Sunday, January 28, 2018

Happy Birthday

Today Callum is one day into his 13th year on planet Earth. He had a good day yesterday, celebrating his 12th birthday with presents, a movie out at a fancy "VIP seating" theater (Maze Runner 3: The Death Cure), and dinner and cake with his oldest friends, two sets of twins whose parents are old and great friends of ours. It's so awesome to see Cal with these great kids, all of whom have grown up with each other. The fact he's in a powerchair, with his activity constrained in the ways it is - it's just a fact of life for them, they got past the difference forever ago and it's never stopped them seeing him as a person, an equal, a friend. It really was a great day.
All week long, leading up to the day, Cal was talking about how he's "officially entering puberty" on Saturday. This matter-of-fact statement was cracking us up, but there's also a bittersweet side to it: he is getting older and if he's not quite left behind the things that made his younger childhood a beautiful thing to experience ... well, it won't be too long. Though we are proud of and continually amazed by the young man that's emerging. So glad he is still with us and stronger than ever.
Middle School is not great for anyone - we are reminded of this in literally every conversation we have with anyone on the subject - and so far that's certainly true for Cal. 1200 kids flailing their way into puberty together ... shudder. But there are highlights; his new classroom helper is our old friend Brandon, who, as a student, did OT work with Cal a few years back. It's so important to have someone in that spot who cares about Cal and is on his side. And Cal loves his Engineering class, where he's learning to use a 3-D printer among other skills ... and he has made his way into the calmer and more focused environment of a gifted and talented English class. Before that happened, there were plenty of times when 6th grade seemed mostly like a struggle against chaos, where a good day was one with the least anarchy in the classroom and the teachers survived with their sanity somewhat intact. There's still a bit of that, but moving to G&T English helped immensely. I think he has good teachers, and they recognize his intelligence, and that he has a lot to contribute, but they are fighting to make any positive impact on overcrowded classes in a deeply dysfunctional system. We are so lucky that he's been able to continue with the same tutor over the past few years for the at-home part of his school days. He does care a lot about learning, and has been keeping up good grades ... so school may not be ideal, but it's going about as well as it can. Which I think is true for a lot of kids in Middle School.
The biggest news for Cal is that there is now a FDA-approved drug to treat SMA: Spinraza. The price tag is insanely high, but thanks to great timing on the part of Cal's neurologist Dr. Crawford, we were able to get Cal into a free drug program sponsored by the company that makes the drug. Beyond the cost, there's also the logistics of administering the drug - it's given by lumbar puncture, and after 4 "loading doses" given quite close together, he will have to have it 3 times a year for the rest of his life. That's 3 lumbar punctures per year, forever. For the initial injection, Cal actually first needed a small surgery, a laminectomy, to make a window into one of his vertebrae so they could reach the spinal cord to administer the drug. For kids much younger than Cal, 6-month old Type 1 children who have just been diagnosed, Spinraza is literally a miracle drug. Some of these very young children go quickly from a state of total impairment, to hitting all the milestones expected of an able-bodied child - it's as if they simply didn't have SMA. For Cal, who had 10+ years of severe disability before this drug was even available, the results are less clear. We have noted very small changes in his mobility, which are wonderful to see. When he can wiggle a foot in a way he couldn't before, or we can feel that the pincer grip between his thumb and his hand is a little stronger, it's an indescribable feeling. But we are also good at managing our expectations; nothing in this has made him (or is likely to make him) any more self-sufficient. However, we are told that as long as he receives this drug, the degenerative part of SMA - the specter of things getting worse - will be kept at bay, and that is a source of tremendous relief. And we can also hope a little for the future; in 2006 when Cal was diagnosed, this drug was only a concept in someone's notebook, a dream the realization of which we were told Cal would not likely live to see. We're lucky to live in a time when changes like this happen more and more rapidly, and there are other possibilities for SMA on the horizon.
Thanks to all who continue to check in on this blog, even though it seems to have turned into an annual thing ... thanks for keeping Cal in your thoughts.