Charlie is a kind, sweet, beautiful girl. She loves reading and can easily get lost in a book, especially if it’s Harry Potter. She’s on the newspaper club, is President of the K-Kids club (a club which collects snacks to donate to the local oncology unit for kids in need – how ironic!) and was voted, via interview with faculty members, onto the Student Council. Charlie is wonderfully empathetic, but also has a sharp sense of humor that lets her keep up with just about anyone. She adores watching “Try Not to Laugh” videos on Youtube and has no problem laughing loudly and hysterically in the middle of a crowd.
Leading up to our cancer diagnosis, we were living normal, healthy lives. Charlie had no symptoms that we were aware of. We live in Connecticut, near Yale University and had received a mailing looking for 9-10 year old volunteers for a nationwide study, which Yale was participating in, called the Adolescent Brain Cognitive Development (ABCD) study. The study involved questionnaires, brain games, functional MRI’s, etc. and offered compensation. Charlie was super excited – science AND money? Perfect. Charlie enjoyed the first appointment well enough and geared herself up for the super long research MRI. That was on a Sunday afternoon. The phone call came first thing Monday morning. The director of the study let us know there had been “an incidental finding” and Charlie had a tumor on her pituitary gland. The hope was that it was an macroadenoma, which oftentimes requires no intervention. Unfortunately, that wasn’t the case. We quickly found out that it was likely a craniopharyngioma that was compressing Charlie’s optic nerve. It was described to us as a “sticky, locally aggressive” tumor, and since she had already, unbeknownst to her or us, lost all of her peripheral vision in both eyes, it required surgery.
On August 17th, the neurosurgeon successfully removed the vast amount of the tumor. Recuperation was very complicated. Charlie was in the ICU for 7 days and then on a regular unit for another 7 days. She lost all endocrine function, as that is controlled by your pituitary gland and our “normal” was gone. Nonetheless, she did recover and recovered well. We achieved a “new normal” and thought we had done what we needed to do. But craniopharyngiomas are highly likely to grow back and after a routine follow-up MRI three months later, there appeared to be some growth of the remaining tumor and radiation was recommended. Proton therapy, a form of radiation, was recommended, but not available at our local hospital and thus, we ended up here at St. Jude Children’s Research Hospital, hundreds of miles away from home.
I want to say that Charlie isn’t letting this limit her. But, the reality is, life has changed. Her neurosurgeon has her on restricted physical activities and her loss of endocrine function makes life a bit more complicated. She has several conditions that are limiting, all of which fall under the umbrella of panhypopituitarism. She’s takes medication three times a day and has to pay careful attention to her fluid intake and output. Now that she’s receiving radiation, her energy levels are much lower and she really benefits from using a wheelchair for longer outings (zoos, museums, etc.). I’m was never a helicopter parent before, but I surely am now and that really goes against what a typical 10 year old wants and needs.
In more ways than I can express. Our “normal” is so different now than it ever was. Every day meds, three times a day. 504 Plans and Emergency Action Plans. Emergency meds that have to be with her or near her at all times. A notebook to track her fluid’s and symptoms. Her endocrinologist in my favorites on my phone so I can contact him quickly. A constant struggle to keep her safe and let her be. A constant struggle to give enough attention to her brother. A constant struggle to maintain work/home/Charlie’s medical issues balanced. Charlie is in Memphis receiving treatment and her father and I are taking turns being with her and being with her brother back at home.
Hope session by Mary Slone | Facebook | Instagram