Immunotherapy began on October 19, 2009.
For those who don’t know what it is, I’ll try to explain the treatment and process as best as a non-doctor can.
In the days leading up to our admission to the hospital, we gave Jackson GMCSF shots to stimulate his bone marrow. In essence we were “revving up” his immune system to a supercharged level.
Next we would be admitted to the PICU for the infusion itself which took around 10 hours each day. The infusion or “antibody” Jackson received was a laboratory-produced substance that could locate and bind to cancer cells anywhere in the body.
Because we had revved up his immune system, and his body recognized cancer cells as foreign, his body would then kill the cancer cell itself. (Yes, someone VERY SMART came up with this.)
Neuroblastoma, being a cancer on the nervous system outside of the brain, meant nerve pain was typical as this happened.
We went into his first day of Immunotherapy unprepared. Us. Jackson. The staff. Being a new treatment, Jackson was only the second child at CHKD to get it, and the first to really have the pain associated with it.
When I say pain, I mean PAIN. If you’ve ever had real pain that gets behind the medicine, it’s very, very hard to catch up.
Jackson cried so long and hard that first day that he went hoarse. His heart rate was in the 200s. We started with 5 mcg of Fentanyl an hour, and ended at 12 mcg per hour, with 5 mcg boluses every 15 minutes. We eventually had to sedate him to get him through the pain.
It was absolute torture for both of us. I couldn’t fix it and he couldn’t take it.
On the second day, I did something I NEVER did during treatment, I cried as they set him up to begin. He was asleep in the bed and I just cried, silent tears, as the nurses came in to set it up. I had never wanted to NOT do something more in my life. I actually stopped them and prayed over the medicine. This is why I love nurses…they stopped and bowed their heads with me too.
He made it through those guinea pig five days of his first immunotherapy round in the PICU, having all learned what was necessary to have Jackson tolerate immunotherapy better. But it felt like we’d been through war.
In this photo, Jackson had been home from the hospital 6 days. He had JUST begun to feel better after the residual immunotherapy effects wore off. With that little Halloween costume on, ready to go trick-or-treating, you’d never know what he’d been through the week prior.
I was having a hard time fighting my anger. I wanted this to be the last Halloween where I had to give IV antibiotics underneath his costume. I didn’t want to put him through this treatment anymore!
In true Jackson form, he wasn’t angry at all, he was excited for Halloween. He ran around while I tried to disconnect his IV…sneaking candy from our candy dish and squealing down the hallway with his family.
He has taught us so much, one of the important lessons is to ENJOY life when it’s good. He wasn’t in that hospital bed anymore. He wasn’t in pain anymore. He’d already moved on.