It's Not About the Why, It's About The Win

An Actual Update

It’s been awhile since I’ve actually updated about how the boys are doing with their recoveries. We’ve had a busy few months, sort of a good-news-scary-news-but-everything’s-going-to-be okay sort of  roller coaster ride.

Let’s start with the good news. Let’s start with Michael. In August Michael had a complete neuropsychological evaluation. By definition, this series of tests assesses how a person’s brain functions, which indirectly yields information about the structural and functional integrity of the brain. The doc who did the exam had never met Michael before, and I always like to hear what a newcomer has to say. After all was said and done, the doc told us that, based on Michael’s history and the severity of his injury, his recovery is “absolutely extraordinary.” Very nice – I so like to hear things like that. There weren’t too many surprises in the report, but the doctor did really shed some light on how Michael’s post-accident brain works and what we can do at home and especially at school to best help him overcome his deficits. I’ve been so pleased with the support we’ve received from his high school, and that really lifts a heavy burden off my shoulders.

In September, Michael had a follow-up visit with his main traumatic brain injury doctor and she gave us the best news we could hear – “As much as I love seeing you guys, I don’t think I need to anymore.” As Michael would say, “Sweet!” Initially we were told she would need to follow him for at least five years, so to be released after two is another testament to his extraordinary recovery. She did make Michael promise to continue to stay away from any potentially dangerous activities, but at 15 I can only hope he takes that to heart. The only not awesome news related to Michael’s recovery is that he’s having weird and severe pain from his damaged facial nerve. It’s not constant, but seems to be happening more and more frequently. Anytime he smiles too big, laughs a lot, or does some crazy heavy metal screaming, he gets a shooting pain from the nerve that stops him in his tracks. His TBI doc didn’t know what to make of it, so we’ll be following up with the doctor who did his nerve surgery to see if he has any ideas. God knows we don’t want anything to stop Michael from laughing or smiling as best he can, though the screaming isn’t all that important in my book. At any rate, something’s not right there, so that’s on our list of things to figure out for Michael.

Outside of school and doctors, Michael and a few of his head-banging (not too literally, I hope) friends are in a band, and they recorded a four-song demo a few weeks ago. Huge thanks to his friend Gabe’s parents and Globalsound Studio for making this happen. It’s been a bit of a stressor for him to juggle the band with his schoolwork and other commitments, but overall it’s been a huge confidence booster, so we’re very grateful for that.

Okay, on to Andrew. He has really kept us on our toes lately, not that we would expect anything less of him. The school year started out okay, but as of right now he hasn’t attended a full day of classes since Sept. 2. Not good. His teachers have been wonderful about keeping him up to speed, but I am definitely worried about it catching up with him eventually. He wants very much to be there and be successful, but it just seems like the cards have been stacked against him for a while. He started out with a bad cold early in the month that he just couldn’t recover from, and that turned into pneumonia which pretty much knocked him out. He’s also been having a lot more pain than usual, often debilitating, especially in his back. His pediatrician was really on the ball and decided to do an x-ray of his back while they were checking on the pneumonia. Long story shorter, this led to a huge amount of drama I won’t bore you with here. After Andrew endured more MRIs in one day than most people will have in their lifetime, today we got the answers we’ve been waiting for. Under the circumstances, it’s pretty good news considering how bad the news could have been.

Andrew has a disease called Avascular Necrosis (AVN), which in the simplest terms I can muster means the blood supply to some of his bones has been cut off due to the steroids in his treatment, leading to bone death. It can be a very painful condition, and in its most severe form, it can require joint replacements and other invasive surgeries. Fortunately, for Andrew right now, no joints are affected and the only occurrence of the disease is extensive in his tailbone and lower spine. This is causing him significant pain, but is not likely to lead to any long-term damage. There’s really no way to treat AVN at this stage, but steroids have been nixed for now and we hope that will stop it from occurring anywhere else and eventually decrease his pain.

As far as his leukemia treatment goes, we have no huge concerns there. (Whew!) He had a short hold from his at-home chemo last month due to low counts, but he’s slowly recovering and we’re slowly increasing his dosages. We find ourselves watching platelets again as they’re pretty low, but that’s likely just because he’s still getting over the whole cold/pneumonia thing. So, we’ll play the dosage adjustment game until we get him back where we want him. After today, he has nine monthly appointments to go, and only four more spinal taps. Love to see both those numbers in single digits, woo-hoo!

So… there you have it, an actual update. Imagine that! A huge thank you to the many people who continue to keep the boys in their thoughts and prayers. Even when this ride gets bumpy, we never lose sight of what we know is truly important. The boys are here to take the ups and downs as they come, and we all have an amazing support system in our families, friends, and medical teams. At the end of even the most challenging day, we have all that really matters right here in front of us. That makes us one of the lucky ones, and there’s not a day that I don’t both appreciate that and hope and pray for healing and peace for those I know who continue to struggle with grueling treatments, grief, and fears no family should have to face. It’s so true – every day is a gift.  Share it wisely.