Max Update! July 6, 2004

July 6th

First off Max is doing well! He’s out of school for the summer and even though he was pretty tired, he participated in most of the end of year festivities, including field day, his class party and even an evening party that lasted from 5-10PM! We notice especially in the morning that he’s more animated, volunteers ideas and conversation a lot more often and sometimes he seems almost back to himself! His eyesight has improved to the point where he doesn’t need the eye patch anymore!

Over the last month Max has been through a lot but his spirits seem really great all things considered. It’s wonderful to be able to tell you that mostly he just wants to do fun things on his summer vacation, be with his family and friends. By the end of the day he’s usually really wiped out-walking up the stairs is a pretty big workout. But considering all he’s going through, just the fact that he’s able to do as many things as he does is pretty amazing.

At the beginning of June Max went in for his first round of maintenance chemo-therapy. For these treatments we check into the hospital on a Wednesday and stay until Saturday morning. Max has to stay hooked up to an I.V. pole on wheels which is connected to the port in his chest for three days- it makes moving around tough but he kind of got used to it after a while and amazingly never complained much about it. There’s a play room nearby where we play pool, some bikes he can ride around (with us chasing after him with the I.V. !), we watch movies, play games, read and try to make the best of it. It isn’t very fun though. You realize how great it is just to be able to sit in your own house, read a book, watch TV or go wherever you feel like. Seeing Max walking around pushing a cart with bags of drugs hanging from it for the first time was a really vivid reminder of the gravity of the situation. Coming off his six week break, we’d kind of gotten used to life without nurses, chemo, shots and blood counts. Life where what mattered was baseball games, play dates and math tests. Coming back was hard-we just wanted all this to go away.

We weren’t really sure what to expect from this stage-would Max be too tired to move and have to spend all day in bed? Would he get really sick and end up in the hospital? The treatment went fine though - Max didn’t even get sick and overall he’s been holding his own against quite an onslaught of chemo therapy. He actually has a lot more energy than he did during the first phase of treatment. He’s been able to continue physical therapies at the hospital and for the most part participate in activities he enjoys. So far this summer Max has been to the pool and played mini-golf a couple times, he’s doing art classes and is signed up for some other camps over the summer. We’ve been to the beach house a few times and Max even did some inner-tubing!

Things could still get a lot tougher but so far we have to feel really good about the way Max has reacted to treatments- and really about the way everything has gone.

The big thing we have to watch out for is an infection. Since Max’s immune system gets really depleted by the treatments, getting an infection of any kind can be really serious. It usually means you have to check into the hospital and may end up needing a blood transfusion. Because the treatment Max is getting is pretty aggressive, the doctors told us his white blood cell count will get knocked down to zero. To combat this and to help his system recover, we have to give Max a shot of G-CSF every day for about two weeks after treatment. It’s a new drug and it allows much more aggressive treatments then would otherwise be possible. It’s great unless you’re the kid getting a shot of it. At first this was completely horrific. But like everything else, Max has kind of gotten used to it. It’s still something he hates, but he manages to get through it.

Sometimes, with all the amazing things he does and progress he’s made, it’s easy to lose sight of the fact that he’s just a little kid, and not some all-powerful superhero. Shots are terrifying, swallowing pills is excruciating and it’s hard to remember that words can never hurt you.

After School got out we finished collecting for the Miles 4 Max fundraiser. We got to do a formal check presentation at the hospital! Through the tremendous generosity of friends, family, and even people who’ve never actually met Max the event raised

$17,614.50! Absolutely phenomenal! Thank you, thank you, thank you to St. Anne’s school, all the kids who worked so hard and to the many very generous sponsors! The money was donated to the brain tumor research unit for funding of current research. Doctor Ellenbogen even came and was very excited about the donation. He said there are so many exciting findings going on in this area, and he already has a plan for how to use this money.

Many thanks to Giancarlo Martino, eighth grade student council representative, Pam Sturgeon, student council advisor and Pat Durand school principal for your tireless efforts in making Miles 4 Max a tremendous success! You are Superstars!

As well as Max is doing, we have to be realistic about his recovery. There are still so many things he has to re-learn, so much of his strength is gone – and so much of what was so easy is now not even possible for him. This is and will continue to be a very tough fight; one that very few will ever fully understand.

Basketball is even losing some of its attraction for Max. He’s still dribbling; in fact that crossover is looking pretty good! But he doesn’t have the strength he used to for shooting and more and more we’re having to coax him into playing, shooting and just having fun with many of the things that have always come so naturally. Last weekend he stood just below the hoop and hoisted up a shot. It fell short and he tried again-too long this time. The tears weld up in his eyes- he looked completely lost, alone and terrified. Kind of-like his best friend had just left him. I gave him a big, big hug… “It’s Ok Max, you’re doing great, it’s all going to come back” I didn’t know what else to say. He wanted to quit but I didn’t let him- he was actually doing really well. Eventually he made a shot. The ball fell through the net and onto the ground. Max just walked away.

Then there’s baseball. Hitting a baseball has become one of the most important things in Max’s life. It’s amazing what he is able to do. Check out the video on the website at the batting cage. Those are real balls, that’s a real bat and they’re really coming fast. I tried it and honestly I connected about one in five times. Max is using one eye! I’ve probably watched that little video fifty times.

On Saturday, July, 3, Max completed the second round of maintenance therapy. Once again this was a three night stay at the hospital and things went just fine. Max couldn’t wait to get out- On Saturday he woke up at 5AM –“come on Dad let’s get packed up-we gotta go!”

On Sunday Max pushed his brother’s stroller in the annual 4th of July neighborhood parade! He even won an award for hardest worker (and how!). It really made him feel good.

Max’s birthday is on Wednesday, July 7th. He’ll be nine! For his party on Thursday he’ll be taking some friends to do some mini-golfing at one of his favorite courses!

Thanks again to all of our dear, dear friends and family who continue to keep Max in your thoughts and prayers. It means so much, it does matter. Prayer is the medium of miracles. Bless all of you.

Blessings and Light!