A Gut Punch on Day 1 of Immunotherapy

Today we started the first day of a week of immunotherapy treatments, the first of 5 of these weeks of treatments, to occur every 4 weeks until the end of June. It's different than chemo or radiation in that it's designed to simply amplify the immune system. The downside is the weird reactions playing with the immune system can tend to provoke.

This is Esther as the day started, prior to treatment beginning. Feeling good, ready to go!

Esther's reaction to the treatment today was a bit unexpected even for the antibody treatment. It was the return of that good 'ol nausea, likely caused by the pain medication as well as the treatment. It hit like a hammer around 1pm and got worse as the day went along. Of course, I didn't help because I didn't even think of nausea as a possible side effect so I didn't even bother to give her Zofran this morning because she's been doing so well! But even as of bed time this evening, she hasn't been able to keep hardly anything down and her stomach pain has been really bad. We've gradually upped her pain meds over the past 4-6 hours.

This is poor little groggy and in pain Esther a bit later in the day...

She's drifting off to sleep now, hopefully for the night. Pray that the pain and nausea subside and that we've figured out how to help her with it. Her heart rate is still pretty sky high and her breathing is shallower, which always happens with the immunotherapy. Each day of this week will be the same treatment regimen.

Day 1 illustrates again how dangerous Stage IV Neuroblastoma is. We celebrated her complete response and all clear on Friday but that doesn't necessarily change her odds. If she had no more treatment after Friday, her chance of relapse would be 50-60%. With this next round of immunotherapy treatments and some at home meds, her chance of relapse drops to around 25-35%. Huge difference. But a 1 out of 4 chance of relapse after a what will be close to 12+ months of intense, heavy treatments seems crazy. The flip side is that even 8-10 years ago, it was routine and accepted for parents to choose to not even put their kids with Stage IV Neuroblastoma through treatment because the long term prognosis was so low.

This morning I was able to read the first 8 chapters of Exodus. Moses as a young man is very confident. When he defends his fellow Israelite and kills the abusing Egyptian, he acts as if he is the savior, as if his strength is enough. Then he gets exposed and exiled for the next 40 years. God had to put him in the desert to break him down a bit and teach him not to be so self reliant. The Moses of the beginning of Exodus is not the humble, God-reliant confident leader that he is later in the book of Moses.

Esther's treatment has definitely felt like the desert Moses gets exiled to. Long. Numbing. Distancing. Painful. Silent. But we have to trust that God has good for her and us just as he did for Moses.

Update: Esther is fighting some bronchial spasms that we're trying to deal with. We're waiting on a respiratory therapist who seems to be delayed and then she can have the medicine to help with it. They've paused the immunotherapy (only about an hour left of the 10 hr infusion) until she settles down.

Update (9:30pm): Esther is doing better. This staff is amazing. They saw the signs and made sure the reaction didn't get worse. She's sleeping and they'll try to finish the antibody infusion in a few hours just at a slower rate (half speed). Her heart rate is still up but that is a side effect of the medicine they gave to help the spasms not ramp up. I don't really get worried anymore when things get a little amped up during Esther's stays at Children's. These docs and nurses are the best at what they do, seriously.

 

Posted with Blogsy