I don’t even know where to begin with this post.
Before Will was taken back for his CT scan, Jason laid his hands on him and we prayed. He asked God to reveal Himself in a way that Will could feel His presence. Looking back now, I truly believe He did.
Today, before they wheeled him away, the doctors sat down with us and asked one of the hardest questions parents can ever be asked. If Will’s heart were to stop because of everything his body is going through, what would we want them to do?
Nothing prepares you for that conversation.
We have known we’ve now been off DeltaRex-G for two and a half weeks. Every day that passes brings the fear that his cancer has had the chance to explode throughout his body. It has felt like we’ve hit a wall.
No children’s hospital since we arrived in CA has been willing to partner with the Sarcoma Oncology Center and take Will as a patient if he needed care outside of just the medicine because DeltaRex-G is not yet FDA approved or covered by insurance. Our entire goal has been to get his platelets up, get him discharged, and immediately get him back on treatment at the Sarcoma Oncology Center for any chance to survive.
After today’s conversations, we were facing a heartbreaking reality. Rady’s was preparing to focus on keeping Will comfortable while helping us arrange medical transport back to Alabama so he could be surrounded by the people who love him most. We had already spoken with our oncologist at Children’s of Alabama, and plans were beginning to come together.
It felt like every door had closed.
I have apologized more than once to our healthcare team today because the truth hurts. As parents, sometimes the hardest part is hearing that someone has given up…it’s hearing that the medicine was working but because we can’t get him stable enough to leave he won’t get that chance to continue.
Then God moved.
Around 6:00 this evening, as Will was on his way to CT, my phone rang.
It was Dr. Gordon.
She told me she had just received a call from a chief medical doctor at Rady Children’s Hospital. Together, they are filing an emergency appeal with the FDA to allow DeltaRex-G to be administered inside Rady.
Dr. Gordon already has everything prepared and is planning to drive the two and a half hours to San Diego tomorrow so Will can begin treatment again if the appeal is approved.
She said, “I just wanted you to know…Rady hasn’t given up on Will. They want him to stay in this fight.”
Y’all…
THIS IS A MIRACLE.
A hospital willing to step outside the normal path and fight alongside another team for one child…that doesn’t happen every day. We have prayed for God to open a door that no man could open.
I believe this is Him answering.
Jason prayed this afternoon for God to reveal Himself to Will in a mighty way. Hours later, this happened.
Tell me God isn’t still working.
We are still waiting on answers from the CT scans. We know the road ahead is incredibly hard, and we know what we are up against. But we also know our God is bigger than cancer.
The enemy has tried everything to break us. He has knocked me to my knees more times than I can count. He has crippled me with fear. But he will not break me.
We will keep putting on the full armor of God and keep standing.
Please keep praying.
Pray that Will’s heart stays strong.
Pray this emergency appeal is approved.
Pray DeltaRex-G can be restarted immediately.
And above all, pray that Will continues to see the hand of God through every step of this journey.
We aren’t finished fighting
