Allison Pinion

Brain Tumor

Allison never imagined a brain tumor would be the inspiration to put her crocheting talents and compassion to work.

When Allison Pinion, a Millersburg, Ind., native, learned to crochet from her great-grandmother, the aspiring first-grade crafter never imagined how nurturing her crafty side would also nurture a compassionate spirit that would touch the lives of hundreds of cancer patients 10 years later.

She also never imagined it would be a brain tumor—her own, diagnosed when she was only 16 years old—that would be her inspiration to put her crocheting talents and compassion to work.

An MRI in March 2009 revealed the brain tumor, the cause of the headaches Allison—then a sophomore at Fairfield High School—had been dealing with for six months.

“We thought maybe they were allergy-related,” says Allison, “or maybe from stress.” The “A” student was carrying a heavy course load, preparing for a leading role in a school play and competing on the school track team.

“I was shocked,” remembers Allison about hearing the diagnosis. “I had been praying, ‘Please let there be a real reason why I’m having these headaches.’ Never did I think this would be the answer to my prayer.” 

Finding a way out of a tough spot

Allison’s doctor referred her to Riley Hospital for Children at Indiana University Health, where the next day, Allison and her parents, Trent and Cindy, saw neurosurgeon Joel Boaz, MD. He told them Allison’s tumor was a juvenile pilocytic astrocytoma, a slow-growing brain tumor most often found in children. They also learned they’re typically found in the lower back portion of the brain.  Hers, unfortunately, was in a tough spot—in the center of her brain.

Dr. Boaz wanted to monitor the tumor’s growth, and in June, a biopsy determined the tumor was benign. However, the tumor was slowly growing and it was time to make a decision about treatment.

Because of the tumor’s location, surgery meant more risks, as well as a long recovery. Dr. Boaz offered radiation as another option to consider. IU Health radiation oncologist  Andrew Chang, MD, recommended proton radiation therapy, a new, less invasive type of radiation that delivers higher doses to the tumor with a lower risk of hurting healthy cells.

“He told us this type of tumor would react best with proton radiation,” says Allison. “At that time, only three of the six centers in the U.S. doing proton radiation were using it on the brain, and one of them was the Indiana University Health Proton Therapy Center in Bloomington. We knew it must be where we were supposed to go.”

Allison blooms where she’s planted

In November, Allison and her mother moved in with friends living near Bloomington, making it their home base during Allison’s five-days-a-week treatment. Allison says the staff and other patients helped make the IU Health Proton Therapy Center a home away from home.

“I loved all the staff there,” she says. “They made such an impact on my life. They talked to me about my life and tried to get to know me on a personal level.”  

She became known as the “Craft Girl,” putting her early crochet lessons to good use by making hats while she waited each day for her treatment. The waiting room was also a safe place for her and fellow patients to share with one another what they were going through.

“One thing I loved about being in the waiting room with the other patients was that we could be so open and honest. We all talked about our conditions and the reasons we were there,” Allison says. 

She began sharing her hats too, and in January, she celebrated the last day of her treatment by handing out a full tub of them at a “last treatment party.”

That tub of hats was just the beginning. Since then she’s given away over 500 hats through Allicaps, a project she started as a way to give back. Thanks to word of mouth and a Facebook page, donations of yarn have made their way to her nimble fingers and crochet hook. Handmade hats by others have poured in as well—all of them go to the IU Health Proton Therapy Center and Riley Hospital for Children at IU Health, to warm the heads of hundreds of cancer patients.

“People who don’t even know me want to join in and help,” says Allison. “How cool is that? I’ve felt so loved by that and felt so much love for cancer patients. So many people are caring for people.”

As a nursing student at Ball State University, Allison, now 21 years old, has plans to make caring for people her career. She says her own experience definitely played a role in her decision to go into nursing.

“I was treated in such a kind, sincere way—people weren’t just doing their job,” says Allison. “I’m in my clinicals now and I can see myself treating others how I was treated.”

She’s moving forward in her life on all fronts—she and her junior high sweetheart, Chase, were married in the summer of 2013, and in the fall, her annual MRI confirmed that her tumor is still, as she describes, “like a shriveled raisin.”

“My experience at the IU Health Proton Therapy Center was unbelievable,” says Allison. “Everything’s turned out really well for me.”