Childhood Cancer Warrior: Charlotte
In February 2019 at seven years old, Charlotte was diagnosed with a Brain Stem Pilocytic Astrocytoma. This is a benign brain tumor but due to the location was originally labeled inoperable. Prior to diagnosis Charlotte was a normal, smart and sassy competitive gymnast. It was actually her coaches that noticed her run was off and she was having balance issues that weren’t there before. After a few doctor visits and an MRI, the results came back with the shocking news. Charlotte did not have the normal symptoms of a brain tumor and no one knows how long it had been there. In March she had a biopsy to confirm the tumor type. The plan was to watch and wait before starting any treatments but shortly after the biopsy things began to go downhill and symptoms ramped up.
Early April, chemo started and Charlotte was barely able to stay awake, having to take naps during the school day and would sleep through her treatments. She developed some involuntary movements and was having MRIs every other week and the tumor was progressing fast. We were in and out of the hospital and had many ER visits. From February to the end of April it doubled in size. Charlotte lost the ability to walk and had zero energy, sleeping most of the day and not eating. Since the tumor was not responding to chemo and time was running out surgery became an option. This was the hardest decision to make as it was experimental, no guarantees it would help and was very “high risk”. Charlotte endured a successful, 12 hour surgery and 95% of the tumor was removed. While we were very thankful she made it through, it left her having to relearn to do every day life…eating, dressing, writing and walking, etc. Charlotte went through an extensive inpatient rehabilitation. She earned her nickname Warrior Princess (given to her by her surgeon), her competitive spirit and determination impressed everyone.
During this time she developed more involuntary movements. She never gave up and fought hard every day to get herself out of the hospital. After seven weeks in the hospital she was released to go home and continued therapy in an outpatient capacity. She still required assistance with everyday things and was in a wheelchair for two years before moving to a walker that she still uses today. Charlotte had another inpatient rehabilitation stay summer of 2020, thanks to Covid closing down outpatient services. 2021 was a year of continued therapy, including working with her gymnastics coaches one on one in the gym and we had many doctor consults to find a solution for her involuntary movements. In Feb 2022 Charlotte had a deep brain stimulator (DBS) placed to assist with her movement disorders and this was a game changer. The DBS was very helpful in reducing involuntary movements. By the end of the year Charlotte was doing more things on her own and was even walking unassisted. We finally felt that Charlotte had turned a corner.
Unfortunately, in the summer of 2023 a scan showed new growth. By October, the tumor was the same size as prior to surgery and she was beginning to have recurring symptoms. Charlotte’s spirit was crushed with the news and she was understandably sad to start over and once again had to stop working with her gymnastics coach. Since Charlotte was now 12 she was referred to MD Anderson for radiation and completed 25 treatments at the end of 2023. Radiation was hard on her, developing new symptoms including facial paralysis, eye drooping, left side weakness, and fatigue. She has done her best to stay positive and keep fighting. It has taken six months since completing radiation but we finally received good news that the tumor is dying. It’s just dying very slow and from the inside out. Charlotte continues weekly therapies and we are seeing improvements everyday.
Through everything she is on grade level at school starting 7th grade in August and hopes to get back into the gym this year. Her next MRI is in September 2024 and can only hope for more good news.
