Callie received her first dose of Spinraza this past Wednesday. Although there were no complications from the procedure, things didn’t go as planned and it was a traumatic experience.
After Spinraza was approved by the FDA a year ago, Nathan and I didn’t immediately pursue the treatment. We thought a lumbar puncture (the required route for the administration of the medicine) would be too stressful for Callie. Her body was so damaged by SMA already, there was not much reason to believe the benefits would outweigh the risks.
Eventually, we decided we should involve Callie in the decision. Yes, she’s only 8 years old, but it’s her body and her life. Anyone who knows Callie, or has kept up with our family, knows she’s terrified of all medical things. But she still wanted to try this procedure, knowing it would be uncomfortable and that there was a chance it might not even work. We were sure to point out that even if it did work for her, she still wouldn’t be able to stand or walk. We explained it might help her swallow better, hold her head up better and maybe breathe more easily.
We knew she would be anxious and upset — that’s simply how it is with most medically fragile children. But after hearing her cry for hours leading up to the procedure, then listening to her scream, “Why am I doing this? I just want to go home!” when the radiologist punctured her back, it was a crushing reminder of why we’ve chosen minimal medical interventions.
Callie will need 3 more doses of the Spinraza before we’ll know for sure whether it will help her. Despite her protests, we plan to have her complete this first cycle, with a sedation plan firmly in place before her next dose to minimize her discomfort.
We’re grateful for everyone’s support and will post more updates during this treatment cycle.