Dx: Feb. 6, 1996, medulloblastoma
Update: July 2, 2006
In so many ways an update is so overdue to share the good news of Matt’s continued recovery and survivorship!! His renaissances and freedoms continue to mount as he forges ahead with independence and maturity!
Finding his way through the darkness may be first misunderstood as to think that Matt is struggling…….not the case at all! This figurative phrase of speech was just witnessed in the literal sense a mere 60 minutes ago. He and I quietly left a dark theater so he could use the restroom and I took advantage of free refills on the ridiculously-priced concessions! Matt finished in the bathroom before I got back to meet him and miracle of miracles, he navigated his way from the bathroom to the correct movie and through the darkness to his seat next to his sister! I was left out in the lobby making sure I found the right theater and here he was already quietly seated in his spot. This is quite a remarkable feat! His spatial awareness is still quite challenged, especially in places such as darkened theaters!
And such as this, Matt continues to amaze us and demonstrate that the recovery process has not yet met a plateau. He continues to astound us with what would appear to be very minor and insignificant accomplishments to the ‘regular’ mom and dad, but what are humongous achievements for him and for us! Things such like accurately taking phone messages, calling me from outside when he burnt the hush puppy he had in the microwave, getting himself off the schoolbus, crossing the street and getting himself in the house, setting the DVDs to foreign languages so he can teach himself new words, writing pretend TV scripts on his AlphaSmart, using one-liners from Sponge Bob and the like to use in context of conversations, questioning the origin of names and places, putting us in the position to help him pursue his passions: baseball, golf, theater, and writing (just how many words can we spell in one day without losing our mind??). It gets sort of crazy around here when we have to ask his brother or sister to hang around to spell while Matt busily taps out his scripts or his desire to search something on google!!!
Tomorrow he embarks on a week-long day camp because it’s Christmas in July! Then it’s off to Camp One Step for a full week at sleepover camp!! This will be his first big experience sleeping away from home without familial support. He’s ready! The oncology camp is ready for him!!! We’re ready for him to experience this!
But one of our biggest transitions will happen as he starts 6th grade as a “middle-schooler” this fall. Middle school is a challenge in the best of circumstances for most kids. Add in Matt’s cognitive deficits and physical challenges it will be a force to be reckoned with for sure! But we’ve done our homework, made many visits with him to the school, feel confident he will be in the right hands in a team-teaching full inclusion setting, his IEP will ensure the necessary supports are in place, and his own determination will surely make it a successful experience!
Matt will navigate the school hallways with his arm crutch, an early hall pass and a watchful eye of a paraprofessional. The academic accommodations/curriculum will be handled by the special education teacher in the general education setting. Looks like other than someone carrying his lunch tray to the table, he will manage the whole cafeteria chaos on his own!! He has already demonstrated he can do this on one of our visits.
But who will handle facilitating some friendships for him???? This seems to be the biggest piece lacking in his little space in this world. He has made many friends at school over the past 5 years, but have they become friendships? No, not really. Kids are glad to come over and do things with him….swim, driving range, go to a play, etc, but there hasn’t been any reciprocity. In some cases, that’s ok, but in others, it would be nice to have a buddy call him to do something or go somewhere once in a while. I really don’t think kids his age know to do this. Matt’s physical limitations (running, playing active ball games, or understanding fast paced video games just don’t work for him!) create great lags between him and his peers.
It would be my dream that these kids’ parents would see how they could foster these relationships. They could make suggestions to their kids to “call Matt to go to the show with us….go to the bowling alley with us…the park, after school, to hang out, etc. I think Greg and I have been visible enough to these parents to show that we are there to support this and help make it “work” so it’s a mutually beneficial experience. It will be harder to do this in middle school since it’s a whole new world, new people to meet, new teachers to work with, etc. In the meantime, we will continue to foster his passions and interests.
It’s been a very encouraging (ok…well maybe not the first 5 years!) 10 years since Matt has been recovering from his brain tumor. He is making great strides in his development, all at his pace and ability. Matt will always be academically and physically delayed. The damage from the tumor, the surgery and the treatment has been responsible for this. But he has had such a remarkable medical outcome that it is with humble gratitude that we feel blessed, deficits and all.
Matt is followed annually be the neuro-oncology team at the Children’s Hospital at UW-Madison. We are doing MRIs on an every other year schedule since the results have always been NED (no evidence of disease). Matt does not take any over the counter or prescription medications. He is, however, being monitored by the pediatric endocrinologist. Matt’s slow growth rate is probably going to require intervention as he moves further into puberty. Outpatient therapies have been eliminated because it seems we’ve replaced it with recreational activities! There wasn’t enough time anymore to work in regular therapies!!
Most recently, Matt has started playing softball with a Special Olympics team. He loves it and whispered during an inning change the other day: I am in the game!
Yes, sweetie, you are in the game!