Hormone helps Island boy gain height
Published 6:42 pm Monday, November 24, 2008
By Diane de la Paz’ email=’Diane.de.la.Paz@cmg-northwest2.go-vip.net/mi-reporter
The joke at Islander Middle School is that 12-year-old Aaron Poor is on steroids. That’s why, the story goes, he doesn’t look just like his twin brother Ben.
The real reasons for their differences — Aaron’s a half-inch taller than Ben, and his feet are bigger — are more complicated than any tall tale about drugs.
When Aaron was 4, he was diagnosed with leukemia. After three years of chemotherapy at Children’s Hospital in Seattle, the cancer went into remission. But Aaron was left to cope with chronic renal insufficiency (CRI), a kidney disorder that robbed him of nutrients such as vitamin D and calcium. He stopped growing.
Aaron’ s treatment included Prednisone, a corticosteroid, vitamin D supplements and erythropoietin or EPO to increase his red blood cell count. The Prednisone made him overweight and his face and body puffy, the chemotherapy took his hair and the kidney trouble kept him small. Aaron was much shorter than his twin. So his nephrologist, Allison Eddy, recommended growth hormone, or GH, therapy. The drug, Nutropin, has worked like magic. “Probably within two months, we could see a huge reaction,” said his mother, Geri. Aaron has grown 15 inches in four years, to just shy of 5 feet. GH, however, isn’t as simple as taking a tablet. It’s a protein that must be injected every night into a leg.
In the beginning, Geri and Aaron’s father, Dean, could sometimes give him his shot while he slept. Once a week or so, they cheered him up with sets of Crazy Bones, small plastic toys that were the rage back when he was 7 and 8 years old.
But by the time Aaron turned 12 this June, he’d grown out of all that. “The prospect of putting a needle into yourself scares you off,” at first, Aaron acknowledged. “But I said, I can do it,’ and I just did it.” The Nutropin shots themselves don’t make him feel any different — but of course growing up to the normal height for his age does. At school, Aaron said, “it’s easier to be tall.” The lunch lady might be more inclined to give seconds to the bigger kids. “It’s assumed,” too, that “if someone’s taller, they’re older and they know more.” When Ben and Aaron played soccer, they noticed something else. They call it “the pity thing.” “People wouldn’t steal the ball from a fat, bald kid,” Ben began. “They wouldn’t steal the ball from a fat, bald, short kid,” added Aaron. To meet Aaron and Ben together today, though, is to see two boys who are well-adjusted, articulate and altogether sunny. They’re not your run-of-the-mill brothers. No bickering, no ribbing. Sitting at their dining room table, one gets a sense of solidarity. Ben, for his part, doesn’t seem to have a beef about Aaron getting so much attention, so many Crazy Bones and now, a little more in the size department. Aaron wears a 9-1/2 shoe to Ben’s 7-1/2. Throughout Aaron’s cancer treatments, Ben took part in Children’s Hospital’s “Sib Shop,” a club for siblings of children with serious illnesses. “It was fun. We went swimming, ate cookies,” Ben said. “I stopped this year because he’s not that sick.” These days the boys play badminton, video games and Ping-Pong. The family went on a camping vacation in Oregon this month. Aaron’s nightly hormone shots are no problem, Geri said. The vials are kept in a cooler. Geri and Dean don’t foresee taking Aaron off Nutropin until he’s 18 and finished growing. They tried reducing his dose 25 percent when he was 11 and had caught up to Ben’s height, but went back to the regular dose when they saw Aaron’s growth fall off slightly. Since Aaron’s medical history precipitated his need for GH, the Poors’ health insurance covers his Nutropin. Might they choose, then, to increase his dose and give him a little more height? Tall people do better in society, according to Doug Diekema, interim director of the Center for Pediatric Bioethics at Children’s Hospital. “Shorter people earn lower salaries; they get fewer promotions,” and the opposite sex tends to find them less attractive, Diekema said, citing recent research. The discussion over GH therapy, is whether it should be used to treat “a societal bias” favoring taller people. Nutropin is replacing what Aaron lost, and there’s not much debate over the ethics of GH therapy for a cancer survivor, Diekema said. However, he cautions the families of otherwise healthy kids, and their doctors, pointing out the drug makers’ copious marketing efforts. “The pharmaceutical companies, behind the scenes, have created new markets for this drug,” Diekema said. Elsewhere in the country, he added, one company persuaded a school district to implement “height screening programs,” that categorize some children as short and possibly needing GH. As GH is ever more widely prescribed, Diekema said, the question will keep arising: “Are we treating a disease, or an unfair societal bias?” Geri’s not interested in making Aaron any taller than he would have been without cancer and chemo.
“We’re not increasing the dose now,” she said, since Aaron has reached the median height for his age. “We’ve got a pretty good comparison,” she added, looking at Ben.
For the Poors, GH therapy has been part of a happy ending for a difficult period in the family’s life. Last month the Poors celebrated a major milestone: Aaron’s been cancer-free for five years since his last chemo treatment.
Now he wants to tell his story, shots and all, to encourage other kids as they cope with serious illness.
“The people who have leukemia, their lives are filled with bad news,” he said. “It’s good for them to hear some good news from a survivor.” Nutropin’s effectiveness for Aaron is clear. Also, the drug is fairly risk-and side effect-free, Diekema said. Its maker, Genentech, is busy promoting the drug: New York free-lance publicist Amy Covino, representing the drug maker, contacted the Mercer Island Reporter with information about Aaron’s success with Nutropin.
Other companies, including Eli Lilly and Pfizer, also offer GH. “As far as I know, there are no significant differences among the different brands,” Diekema said. “I’m not aware that one is more popular than the others. (I) just know that the competition is fierce: lots of ads, etc., trying to convince physicians that one is better than the other.” Ben and Aaron spent this summer with braces on their teeth — but again, the growth hormone put Aaron a little ahead of his twin. He had his permanent teeth by early 2004 and had his braces put on that spring, so he’ll be done with orthodontia this November. Ben wasn’t ready for braces until June 2005, and will have to wear them until December 2006. Looking at her sons, Geri reflected on how growth-hormone therapy has affected the whole family. Most twins’ parents, she said, look for ways to distinguish their kids and encourage them to assert their differences. “But we had so much time when they looked very different,” while Aaron was ill. These days, it’s reassuring, she said, to see Ben and Aaron and say, “Oh, they look alike,” again.
