Dinutux Round 2

As we prepare for Round 2 of Dinutuximab this week, we wanted to give everyone an update and first say thank you. Your prayers, messages, meals, gift cards, donations and constant encouragement have carried our family through some of the darkest days. We truly could not do this without you.

I'm not going to sugarcoat it...Dinutux has been, by far, the hardest part of Cody's treatment so far.

For those who have asked what this phase does, Dinutuximab is an immunotherapy that helps Cody's own immune system recognize and attack any remaining neuroblastoma cells that may be hiding after chemotherapy, surgery, transplant, and radiation. Along with it, he receives 14 growth factor (GM-CSF) injections before and during the infusion to activate and strengthen his immune cells so they can work alongside the antibody. After each cycle, he completes 14 days of isotretinoin (13-cis-retinoic acid), which helps force any remaining neuroblastoma cells to mature and die instead of continuing to grow.

It's an incredibly powerful combination...but it comes at a cost.

The nerve pain from Dinutux is unlike anything we've ever witnessed. Despite very high doses of pain medication, Cody described it as feeling like his entire body was on fire, while at the same time his bones ached with an intensity that is impossible to put into words. Watching your child hurt like that, knowing you can't take it away, is something no parent is ever prepared for.

Even after the infusion ended, the road wasn't over. The recovery was brutal. The withdrawal from the pain medications, the depression, loss of appetite, significant weight loss, exhaustion, and body aches lingered for days. It was heartbreaking to watch him work so hard just to feel like himself again.

Because of how severe his pain was during Round 1, his team has already made changes. We will be admitted Thursday evening, and they'll begin Dinutux Friday morning so the infusion finishes before bedtime. Most importantly, they are increasing his pain medications by about 40% right from the start, with the hope of staying ahead of the pain instead of constantly chasing it.

We know exactly what's coming this week, and if we're honest...that makes it harder in some ways. But we also know that every infusion is another step toward healing, another step toward giving Cody the best chance at a cancer-free future...IN JESUS NAME.

Please continue praying specifically for:

As always, during admission, meals or DoorDash gift cards are incredibly helpful. They allow us to stay at Cody's bedside and focus completely on helping him recover instead of worrying about food. We are so grateful for every single act of kindness.

Most of all, thank you for praying. We feel those prayers. We have seen God's faithfulness over and over again, even in the hardest moments. We don't always understand His plan, but we know He has never left us.

"Though you have not seen Him, you love Him. Though you do not now see Him, you believe in Him and rejoice with joy that is inexpressible and filled with glory." 1 Peter 1:8

Our joy isn't found in an easy road or good circumstances. Our joy is found in Jesus...our steady hope, our strength, and the One who walks beside us every step of this journey.

We love you all. Thank you for carrying us.