Bright-eyed and energetic, Madison Kitz has been dealing with medical issues all of her life. When she was just 3½ months old, Madison was diagnosed with Wilms Tumor, a rare kidney cancer. After months of chemotherapy, her affected kidney was removed, but the battle with cancer continued. About five years later, two new tumors surrounding her remaining kidney appeared with a vengeance.
By then, Madison was nearing the end of first grade. In spite of more radiation and chemotherapy, the oncology team did not want to put Madison at any further risk of the cancer returning. Her second kidney had to be removed. Madison struggled for several months to keep weight on, to adjust to life in the hospital, and even to keep up with school work. Her efforts paid off. She’s on track at school, and if her radiological scans keep coming back clear, she’ll be eligible for a transplant in less than a year.
In the dialysis unit at Packard Children’s, where she must spend three afternoons a week, Madison feels safe about expressing her opinions. Her mother, Lisa, has always been her first line of advocacy. “Madison is very specific about her needs and she’s not afraid to voice that,” says Lisa. “I’ve taught her that since the beginning.” Lisa and Madison work together with her three primary dialysis nurses to ensure that Madison will be the decision-maker in her care whenever possible. “On some things, there are no options,” Lisa says. “But where there are, then she gets more leverage.”
That leverage makes Madison feel empowered. She has clear preferences about the regular procedures she must endure to maintain her health. Every three months, her gastrostomy button, used for supplemental feedings or medication, must be removed and replaced. For Madison, this used to be an uncomfortable and anxiety-provoking procedure. Lisa and Madison realized that a familiar face in a familiar setting might improve Madison’s experience. They asked the head nurse if she could perform the procedure right in the dialysis room. The nurse obtained approval from the nephrologist and has been doing the procedure ever since. “Now it’s like you can’t even feel it coming out or going in,” raves Madison.
Madison has preferences for her dressings, too. “I like the Chlor-preps,” she says. “Anything else stings.” Madison also likes her nurse not to change her dressing first thing upon arrival. “I like to relax for about three hours first,” says Madison.
And relax she should, since she’s coming straight from a busy day at school. A volunteer helps her finish her homework while she’s at the hospital. “But it’s not like school,” Madison adds. “Here you get to choose what you want to do.” And what does she choose? Well, Mom says she’s got to finish her homework first. But after that?
Madison points to a video screen on wheels near the dialysis machine. “I like the Nintendo game ‘New Legends of Zelda’, but it has like fifteen levels and I can only get to the third or fourth level before I die and have to start all over again.”
Madison and Lisa Kitz
Debby Monzack of Packard’s Child Life and Recreation Therapy department explains that even the Art Cart is designed with a wide variety of tools and materials to give each child as many choices as possible. “We wanted to provide kids with an art program that is open ended and child-driven, so the kids can be in control."
Lisa explains, “There are a lot of people here who love kids, who are really into caring for kids, and always have a smile for you.” And because those doctors, nurses and volunteers have given Madison a say in her care, their experience, Lisa says, “is like a big warm hug.”