Sitting in the dialysis clinic for the week’s second dose of dialysis, Isaac Fletcher, 11, chipped away at his homework in hopes of earning some TV time.
At 10:10 a.m., he wrapped up his work and grabbed the remote.
On the screen, the care team played “Guess the Animal.” Kids could call in live from their room in the children’s hospital and offer a guess.
“It’s a Tiger,” Isaac said.
Certain of his choice, he picked up the phone and dialed the show.
Child and Family Life specialist Molly Gering answered.
“It’s Isaac!” she said.
The call-in has been one of his favorite things over the years.
He and his mom, Michelle Fletcher, of Ionia, Michigan, travel to Grand Rapids three days a week for the four-hour dialysis treatments at Helen DeVos Children’s Hospital.
“He’s used to it,” Michelle said. “It’s his routine and he doesn’t complain about it.”
Farm and family
The Fletcher family lives on a farm where Isaac’s dad, Kevin Fletcher, is a full-time cattle and crops farmer.
While Isaac and his sisters busy themselves with a colony of cats and all the excitements of farm life, Michelle devotes much of her day to Isaac’s care.
Keeping up with his health is a full-time job.
His mom is front and center at every appointment.
Isaac has faced multiple complex medical conditions. He had a heart transplant at 5 months old and has kidney disease that resulted in almost complete loss of kidney function, leading to a need for routine dialysis.
His family learned early on to make the best of every situation.
Kidney failure is his main concern, Dr. Cai said.
The goal? Get Isaac on the transplant list.
It’s an ongoing process, requiring evaluation from a team of experts.
“We will soon start our evaluation of Isaac with hopes of getting him on the donor list,” Dr. Cai said. “And we hope he can get a kidney soon.”
Through it all, Isaac has been a delight.
“He is so positive and cooperates well with our teams to diagnosis and treat his complicated medical conditions,” Dr. Cai said. “And his family is so nice. They work hard to get Isaac the best care possible and take great care of him.”
Isaac’s condition has led to an extensive list of ailments.
“He has a lot of symptoms we are not completely able to explain,” Dr. Cai said. “Headaches, migraines, muscle pain, lack of energy and being limited on many physical activities.”
An extensive care team is involved in his treatment, including specialists in pediatric nephrology, neurology, pulmonology, cardiology, gastroenterology, rheumatology, infectious disease, immunology, endocrinology, ophthalmology and behavioral health.
“Isaac wants people to know that he is not the only kid in the hospital looking for a kidney,” Michelle said. “And if anyone is up for being an organ donor, to please reach out to the hospital or Gift of Life to express interest.”
Isaac’s appointments aren’t all filled with dialysis, exams and other treatments.
There’s also fun to be had.
He recently participated in a cupcake design competition organized by the Child and Family Life team, in partnership with The Salted Cupcake.
On a recent weekday, sitting in the Helen DeVos Children’s Hospital library, he eyed his sweet creation.
“It’s called Doom of the Dinosaur cupcake,” Isaac said. “It basically shows the three ways that a dinosaur could die.”
Meteorites, lava from a volcano or a tar pit, of course.
All atop a chocolate cupcake.
His delicious design featured a volcano erupting molten lava, covered in meteorite candies, overflowing with dark chocolate tar.
Isaac is a big fan of dinosaurs. He just started watching the Jurassic Park series.
“He’s basically into anything that isn’t real,” his mom joked.
Isaac has become a familiar face in the dialysis clinic and inpatient areas over the years.
Most recently he found himself in the children’s hospital for adjustments to his dialysis catheter.
As he sat in his hospital bed, he surrounded himself with piles of colorful Legos.
He’s a Lego master, as his mom puts it.
He creates fascinating worlds for his characters.
He fidgeted with a two-seater yellow airplane outfitted with skis, important tools for the snowy landings surrounded by aliens and other creatures.
“The zombie aliens are missing heads, but still alive somehow,” he explained, overseeing a test landing with the plane on his hospital tray.
He knows how to make the most of every situation.
Thanksgiving, Christmas, Valentine’s Day and the Fourth of July—all holidays he has spent in the hospital at one time or another.
“We have been in the hospital for Christmas twice,” Michelle said. “He usually ends up with more than what we would have bought him. The hospital does a really great job making the holidays special.
“He’s more than a frequent flier for sure.”
Even when Isaac is feeling well, the hospital has been a great place for him to be, she said.
“There are a lot of people that take good care of him here,” she said. “And for that we are grateful.”