Sixth-grader with rare disease wants to be treated like regular kid
By Linda Vanderwerf
WILLMAR — Aaron Isle wants everyone to know “not to treat me different,” but that can be a tall order sometimes.
Aaron acts like any sixth-grader a lot of the time. He likes to use his Nerf gun to pester his four older siblings and his pets and he likes to hang out with his friends.
Going to school is “not my favorite thing,” the 11-year-old said with a grin this week. His favorite classes are band and math.
For one week a month, Aaron is not such a typical kid. Rather, he’s a one-in-10-million kind of kid.
Aaron, the son of Dawn and Scott Isle, was diagnosed last fall with systemic juvenile xanthogranuloma, an extremely rare type of histiocytosis which has caused many tumors in his head and eyes.
The tumors have affected his optic nerve and caused permanent changes to his eyesight. They have also affected his pituitary and thyroid glands and his balance.
Histiocytosis is a cancer-like disease, but it is not cancer. The two diseases are caused by different types of cells, Dawn said.
Every 28 days, Aaron goes to Children’s Hospital in Minneapolis for five days of treatment with a combination of chemotherapy medications and high doses of steroids.
His disease is so rare that the doctors at Children’s have never seen a case before. They are using treatments recommended by specialists in other parts of the country.
“His version is in one in 10 million kids,” Dawn said. “That’s the doctors’ best guess.”
Aaron’s tumors are shrinking, but his prognosis is unclear at this point. Doctors have said that the disease can be fought but doesn’t really go into remission, Dawn said. It could eventually turn up in other areas of his body.
“It’s all a bunch of unknowns,” she said.
Aaron comes back to school as soon as he feels up to it after his week of treatment.
Middle School counselor Jeff Winter said Aaron is a bright kid and has been keeping up with his studies very well.
He may be able to skip some homework during his treatment, but his teachers are making sure he can do the same work as his classmates, he said.
“Fortunately, he is a kid who never struggled with his homework,” Dawn said. “The teachers have all been awesome.”
The school and teachers have worked well with the family, and that helps eased some stress, she said. She has heard different stories from other families at Children’s.
Winter said those at the school want to work with the family and keep in mind that “school is secondary to health and family.”
When the diagnosis came in September, Winter put together a presentation to explain to the kids in Aaron’s classes why he might not be around all the time. He decided he wasn’t reaching enough students that way, so he decided to do the presentation for the entire student body.
Aaron’s story caught the attention of the other students. “The kids were silent,” he said of their reaction to the presentation. “They were concerned. … It was really neat to see how the student body could come together.”
The attention “doesn’t really bother me,” Aaron said. “A lot of them say, ‘hi.’”
Winter said he’s been selling blue rubber bracelets that say “I’m fighting for Aaron” during lunch periods. Blue is Aaron’s favorite color and also the color for histiocytosis awareness.
Winter’s first bag of 150 bracelets lasted two days. Another bag of about 100 sold in two lunch periods. He got another boxful, and they are still selling at $2 apiece. The grand total for the bracelet sales will be revealed at a benefit this week.
Friends in the community have organized a dance and benefit for 5 to 9 p.m. Thursday. Volunteers from the Middle School will be helping out.
The evening will include a free will donation for food, a silent auction and an under-21 dance with a live DJ. Admission is $5.
Aaron has never shown a lot of fear about his condition, his mom said. “From day one, we’ve been open and honest,” she said. Aaron probably knows more than anyone about his disease, she added.
Dawn said she and her husband are grateful for the help of their friends and Aaron’s schoolmates. Health insurance has deductibles and out-of-pocket limits, and it doesn’t cover things like gas, food and lodging, over-the-counter medications, eyeglasses or dental needs, she said.
“It’s hard to accept help, but we’re glad it’s there,” she said, and the family is doing OK through all this.
“Someday, probably 30 years from now, I’ll probably have a breakdown,” she said. “There’s no time for that now.”
Even though Aaron’s medical needs have changed, the rest of the family’s life hasn’t, she said. There are still jobs, pets and all the details of running a household.
“It’s been a change, but we take it as it comes.”
For more information about Aaron’s story and the benefit, go to www.fightingforaaron.com.