Don’t judge the chemo kid

Those who have been through the living hell of cancer treatment understand the Hausers' decision to run away

Topics: Vital Signs, Medicine, Health

The story of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma, became tabloid fodder overnight. The boy and his mother are on the lam because the mother refuses, because of her beliefs, to authorize chemotherapy treatments for her son. Hodgkin’s lymphoma has a 90 percent cure rate with chemotherapy, and a 95 percent chance of killing a person without it. Chemotherapy will likely save Daniel’s life, and as a pediatrician I wouldn’t hesitate for a moment to recommend it.

But I would also like to turn down the volume on the talk-radio chatter and outraged editorials. That’s because nobody seems to be talking about what it takes to beat Hodgkin’s (or any other cancer). What it takes is a grueling regimen that can indeed give even a dying person pause. In fact, the Hausers didn’t refuse chemotherapy outright. They defied doctors and a judge’s ruling only after Daniel experienced some of its violent effects following one round. If you don’t understand why, listen to my friend, Arun Ponnusamy, 36, who beat acute lymphocytic leukemia. “Surviving cancer is one thing,” he says. “Surviving chemotherapy is another thing entirely.”

Ponnusamy is now an educational consultant in Los Angeles. He was diagnosed with cancer in his early 20s. His disease, like the Hodgkin’s that afflicts Hauser, has a high survival rate if treated right away. As a young adult, Ponnusamy underwent a regimen of chemotherapy treatments that Hauser, if the courts have their way, will likely experience.

Fighting cancer pits a person against potent drugs. But because of their horrid side effects, they take the doctors’ credo, “First, do no harm,” to its limits. Sophisticated as chemotherapy drugs may be, they’re not smart enough to distinguish tumor cells from healthy cells, leaving one’s entire body vulnerable to their toxic effects.

Ponnusamy underwent two years of chemotherapy at the University of Chicago Medical Center. For many months, surgeons administered a central line into his chest. “I literally felt possessed,” he says. He recalls hours of nausea and vomiting after infusions. When that was over, there would be hours more of dry heaving over the toilet. “I remember asking myself more than once: ‘How can this be doing me any good?’”

He dropped from his usual weight of 145 pounds to 110, the result of an inability to tolerate foods and of anorexia from the drugs. He stopped fitting into his normal clothes and, like most cancer patients, began losing his hair. “I didn’t recognize myself,” he says.

On several occasions, Ponnusamy had to be readmitted to the hospital after his treatments because he developed high fevers and shaking chills. Most anti-cancer drugs suppress the bone marrow, where your body rapidly produces cells of the immune system. Those of us who have taken care of cancer patients know that within days of receiving a round of chemotherapy, a patient’s immunity grinds to a halt and white blood cell counts drop to near zero, leaving the body defenseless. Suddenly even common infections become life-threatening. Some patients experience severe erosions of, and infections on, the lining of their mucous membranes, leaving their lips, gums and the inside of their mouth, throat and nose and even their stomach inflamed, bleeding and burning with pain.

Ponnusamy, like many other cancer patients, found himself admitted to so-called positive pressure rooms, where air is blown out to minimize any infectious pathogens. He was sequestered (“bubble boy,” his brother and sister called him) and given dose after dose of I.V. antibiotics for up to a week at a time. In addition to losing white blood cells, patients lose red blood cells and platelets, leading to anemia and a difficulty in stopping bleeding, even with the smallest of cuts.

Cancer patients usually go through several rounds of chemotherapy, the number of which is determined by the type of cancer and extent of the disease. Each treatment puts a patient at risk for these complications and others, such as renal failure, another common side effect. All of this can lead to a recurrent cycle of ordeals for patients and their loved ones.

While Ponnusamy had great family support, fighting cancer required sacrifices nobody could have foreseen. His mother moved in with him to help oversee his care. He recalls that his brother, eight years younger and in high school, was uprooted from his home and friends in Ohio and forced to finish school in Chicago. His sister, living in New York, would fly back to see him regularly and even helped to administer his injections, even though she was more scared of needles than he was.

Many cancer drugs have long-term effects. Some of the drugs used to treat Hodgkin’s can cause irreversible damage to the heart and lungs. Other chemotherapy agents and radiation therapy can lead to infertility and even secondary cancers of the thyroid gland.

Ponnusamy, having survived his battle with cancer, still has leftover effects today, including permanent numbness in his feet (known as a peripheral neuropathy). He has to regularly examine his feet to make sure he hasn’t injured them or developed any infections. Four years ago, he began having some leg pain. When his doctor looked at an X-ray of his left femur, Ponnusamy discovered that his chemotherapy had permanently weakened the bone, leaving him vulnerable to fractures and limiting his ability to perform certain activities.

What’s difficult to gauge is what fighting through cancer does to one’s psyche. Ponnusamy recalls dealing with his adversity with humor, maybe a bit too much. He tells me that one support group asked him not to come back after he distributed an article from the Onion parodying a man’s battle with cancer. Still, he says, “not an hour goes by when I don’t think about having had cancer.” He still has the scar on his chest from where he had his central line placed. In his home, he has a copy of his chemotherapy protocol, notes from other cancer patients he met, and even some old Marinol, which his doctors prescribed to help abate his pain and anorexia. Although he’s at low risk of recurrence and no longer requires any special surveillance to keep his cancer in check, getting sick with something as trivial as a cold still gives him a good deal of pause.

So I sympathize with the Hausers, who want to treat Daniel with complementary medicine. But there’s a reason why it’s called complementary. It may have a place, but that place must be alongside medications that will save Daniel’s life, save him from a death that is bound to be more ugly and prolonged than hellish cancer treatments.

In the end, chemotherapy saved Ponnusamy’s life, and although he wouldn’t wish it on anyone else, he agrees it’s the right choice for the Hausers. “I get how horrifying it would be to see your child go thorough chemo,” he says. “But there’s a light at the end of the tunnel.”

Rahul K. Parikh is a physician and writer in the San Francisco Bay Area. He wrote the Vital Signs column on Salon in 2008-2009. His pop culture-medical column, PopRx, runs on alternate Mondays.

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