May 24th
We’re now about four and a half weeks into Max’s six week break from treatments. Overall things are going well and compared with the previous few months it’s not nearly as eventful. Every single day is a challenge though, there’s no way around it.
Max is still pretty weak and tired a lot of the time but he has been able to go to school full days when he doesn’t have physical therapies and half days when he does. His balance and walking are a lot better even though he still can’t really run very well and he gets tired out pretty quickly. Amazingly, his blood has pretty much bounced back to normal levels. There are good days and not so good days, but overall his recovery has been quite amazing.
Max continues to try to do most of the things he’s used to doing, the things every other second grader does and that he’s always loved so much. Who would blame him though if he just wanted to stay inside, play Xbox, watch TV, read – If he just wanted to hide? Wouldn’t most people? He’s lost all his hair, he wears an eye patch, he even walks different. There is absolutely no other kid in Max’s world that looks, acts, walks or talks like him. But there he is, on the baseball diamond, on the playground, in the front yard, in the pool or standing up in front of his class giving a presentation.
Last week he fell on the playground getting out of the car before school right in front of a bunch of his classmates. It looked like it hurt. He got up, fought back his tears, forced a smiled back at us and walked over to stand with his class.
It’s amazing, it’s heartbreaking. It’s inspirational, it’s not the same.
We keep reminding ourselves that we do have a lot to be thankful for. His progress does seem to have slowed though and we have to admit we were hoping or expecting to see a bigger improvement over this break. The doctors told us that there are often delayed effects of radiation and chemotherapy. Sometimes weeks later. Max mostly just seems a lot more drained and fatigued than we had hoped at this point.
Who knows though, we still have a week to go and we continue to look for the positive events every day. Like all kids, every day holds ups and downs. Somehow there are always some of each.
Max has been working with one of his baseball coaches, one on one, on hitting and throwing. It’s been a great way for him to have fun and to work on something he loves at his own pace. It’s fun to think about how far he’s come in only two months – from sitting in a wheelchair swinging a toy bat at a hollow ball pitched from about 10 feet away, to now standing at the plate hitting a regular baseball with a standard little league bat pitched from about 15 yards away - hitting pretty hard too! We’re so thankful to his coaches and the league for all their support!
On Friday May 21, Max’s school organized a fund raiser for brain tumor research at Children’s Hospital called Miles for Max! It was extraordinary – the entire school took time out to participate in the fun run and in raising money. The Mariner Moose even came to help get things kicked off! Max got to cut the ribbon to start the event and then helped hand out refreshments as his friends and classmates completed laps around the quarter mile course. One of the local grocery stores even put up lettering on their awning in support Miles for Max.
Once again we are overwhelmed by the support from all of you throughout our community, our school and our church - so many people pulling together and sharing their Love and their Light with Max and with us. Together we are so much, we have so much power. You are lifting us up. We love all of you. Thank you.
On Wednesday, May 26 Max will have his first post treatment MRI and spinal tap. The doctors will be looking at the results to determine how well the radiation and chemo therapy has done at making Max better. It feels like a big deal. We’ve had more than enough bad experiences with tests like these and we battle worry and fear a lot. 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!
Max is starting the next round of treatments, “maintenance therapy” on June 2. We’ll write more next time about what that involves and what we are expecting. For now we’re trying to focus on getting as much out of the last week of this break as we can.
Thank you again everyone for all you have done, for your love, your prayers and for sharing your Light with us.
By ourselves we are like a single finger on some cosmic hand – we can only point. Together, with God’s inspiration we connect like millions of fingers on millions of hands. We can build houses, grow food, create symphonies, build bridges and reconstruct the world. We can hold babies and we can pray. We are masterpieces for God’s creation and we are a force - a force of Love.
God Bless
