February was our 2nd month of immunotherapy.
We started the IL-2 infusion at home and the next week did it again with the CH 14.18.
It was awful.
He had so much morphine in him to keep the pain away.
He didn’t want to do anything or eat anything.
And like almost all of our inpatient stays- it snowed,
He lost a lot of weight but developed a new love for Kinder Eggs which there are TONS at Smith’s and Walmart right now. The toys are actually pretty good. Downside? He won’t eat the chocolate. He says it tastes amazing but he’s never tried it. Silly guy.
Upon coming home we knew a bit what to expect this time.
-tons of loose bowels
-a while to get eating again
-panic attacks in his sleep.
And just when we got that all under control he started the Accutane again.
Mood swings galore. Anger, sadness, lethargy, sleepy, etc.
He would get about a 2 hour spell in the afternoon with energy and then crash emotionally and physically.
It is so hard to remember sometimes that he’s just 5 years old.
He doesn’t know why his emotions are suddenly out of control.
So we do a lot more cuddling, hugging, and talking things out.
And we find the movies that calm him down. Mostly the Spy Kids movies.
He will even tell you now that he is a spy kid but no one can know 🙂
The accutane is hard on the liver and kidneys.
So we have him on another medication to keep that under control.
it also REALLY dries out your skin/lips
However we noticed on March 4th that his eyes were super dilated, not reacting to light.
He was complaining of severe stomach/back pain.
His legs hurt and he wouldn’t walk.
He became more lethargic and wasn’t even getting upset anymore.
I contacted the on-call bone marrow team and they said it was expected but to get his labs done the next day.
So I took Si and Meg in for their labs (thank you to my mom for helping as Meg has a tendency to be social with everyone and also run away).
Meg’s labs looked great.
Simon had elevated liver counts (bilirubin was still okay).
Clinic called- don’t worry, continue on the way you are.
Which makes me feel like we did at diagnosis again- not being listened to and mommy gut is saying otherwise.
There is a hospital in New York City that is known to be one of the top Neuroblastoma hospitals in the world and I had the doctor’s direct office number.
I left 2 messages for them to call me back.
to be continued…..
(dressing change last night. He HATES it)