Kayli's battle with rare tumor

Kayli Hostetler

Kayli Hostetler

by Judy Hostetler, Kayli's mom

When Kayli was 8 years old, she went to the doctor for her well child check-up. Upon examination, our doctor felt a large mass in her abdomen and sent us to Akron Children’s.

After a whirlwind of tests and then surgery, Kayli was given the diagnosis of ganglioneuroblastoma. Her tumor was the size of a grapefruit and they were not able to resect all of it, due to it lying along the vena cava.

For the next four and a half years, she was followed closely with scans and tests to monitor the residual cells.

Almost five years after diagnosis, she had another tumor grow, which also required removal. The same amount was removed, but this time she contracted a staph infection in her 10-inch incision.

She had surgery again and had to have a wound vac (a type of wound treatment) and stay in the hospital for a while. After three months of healing, she was able to resume normal activities and continued to be monitored by the hospital.

A year later, she had three more tumors come back at once. This meant more surgery, but a complete tumor resection was possible this time. Kayli then began chemo, which her bod did not tolerate well at all. Her counts dropped and just did not recover.

She had to end her chemo early due to her body’s inability to handle more. She then completed 16 radiation treatments, which left her body more weakened.

She is currently in the process of trying to heal and recover from all of this. We were informed that tumor #5 grew again during chemo and then was hit with radiation.

This tumor is currently being watched for additional growth, so the road winds on for Kayli as we walk into year nine of her journey.

During her time at Akron Children’s Hospital, we have been blessed by meeting so many wonderful people. From her surgeon, Dr. Pittinger, to Dr. Kuerbitz and the oncology team, these individuals have come alongside us at each bump in the road.

The palliative care team has been wonderful. Dr. Cathy (Kelly-Langen) has been there for us at any hour and the book-writing project was a great keepsake as well.

Thanks for always remembering Kayli’s birthday and Christmas. You truly go the extra mile to let the kids know that you are there for them. Akron Children’s has become like family to us and we are so thankful that this facility is close to home.

Kayli's story
Publication: Other

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