Duchenne clinical trials show me how mature my sons have become
3 days of clinical appointments went well for 3 sons who have DMD
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I recently took my three sons with Duchenne muscular dystrophy (DMD) to a hospital in Denver for three days of a clinical trial. One day was for each of them — Max, 18, Rowen, 15, and Charlie, 13 — and then they each had a day of cardiac appointments. The week was as successful as it could possibly be.
Max started to have kidney stone-like pain toward the end of the week, though, which resulted in an unplanned renal ultrasound and a new nephrologist.
Charlie, who has struggled with anxiety about the trial’s infusions, had us digging deep to figure out how to help him. We did so with the help of virtual reality goggles. He went fishing in virtual reality mode, forgot about the infusion, and we got through it.
Rowen needed an electrocardiogram before being dismissed from his infusion day. He was fine.
That may seem like a lot, but the reality is that with three teenage boys with DMD, it could’ve been worse. So I count my blessings and rejoice that all three came home with relatively good reports.
All grown-up
Last week really hit me in the feels, stirring up a lot of thoughtful reflection. Any parent can relate to me seeing them in a new light this week. They aren’t little boys anymore; they are young men.
When we started this Duchenne journey, they were still little boys. Charlie had his first echocardiogram before his first birthday. Rowen and Max have spent significant time in clinical and hospital settings since they were 2 and 4, respectively.
As the experiences of last week unfolded, I thought to myself, when did they become so grown-up?
Charlie was so nervous about his infusion that once it started, he cried and wanted to stop. We stopped, and the doctor told us that if we finished the infusion prematurely, we’d have to end the trial for Charlie. It would’ve been the second occasion he’d had a hard time with an infusion, and we didn’t want him to be sad. But Charlie decided on his own to continue. I was in awe of his maturity at just 13 years old.
When Max’s issues started, we were in the middle of a Denver snowstorm, and many doctors weren’t at the hospital. On that Friday morning, Max had a telehealth appointment with his new doctor. Now that he’s 18, all of his medical information goes to his MyChart account, where he has to log in to view it.
Max started the appointment independently in the back of the van as I drove to the hospital for in-person appointments. He answered the doctor’s questions, described his symptoms, and reviewed test results. He’d never done that independently, and I saw what a responsible young man he’s become.
When Max needed to have his renal ultrasound, Charlie hadn’t been dismissed from his appointment yet. So Rowen offered to wait with Charlie. Rowen knew where we would be and promised to bring Charlie down once he was dismissed. What an incredibly caring gesture for a 15-year-old! He took responsibility for his younger brother so that I could be with his older brother, who needed me most in that moment.
I was proud of each of them for their maturity as we navigated the week, but it also stirred up some doubt.
The boys have been in clinical trials most of their lives. Have I stolen from their childhood the time that travel and participation have required? Would they have been happier to have that time at home to play and have a typical childhood like their peers? How much have these trials helped the boys?
I started comparing them with other guys with Duchenne who have spent less time in trials. Were those other boys happier?
Then I stopped asking myself questions that no one has the answers to. I do know that my sons are doing very well, given their diagnoses and ages. I know they are happy, and I must trust that I did my best. I’ve always made decisions with my sons and husband, using the information that is available.
My sons have had to grow up in ways I wish they didn’t have to do, but they’ve grown into people I’m proud of. I will give myself peace of mind given the maturity they’ve shown me last week and will remind myself that we’ve made the most of it, making all of the decisions with the best possible life in mind.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Carole Mayes
You have done a brilliant job with your boys. My boy David who had duchenne was amazing he lived till he was 33, he had his struggles but never complained. We miss him terribly he would have been 40 in February. David was an inspiration to his peers younger duchenne boys.