Yesterday was an incredibly tough day. Cy started chemotherapy and immunotherapy for the first time. We had been warned multiple times about the side effects of immunotherapy, but no amount of preparation can truly prepare you for the experience. Getting admitted to the hospital was straightforward, and we came in ready, but around 4 p.m., Cy woke up screaming in pain.
Our child, who has already been through so many surgeries, needle pokes, and hospital stays, was in unbearable pain and couldn’t be comforted. I don’t want to hear anyone say, “You’re putting your child through this,” because without the treatments Cy has already received, he wouldn’t still be with us.
The doctors told us that the first dose of Dinutuximab, the immunotherapy drug, is the hardest. It specifically targets neuroblastoma cells in the bones. While Cy’s soft tissue and bone marrow have responded well to chemo alone, the bone lesions still need additional treatment, and there are many of them.
As I’ve mentioned before, neuroblastoma is a rare and aggressive cancer in children. Most families, like ours, have never even heard of it until their child is diagnosed. By then, the cancer is often already spread.
Kids are incredibly strong, and Cy has always been one of the strongest. Our medical team quickly got his pain under control, and the night went much better, for which we are so grateful. However, Cy did spike a fever of 102°F overnight, which is another common side effect.
Now it’s morning, and we’re sitting together, watching a movie, and sharing some chocolate milk. He told me that I’m not allowed to go back to sleep, but it’s okay if I want to scroll through TikTok.
I’m so proud of you, my little fighter. It was excruciating to watch you suffer and not be able to fix it. Keep pushing through today, okay? I’m so sorry you have to endure all of this. I love you, and I’m so incredibly proud of you.
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