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.

Three Cheers for Stem Cells

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.

Two Steps Forward, One Step Back

Once your kid has cancer, your entire life revolves around treatment. You have a weekly clinic visit so they can stick a needle in your son’s chest and draw blood. The clinic is always crowded. You would never have guessed there are that many kids with cancer, but there are, and they’re all waiting to see the same doctors you are.

If you’re lucky, your child’s counts are good. If that’s the case, you can just talk to the care team and then go home. But if he needs plasma or platelets, then you’re going to stay for a few hours while he gets a blood transfusion. He gets a comfy chair, and he gets to watch cartoons, so he doesn’t mind too much.  But your chair isn’t so comfy, and you have to deal with rush hour traffic with a sick kid in the car.

You carry barf bags with you wherever you go now, and you try to make sure you are in your house at 2 o’clock, because that’s when he gets his dose of Ativan, which you have to keep refrigerated. There are so many different nausea meds, and you try all of them. You hate going anywhere in the car, because what if he starts throwing up while you’re driving? And of course, that happens sometimes, so you have to learn how to hold a bucket under his mouth while you’re driving. You’re not often successful, but you have to try.

He’s not eating food by mouth anymore, so you’re giving him nutrients through his nose tube overnight. You stop having family meals together because the smell of the food makes him sick. He panics at even the idea of trying to eat something as simple as applesauce.

The nighttime vomiting is the hardest part. He calls for you at 3 o’clock in the morning, and you sprint down the hallway. Hopefully you get there in time to catch it. Sometimes you’re not so lucky, and he throws up on the sheets or the pajamas.  You’ve never done so much laundry.   

They give you a fridge magnet with all the numbers to call if he has a fever. If it’s over 100.4, you’re supposed to call the number and bring your kid to the hospital no matter what time of day or night. You are most likely going to be making an unexpected stay there for a couple of days or weeks, but it doesn’t really matter because you have a bag full of your clothes in the car all the time now.

This is how it goes for months. If you’re not in the hospital, you’re making plans to go the hospital. And everyone’s great. The doctors, the nurses, your family friends, your friends – they’re all wonderful and concerned, and it’s amazing. You have shirts made with a catchy slogan and talk about how your kid’s a fighter. You and your friends go to the Alex’s Lemonade Stand 5k, and everyone is so supportive.

But you spend a lot of time thinking about what stuffed animals you’re going to bury your child with and what you’re going to say at his funeral. You think about how you’re going to kill yourself if your son dies. But you can’t talk about it with anybody. You act brave for your family, and you act brave for your child, and you never let anyone know how it feels inside. It’s like being eaten by shark and trying to act like it doesn’t hurt at all.

After five rounds of chemotherapy, you get the word the primary tumor has shrunk enough that they can do an operation to remove it. The surgeon seems pretty optimistic, and you’re pretty optimistic at this point too. Treatments have been rough, but your son has been dealing with the treatments like a champ, and he’s been feeling better. Sometimes, he runs through the hospital like he doesn’t have a care in the world.

The surgery is a big success. The surgeon gets almost the entire tumor out, and your son gets out of the recovery ward three days early. You feel like you’re on top of the world. You’ve lived in the Philadelphia area for almost 25 years, and the first time you want to run up the art museum steps and jump around like Rocky Balboa. 

Then your son gets his MIBG scan. The doctor calls you afterwards with the results. They’re not great. They had expected him to be in remission by now, and he’s not there yet. They’re going to have to make some changes to the treatment plan. They reassure you that this can happen, that sometimes the treatment plans go on a lot longer that what they initially expected. You try not to cry, you hug your son, and get ready for yet another stay at the hospital.

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.