On Having a Kid with Cancer
One day I went from being the father of a beautiful, healthy baby to being the father of a beautiful, desperately sick baby.
On November 5, 1995, we took our five-month-old son, Quinn, to the emergency room to have his blood tested. Only a few hours earlier, my wife, Holly, was at the pediatrician's office, having the doctor check a small bump on the back of Quinn's neck that had persisted for two weeks.
I remember trying to comfort our son in the emergency room. I remember the nurse drawing blood. I remember the wait. I don't remember the doctor's exact words: something about infant leukemia, about too many white blood cells. We were told that Quinn should be admitted to the cancer ward immediately, that they would start him on "fluids" and begin massive chemotherapy the next day. In my disbelief, I asked the doctor if she would show me his blood under the microscope. As she led me to the lab, I searched frantically for something relevant from my days as a biology major at Kenyon or the two years I spent teaching high-school science.
When Holly and I walked down the hall to the parents' lounge for a conference with the oncologist the next day, it was the first time we'd left our baby with anyone. The oncologist said Quinn had a 20-percent chance of survival on the standard protocol, but that the newest method of bone-marrow transplantation, which used umbilical-cord blood from a newborn baby, would increase his odds to fifty-fifty. Without the transplant, he faced three years of chemotherapy rounds every three weeks. We chose the bone-marrow transplant.
Getting ready for the transplant involved a series of invasive procedures: punching holes in his hips and drawing out marrow, putting a "central line" in his chest so that chemotherapeutic drugs could be injected into his veins. Quinn looked good for a couple of days after the chemo, then the On November 5, 1995, we took our five-month-old son, Quinn, to the emergency room to have his blood tested. Only a few hours earlier, my wife, Holly, was at the pediatrician's office, having the doctor check a small bump on the back of Quinn's neck that had persisted for two weeks.
The whole point of a bone-marrow transplant is to push the human body to the verge of death by killing anything that grows until all the cancer is gone, and then to rescue the body. At nine months, he was being "reborn" with a baby girl's blood. He was a data point in a small sample of ten, a tiny pioneer.
After the transplant, Quinn had vomiting and diarrhea for months, and he had to be kept alive on intravenous food. Amazingly, he slowly improved. Somehow he managed to play and smile at least once nearly every day. We only have a handful of pictures from those times. In one, a tiny Quinn is in a high metal crib surrounded by toys and five or six IV pumps. In another, I am dressed in sterile hospital garb playing guitar to him in the double-doored, sterile room he and we inhabited for some of the toughest months of our lives.
When we finally took Quinn home, it was to a house transformed into a hospital. As time passed, we could see that he was continuing to get better. But we could also see the damage the transplant had done. While he was clearly intelligent and developing, his speech was delayed and awkward. He didn't walk until he was nearly two. Worst of all, he had developed a life-threatening complication called Graft-Versus-Host disease.
In more than half of transplant patients who survive the ordeal, the transplanted white blood cells attack their own body. Quinn's digestive tract and skin in particular were taking a beating.
The only treatment for this complication is high doses of steroids, which suppress the immune system. Unfortunately, the side effects of the steroids, especially the Prednisone, which has entirely stopped his growth since age one, are terribly worrisome. The long-term effects of continued steroid use are even more so: ultimately, his life is threatened. Periodically during the last three years we have tried to taper him off the drugs, but each time the war between Quinn's body and blood flares up again.
A quick calculation suggests that Quinn's three-times-daily medicines have come to some twenty-thousand doses of steroids, antibiotics, antifungals, antivirals, vitamins, and blood-pressure medications. A while ago, the bills surpassed a million dollars. We were, and are, very fortunate to have health insurance.
Some of my graduate training and research in sociology touched on issues of how people cope with stress and fear. In our case, Holly and I were lucky that our coping styles were nearly identical. We both eagerly sought information about Quinn's disease and treatment options using medical libraries, the Internet, and e-mail groups. We pushed our doctors for more options. As scientists and secular humanists, we both wanted the straight story with no sugar-coating.
I think denial was also working for us on some level: we both firmly believed Quinn would survive, even as we wondered how some of the other parents we encountered--who were also clearly in denial--would cope when their children died, as so many did.
We exercised, took our dogs for walks, and smuggled beers into the hospital for each other. Our bosses and coworkers were blessedly understanding and flexible. We had a good babysitter, and working part time helped keep us sane, too. For me, teaching was like a holiday: I got some of my most positive teaching evaluations from my students at Tulane University during the first year of Quinn's ordeal. Helping other parents in similar straits and running a marathon that raised funds for the Leukemia Society were also ways of coping. Running that race gave me something I had control over, always a challenge with a cancer kid, or maybe any kid.
There was good in all of this. It took a deep crisis for me to learn to be happy with getting nothing more done in a day than sitting and holding my boy. I still appreciate when I have daily, concrete nursing-type things I can do to care for him. The most difficult times also brought out the best in our marriage: when we need to, we really support each other and work like a crack tag team. It's still an ongoing test of patience and focus, of not getting my hopes up but of dreaming of wellness for him.
People want to know if Quinn's "O.K." We may never be able to say he's truly safe; perhaps that's something we share with all parents. In the last year, though, his speech has taken off; he's walking well, too, even if he fatigues rather easily. That's O.K. He's at a wonderful school where he's loved and where they don't mind the extra effort he requires.
Quinn is totally unique, and yet a lot like other four-year-olds: he loves trains, spaceships, and computer games. He's got a hilarious sense of humor, and he loves to be told stories. I'm an extremely proud parent: I have a loving, inquisitive, bossy, and brave son.
Timmons Roberts and his family live in New Orleans, Louisiana, where he is an associate professor in the Department of Sociology and the Program for Latin American Studies at Tulane University.
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