Medication costly for boy with rare form of leukemia


Three of the tiny orange pills — about $300 worth — that are saving Brandon Cooper’s life sit on the kitchen counter, slowly dissolving in apple juice.

The juice is Todd and Cindy Cooper’s attempt to make the acrid medicine more palatable for 9-year-old Brandon, who would rather be playing basketball than forcing down the bitter, daily reminder of his illness.

The medicine is Gleevec, virtually the only treatment for Brandon’s form of leukemia called chronic myelogenous leukemia, or CML, a rare disease that’s even rarer in children.

Gleevec’s $8,000- to $10,000-a-month cost is usually paid by the Coopers’ insurance. But each January and February, when their high insurance deductible resets, they have to come up with a large co-pay and the family’s tenuous grip on the middle class slips a little more.

Once, when the bottle held only seven days of medicine and they had no way to pay for more, a nonprofit group came to their aid.

Six years ago, the Cooper's oldest child, Brianna, was 11 when she was killed in a car crash near their home in Stuart.

Six years ago, the Cooper’s oldest child, Brianna, was 11 when she was killed in a car crash near their home in Stuart.

They’re not sure what will happen this year.

But Todd and Cindy are certain of this: They would not survive losing another child.

Six years ago, their oldest child, Brianna, was 11 when she was killed in a car accident near the Cooper’s Stuart home.

Her smiling photos, like those of Brandon and his twin sister, Brylie, as well as 15-year-old Bryce, a high school freshman, decorate the foyer of a home where the family has so far managed to float just above a sea of bad breaks.

Outside, an intensely-focused Brandon demonstrates how he earned the “best dribbler” and “toughest player” awards on his YMCA team, despite his small size. Cancer and the medications that control it have restricted his growth. But, judging from the way he spins and shoots, he’s wearing the right T-shirt, the one that reads “Beware of Me.”

“He can hold on with the best of them,” says Cindy of her son.

Todd plays more carefully since recent back surgery curtailed his work hours, a frightening situation for a family that relies on his sales director job and the insurance that comes with it.

Cindy’s hours at her job at an orthodontist’s office are often cut short because of Brandon’s frequent fevers or her own struggles with Crohn’s disease, a gastrointestinal condition.

They’re grateful that Brandon’s leukemia is in remission, thanks to the drug he may have to take the rest of his life, yet Todd and Cindy worry about his fragile immune system. Brandon’s environment has to be kept germ-free. An infection could be deadly.

Yet, the dishwasher that sterilizes their dishes is broken. Mold that can’t be eradicated is growing in the freezer.

And, Christmas is coming.

How do they explain, again this year, to the twins, to Bryce, who just got his driver’s learning permit, the awful choice between paying the family’s medical bills and buying even the simplest presents?

 

BRANDON’S WISH:

Four years after 9-year-old Brandon Cooper’s sister died in a car accident, his family struggles to pay for the medicine keeping him alive. The Stuart boy is battling a form of leukemia called chronic myelogenous leukemia, or CML, a rare disease that’s even rarer in children. One of Brandon’s medications alone costs $8,000 to $10,000 a month, and it’s usually paid by his parents’ insurance. But each January and February, when their high insurance deductible resets, they have to come up with a large co-pay. The family needs help paying off more than $10,000 in medical expenses. They would benefit from new kitchen appliances, and the parents could use gift cards to purchase Christmas presents for the children.

Photography by Greg Lovett/Staff

Nominated by The June C. Baker Foundation for Kids with Cancer

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