Spotlight on National Cancer Survivors Day: Expert and Compassionate Care Help Lillian as she Battles a Glioblastoma

By Alexandra Becker

Mike and Erin Callahan can recall the date without hesitation: September 10, 2019.

It was the day their daughter had a seizure during class.

Prior to that Monday, Lillian, who was just nine years old at the time, had been a picture of health. Active, happy and social, her parents would sometimes call her the “Mayor of the school” because she was friends with everyone and involved in everything; “A magnetic force,” her father said.

Scared and in shock, the Callahans rushed to the local hospital near their home in Atlanta, GA, where Lillian had been taken by ambulance. A CT scan revealed a lesion on the right side of her brain. Further testing, including an MRI and two biopsies, confirmed what had become their greatest fear: Lillian had a brain tumor.

“A surgeon came in and showed us the scans, and it was essentially taking up about a quarter of her brain,” recalled Lillian’s father, Mike. “The biopsy samples gave conflicting information, but they classified it as either a grade three or four glioblastoma.”

The tumor, the surgeons said, was inoperable, both because if its size and location. After much consideration, as well as a second opinion obtained from Boston Children’s Hospital, the Callahans moved forward with the recommended treatment plan—a combination of proton radiation treatment and oral chemotherapy.

The therapies successfully destroyed a large part of Lillian’s tumor, leaving necrotic tissue in its place. Unfortunately, a mass that size continued to carry risks, as well as extreme discomfort. In addition to her anti-seizure medication, Lillian was placed on a strict regimen of steroids to help her cope with persistent and extreme headaches.

“The steroids helped her headaches, but they caused serious side effects which were impacting her quality of life,” said Erin. “She gained a lot of weight, began losing her hair, and she ultimately developed Cushing’s syndrome. She became sensitive to light and her skin was paper-thin.”

The Callahans again inquired about surgery. Now that part of the tumor was dead tissue, was it possible to remove that section? Could surgical intervention alleviate her headaches? Might Lillian foresee a future where she could eventually stop taking the steroids?

Again, they were told it was too risky.

But the Callahans persisted. Erin turned to one of the Facebook groups she’d joined shortly after Lillian’s diagnosis. She mined the posts, scrolling and clicking through every response, looking for anything related to surgery and brain tumors.

That’s when she first came across Dr. David Sandberg, professor and director in the Division of Pediatric Neurosurgery, and holder of the Dr. Marnie Rose Professorship in Pediatric Neurosurgery at UTHealth. He is also the director of Pediatric Neurosurgery at Children’s Memorial Hermann Hospital.

“This one woman had a similar story and had written about how her doctors said surgery was out of the question, but Dr. Sandberg was able to successfully remove her daughter’s tumor,” Erin recalled. “So I sent an email through Memorial Hermann’s website and within 10 minutes I got a call from a Houston area code. It was Dr. Sandberg.”

This was on September 23, 2020—another date the Callahans won’t soon forget.

Shortly after that phone call, Mike and Erin mailed Lillian’s complete medical records to Dr. Sandberg. After carefully reviewing them, he called them and said that while he couldn’t remove the entire tumor, he could remove a large section of it, including most of the necrotic tissue, which was likely causing her headaches.

“She was never going to get off the steroids without having surgery,” Mike recalled. “And Dr. Sandberg said he was confident that he could safely perform the surgery. It was clear he had compassion for her and cared about her quality of life.”

On Oct. 14, 2020, the surgery took place at Children’s Memorial Hermann Hospital—in the middle of the COVID-19 pandemic. Lillian was in the hospital for just three days total, and in addition to what turned out to be a successful surgery, she was most excited to have had multiple visits from Dexter, the hospital’s dedicated therapy dog.

“I was thrilled that we were able to remove the overwhelming majority of Lillian’s tumor without causing any new neurological deficits or other problems,” Sandberg said. “This wonderful young girl and her parents deserved a chance to get off of steroids, which were wreaking havoc on her body in so many ways.”

Over the course of the next five months, Lillian was able to decrease her dose of steroids until, in April 2021, she was finally off the medicine completely.

“Her quality of life is one thousand percent better than it was last year. She is so much more like herself now—happier, more active, running around again,” said Erin. “When she was having her really bad headaches, she would just be stuck in bed in tears. She would say, ‘I don’t want to live like this. I want my old life back,’ and now we’re definitely seeing sparks of that playful girl again.”

Today, Lillian’s cancer treatment continues, but there are signs of hope. Her last two MRIs showed no new tumor growth and even a possible reduction in size. She and her parents continue to fly to Buffalo, NY, every other month, where she is receiving an experimental vaccine therapy at Roswell Park Comprehensive Cancer Center that targets a specific protein found in glioblastoma tumors. Although Lillian is not part of the clinical trial, which mostly includes adult patients, the now 11-year-old is receiving the vaccine under a compassionate care exception.

“We’re so proud of our daughter for her resiliency during all of this and for how hard she’s fought, but also because even now, she’s helping others,” Mike said.

Not only have her #LILISTRONG t-shirt sales raised more than $2,000 for charities dedicated to cancer research, but Lillian’s participation in the vaccine trial in Buffalo has helped expand access to the therapy for other pediatric patients with glioblastomas.

“Lillian’s story may give hope to other parents whose kids have cancer, and it certainly shows how great parents will do absolutely anything, and leave no stone unturned, for their child,” Sandberg said.

The Callahans are forever grateful that their perseverance led them to Children’s Memorial Hermann Hospital, and that their refusal to take “no” for an answer has given their daughter a better quality of life.

“Dr. Sandberg did exactly what he told us he was going to do, and the results are exactly what he said they would be,” Erin said. “We couldn’t recommend him enough. Now I’m on my Facebook groups sharing his name with other moms.”  

Comments

  1. God bless Dr Sandburg for giving my granddaughter Lili back her quality of life. Her grandparents are also very grateful to this wonderful man and share his name among our friends and those looking for hope in the shadow of this horrific disease.

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