The End of a Journey

I don’t want to say the rest of treatment was a cakewalk, but it was certainly easier than being on the transplant unit. RC’s radiation treatments went smoothly. He wasn’t particularly fond of being sedated nearly every day for two weeks, but he liked the toys they had at the radiation center, so he didn’t complain too much. He got to ring a bell in the waiting room to celebrate the end of radiation therapy, but we weren’t done yet.

The final part of treatment was a few months of immunotherapy. We knew mostly what to expect, but this time we were adding Accutane to the mix. If you’re unfamiliar with Accutane, it’s acne medication that comes in the most horrifying looking packaging I’ve ever seen in my life. It’s good for curing severe acne, but it also can cause horrible birth defects. The entire package is pregnant women not to touch it. I had to crush up pills and put them in my son’s feeding tube every day. I hope it doesn’t cause any problems for men, because if so, I am in trouble.

Immunotherapy was a little rough, because he had to take a lot of pain medication, and withdrawing from that was difficult. He once spent several days in bed sleeping because he was so wiped out from the treatment. Accutane causes intense mood swings, so he was pretty grumpy for a lot of the time. But the end was in sight, and that was all we cared about. I wasn’t happy about my son’s tantrums, and we had to have several conversations about why it wasn’t OK to hit me or his mom, but it was better than cancer.

Then one day it was over. We didn’t make a big fuss about it, but our last stay in the hospital happened. We spent the last couple of days playing video games and watching Star Wars movies, but we said goodbye to our home away from home on the third floor of Children’s Hospital of Philadelphia. It had been about 21 months.

He stopped getting IV nutrition about six months after the end of immunotherapy, but we were still having major problems getting him to eat with his mouth. I had to bribe him to eat applesauce, and I was starting to feel like he’d never eat normally again.

We had to take him to CHOP’s Feeding and Swallowing school to teach him to how to eat with his mouth without throwing up. I watched him from behind a two-way mirror as he learned how to eat solid food again. We finally took the tube out of his nose about three months after that, right after our Make-a-Wish trip to Disney World.

So, that’s where we’re at. No sign of cancer, and hopefully that’s how it stays. My son seems relatively unaffected by his treatment, although he has nightmares sometimes. He always tells us how much fun he had on the oncology floor and sometimes asks whether we can stay there again. I’m not sure if this is some kind of coping mechanism or if genuinely wants to go back there. I’m glad it didn’t seem to leave too many mental scars.

I don’t know if I’ll ever fully get over my son’s cancer treatment. It was such an intense experience that life now doesn’t feel real. Sometimes I think I’m going to wake up back in a hospital room and the past 18 months never happened. I’m glad I don’t have to put a feeding tube back in his nose every other day, but I feel kind of useless now that I’m not doing that kind of thing anymore.

Perhaps one day my heart will not leap into my throat because I’m scared that the cancer has come back, but I’m not quite there yet. I’ve only just gotten used to the sight of him having hair again. He was sick for so long that I’m not sure what to do with myself now that he’s better.

I can’t complain, because we were lucky. Some kids don’t make it, and some kids have profound lifelong complications after treatment is over. Everything went relatively smoothly, and we made it through in one piece.

I am profoundly grateful to my friends and family for helping us through this, and of course I am thankful for everyone at Children’s Hospital of Philadelphia. And when I say everyone, I mean everyone from the doctors and nurses to the people working the cafeteria. I’ve never had a bad interaction with anyone from CHOP, and as far as I’m concerned, they’re the best people in the world.

When I started this blog, I had intended to chronicle my son growing up, but I don’t think I can do that anymore. I’d like him to have some semblance of privacy, and I don’t want to expose his entire life on life. Besides, I’ve read Scary Mommy, and that’s led me to believe that most people who do parenting blogs should be shot into the sun.

I’m keeping the blog, but I’m just going to do book reviews or something like that.  Maybe I’ll just put stuff here that’s too long for Twitter. I’ll definitely be doing some reviews for Vintage Sci-Fi month, but after that, I guess it’s pretty much up in the air. Thanks for reading.

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