Sharing Ali’s story

Published 3:52 pm Monday, April 26, 2021

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Special to The Sun

Allison Spicer, Ali as she was affectionately known, was a typical 5-year-old before being diagnosed with diffuse intrinsic pontine glioma, or DIPG, in December of 2020.

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Her parents, Billy and Amy, had never heard of this condition before Ali’s diagnosis. This rare form of tumor starts in the brain stem and progresses rapidly. There is currently no cure for this type of cancer, and the survival rate is extremely low. After a hospital stay in February, the hospital told the family that they would send Ali home with hospice care. Amy says she had no prior experience with hospice care for other family members, and to her, hospice was “a bad word.” It signaled the end of hope and felt like giving up.

Many people do not realize that, unlike adult patients, pediatric patients can continue to receive aggressive and life-sustaining treatments while also being under hospice care. This concurrent care model allows for families to pursue all available options for treatment while also obtaining expert comfort care, along with the multi-disciplinary support that hospice care brings. Ali’s care team at UK Children’s Hospital collaborated with Hospice East to provide the care that Ali needed, along with the resources to support her family in the journey. Our team focused on quality of life for both Ali and her family.

Rather than giving up, with the help of the Hospice East team, the family was able to be home with Ali, surrounded by family and a community that supported them. Due to COVID regulations, if Ali had remained in the hospital, Amy or Billy would have been isolated with Ali, with no help to process all that was happening. By coming home and allowing hospice to care for Ali, she could be with her parents, siblings, and other family members in her own comfortable and familiar environment. Mr. and Mrs. Spicer knew that a hospice nurse was always a phone call away if they needed anything, and a hospice social worker was available to help with processing the overwhelming emotions.

Ali was a very courageous little girl who wanted a big birthday party. She loved princesses, unicorns, and the color purple. The hospice team helped gather community resources and put together a 6th birthday party and parade fit for a princess.

The Spicers say the support of the community has been overwhelming as well. Some local stores put out donation buckets to help raise money for the family, the childrens’ school sent flowers and cards to Ali’s siblings, and Mr. Spicer’s employer, Leggett & Platt, donated money to the family and gave Mr. Spicer paid leave to have the precious remaining time with his daughter. Scobee Funeral Home and Winchester Cemetery donated their services to ease the financial burden for the family, and as a non-profit organization, Hospice East never bills a family for services.

Allison Spicer passed away on March 23, 2021, in her home, surrounded by her family. Her mother wants to share Ali’s story to celebrate the hero that Ali was and to bring awareness to DIPG in the hopes of finding a cure so other families do not have to experience the same loss.