We had our first 3F8 session. That is the name of the immunotherapy.
Jacob did well according to the doctors. I can’t even fathom what bad looks like. And I really can’t fathom Jacob having to do it again, but I know he will. Dozens of times he will. He has no choice.
The drug administration is only 30 minutes.
For the first 4 minutes I didn’t notice anything. I turned to the doctor and asked is it possible to coast through this? Her response was a hard “no, he will feel it for sure.” And one minute later I understood. He shot up. Face turned red and shouted “I can’t breath.” He was breathing fine, we knew that, but the pain was that fierce. Then hives broke out by minute 7.
But we were not alone. We had doctors, nurses, child life specialist, everyone was at the ready. They had narcotic after narcotic at the ready and even an anti narcotic in case his heart stopped. They had heat pads, ice packs, steam to blow in his face. They were very prepared. It was scary, but they oozed confidence and it was clear it wasn’t their first rodeo. This put us both at ease.
Can you imagine doing that everyday?!
Imagine how they answer the day to day questions. “How was your day today honey?” “I just watched children in excruciating pain and then gave them narcotics and had to watch their blood pressure and push fluids when needed. Can you pass the salt.”
They must have loads of awkward calls.
The pain was the worse part. The vomit and the hives felt minimal. Sadly, it is 6 hours later and he is still in pain, but no where near the pain seen during the 30minutes. The pain exists because the immunotherapy goes after all GD2 receptors, which neuroblastoma cells have, but also your nerve endings. His nerve endings are under attack. The older kids describe it as fireworks in their body. These 12 year olds are our only glimpse into the reality of this world. The doctors can’t explain it. They’ve never felt it.
But he did it and we did it.
We are now just trying to get his meds right. I’ve never seen so many meds! It makes your head spin and you HAVE to get them right. One wrong dosage…
And someone asked me: “What’s the plan tomorrow” and without skipping a beat I said “We just have chemo.”
That “just” just flew out of my mouth. JUST chemo?!
And again…it could be worse.