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.
Callie, you are one more brave little ladie, and so pretty. You remind me of your Mother when she was younger. We are praying for you.
Callie, you are a very brave girl and being afraid of something, especially something new, is normal and understandable. I hope that the treatments become less scary and that they work well for you. In the meantime, Santa is coming to visit in a few days and he knows what a wonderful, courageous girl you are.
You are such a strong and brave little girl. Praying that this is just the treatment the Lord will use to help you. I know many have to touched by the faithfulness of faith in you parents. Press on sweetie.
Callie, you may not remember us, but we know you. We love you and your Mother and Daddy and Isaac and Ezra and Peter. You are a brave girl to have decided on this treatment when you didn’t really know how it would go. We pray for you.
Callie, You are very brave. Most adult would have a very hard time with the treatment you decided to try. May God BLESS you & your family as he leads you through these days ahead. Prayers for you, mom, dad & brothers to have a Wonderful & Happy Christ filled Christmas. Much love and prayers sent your way.
Callie….I think about you often and include you in my prayers. My grandson Nick has leukemia and has been in treatment for 6 years. Complication have taken the sight from his left eye. He knows the horror you faced with the needles as he has a spinal tap …. sometimes twice a week. I know your Grandmother and Grandfather. They live right up the road from me. I hope that in spite of all, you have a very good Christmas. Love you.
JESUS, allow your baby girl to not only receive the follow up treatments, but I pray that they would benefit her even MORE than was expected. Give this precious family Your guidance and Your peace.
Callie you are the TOUGHEST girl I know. When I grow up I want to be strong like you ❤️ Can’t wait to see you and Foxy Monday have a fun weekend love!!
Wow, Callie! I bet that was scary, but you’re the bravest little girl I know. Tuesday, I will be having 3 long needles stuck in my knee…it’s called a nerve block, Mommy can explain that. When they get ready to do it I’m going to remind myself how brave you were and I’m going to be brave just like you. We can all learn something from the new things you try, Callie. You’re a very special little girl and we love you so much. Hope Santa brings you extra surprises 🎄🎁
It’s isn’t a sign of weakness to be afraid, yet most people think so. Bravery is in continuing, whatever the path. I love and miss you all, especially Callie.