Allison Baker was scared when she first learned about the tumor in her brain, but she learned to be brave and now wants to help others.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
Turning 13 is a big deal. But how do you celebrate when you’re in the middle of treatment for a brain tumor?
Allison Baker didn’t let it stop her from making a splash with her sister, Ava, and parents last month at Great Wolf Lodge near Cincinnati.
She went down as many water slides as she could, pushing through her fatigue to enjoy it all, her mom said.
Allison, diagnosed with CNS (central nervous system) germinoma earlier this year, has counted on her family since she received the frightening news after experiencing an unusual increase in thirst and urination, beginning last fall.
She had just started the cross-country season at Brownsburg West Middle School at the time, so her parents, Chris and Amy, thought maybe she was just extra thirsty.
During a visit to her pediatrician the following February, however, unexplained weight loss led the physician to suspect something was wrong, and Allison was referred to Riley Children’s Health.
Tests found that her pituitary stalk, the connection between the pituitary gland and the brain, was inflamed, measuring much larger than it should, Amy Baker said.
Doctors treated her for diabetes insipidus, which occurs when the body can’t regulate how it handles fluids. The condition is caused by a hormonal abnormality and isn’t related to diabetes. In Allison’s case, a brain tumor had affected the function of the pituitary gland.
A follow-up MRI showed the growth had doubled, and another growth was found on the pineal gland, a tiny gland in the brain that is part of the endocrine system.
Germinomas are usually malignant but tend to grow and spread slowly and can usually be cured. They occur most often in teenagers and young adults. CNS germinoma accounts for about 3% of all brain tumor diagnoses.
While the condition is treatable, it requires chemotherapy, radiation and multiple MRI scans over several months. Allison is under the care of Riley oncologist Dr. Daniel Runco and endocrinologist Dr. Juan Sanchez.
“We were told it’s treatable, so we didn’t feel too doomsday about it,” Allison’s mom said. “It was hard to take in, but this kid is the strongest person I know, and we just pushed through.”
Allison went through four rounds of chemo at Riley, then received daily doses of proton therapy – a type of radiation – for several weeks in Cincinnati, finishing just after Thanksgiving.
Scans have shown no evidence of disease, but Allison will have one last MRI next month to ensure that she is clear.
Asked how she stayed strong, the seventh-grader credits the circle of people around her.
“I had a lot of support from teachers and my friends and family. It helps to know that people care, and I learned to smile more,” she said.
Some of those lessons she learned from a stranger – another young girl in Florida who received the same diagnosis. The family met her through Facebook.
“They have helped us through this,” Amy Baker said. “We understand what it brings to you when you are able to connect with somebody else. We want to pay it forward.”
Beth Armstrong, pediatric neuro oncology coordinator and nurse at Riley, said Allison is wise beyond her years.
“She was really scared when she started her treatment, but she handled it so well. She said to me one day that if she can tell her story, and hearing it helps anyone that also feels scared, then she wants to do that,” Armstrong said.
“She has worked so hard through treatment to continue in school and get back to running, and she did it with a smile every day. I have been really lucky to be a small part of Allison’s story.”
Running is Allison’s passion. She wasn’t able to compete in cross-country this season but hopes to be ready for next year, she said.
“Cross-country is my thing. It took me awhile to discover that,” she said. “I wish I was allowed to be running miles right now, but as soon as I build up the endurance to run even half a mile, I’m going for it. I want to be ready for next year.”
Over the past several months, Allison’s cross-country team hasn’t forgotten her, making her an honorary team member all season, presenting her with a jersey signed by the team, even running by the family’s Brownsburg home and dropping off inspirational messages in the yard.
“It’s been a beautiful thing,” Baker said, grateful for the outpouring of love from their community. “It’s been a roller coaster, but we are extremely grateful that we’re having to endure only seven months of treatment. And the people at Riley – we love the nurses. There are so many special people there that we’ve bonded with.”
Among those people are nurse Sarah Timberlake and neuro nurse practitioner Kelsey Knight, both of whom have been a godsend for Allison, her mom said.
It is people like that and others in the community who have inspired Allison to want to do her part to help someone else.
“I feel like if I can put my story out there, it might comfort someone else,” she said. “This has shown me so much about myself and about people around me that I wouldn’t have known if I hadn’t had to fight. I’ve learned not to take things for granted.”
As she settles in for a quiet holiday season at home with her cats, Yoshi and Reese, and dogs, Brooklyn and Charlie, Allison is also looking ahead – first to January, when she will get her final end-of-treatment scan.
And after that – hopefully, smooth sailing. The family will celebrate with a cruise in February.
Related Doctor
