Max Update! April 29, 2004

April 29th

Max completed the first phase of his treatment last Thursday! Congratulations Max – You are amazing!!! Wednesday was the last day of daily chemo therapy and Thursday was his last radiation therapy. The technicians at the UW radiation treatment center gave Max a certificate they all signed and some other cool stuff. It was really nice. To celebrate we went to the Mariners game – It was a great day, the sun was out, it was warm, we sat in the seats we’ve been sitting in since the ballpark opened – it felt just awesome!

The doctors say that we should expect Max to feel pretty tired and sick for as long as four more weeks but that nothing is really for sure - Max could do better than that. We’re praying that he’ll start getting his strength and appetite back soon so we can build him up for the next phase of treatment which starts in June and goes through October.

The last week or so of treatment has been tough on Max and on us. Mostly he’s just pretty weak and tired. He gets out of breath just walking up the stairs and eating or drinking anything is really hard for him to do. Even so, he’s doing remarkably well. One of the physical therapists told us that in the five years he’d been at Children’s, he’d never seen another kid with Max’s diagnosis doing the kinds of things Max is doing. Max took an IQ test the week before and his teacher told us that in the three years she’d been there she’d only given the test one other time in a case like Max’s – In all the others, the kids just hadn’t recovered enough to even take the test.

So the recovery that Max has made so far is truly amazing and we feel very blessed. At the same time though, the doctors and therapists are comparing Max with other kids that have had brain tumors. It’s a little harder for Max and for all of us - we can’t help but compare against the things Max used to do just a few months ago. Every day we have something to work towards though.

Max joined his baseball team last weekend and went to two practices and a couple of games! His coaches and teammates have been so wonderful in welcoming Max back to the team. It’s been a great way for him to get out and be with some of his buddies and to participate in a sport he loves. We even went to Big 5 to get some new baseball shoes, and Max talked me into a new bat, and a helmet of his own.

The team’s first game was last Tuesday, and Max suited up, complete with team jersey, hat and baseball pants! He got to be first base coach. When it was time for his team to bat, Max started out of the dugout carrying his new helmet, walking as fast as he could behind the backstop, past the other team’s dugout and onto the field beside first base. I was standing with the other parents and when our eyes met he smiled a little at me but I could tell he was really tired and that this was a lot of work for him. It was heart wrenching to watch. Max was a good baseball player. He was the youngest player and the only first grader in the league the year before. He’d even pitched and had struck out more batters than anyone on his team – he was seven years old. Now it was a big effort just to stand up. He’d been through a full day of treatments and physical therapies, it was really cold and he really just needed to rest. I was tired and cold and offered a couple of times to take him home, “Max, let’s go, it’s really cold, I’m freezing – it’s OK”, I said to him when he was in the dugout, waiting alone for his team to bat. “No - I’m fine”, he said.

I don’t really know what he was thinking and why this meant so much to him. His courage and tenacity surpasses anything I can imagine though. There was a baseball game going on, pitchers pitching, hitters hitting, and parents cheering. One of the most dramatic battles I’ve ever seen took place outside the diamond - up the first base line, a little boy, standing, shivering in the cold, his white baseball pants waving in the wind, his new baseball cleats sinking the sand – so cold, tired and off balance he could barely stand up –. Refusing to give up and go home. I can’t imagine ever being more proud of Max in sports than I was right then. This was a heroic accomplishment – mentally, spiritually and physically and it was a privilege for all of us to be on the same field with him.

On Friday Max had a sleep over with a couple friends from his class! This meant a lot to his parents too because he had planned to have one in early February before this had all happened. We’d told him he would have to have it sometime later, after surgery – On Friday it happened. It couldn’t have gone better. We played some baseball in the yard, barbecued hot dogs, played Xbox and watched movies. The kids fell asleep in front of the TV around 10pm. For the first time in about 3 months, we felt like things were kind of normal.

Sunday was First Communion for the second graders at St. Anne’s. Max looked great in his double breasted suit! He took his place alongside his class at Church. Each of the kids got to participate in some way in Mass and Max got to read passage at the altar along with some of the other kids. Max actually memorized his part and did an incredible job! After Mass we got together with friends and family for a little celebration and later on actually played a little baseball in front of our house.

