An Introduction to Pediatric Cancer

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.

A Break from Our Regularly Scheduled Programming

My dad is dead. I’ve been saying “passed away”, but I’ve never really been fond of that phrase. He’s gone forever, it hurts, and I don’t see the point in trying to disguise that fact with euphemisms.

The doctors thought it was cirrhosis. It didn’t make any sense, as my dad didn’t drink much. I know that people who don’t smoke can get lung cancer, so I guess perhaps it was plausible. However, the treatment didn’t seem to be helping. My parents eventually gave up on the doctors in Harrisburg and went to one at the University of Pennsylvania instead.  That’s where they found out it was cancer.   Cancer isn’t necessarily a death sentence. People beat it all the time. My mom and my aunt both survived breast cancer. No reason he couldn’t do the same.

Then we found out it was hepatic angiosarcoma. It’s not even in the Microsoft Word dictionary, so I guess that’s indicative that it’s not the most common form of cancer. I believe it’s actually one of the rarest forms of cancer you can get. It’s the kind of thing you see in an episode of House, except it’s an episode where the patient dies because there’s no way to fight angiosarcoma.  According to my mom, the medical team at U Penn was great, but there really weren’t any options. They tried chemo, but it was almost too much for him to handle. The doctor could provide ways to minimize the pain, but since my dad wasn’t really in any pain, there wasn’t much to do.

I’m not sure how much my dad knew about his prognosis. He was a smart guy, and I’m sure he knew this wasn’t going to end well. But, he acted as if he’d still be around in 20 years, and if hadn’t gotten that damn disease, he probably would have been. My dad was remarkably healthy for a 65-year-old man. He was tired a lot, and he was using a walker, but he was still the same guy I always knew. The last time I saw him, he looked sick, but he seemed in relatively good spirits. I don’t think anything about him ever astonished me as much as his bravery in the face of death. I don’t know if I could ever do the same.

It looked like things were on a bit of an upswing, and Lisa, my son, and I were going to visit. Then he went to bed on a Friday night and didn’t wake up. I drove in the next day to see him. He was unconscious. I watched a priest give him last rites. I stayed there for a while, but my mom told me to go home. The hospice workers told her he could last several days in that condition, and she didn’t want me to be away from my son for that long. There was nothing any of us could do except wait.

I went home and ran in a half-marathon the next morning. I wasn’t sure if I was going to, but then I woke up at 5 o’clock in the morning and figured it was better than lying in bed. I gave my medal to a charity that gives them to kids going through chemotherapy. When I got back home, my mom called and told me he was gone.

I dreaded going to the funeral. Not because I didn’t want to say goodbye, but I didn’t want to be a blubbering mess and make things worse for my mother. She was already going through enough, and want to burden her with my own grief. The funeral was going to be at the church my dad went to as a kid. The priest there apparently had better things to do than comfort a grieving family and gave my mom all manner of pushback about this, so she found a very nice priest who was willing to do the ceremony at a funeral home. I’m not religious, but I greatly appreciate that man’s kindness.

Several of my friends came to the funeral, which was unexpected but very nice. A lot of my dad’s coworkers showed up to, which was also nice. It was not easy to sit through, but I did feel some sense of relief once it was over. I wouldn’t say I felt better, but at least I felt like there was some kind of closure.

My dad was a workaholic. I wish he hadn’t worked so hard, and I wish he hadn’t had to travel so much when I was a kid. But, he loved my mom, and he loved me and my sister, and I don’t think there’s anything more anyone could have asked of him. He was always there when I needed him. He was there my wedding and for the birth of his grandson.  I’m not sure if he had any regrets, but he seemed like he was pretty content. As far as lives go, I think he had a decent one.

What does hurt is when I think about what could have been. He was a wonderful grandfather to my son, and they could have had so much more time together. I lost both of my grandfathers when I was fairly young, and I’d hoped that son would be spared that and that my dad would be around for a good long time. When I think about what could have been and what my son will miss out on, it’s devastating.

I don’t know how to act or what to do. If I dwell too much on it, then I find myself unable to function, and I don’t have the option to just wallow in sadness. If I try not to think about it, I can go about the day, but I feel like I’m betraying my dad’s memory. I want to be angry, but there’s no one to be angry at. It’s no one’s fault he got cancer, and it’s no one’s fault they couldn’t cure it. It’s just terrible luck. I try to try to tell myself that it could have been worse, that he could have died in a great deal of pain, but I’m not even sure I believe that.

What happened was awful. I wouldn’t wish it on anyone. I don’t know if I’ll ever be quite the same again. When it looked like we couldn’t have children, I sometimes comforted myself with the thought that it was OK because there was no way I could be as good a father as my dad was. I’m still not convinced of that, but I will have to try my best. I wish he could have been here to see it.