Cody Update 💛

We are finally home after Cody's first round of Dinutuximab, and honestly, it was horrible. There are no other words to describe it.

The pain was excruciating. The nerve pain was unlike anything we've experienced throughout this journey. The fatigue was overwhelming. Watching your child hurt and knowing there is very little you can do to take it away is a helpless feeling that is difficult to put into words.

For those unfamiliar with Dinutuximab, it is an immunotherapy designed to help the immune system find and attack neuroblastoma cells. The challenge is that the target it attacks (GD2) is found not only on neuroblastoma cells, but also on healthy nerve tissue. As the medication binds to those nerves, it triggers significant nerve inflammation and pain. It is widely considered one of the most painful treatments in pediatric oncology, which is why children require intensive pain management throughout the infusion. At some hospitals, children are even sedated during the infusion (whole other story).

One of the hardest parts for us was seeing Cody become withdrawn and disassociated. Our normally sweet, funny, energetic little boy seemed to retreat inward. This can happen during Dinutuximab for several reasons. The severe pain itself is exhausting, but the medication, inflammation, sleep disruption, stress on the nervous system, and the significant pain medications required to manage treatment can all contribute to children appearing distant, disconnected, emotionally flat, or simply not like themselves. It was heartbreaking to watch.

He is also still struggling with going to the bathroom, both with bowel movements and bladder function. Neuroblastoma, surgery, radiation, and the treatments themselves can affect the nerves that help regulate the bladder and bowels. When those nerves are irritated, damaged, or inflamed, children can have difficulty sensing when they need to go, fully emptying their bladder, or coordinating normal bowel function. It continues to be something we're monitoring closely and praying improves with time.

We have four more rounds ahead of us. We have been told that many children tolerate later rounds better than the first, and we are praying that is true for Cody. At the same time, we've learned not to place our hope in predictions or expectations. We are taking this one day, one treatment, and one step at a time.

For now, we are simply thankful to be home. Thankful for our own beds. Thankful for rest. Thankful for recovery. Thankful for a little normalcy before we head back again.

We also want to thank every single person who has prayed for our family, sent encouraging messages, and blessed us with DoorDash gift cards. You truly have no idea how much that helps during these long hospital stays. When your days are consumed with medications, rounds, procedures, alarms, labs, and simply trying to help your child survive another day of treatment, not having to think about where the next meal is coming from is an incredible gift.

We continue to trust God in the middle of all of this. Some days that faith feels strong. Some days it feels like a choice we make minute by minute. But He has been faithful in every season of this journey.

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18 ❤️