What do you do when you are a sick kid, and the drug used to treat your tumor was not developed for children and has not been tested in children either?
My daughter, Lucille, is one of these kids. One of a statistic so high, it doesn’t bear writing out. Lucille has been fighting a rare tumor for almost three years, with a drug called Denosumab. For the first year, the drug made her nauseous and made her joints ache. Those side effects were well documented in the adults the drug was developed to treat.
After ten months of treatment with Denosumab, and a five-month drug holiday (a time when a child stops treatment to regain strength or prepare for a surgery or procedure), Lucille became sick with a problem that went undiagnosed for weeks. When we called the oncolocy office with concerns about Lucille’s worsening health–vomiting, extreme weight loss, muscle weakness–the oncology team told us to look elsewhere. These symptoms, they said, could not be caused by her drug therapy, especially after a five-month drug holiday.
By the time her doctors figured out what was wrong, she was so sick, she had to be hospitalized because she was in acude kidney failure, and her heart was at risk. Five days after her oncologist diagnosed the hypercalcemia, he realized the life-threatening condition was a rebound side-effect from her drug therapy on Denosumab.
Lucille’s oncologist had not been monitering her for hypercalcemia, because he did not know he should.
While there were a few case reports of hypercalcemia in children treated with Denosumab, they had not gotten much attention, and her doctor had overlooked them. Only now, years after Denosumab first emerged as a drug therapy to fight childhood tumors, is there a formal study with children who have suffered hypercalcemia as a side effect of Denosumab.
Lucille stopped being able to walk normally when she started having hypercalcemia. That’s also when she started dreaming of being a silks gymnast. I like to dream of her that way too–her body moving through the air instead of resting in her wheelchair, leaning over her walker, or limping in her braces.
Lucille gave voice to this dream last fall during the dream walk in the 2019 Fashion Funds the Cure fashion show for the National Pediatric Cancer Foundation. Then, in the time before COVID, she took the stage with other children like here–other children whose drug therapies made them sick. Other children whose drug therapies were neither developed for nor tested in children.
Like Lucille, all of these children have dreams in which they soar. They want to be dancers, actors, fashion designers, baseball players, heavy equipment operators, and musicians. Some of them were too sick to come to the stage, so their dreams were represented by someone else.
This year, amid COVID, the fashion show will be virtual, but the sick children will still have their “dream walks.” Lucille will be there, speaking her dream.
We hope the event will help raise awareness about the need for more pediatric oncology drug research. We hope Lucille’s dream walk will help another child not get as sick as she has become.
What do you do when drug therapy makes you sick in ways you never imagined? You keep dreaming. If you can, you keep walking.
Join us tonight for the National Pediatric Cancer Foundation’s Fashion Funds the Cure show tonight at 7, or later with the recorded video. Watch these children walk their dream walks.
The Face of Bravery 