It was mid-afternoon when I walked into the Pediatric Dialysis Center at Children’s Hospital of Michigan. To my left four young people sat in beds, needles in their arms, hooked up to dialysis machines. You’d expect them to be grouchy, feeling sorry for themselves. Nothing could be farther from the truth.
They were waving lighted foam tubes that reminded me of Star Wars light sabers and grinning and joking with each other.
Chatting with them felt like I was at a family Thanksgiving dinner with all the kids bantering back and forth across the table. These young people are, indeed, a family. They pick on each other and share each other’s secrets.
“It’s like reality TV,” says Jenny Fox, art therapist in Child Life Services at Children’s Hospital. “They are so funny. I can’t wait to get over here some days.”
Fox is one of the reasons these patients are managing so well. Her three-year-old art therapy program helps them express their thoughts and feelings. It not only lets them be creative, it is a creative program itself. It has to be.
The patients only have one arm to use since the other is hooked to the dialysis machine. Not a problem. Fox has developed programs that allow them to use just one arm. For example, one piece of art was created by using remote-controlled vehicles to roll paint on canvas. There was some rivalry during the process. On occasion some of the remote control cars seemed “stray” onto another painter’s canvas.
The finished pieces were modern art, for sure … extremely creative and beautiful.
The project was so good it was accepted as an abstract art presentation at the Global Alliance for Arts and Healthcare conference in Houston in 2014.
Their artwork was also featured in an art show at Children’s Hospital last year and was turned into a holiday calendar for 2016. This year’s art show will be May 14 at the Specialty Center at Children’s Hospital. That’s one day before the Kidney Walk at the Detroit Zoo. (If you’re interested you can click here to register.)
Some of their other artwork hangs outside the dialysis center. The butterflies certainly stand out.
When I was there the young people were making a puzzle. Each one of them was given a piece and asked to cut words out of a magazine that describe themselves and show how they fit into their personal puzzle with family, friends and others.
“Dialysis is tough on the body,” says Gaurav Kapur, MD, director of pediatric dialysis and associate professor of pediatrics at Children’s Hospital. “It takes bravery to do what (the young patients) do. We try and make the experience better and give them a way to express themselves.”
These young people are indeed brave. They come to the dialysis center three times a week and are hooked up to the machines for three to four hours. They are poked each time and the arm that gets the needle swells up and doesn’t go down. It’s no small needle, either. Dialysis uses 16-18 gauge needles, roughly the size of roofing nails.
“(The art) takes my mind off it,” says Dashane L., a senior in high school, who has been on dialysis since she was 14. Her kidney failure was diagnosed in utero.
Like the other young people, she’ll go through this process until she gets a new kidney.
“We have 13 kids on dialysis today,” says Kapur.
Each one of them needs a kidney and the wait can be six months to years.
Sometimes a transplanted kidney doesn’t work immediately and patients have to stay on dialysis to jump start the new one. The transplant doesn’t last a lifetime. Most patients will need two transplants during their lifetimes.
A’jai S., a high school senior, got a new kidney at 13. She’d been on dialysis since she was nine. But the transplant didn’t work, and she has been back on dialysis ever since.
The setback hasn’t damped her personality and spirit at all. She’s outgoing and sassy and wants to be a medical or celebrity reporter.
Like A’jai, the young people I met are in school, either high school or college. They are on dialysis so much they miss school, classes and school functions. Even with a social worker at Children’s Hospital to help them with homework it can be hard to keep up, but they are all encouraged to do their work so they can go on in school and continue learning.
And they are gone so much they often find it hard to make school friends. They spend more time with other patients in dialysis with whom they share common experiences.
“Dialysis is where their friends are,” says Kapur.
That sure seemed to be the case. When I was there they had me scurrying from one bed to another, delivering good-natured messages such as “please tell so and so to quick picking on me.”
The banter never stopped during my visit.
They are friends, and they are brave.
Aaron R.’s kidney failure was discovered last year when his face swelled up during basketball practice. A freshman, he plays for Madonna University and averages 9.6 points a game.
Semaj J. is the new kid on the block. He found out about his kidney failure during a school field trip to Washington, DC, in April when his eye lids swelled and his leg became so swollen he couldn’t walk.
Sitting around on dialysis is no picnic, but as Kapur says, “we don’t dwell on what we have to do to them.” Instead they concentrate on the positive. That’s where Fox’s art therapy comes in.
In one case it was much more than a morale builder and a way for the patients to express themselves. For A’ja B. it was life-saving.
I wish I’d met be her during my visit, but Fox and Kapur shared her story with me.
A’ja found it difficult to open up and talk about what she was going through. Fox encouraged her to make a photo book to chronicle her treatment and share her thoughts and emotions through pictures and words. A’ja took her book to school to share with her friends. A teacher saw it and was so touched she volunteered to donate her kidney. It was a match and the life-saving transplant A’ja was waiting for.
A’ja hopes to get her photo book published so it can help other kids on dialysis, who are waiting for a transplant. She is also hopes to pay it forward by enrolling at Oakland University after high school and attending nursing school to help other kids.
Not all of the stories have such a happy ending. Two of Kapur’s patients have died. Those pictures remain on the bulletin board in front of his desk along with the pictures of every young person he’s currently treating.
“I love these kids and think they are amazing,” Kapur says. “I just work here. It is about them.”
And, sometimes their art.