Marching for Meera: Through grief, family raises awareness for pediatric brain tumor research

On the medical watch Meera’s Marchers. We here at WGN have been on that team for two and a half  years after one of our colleague’s daughters was diagnosed with a pediatric brain tumor. He and his wife tried everything, traveled and sought treatment closer to home all in an effort to save his baby girl. In the end, cancer took Meera’s life but not the family’s dedication to find a cure for pediatric cancer.

Meera’s Marchers are coming together at the Run for Gus in Lincoln Park on Thursday night. If you’d like to join us or make a donation for pediatric brain cancer research, please go to: Run for Gus Page here

Dan Leister, Meera’s father: “She was remarkable at lighting up the room.”

Emily Leister, Meera’s mother: “She had a little bit of sass to her. She had so much personality, and she was so much fun.”

Dan Leister: “There were great things in her future.”

When you see Meera, you first notice her beautiful, happy smile, her luscious curls tossed as she ran. At first glance, a healthy three-year-old girl. But watch closely as she begins to stumble. It was the first clue for her parents — they may have major hurdles ahead.

Emily Leister: “We took her to the pediatrician, and I could tell from the look on her face something was wrong.”

Like most parents they feared the worst but assumed a minor problem.

Emily: “I thought she’s going to have an inner ear infection that’s affecting her balance. Never in a million years ‘brain tumor.’”

This scan revealed it — a massive tumor invading Meera’s brain. Dan and Emily Leister held onto hope as they held their baby girl a little closer each day.

Dan Leister: “It was like a softball in the back of her head. It was like a monster.”

The diagnosis was devastating — anaplastic medulloblastoma. Neurosurgeons removed her tumor, but cancer cells continued to grow — five courses of chemotherapy, three stem cell transplants and 52 treatments with proton radiation.

Emily Leister: “There are certain protocols and they are always trying to evolve, but what no one realizes is that most of them are just extrapolations from adult treatments, and people don’t realize that pediatric, children and adults, we’re all human but they are drastically different bodies to treat.”

They did everything they could to help their precious child deal with the onslaught of medical interventions designed to rid her body of cancer — but only making her so very weak.

Emily Leister: “The majority of people who get cancer are adults, so that’s where the bulk of the money goes. And it simply seems to be a numbers game, and that’s really hard to swallow.”

Through it all, an education for the Leisters and a tough dose of reality — there are too few treatment options for children like Meera. Only about three to five percent of federal cancer research dollars go to children — even less for brain tumors.

Emily Leister: “I certainly never would have guessed in a million years that society didn’t pump money toward kids with cancer. I assumed that there were tons of things in line, but to learn those harsh numbers, that was an eye opener.”

That’s why through their grief, Dan and Emily push forward partnering with the Run for Gus, which pumps money into pediatric brain tumor research — spearheaded at the very hospital where Meera was treated with such tender care. Dr. Jason Fangusaro commits his life to making a change.

Dr. Jason Fangusaro, Lurie Children’s pediatric neuro-oncologist: “Funds for less common diseases like brain tumors in children don’t come by as easily, and so these events raise money to help us move forward and break barriers in the science world so we can gain information and improve survival.”

And after years with few breakthroughs, doctors do have some exciting prospects.

Dr. Fangusaro: “For example, the use of immune therapy or immunotherapy, vaccines in pediatric brain tumors is coming to the forefront. We’re also learning more about the biology of the tumors, something we did not have any understanding of 30, 40 years ago. And now we’re able to develop drugs that target the biology of the tumors and so because of that we’re able to get less toxic therapies with still hope for fighting the tumor. We’re very excited about that.”

And after the unimaginable pain of losing a child, the Leisters are turning their pain to progress in Meera’s name … and paving a way for the future for their son Wilson and baby girl on the way.

Dan Leister: “You have to look forward. There’s so much technology in the world, but yet there’s not enough money for research in this particular field, and we have to change that. We have to cure these kids.”

Meera’s Marchers are coming together at the Run for Gus in Lincoln Park on Thursday night. If you’d like to join us or make a donation for pediatric brain cancer research, please go to: Run for Gus Page here

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3 comments

  • Kimberly

    Beautifully told and powerfully motivating. Thank you Wgn and Dina Bair for giving this story publicity and infusing more awareness. The more minds and money, the better chance we can cure our babies.

  • Aye

    Meera means “she lights up” or “She brings light” in Hebrew…. This seems quite appropriate for this beautiful little girl. Thoughts and Prayers are with the Leister family.

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