I didn’t cry when my wife told me our son had cancer. I felt completely numb, but there were no tears. Looking back, I’m really surprised about this, but I guess I was so focused on getting back to the hospital that I forgot to cry. If I’d allowed myself to give into grief, I would not have been able to drive the car to the hospital
I got back to the room we were staying at, and they were in the process of moving us to the oncology floor. RC had been diagnosed with stage IV neuroblastoma. It most commonly manifests in the adrenal glands, and in his case, it had progressed to the point where it was all over his body. We would not be going home for some time.
The only thing we really had going for us was the fact that Children’s Hospital of Philadelphia is at the forefront of neuroblastoma research. They didn’t promise they could save our son’s life, but they had an aggressive 18-month treatment plan, and we figured that if anyone was going to be able to keep him alive, it was going to be them. The doctors were all very nice, and they all had a lot of experience, so we signed a bunch of paperwork and told them to do whatever they needed to do.
They told us not to worry about what you see on the Internet because each child responds to treatment differently, and the statistics don’t tell you the whole story. Of course, the first thing I did was go on the Internet and look up neuroblastoma. It appeared that RC had about a 50 percent chance of beating it. I had never felt so powerless on unsure of what to do.
The most excruciating experience of my life was the wait to have a port placed in my son’s chest so he could receive chemotherapy. I just wanted someone to put some kind of medicine into his body, and I didn’t care what it was. They could have hooked him with an IV of Robitussin, and I would have been thrilled. I could barely sleep knowing there was something inside his body trying to kill him. The second the nurses started the first infusion of chemo, I felt like I could breathe again.
RC was unhappy about everything that was going on, but he was really tough about it. He didn’t complain much at all, although one time when he was getting an IV change he said, “I don’t like this hotel very much.” He liked going to the playroom, and he got to play with an iPad a lot more than he normally did, so he remained relatively upbeat. That was really helpful, because I don’t know if I could have held it together for that first round of treatment if he’d been in a really bad mood.
The only thing he really put up a fuss about was taking any of his meds orally. The nurses suggested we place an tube in his nose so we could give him meds that way. We initially refused, saying that he was going to learn how to take his medicine like a big kid. After a couple of weeks, we gave in. We were too tired of fighting, and it felt like we were torturing him.
We made it through the first week of round of chemo, and then we had to wait for his body to recover enough to go home. We’d had an enormous outpouring of love and support from family and friends, and RC was being so brave that I walked out of the hospital feeling like everything was going to be all right. Then, about a day and half after we got home, RC spiked a fever, and we had to go back to the hospital for two weeks. Two steps forward, one step back – that’s cancer treatment for you.