Lisa Dluger’s family is on a journey no one wants to take.
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Everyone is trying to help — family, neighbors, friends of friends of friends — but Dluger just wishes she was taking her son to school for a full day.
The Buffalo Grove mother wishes her son’s situation had not become so tragic, so fast.
Dluger’s son, 11-year-old Joshua McFadden, suffers from a rare and often terminal form of cancer. Diffuse intrinsic pontine gliomas form on the brain stem and then move inside the brain. But Joshua’s mother, his father Jeff McFadden and many more are organizing a string of fundraisers to help the family in their fight.
Dr. Stewart Goldman, who is leading Joshua’s treatment at Lurie Children’s Hospital of Chicago, said clinical trials over the past 35 years haven’t greatly improved treatment for Joshua’s form of cancer.
“We’ve yet to make any major progress in treating the disease,” Goldman said. “The symptoms are pretty rapid.”
Bradley Egel, a neighbor near the family who has volunteered for several nonprofit groups that work to fund research for a cure, said little is being done about the little known and rare disease.
“It’s the Grim Reaper of pediatric cancers,” Egel said.
Until January, Joshua’s story was a common one. An Ivy Hall Elementary School fifth-grader, he loves computers and excels in math. His dream was to tour the Google headquarters in Mountain View, Calif.
But in January, he started seeing double and vomiting. His mother took him to the doctor.He was then sent to Lurie Children’s Hospital of Chicago. On Feb. 2, the Lurie staff said four words no one in Joshua’s family had ever heard before – DIPG for short.
“I just started crying,” Dluger said. “We don’t know why he got it.”
Goldman said DIPG attacks the pons portion of the brain stem, which helps control motor function. That section, like the stem’s other two sections, are vital to bodily function.
“Everything is running through it,” Goldman said.
Shortly after Joshua’s diagnosis, the family made daily trips to Lurie for treatments. After six weeks, they completed the program, but Joshua’s tumor remained.
A men’s lacrosse team in Elmhurst “adopted” Joshua, Dluger said. They now drive down to watch the group practice and play.
The family recently visited Google’s headquarters — a trip made possible by the Make-A-Wish Foundation of America, which works with children facing life-threatening conditions.
With less research money dedicated to the rare disease than other types of cancers and serious illnesses, Dluger said they are fighting back through fundraising.
Ivy Hall Elementary scheduled a closed event for Joshua’s classmates on April 22. On April 29, the Emerald Isle bar in Chicago’s Edison Park neighborhood is donating its space for an adults-only night of music and raffles. Some of the money will go toward paying Joshua’s medical bills, and some will go to the Michael Mosier Defeat DIPG Foundation, a fund created by the family of a young DIPG victim in Maryland, Dluger said.
Dana Kroll is that event’s organizer. Joshua’s stepfather, Dave, was Kroll’s faculty adviser while she worked at the radio station at Harper College.
She said that after she heard about Joshua’s plight, she was motivated to help.
“We just started cranking away at it,” Kroll said. “We’ve never organized anything like this before.”
The family is getting help from Egel,who has worked with the American Cancer Society, the Leukemia and Lymphoma Society, and has formed his own organization called the Walking Hope. Among other supportive help, Egel is also helping them understand how governments will tax the donations.
Joshua’s family will head back to the doctor April 25, when the results of the boy’s MRI should be known. What that scan reveals will help determine the future course of action.
“The whole thing is so surreal,” Dluger said. “It’s surreal to find out there’s something wrong with your child. I’m sitting here like, ‘Oh my God, what am I supposed to do now?'”
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