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Survivor Interview – Mark & Jack H.

Mark talks about being a caregiver to his son with cancer, Jack’s experiences with fecal incontinence, and their relationships with other family members.

A portrait of a young boy and his father against a white background.

My son, Jack, became a survivor on June 28, 2001 when he was diagnosed with a pelvic tumor.

They had found something in his stomach or in his pelvic region, and there was a tumor. The first thing you think of is, “Is he gonna die? What is this thing inside of him?” Instantly, in my mind, it switched over to how we’re gonna get him better immediately, whatever it takes to get him better. Within a day, they had him in surgery to remove the tumor. He recovered from that. A couple of days after that, our son Dillon was born, so it was pretty hectic. Our lives turned upside down. We had a lot of discussions learning what cancer was about and tried to diagnose what it was. He is not officially diagnosed. It is not a tumor that they’ve ever seen before. The best thing that they could tell us was it was similar to what’s called a PNET, which is similar to a brain tumor.

By October of that year, it had already grown from microscopic size to the size of a grape, so it was back again. They suggested chemotherapy. Through the chemo cycles, we had to have him on liquid diets. We did chemo for about six months, and they said that it contained the tumor, but did not kill it. They felt that the chemo was a failure. He was on Vincristine, Cytoxan, and BP-16, which are very strong cancer drugs. After that, the next mode of operation was to take it out again. He had a follow-up surgery to take it out. He had to have a secondary surgery after that, because they gave him a colostomy, but his intestines started rolling back on themselves, so they had to go in and do it again. Instead of a three-day operation, we were in there for about fifteen days. In July of 2002, we started radiation. They wanted to go in and make sure that the cells in the area were dead, so he had seven weeks of radiation. We had follow-ups every couple of weeks after that, then once every three months. He had to be cancer free for two years until they’d even consider reversing his colostomy. At that time, he was cancer free. He had his final surgery, hopefully, and they reversed his colostomy. He has had roughly 10 surgeries since he was two.

Now he’s potty training as a five-year-old. Right now, he has to go through various stretching sessions. He has scar tissue from his recent connection of the rectum to the intestines. Because of the scar tissue and because of shrinkage of either the intestine or the rectum, he has to go every couple weeks to stretch him back out, so he’s able to continue functioning, but that should end at some time. There’s a potential he’s not gonna be able to sustain his current condition, because of the inability to have muscle control. Right now, he has to wear Pull-Ups. He is very raw. We have to wipe him about every couple of hours, because he cannot control when he’s going to the bathroom. There’s a potential he may have to have some kind of an ostomy after this, unless he finds some ability to control it, which at this time we haven’t seen yet. Our concern is as he’d get older, how’s it going to affect him as a teen? Is he gonna get ridiculed because of it? So we figured we would try the reconstructive surgery, see how it works for him now, and see what his abilities are in the future.

The concerns for him, at this point, are going to be pelvic bone development. They’re concerned that long-term, the pelvis may not grow to equal size of the rest of his body. We don’t know if he’s not gonna be able to walk, or if his body structure will be able to handle the weight for the rest of his body, or if he’s gonna be limited on what he can do. We’re gonna have to address sterility at some time, because of the radiation in the pelvic region. They were able to protect most of his organs, but for any of the sexual organs, there’s a potential that they may be permanently damaged. We weren’t able to save anything for him. We don’t know if he’s gonna be able to have a family in the future. That’s something we’ll have to address down the road.

We were each other’s emotional support through this whole thing. It actually brought my wife and I closer together, because of the realization of how fragile life can be and the potential of losing our son. If something had happened, I don’t know what our family would be like right now. I know we’ve talked about it, and Lori has said that if she ever lost him, she doesn’t know if she’d ever be able to recover. I don’t know how it would be at that point. He survived and because of the support of our friends and our family, we got through it pretty well. People ask me, “How do you do it?” You don’t really know how you do it. You just do it because you have to. You have to go to work. You have to have insurance. You have to do the treatments. You have to drive there. You have to go through the traffic. I would be on almost a four-hour commute every day to work, to go for treatments, come back, drop them off, then go back to work. Then come home and get up the next morning and do that. But it’s for seven weeks. Seven weeks for the rest of his life is certainly worth it. So you just do it.

Jack and Grant are very close and seem to play very well. Obviously, with his younger brother, he doesn’t get along so well, but I think that’s typical. I don’t think this has changed their relationship in any way. I think Grant being older tries to understand what Jack has gone through. But our biggest concern, though, was a lot of attention was given to Jack. Dillon was very small. He was just born. He was with the babysitters or the family. I don’t think that affected him. But Grant, probably at times, didn’t understand why we weren’t around, why Jack got so much attention, and why Jack gets presents. We’ve explained to him. He understands the term ‘cancer.’ He doesn’t understand the concept or the potential finality of cancer. He doesn’t understand death or anything like that, so that’s good. Someday he may have to, but right now he doesn’t. I don’t think we really know what he was thinking. He’s never told us. There are times where we see some emotional disconnect with him, and we wonder if it was because of the attention to Jack or if it’s just his personality. I know when I was younger, I was a very solitary child. We see him like that sometimes, too.

While I was in the hospital, I was walking through the hall one day and Lance [Armstrong]’s first book was on the nurse’s desk. As Jack was going through his treatments, I was in bed with him most of the time, so I was there for a couple of days. I finished the book in about a day and a half. I’d already known about Lance and had liked biking when I was growing up. But the way I read it, what he went through and the introspection the book gave me personally, was pretty inspiring. I had read in there that there’s the Lance Armstrong Foundation. So I said, “Let me see what this is about.” I started reading into it. It’s easy to get involved with something that you enjoy. Number one, I like to bike. I don’t get to do it as much as I’d like to, but I like it. I certainly love watching the Tour and rooting for Lance. There’s a commonality there. We also work with a few other foundations as well as raise money. I thought it was a great idea. I read the inspirational portion of the Ride for the Roses and why it was originally done. I figured it was a great way to raise money and get involved with giving back to the cancer society. So I figured, why not get involved?

Survivorship means that you’ve been through a lot. It’s a continuing journey. It’s never-ending. You have gone through the worst battle that you’ve had to go through in your life. I don’t think we’d ever have to go through anything that hard again, and hopefully we don’t have to. It also is a more appreciative position in life. You appreciate things more or maybe you appreciate things that other people don’t appreciate, because you’ve seen the potential loss or the potential disruption to what you currently have. It’s also a very happy time, because it can be worse. You could not be a survivor. That’s where that word becomes powerful. That person is still here with us and continuing on, whether it’s Jack or anybody else that’s had cancer. You can really appreciate the fact that they’re still here and they’re still battling every day.

My name is Mark Howard, and my son Jack is a three-year cancer survivor.

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