Abby’s Story: The Feeling of the Wind in Her Hair

June 03, 2019

This article was written by Jeanne Gross, a K-12 school principal in Northern Michigan.

Abby was a healthy 10-year-old girl up until the day she experienced a seizure on our way back from a mother-daughter trip to New York City. We were in southeastern Michigan, and an ambulance delivered us to the closest hospital. In the emergency room, a CT scan revealed a mass in Abby’s brain. She was immediately transferred to a hospital in Grand Rapids, where she underwent surgery to remove the tumor.

The wait for the pathology report stretched across agonizing weeks. We couldn’t get an answer from the oncologist in Grand Rapids regarding Abby’s diagnosis. Finally, I called Eleanor and Mike Evangelides, college friends, for advice. Their son Gus had been treated for a brain tumor at Lurie Children’s — a tumor that ultimately claimed his life just prior to his second birthday.

About 15 minutes after we spoke, I got a call from Lurie Children’s neuro-oncologist Dr. Stewart Goldman. Abby’s biopsy sample had been sent to the pathology department at Johns Hopkins Medical Center, and Dr. Goldman was able to get the results. We made an appointment to see him in Chicago two days later.

Dr. Goldman told us Abby had a Grade III anaplastic astrocytoma, a rare, aggressive brain tumor. He said there was no cure for her type of tumor — it was a tumor that took more lives than they were able to save. Abby began what was to be several years of radiation and chemotherapy, and we got used to driving six hours to Chicago every two weeks for her treatments. She also underwent two surgeries performed by another wonderful doctor, neurosurgeon Dr. Tadanori Tomita.

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Abby and Dr. Stewart Goldman

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Abby and Dr. Tadanori Tomita

 

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Abby with Nurse Allison Parise. 

One of the things we appreciated about Lurie Children’s brain tumor program was its access to a variety of Phase I clinical trials of experimental drugs, and Abby was enrolled in several different trials.

That first year of treatment was really difficult. Abby’s raw energy didn’t take well to the confines of a hospital room. She was happiest on horseback, flying through the air on a trapeze, or racing down ski slopes — anything to give her the feeling of wind in her hair. At times, it seemed like the process of saving her life was killing her spirit, but “Dr. Stew” and his team were extraordinary. They helped us to remember that Abby was a young girl who happened to have cancer, not a cancer patient who happened to be a young girl. They encouraged us to help Abby live all the days of her life, rather than to focus on counting them. With their help, we chose joy at every turn.

And, for a while, Abby’s tumor was gone. She was healthy, and it was an amazing, beautiful respite from being sick. We knew there was a likelihood that the tumor would return, but we were very hopeful. With the help of Make-a-Wish Foundation, Abby was able to enjoy her own horse, a beautiful Dutch Warmblood named Tiger Lily. Abby spent countless hours at the barn and competed in the hunter ring for two wonderful summers. Unfortunately, Abby’s tumor returned when she was 13.

I simply can’t say enough about the care that we received at Lurie Children’s — Dr. Stew, Dr. Tomita, Abby’s wonderful nurses, Wendy Stellpflug, Allison Parise, Megan Urban and Lauren Evans, and Child Life Specialist Julie Pierami. They became like family to us. I sometimes find myself missing those days at the hospital because the love and support from Abby’s team was so meaningful.

Unfortunately for Abby, it just wasn’t enough, and she died on May 7, 2015. She was just 15 years old.

The loss we experienced was catastrophic, and I miss her every day.

As the parent of a child who perished from brain cancer, it’s frustrating how little government funding is spent on pediatric cancer research compared with how much money is available for research into adult cancers. That’s why it’s so important for people to give support to the kind of research taking place at Lurie Children’s.

I think that Abby would like that I’m sharing her story. There were two things that were important to her: she didn’t want to be forgotten; and she hoped for a day when kids like her would no longer hear these three words: “You have cancer.”

Mike Evangelides is a member of Lurie Children’s Medical Center’s Board of Directors, and also serves on the Campaign Cabinet for Lurie Children’s Campaign for every child. He and Eleanor are both members of Lurie Children’s Foundation’s Board. On July 25, the 17th annual Run for Gus 5K Run/1 Mile Walk, named for their son, will support the Young Associates Board’s efforts to raise funds for pediatric brain tumor research at the Stanley Manne Children’s Research Institute of Lurie Children’s. One of the teams, Choose Joy, is participating in Abby’s honor.