Matthew White, BD 11-24-93

3/24/01 Update: 5 yr. mark, walking, reading, and breathing!

Folks, we have surpassed the 5-year mark from the diagnosis of Matt’s brain tumor! In honor of that event, Matt had a ceremonial visit with his oncologist for a good "look him over, reassure us he is perfect" visit. We also ordered the whole Peter Pan beanie baby set from e-bay for him. This, my friends, was the ultimate celebration in Matt’s eyes!

And he is walking! I know, I know, I’ve said he’s been walking since last year. But now I mean he is WALKING! He slips his forearm into his crutch and away he goes. No one standing by him, no one holding his other hand, no gait belt draped around his waist. One day while we were at the library he had walked away from me without my realizing it. He was walking up and down the rows of books and videotapes as he looked for his favorites. He was also carrying a videotape in the other hand as he went from aisle to aisle. This is another remarkable feat as his strength has always been very diminished. And there he was, walking and carrying something. Very incredible!!!!! I will have to say that his walking is still a bit unsteady, but give him a motivating reason to be somewhere, and he’s gone, walking with confidence and stability. The school continues to have him use his walker in the classroom, which gives him the greatest amount of independence and safety. On occasion, they will have him use his cane when assisted by a teacher’s aide. Perhaps with a little more time, they will use more opportunities to have Matt walk with his cane instead of the walker. More practice at school will make everyone more comfortable. One more bit of big news is that he is also taking his own steps. We couldn’t believe it the first few times he started stepping from one place to the other – from the kitchen counter to the table, from the doorway to his bed, etc. Maybe he will be able to walk by himself (without cane) again someday, if even for short distances. Wouldn’t that be totally cool? But we have already been gifted with the fact that Matt is walking at all. Our highest hope was to have him stand on his own feet and get somewhere and he is doing that. We won’t be greedy and ask for more.

"Mom, does Woody (Toy Story ) start with /W/?" Matt asked me one afternoon. I jumped off the computer chair and said, YES! YES! Woody starts with W, just like White, and wonderful and Winnie the Pooh! Show me /W/"! There it was, a big, beautiful W typeset in his program souvenior from Toy Story on Ice . We giggled with glee and now we look for W’s everyday. This was the first breakthrough in naming letters, and since that day, he knows other letters like /a/, /b/, /o/, /x/. He can pick out letters in Blockbuster and on a Marshmallow bag – 2 very important words to him. Maybe it is realistic to think that by next year he will be capable of handling a short list of sight words, as long as there is a Disney word or two thrown in for good measure!

Matt’s medical recovery is still a work-in-progress. His lungs took an awful beating during treatment. The oncologist and pulmonologist feel his lungs are still healing and where the average kid doesn’t need treatment for colds and bronchial viruses, Matt does. As of this past fall, Matt no longer needs oxygen for sleep. Hooray! His visit to the pulmonologist today was extremely rewarding. The doctor took off his stethoscope and with big eyes said: "He sounds GREAT!" A comment like this from this doctor is just as big as saying you won the lottery!!

It has been a very difficult journey these past five years, but not unlike any other child who has been diagnosed with cancer. There have been many highlights and many successes. There have been many heartbreaks and tears. We celebrate everyday; always knowing that tomorrow could change things again in an instant. We realize that Matt is making steady but slow progress. It took the wisdom of an anesthesiologist one day to tell me that Matt will always be Matt, never to be compared to any other child. How true it is!