Charlie was diagnosed with DIPG (diffuse intrinsic pontine glioma) in February 2016 at the age of 14. Charlie was an avid runner; whether it was on the trails in the woods, with the cross country team, on the lacrosse field, or down the hall to get his socks, he ran. Charlie’s mom, Lynda, says that It was in running that he first noticed something was wrong. His balance was off, his gait changed, he was dizzy and nauseous, so he went to the doctors to get it checked out. Charlie was diagnosed with a type of terminal brain tumor called DIPG, which is an inoperable, aggressive tumor in the brainstem for which there is no cure and only experimental treatments to buy time. He was given 6-18 months to live–all his hopes and dreams for the future, gone. From the beginning, he knew he would not survive this tumor, but always had hope for more time than was given at diagnosis. 

Charlie refused to let cancer steal his spirit.  He decided to take charge, and explore treatments to give him some time, and hope. Charlie was active in his medical care, attending several DIPG research conferences and participating in many clinical trials. He was also a committed advocate in the DIPG community, reaching out to those newly diagnosed and offering peer support.

He had radiation and then participated in several clinical trials, fully aware it was not likely to benefit him, but may help others. He said, “I’ve lived my life, but what about that 4 year old?  They deserve a chance to live.” He attended DIPG symposiums, met with researchers and toured labs, listened to neuro-oncologists and researchers from around the world describe the research being done, and heard time and again about the need for tissue samples.  Charlie felt strongly that he wanted to contribute to research by donating his tumor and having his cells be part of research. 

Charlie was a teenager, therefore he was fully aware that he had a terminal disease, and was very much involved in all of the medical decisions, as well as his end-of-life planning. One day on the way home from their weekly hospital visits, Charlie said he wanted to be buried under a tree. Nature and the environment were always so important to Charlie, and he wanted to leave as little impact as possible when he died. 

Charlie loved his family, especially his big brother and sister. He was always his mom’s “little buddy.”  He never stopped moving, whether it was tricks on scooters, mountain biking, running, basketball and his favorite sport, lacrosse. Charlie loved getting a root beer after games with Dad and playing catch in the backyard. He may have slowed down after diagnosis, but he found new ways to love life in bird watching, protecting the earth, being near the woods, flower photography, and music.

Charlie beat the odds and lived 30 months after his diagnosis. He left his earthly body in August of 2018 at just 17 years old. To honor his wishes of donating his tumor to research, the family was able to work with the organization, Gift From a Child. They visited Dr. Monje and her lab, learned about the important research being done, and saw Charlie’s cells under a microscope. In this way, they were able to honor Charlie’s dying wish, that maybe DIPG would one day be something a child could live with, not die from.

After a couple of years exploring the many ways to carry her grief, she was grateful she found Rett’s Roost. She then attended an online bereavement support group and later became a volunteer for Rett’s Roost. Lynda says that, “We have found that compassionately supporting other bereaved families helps us carry our own grief, and our child forward. While we would not wish anyone to know this pain, we know far too many others do and are committed to help if we can. Connection with other families has been the biggest help in all of this.” 

Deana, Rett’s mom, had this to say about connecting with Lynda in 2020, “Although I never got to meet Charlie, I feel as though he sent his mom to us, knowing we would connect deeply. And that we did. Lynda’s presence in our online groups is so compassionate and comforting to newcomers, and having her help at a retreat in 2021 solidified our friendship. Although our sons had very different cancer and life experiences, we are certain that Charlie and Rett brought us together, and that somewhere, they are together too.”