Diffuse intrinsic pontine glioma 3

BILLINGS — Maylin Bell is like any other 4-year-old girl. She loves to be silly, she loves to dance, and she loves spending time with her two older sisters. She's also a huge superhero fan and loves Spider-Man and the Hulk.

For about eight months, the Billings girl had been acting different. Erratic sleep patterns, trouble maintaining balance and even night terrors. What doctors thought was behavioral problems quickly changed after an MRI was ordered, and that prompted an immediate trip to Salt Lake City for further tests.

That trip turned into any parents’ worst nightmare. On Aug. 12, she and her family's lives were flipped upside down.

Maylin was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). It's a rare form of pediatric brain cancer, almost unheard of, and without a cure.

"What we’ve heard and what we’ve found out about this type of brain tumor in particular. It’s one of the most aggressive types of pediatric brain tumors that exists," said Kendall Boecara, Maylin's aunt. (Full disclosure: Kendall Boecara is sister-in-law of reporter Phil Van Pelt.)

"Her brain biopsy was essentially a minor brain surgery, and Maylin was what seemed like a normal little girl the night before when I saw her. She was running around playing Nerf guns…. Running through the hospital showing everyone her Spider-Man pajamas. The next morning, they took her back for her second MRI and the brain biopsy, and they warned us that she could come out with some neurological deficit. We noticed pretty much immediately when she got back from the operating room that she had lost some movement in her left arm and left leg and her eyelids weren’t able to stay open," said Boecara.

Around 300 cases of this type of cancer are diagnosed every year in the U.S., and around the same amount in Europe. It's so rare that the doctors involved were floored by their finding.

"The doctor was devastated. He couldn’t believe this is what they found on imaging. It wasn’t even on his differential.... The neurosurgeon was very apologetic during the whole thing. I remember the attending neurosurgeon just looking at my sister and her husband and saying, I’m so sorry. I just dropped a ton of bricks on you. It was hard especially when you see the image pop up and you see a tiny little brain with a massive tumor in the middle of it," added Boecara.

Maylin is currently just finished week two of her six radiation treatments in Salt Lake City. The results are positive so far, but it's only a temporary solution and something that would've been a problem even if found earlier. 

"Because of the location of this tumor, it's inoperable. It's in the brain stem so it’s going to stay there regardless of when you catch it and because there is no known treatment for this tumor other than trying radiation to try to slow it down. It wouldn’t matter if we caught a year ago, six months ago or two months ago. We’d still be in this same spot getting Maylin ready to start radiation and trying to get her some more time to have full function of her body. Once the side effects and effects of radiation wears off then the tumor will likely just continue to grow pretty aggressively. So, our time is limited with Maylin but we’re just trying to take it day by day and give her the best day every day and just keep letting her have good days and be a happy little girl," Boecara said.

Radiation is the only form of treatment because currently no form of chemotherapy attack this type of tumor. Maylin's family is focused on spending the time they do have with their daughter and hope that their story can help make a difference for another family.

"Our goal for this is spreading awareness about this tumor. And I think the biggest thing that my sister wants to get across is that if you feel like something is wrong with your kid. Take them to the doctor and keep taking them to the doctor. And if they tell you it's behavioral and you truly feel like something is wrong. Keep pushing. And there’s been no serious advancements in treatment for this tumor in the last 40 years. So, that’s why we feel that getting the word out there, that this type of tumor exists and how aggressive and devastating it is, is so important. Because we obviously need funding and research directed towards this type of tumor so that hopefully treatments can be found for patients in the future," added Boecara.

If you'd like to donate to help Maylin and her family through this trying time, please visit the following site: GOFUNDME. You can also go to any Wells Fargo and donate directly into an account set up for Maylin. The name of the account is #MightyMay. 

If you'd like to follow Maylin's story, please check out her page at CaringBridge.com

https://www.ktvq.com/news/local-news/billings-girl-diagnosed-with-rare-form-of-pediatric-brain-cancer