I don’t know exactly how to describe immunotherapy. As I understand it, it’s a sort of bespoke medical treatment where they tailor a drug to fight an individual’s cancer, teaching the white blood cells to see the cancer as a foreign object so they’ll attack it. I’m not sure exactly how they create it or how it works.
What I do know is that it’s miraculous. The doctors had decided to do a couple of rounds of immunotherapy since RC was still riddled with tumors. They ran a scan after they were done, and the number of tumors in his body had been reduced from 19 to one. He was finally in remission. And now that the doctors were done with saving my son’s life, they were going to give him enough chemo to kill him.
They told us at the beginning that the high dose chemo would be the hardest part of his treatment. During one of his stays in the hospital, they stuck a needle in his neck and hooked him up to a huge machine that harvested stems cells from his body. Now they were going to use them.
During this portion of treatment, they were going to give him so much chemo it would wipe out his bone marrow. Then, they were going to give his own stem cells back to him, which would keep him alive and allow the marrow to regrow. We would be in the hospital for at least a month, and he would be seriously immunocompromised for about a year afterwards. There was a good chance the procedure would knock out his residual hearing, and the medicine would have such a negative effect on his fertility he might never be able to have children.
My wife and I signed the consent forms. I’m sure at this point, some parents would balk and try a different option. I can look online and find people insisting that chemo is useless and you should just feed your kid smoothies or something like that. But we had complete confidence in CHOP, and they were telling us this was what we needed to do, so we did it.
We were in the smallest room on the unit, and since Lisa had to have back surgery a few days before our son’s procedure. It was just going to two of us alone together for the next few weeks. I hoped that he didn’t end up in the ICU. I hoped he wouldn’t lose his hearing. I hoped he wasn’t going to die.
The treatment was as intense as they claimed it would be. The drugs they were giving hm were so toxic that I had to give him a shower every four hours to keep his skin from getting hurt. That also meant he wasn’t allowed to wearing his hearing aids or else they would burn his skin.
Then after a few days of this, it was time for his transplant. They gave him his stem cells, and now the only thing left to do was wait. The mouth sores showed up, which was probably the worst part. He kept coughing up blood, and he threw up his breathing tube multiple times until we finally stopped trying to put it back in. He was in good spirits, all things considered, but I’m sure the painkillers he was on really helped.
His blood wasn’t clotting very well, so one time the nurses woke me up to tell me they had to change his port needle and dressing. I don’t know if you have ever had to hold a three-year-old while people stick a needle into his chest at 2’o’clock in the morning, but if you haven’t, you’re not missing much. Still, the kid down the hall had a lung collapse, so it could have been worse.
Slowly but surely, his white blood cells started coming back. About a month after we were admitted to the transplant unit, they sent us home. RC was still weak, but he was feeling pretty good.
Then, after a few weeks at home, we went back and did it all over again It was somewhat different chemo this time, so no showers every four hours, but still just as nerve wracking. Again, after a month, they sent us home. And at the next scan, they couldn’t find any cancer. I had a few more grey hairs than when I went in, but my son was alive and doing well. He lost of tiny bit of hearing in one of his ears, but otherwise, he was fine. We weren’t done with treatment, but the worst of it was behind us.