got a couple more days on this chemo (Busulfan) and then we change to a different one. Keep rooting for Max to stay strong and thanks again for all the support. It means so much to come home from the hospital and be met with so many wonderful bits of encouragement.

All the best, and Go Vikings! (or the wives anyway)
mike

Day -9

Max had his first full day at the hospital and overall it went well. Chemo started at 4 AM this morning. Max must have been excited to get his treatment underway because he was wide awake for it. It took an hour to get him back to sleep. Sleeping has been rough, as they have to come in very often to check his vitals, administer meds, etc.

Max pretty much hates whenever anyone fusses with him, whether it is for a temperature check or for medicine. He especially hates the blood pressure cuff. Once the nurse is done, however, he returns to his cheery old self. He is eating and drinking like a mad man, which I am sure will stop when he starts to feel the effects of the chemo.

Max had visits from occupational, physical and speech therapy today as well. The are all going to check in on him every day to see if he is feeling well enough to work. Mike is taking the night shift and I am home with Grace tonight. I have to admit I am a bit worried about leaving him. I know he is in good hands with Mike and the hospital staff, I've just never been away from him.

-Margaret

Day -10

Check it out! We've got a countdown. From now until day ZERO (transplant day) we're counting backwards. Then the numbers go up, all the way up hopefully to day 100 which would be the first chance to actually come home to Chicago. But that's a long way away.

Today Max was admitted for the long term. He has his own room which over looks River Road, a nifty little thoroughfare that borders the Mississippi River which divides the campus of the University of Minnesota. We'll have a birds-eye view from the fourth floor looking down on many bleary-eyed freshmen heading out for early classes.

The room has two parts, an ante room (we're calling it Auntie's Room) and a main room. Auntie's Room has a sink for washing hands and some basic storage. It's one more step to removing and sealing off germs before coming into Max's room. The main room has a big, loud, heavy, metal crib with four adjustable sides. This is Max's main home. Elsewhere, there's a bench to sit on (and look out the window), a TV, a phone, another sink, and lots of medical stuff. There's a bathroom, but we can't use it. Only patients are allowed to use the facilities. So we gotta go down the hall. Did you know that while Max doesn¹t use the bathroom, it is where all of his diapers go? That's 'cause they collect them and weigh them. Look for the entire collection to be on EBAY soon!

Grace's friend Kendall is down the hall, but inter-room mingling is strongly discouraged. So we're pretty confined and really the worst is for our little Bubba. Max has been on the move all over the Ronald McDonald House and now he's mostly stuck in his crib. They have people called "Unit Volunteers" who come in and play with the kids to give you a break. One of them brought in a large red mat and Max was able to stretch out a little bit.

Today he just got one anti-siezure med (tomorrow's chemo can cause seizures). So in terms of the actual transplant, it was kind of uneventful. But it didn't feel that way for us or Max. He gets his vitals checked every four hours (round the clock) and respiratory therapists now come in three times a day to give him his breathing treatments. The transplant Doctors stop by in the morning and before they leave, and the regular blood draws begin tonight, and will continue every night at 4am. Once occupational, physical, and speech therapy starts, I don't know when Max will have a moment of peace.

I gotta get Grace to bed, we left Mom and Max alone in the room and now it's late. Grace was pretty psyched to see her bro in the room and then was so sad as we left the hospital. Overall, our little drama queen is handling things pretty well. Things are going to get really hard, really fast. We are so thankful that we've had Grandma Chick out here to help watch Grace through so many appointments. To be able to be with Max together is so very important. On Friday, my sisters come out and we'll have more help. This will be nice, because by the end of the week, most of the chemo stuff you've all heard of--hair loss, appetite loss, energy loss, etc. will be happening. So stay tuned!

--Mike

August 1

Friday August 1, 2003

August 1!?! Where did the time go? We seem to have lost track of time as we've been immersed into our little transplant world. Outside of Bob Hope's death and Lance Armstrong winning again, we're pretty clueless on current events. That's what you get with no newspapers or TV for a few weeks.

With everything pushed back until the beginning of next week we're going to try our best to enjoy our last couple of days as a family that can still get out. We've been told to avoid crowds and do massive amounts of hand washing (as always) and Max has been put on one more oral steroid for his lungs to boost them up the best they can before chemo starts.

So today we made it out to the Minneapolis Sculpture Gardens at the Walker Art Center. We didn't go inside to the museum, but we enjoyed the garden. If you've ever seen a guidebook to the twin cities, you've probably seen a picture of the giant spoon and cherry fountain. The Frank Gehry glass fish was pretty impressive as well. "Don't touch that Grace, it's glass . . ." You can look around the garden :

http://www.walkerart.org/resources/res_msg_qtvrframe.html

We don't know what else we're going to do this weekend, but we're happy for a couple more days of freedom.

Check out the photos page for a couple of pictures of our stay at the Ronald McDonald House, and thanks as always for all your encouragement in our guestbook.

All the best,
Mike