Max Update! April 4, 2004

April 4th

April 4th - It's now been about a week and a half since we "moved" back home from the hospital and it has been really good for Max. In-spite of many daily challenges, he's progressed a lot and it's been exciting to watch. In just a week and half, he's gone from not being able to walk on his own and being dependant on a wheelchair to the point where now he doesn't use the wheelchair at all, is walking pretty normally and has even tried taking a couple of steps running! His speech, personality and use of his hands and arms are also continuing to get better. It's been a remarkable recovery so far.

He's been to school a few days, for an hour or so at a time and has had a few play dates with friends. We even went to a movie last Friday downtown, Scooby-Doo 2 - Max said it was even better than the first one and "worth every penny!" I agree. Still he's not exactly back to normal, you can tell he's working so hard to be himself, he smiles, plays games, shoots baskets, hugs his little brother...but he knows it’s not the same right now, no matter how hard he tries – His courage is deeply affecting, but it's got to be pretty scary for him.

Thought everyone might like to know - here's what Max's days are like right now...
He wakes up around 7am, watches tv, eats some breakfast, goes to school (if he's feeling up to it), leaves school around 9:30 and goes to Children's hospital. At Children's he goes through rehab therapy for up to 3 hours a day. Each session includes some games and exercises that help him with strength, balance, coordination, speech and doing important daily stuff with his fingers and hands. These can be pretty exhausting for him (and his parents too ). Today in physical therapy we played "scooter basketball" sheez, my legs are still tired! After lunch at Children's and whatever afternoon rehab therapy session is scheduled we go to "clinic" - chemo therapy at 1:30. It takes about an hour all together with checking in, waiting for an "infusion room", getting the anti-nausea medicine, checking vitals, taking blood ... It only takes about 15 minutes for the drugs to be injected into the port in Max's chest. He just sits there and watches Rugrats on TV or makes paper airplanes. They’re good airplanes and he's really proud of them.

After Chemo-therapy we go to the UW for radiation therapy. That starts at about 3:15 every day. We have to wait in a kind of dismal waiting room at the UW. There’s definitely a difference between this and Children’s hospital. We try to make the best of it with games, making airplanes, and even playing catch. When it’s Max’s turn, he goes into the radiation room, lies on his stomach on a bench and puts his face into this mesh mask they made for him. We have to wait in the dismal waiting room again. He comes out about 15 minutes later. By this point Max is exhausted and we go home. It’s usually around 4pm.

As of Wednesday, March 31, we're exactly half way through the first part of Max's treatments. That's the intensive 6 week radiation and chemo-therapy part. Two and a half weeks to go. Not long really but it seems like a very, very long ways away. April 22 Max will begin a 6 week “vacation” to let his body recover and get ready for the next phase of his treatment. That’s 6 months of chemo therapy. We’ll send more information on that later but for now we’re just keeping our eyes on April 21.

Max's hair did finally start falling out last weekend, it was hard on him, but after a while he just wanted it all shaved off. It was getting all over the place and bugging him. After a professional buzz-cut he's looking really good - we think so anyway!

On Sunday evening we heard that most of the boys in Max's class had gone out and gotten their heads shaved as well. Knowing that his buddies were willing to do this meant so much to Max. We have a picture of the buzz-cut boys. They all look great – just a bunch of bald, happy second graders! The picture’s attached, check it out - this is what love, acceptance and hope looks like.

People's perceptions of him really do matter to Max, especially about the eye patch that he still wears. “People think I have a burnt eye” – he says. These are little things - they chip and chip away. He doesn’t win at bump, he can’t hit, catch or throw a baseball as well, he can’t run or kick a soccer ball like he used to – these are things that we thought defined Max. Somehow he keeps shooting, hitting, throwing and kicking. His love of playing transcends his physical limitations and it just doesn’t seem to matter much that playing baseball now means hitting a Nerf ball off a toy bat with his Dad outside his house. Doesn’t matter to Dad either.

One of the things Max has been spending a lot of time on is making flags. He found a website that has pictures of flags from around the world and he'll print one out and then make it with water color pens on this pad of 11x17 inch paper. These are pretty big flags and it's a lot of work making them. When he's done he writes the name of the country on the back of the flag, puts it in a pile and starts on another one. He got a pile of more than 60 or so already. I asked him if he wanted to put them up on his wall or decorate the house or something with them. He said, "No, I just like making them".

He is teaching us so much.

This is such an incredibly long road; it will wear and wear on us. I have no idea who we’ll be when we get to the end of it, but for sure we’ll be closer to all of our friends, our families and to God. We have to be every day. I read an email where someone was describing this situation as a nightmare - this is not a nightmare, it can’t be, it’s our life. It is what it is.

Once again we have to thank our friends and families all across the country and especially our community in Seattle. We absolutely would be lost without you. Because of you we’re not alone - we are taking this journey together and the miracle of its glorious completion will belong to all of us!

Love and God Bless