Liz Beaulieu is likely the only person in the world who can say she saved her child by falling down the stairs.
Her daughter, Arielle, was just 4 days old. Liz was carrying her downstairs when she slipped. Not sure whether Arielle had hit her head, she whisked her to her local ER.
“She seemed fine, and they said that she looked fine,” Liz says. Still concerned, though, Liz kept a close eye on Arielle over the next couple of days. That’s when she noticed something.
“I noticed the slightest flicker of her eyes,” Liz recalls, “and decided that I wanted to get it checked out.” She took Arielle back to the hospital, asking them to do a CT scan. The hospital demurred, but Liz insisted, telling them she needed the peace of mind.
“So they did the scan,” Liz recalls, “and they found an enormous tumor.”
Arielle had been born with a congenital intracranial teratoma (CIT)—a kind of germ cell tumor and one of the rarest of rare brain tumors. CIT grows rapidly, squeezing the brain and eventually taking over all of the space inside the skull. Very, very few children survive.
First, more questions than answers…
But Liz and her husband Phil didn’t know any of that yet. Their local ER had only been able to tell them that something was very wrong, that fluid was building up in Arielle’s brain—a condition called hydrocephalus—and that they needed to get her to their nearest pediatric hospital as quickly as they could.
It was only when Liz and Phil arrived at the pediatric hospital that doctors told them Arielle had a tumor and that there was no hope of cure. “They said that she’d probably have anywhere from a few weeks to maybe a few months.”
After an MRI, though, neurosurgeons thought they might be able relieve the hydrocephalus and remove at least some of the tumor, at least enough for a biopsy and diagnosis.
However, the biopsy didn’t provide any clear answers. Nor did a follow-up operation where neurosurgeons removed about 20 percent of the tumor. It looked very malignant, but no one could say what kind of tumor it was.
Arielle’s doctors asked to put her on chemotherapy to slow the tumor down while they searched for more answers. Before agreeing to chemotherapy, Liz and Phil decided they wanted a second opinion from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
…but finally solutions
When Liz, Phil and Arielle came to Boston, Drs. Mark Kieran and Liliana Goumnerova—the medical neuro-oncology and neurosurgical oncology directors, respectively, at the Dana-Farber/Boston Children’s Brain Tumor Center—felt strongly that the only way they’d be able to treat the tumor properly was to try to remove more and find out exactly what it was.
Despite the tumor’s size and how close it was to major blood vessels, the pituitary gland and Arielle’s brain stem, Goumnerova was certain that she could operate on it safely.
“Her confidence made us feel much better about operating when no one else seemed to want to touch Arielle,” Liz says. “She was so matter of fact and confident that it put us at ease.”
Arielle underwent surgery on April Fools Day 2013, when she was 1 month old. Goumnerova was able to remove 95 percent of the tumor.
After the surgery, the Dana-Farber/Boston Children’s team diagnosed Arielle’s tumor as a CIT. The diagnosis made it clear that Arielle’s family had been right to avoid chemotherapy. CIT cells closely resemble normal brain cells in some ways and so don’t respond well to chemotherapy.
“It worked out well that she didn’t start chemotherapy,” Liz says, “because it wouldn’t have stopped the growth of the tumor and would only have exposed her to needless toxicity.”
But the diagnosis still left the family in unknown territory. Only a handful of children Arielle’s age had, at that point, survived a CIT, so Kieran and Goumnerova weren’t sure what to do next. Through a colleague, they had Arielle’s case presented at an international conference of germ cell tumor experts. “We had doctors from all over the world weighing in on how to proceed,” Liz says. The consensus: watch and wait.
Two months later, the tumor started showing signs of growth again, prompting one final surgery in July 2013. This time, Goumnerova removed it completely.
Now nearly two-and-a-half, Arielle is “100 percent normal,” Liz says. “In the very beginning, we were told that if she survived, she could very possibly never walk, never talk. They thought she might be blind. She was having seizures and all sorts of hormonal imbalances. She was a mess.
“Today, she’s not on a single medication,” Liz continues. “She’s just perfect.” And her scans are clean.
Because probably Arielle’s the youngest child to survive this rare tumor, she’ll get scans every year into adulthood. But so far all signs are positive.
“I don’t think doctors use the ‘miracle’ word very often,” Liz says, “but I don’t know if we’ve come across a doctor that hasn’t said that about her.
“The most miraculous thing,” she adds, “was that I fell down the stairs with her, and it probably saved her life.”