Yesterday was an incredibly difficult day. Cy began his first round of chemotherapy and immunotherapy. We were warned many times about the possible side effects of immunotherapy, but nothing truly prepares you for experiencing it firsthand.
Getting admitted to the hospital went smoothly, and we arrived ready for the long day. But around 4 p.m., Cy suddenly woke up screaming in pain.
Our child—who has already endured more surgeries, needle pokes, and hospital stays than anyone should—was in unbearable pain, and nothing could comfort him. And no, I don’t ever want to hear anyone say that I’m “putting my child through this,” because without the treatments he’s already had, he wouldn’t still be with us today.
The doctors explained that the first dose of Dinutuximab is usually the hardest because it attacks neuroblastoma cells in the bones. Cy’s soft tissue and bone marrow have responded to chemotherapy alone, but he needs additional help to fight the many lesions in his bones.
As I’ve shared before, neuroblastoma is a rare and fast-moving cancer in children. Most families—like us—have never even heard of it until their child is diagnosed, and by then, it has often already spread.
Children are incredibly strong, and Cy has always been one of the strongest. Our care team acted quickly and managed to get his pain under control, and thankfully, the rest of the night went much better. For that, we are truly grateful. He did spike a fever of 102 during the night, but that’s another common side effect.
Now it’s morning. We’re sitting together watching a movie and sharing some chocolate milk. He told me I’m not allowed to go back to sleep, but he said it’s fine if I want to scroll TikTok.
I’m so proud of you, my little fighter. Watching you hurt and not being able to fix it was heartbreaking. Please keep pushing through today. I’m so sorry you have to go through this. I love you, and I’m endlessly proud of you.
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