Editor’s note: This is part four of an ongoing series on Charlie Waller’s struggle with cancer. Keep checking The State News for updates on him and his family.
For 3-year-old Charlie Waller, almost every meal is a struggle.
His parents tempt him with pasta and fruit — even ice cream — in the middle of the day.
But Charlie’s taste buds are damaged from radiation therapy he received to stop the growth of a tumor growing in his brain stem.
At dinner, they tell him the steak in front of him is a dinosaur — his favorite animal — to coax him into eating so he can gain back the weight he’s lost.
Now, the Waller family faces an even bigger challenge.
They’ve decided to put Charlie on a ketogenic diet — an experimental treatment that might stop the growth of the tumor.
Charlie will eat almost nothing but fat on the diet. Without glucose from fruits and other foods, the tumor might not be able to survive.
Monday, Charlie was taken to Lansing’s Sparrow Hospital to have a nasal feeding tube put in place so a liquid nutrient can drip directly into his stomach.
His parents, MSU employees John and Abigail Waller, will have to feed him through the tube at night. During the day, he can snack on treats, such as frozen sticks of butter flavored with vanilla extract.
“It goes against your common sense of a healthy diet,” said Abigail Waller, a field liaison and partnership coordinator in the MSU School of Social Work.
They’ve tried feeding him butter on pancakes made with ground macadamia nut flour to see how he will respond to the diet. So far, he’s been unresponsive, they said.
“It feels very overwhelming,” Abigail Waller said. “Everything (needs to be) completely measured — every drop of water.”
Understanding the disease
Charlie was diagnosed with diffuse intrinsic pontine glioma, or DIPG — a rare form of childhood brain cancer — on April 1, about two months before his third birthday.
Patients diagnosed with DIPG typically have about nine months to live, said Michelle Monje, a neurooncologist who studies DIPG at the Lucile Packard Children’s Hospital in Palo Alto, Calif.
After Charlie’s diagnosis, he received radiation treatment that might have extended his life about three months.
The radiation temporarily stopped the growth of the tumor, but it most likely will grow back and begin affecting his motor skills, Monje said.
“Ultimately, children are typically bedbound and unable to swallow,” Monje said.
Surgery is not an option. The cancer is scattered in Charlie’s brain stem like grains of sand, and operating could damage nerve cells that control his motor system and other important body functions, Monje said.
“It can’t be surgically removed because it’s intertwined with normal and vital tissue,” Monje said. “It’s like two colors of yarn (woven) together — you can’t take one out. There’s no way.”
There is no cure for DIPG or any other cancer, although treatments — such as radiation — exist, said James Trosko, an MSU professor of pediatrics and human development who has studied the genetics of cancer for more than 40 years.
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Almost no progress in studying treatments for DIPG has been made in the past several decades, Monje said.
For Monje, a breakthrough came after the parents of one of her patients who died from the disease offered to donate the tumor for research.
With the donated tissue, Monje was able to grow the cancer cells in a lab for the first time.
Now, scientists across the country have been able to use the cells for their own research, Monje said.
“There are a lot of different researchers now focusing on this and working hard,” she said.
“I think it’s important (while) preparing for the worst to continue to hope for the best — I hope the next few years will see some new progress.”
The next step
With few options for effective treatment, the Wallers were interested when university distinguished professor emeritus Charles Sweeley told them about the ketogenic diet.
The diet has shrunk tumors in some patients, but the results have not been proven in clinical trials yet.
“It gives them something to have some hope for, and as far as I know, it might even work,” Sweeley said. “It may not do anything other than stall the growth of it and prolong Charlie’s life. On the other hand, it might be more profound than that.”
Sweeley is working with a group of other MSU scientists and doctors at Sparrow Hospital to conduct a study of the effects of a ketogenic diet on adults with cancer.
They are waiting to receive funding before they begin the study.
The diet might disqualify the family from participating in a clinical trial with St. Jude Children’s Research Hospital, renowned for their work with cancer research. The Wallers decided to continue anyway.
Trosko has agreed to help record Charlie’s experience with the diet.
“If this turns out to be successful, then that information — if documented correctly — may then be an important finding for the whole country, if not the world,” Trosko said.
But experimental treatments can be risky, Monje said.
“I think that parents are very understandably wanting to try anything, but trying therapies outside a controlled, supervised environment of a trial can be dangerous,” she said. “I strongly recommend trying to do anything experimental within the context of a formal clinical trial.”
The Wallers are working closely with dieticians at Sparrow Hospital to monitor Charlie during his diet to make sure it does not have adverse effects.
“We have to be 100 percent committed,” said John Waller, a Lyman Briggs associate professor. “(But we have to be) willing to stop if it causes him any anguish.”
His father’s worst fear is that the treatment only will work a little. In a few years, Charlie will be old enough to understand his own mortality, which could make dealing with the disease more painful.
“If they use this ketogenic diet and it extends his life … he’s going to reach a stage in his life where he’s going to be aware of himself and his life,” Trosko said.
“(It might be) better not to have him experience this nasty diet, only to suffer with the consciousness of being able to live.”
Charlie’s parents believe he knows what is going on with his body to some extent, although at this age, he’s too young to understand the concept of death.
John Waller finds comfort knowing his son understands the stressful treatments and doctor visits are for his own safety.
Despite the difficulties, the Wallers are willing to commit to following the diet with hopes it might prolong or save Charlie’s life, Abigail Waller said.
“Now we know this little bit of information I feel like (we) can’t turn back,” she said.