Still before us is the MRI and spinal tap Max will have at the end of this six week break. Please join us in praying, visualizing and meditating that Max’s treatments, together with God’s healing have cured Max and that these tests will come back clean! We have faith and every confidence that they have!

So we’re over surgery, in-patient recovery and the first phase of treatments. That’s quite a lot! Along the way we’ve experienced some profoundly moving things and are thankful to have been able to share them with all of you. This doesn’t ever get easy but we’re finding our way through it thanks to support from so many of you. A friend told me that her kids had learned so much about kindness and generosity from Max and that she felt our entire community has been brought closer together because of this ordeal. That is so wonderful to hear and we believe it too. We are every day, together in God’s light. Bless all of you for your kindness, generosity, love and prayers.

God Bless

Max Update! April 11, 2004

April 11th

Sunday

It's been a busy, tiring week but overall things are going well; here are some of the highlights.

Max attended school for a few hours on Tuesday, Wednesday and Thursday. On Wednesday he was there from 8:30 until 12:15 - He even went out for recess! I watched from inside the school as he and 4 other second grade boys played basketball - Full court, 2 on 2. Max was the referee and "coach". He was encouraging his buddies to pass the ball, look for the open man. He was so excited when he got in the car, "Dad they're going to be so ready to play next year when the league starts up - I taught them how to set a screen!" He was trying to figure what to teach them next. We decided that boxing-out would be good.

On Thursday he went on a field trip with his class to Pike Place market. It was a really tiring trip, they walked all over the market but he did it!

Thursday night Max decided he wanted to have lemonade stand. He made signs out of sheets of paper he'd taped together: We'll donate to Children's hospital - Lemonade & Orangina. After treatments on Friday he couldn't wait to get started. The sun was bright, it was warm. We setup a little table in front of our house, taped his signs to it and Max sat down to wait for customers.

He got customers. They surrounded him and spilled onto the street. People came and drank lemonade, stood on the grass and talked in the sun. This beautiful little kid - his skin burnt from radiation, no hair on his head, fresh off a days treatments - sitting behind a little table, pouring lemonade for three hours to collect money to give to the hospital for toys. This moment was a miracle - we experienced it. God gave it to the world and for fifty cents you could have a drink of the best lemonade ever made.

He collected $389.29.

Thank you to the many of you who stopped by on Friday and for your tremendous generosity. What a way to kick off what turned out to be the most beautiful April weekend in Seattle's history. It was Good Friday.

It also kicked off a very busy weekend for Max!
After the lemonade stand on Friday we dyed Easter eggs - Max did great - His egg dying capacity far exceeded everyone else's! Saturday we went to the Sonics game. We stayed for the entire game, did some shopping in the team store and ate popcorn and hot dogs. Sunday was Easter - Max completed 2 Easter egg hunts pretty much all by himself, (Beck offered encouragement but really wasn't much helpJ). He even played some pool Sunday afternoon!

Did someone forget to tell Max he's recovering from brain surgery and is in the middle of some pretty aggressive treatments? We knew he was special. We had no idea. On Friday night I again told Max how proud I was of him and that I thought he was the toughest kid in the world. He said thanks and that he couldn't do it without me. "Thanks for all your support Dad".

As amazing as this all is, we know it's very, very hard for him. The treatments are really taxing his body, he has very little interest in eating or drinking and he's really tired of all the "stuff" he has to do that goes along with this - eye drops, moisturizing gel, bandages, creams, anti-nausea medicine, the eye patch, bandages, sunscreen, hats, muscle stretches,… it goes on and on. He wants to be like everyone else - like he used to be… This is not the way an 8 year old boy is supposed to grow up. It is the way he's growing up. Somehow he continues to find the strength and courage to keep being a loving, enthusiastic, beautiful kid.

We have a little over a week to go in this phase of Max's treatments. Beginning April 23 he'll get a 6 week break. Thank you for joining us in prayers and good thoughts for Max. Our community of love and prayer transcends space. Our prayers are heard and they are being answered. Bless all of you for your continued encouragement, for meals, for prayers and for love.

God Bless

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