Callie was diagnosed with stage 3 embryonal rhabdomyosarcoma in her abdomen just 3 days after her 7th birthday in 2015. Her treatment began immediately at Janet Weis Children’s Hospital with long days of multi drug IV chemotherapy infusions that would continue through the next 10 months causing nausea and hair loss. The treatment plan also included specialized radiation therapy daily for 6 weeks at The Children’s Hospital of Philadelphia while living at the Chestnut Street Ronald McDonald House.
In June of 2016 it was felt that the remainder of the tumor could be removed surgically, and Callie came through her big surgery with flying colors. She regained strength quickly and finished her chemo that fall and returned to school with her friends. Scans were initially clear but in less than 10 weeks, just before Christmas, Callie’s belly began to swell, and scans revealed that the cancer had returned with a vengeance and metastasized to multiple areas. The prognosis was not good. A new chemo was started which relieved her discomfort by shrinking the tumors and the response was strong enough to consider surgery again.
In April of 2017 at Sloan Kettering Memorial in New York City. It was an enormous surgery to remove as much of the tumor bulk as possible but left Callie with a colostomy, drains and chest tubes and a prolonged, complicated recovery and nearly death. Finally, after 3 weeks in the intensive care unit we were able to take her home to her 3 big brothers and 2 dogs who missed her immensely. Our hope was to regain strength, restart another chemo regimen and get to a point that more radiation and a trial chemo infusion into her abdomen were possible. Callie worked hard in physical therapy, resumed home school and even planned our beach trip for late summer. She enjoyed the trip so very much and although still weak made the most of every minute. In the fall of 2017 she rebounded nicely, tolerated her chemo amazingly and even went back to school. There was a glimpse of hope once again but by the holidays the tumors were clearly growing and had become resistant to the chemo.
The next four months leading to her death are a blur with trials of palliative but very nauseating chemo, pain control and hospice care. She died in my arms on a Saturday morning quite peacefully at home. We were devastated but relieved that her pain and fight had ended.
Never have I met a braver soul or one that lifted up everyone around her. During her 2- ½ year battle she was doing acts of kindness by raising money to help other kids with cancer, planning parties/projects for our family, making beautiful cards for her brothers and taking care of her friends at school. She had so many dreams and even bought a pair of gold sparkly shoes online just weeks before she passed. She was a princess and a fighter and is surely an angel now.
It is our honor and our passion and lifelong mission to keep her spirit alive by finding creative ways to support those unfortunate children and families battling cancer.
Your ACS support through sponsorship will help in so many ways with lodging, transportation and supplies...and believe me, it adds up.
We are honored to be a part of this event. There will be a beautiful girl with long hair and sparkly shoes watching over it...no doubt.
For more than 100 years, The American Cancer Society has been leading the fight to end cancer. With your support, we have helped usher in an era where more people survive cancer than ever before. By translating our research findings into action, we've seen a 20% decline in US cancer death rates since the early 1990s.
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