Patient: C. J. Postighone, 5
Doctors: Leonard Wexler, pediatric oncologist, Michael La Quaglia, pediatric surgeon, and Suzanne Wolden, radiation oncologist, Memorial Sloan-Kettering Cancer Center
Patient’s parents: Carl and Robin Postighone
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Carl Postighone: C.J. loves hockey. In March 2000, he came home from playing one day and noticed his right thigh was a little bit itchy and bigger than his left. We had tests done, and the diagnosis came back that he had what’s called rhabdomyosarcoma.
Wexler: It’s a very aggressive cancer. It had spread into the lymph nodes in his belly.
La Quaglia: The tumor was in the right gluteus medius, a muscle in the hip area.
Carl: Chemotherapy was going to last for months, and after that he needed surgery, and after surgery radiation, and then after all that, another five to six months of chemo. I was in disbelief.
C.J.: People who are older know what cancer is and what you have to go through, but when I was 5, I didn’t know what was going on. I knew my parents were nervous, but I didn’t know what they were nervous about.
Wexler: The standard approach would have been three chemo drugs, but we used five. It was a pilot regimen, experimental in its combination and extremely intensive dosage. C.J. was 5 years old: We wanted to give him the latest, most aggressive possible treatment.
Carl: Hockey was C.J.’s motivation to get better. We’d sneak sticks into the hospital and set up cribs in the halls as goals. Here he was—he didn’t have any hair, and he had all these tubes in him, and the tubes would be black from him diving on the ground. The nurses would be going crazy: “He has no immune system!”
C.J.: When I was able to go home, they would have a tube in my chest and give me a backpack that had my chemotherapy in it. I remember going skating and I would have the backpack on my shoulder.
Wexler: We had twelve weeks of chemo and got an excellent response. But chemo itself, for this type of cancer, isn’t enough. He needed radiation, but if you give a full dose of radiation to the hip or spine of a 5-year-old who’s got, God willing, two decades of bone growth ahead of him, those bones won’t grow.
La Quaglia: In the surgery, I opened the abdomen to remove the affected lymph nodes and removed the tumor in the hip. Rather than giving external beam radiation, Dr. Wolden delivered the radiation directly to the area where the tumor was. That way, we didn’t pass the radiation through healthy tissue.
Carl: Overall, he spent about 200 days in the hospital. The hardest part for me was when his treatment got over. Sure we had to spend all that time in the hospital, but there was comfort in thinking, My son is getting better. Afterward, you just wait.
Wexler: When cells are able to survive the kind of intensive chemo we use to treat kids, they just can’t tolerate that kind of intensive therapy the second time around. Recurrence is almost invariably fatal.
Carl: Generally these things recur within three years, and fortunately those milestones have been met. We just went through our five-year scans. Those are our holidays.
C.J.: The muscle is growing back. I can skate again, and I’m getting much faster.
Robin: Everybody is flabbergasted that he skates. We sent a DVD of him on the ice to an orthopedic surgeon who told him he would never skate again. I’m not medical, I’m just a mom, but I can tell that everyone can’t believe how strong his legs are.