I am riding my 13th PMC in Honor of my daughter Lexie, a 26 year old, 26 year survior of a brain tumor. Lexie was diagnosed as a 3 and 1/2 month old infant with a Lowgrade Hypothalamic/Optic Pathway Astrocytoma. She has endured many long and dangerous brain surgeries, in addition to many shunt surgeries recently, and two separate chemotherapy protocols...and she still lives with an almost 5 cm tumor in the center of her brain, currently deemed inoperable by her neuro-surgeon, which has destroyed most of her periferal vision and caused her to have learning issues, and now endocrine issues. When we started this journey 26 years ago, there was no good therapy for her except for incredibly toxic and not so very effective chemotherapy, so I joined with other parents of kids with Lowgrade Brain Tumors who had started a movement to raise money to have our kids' tumors researched to find new and less toxic treatments. After you have watched your child turn grey and become a shell of their former selves from weekly chemo, all in an effort to stop the tumor from progressing and ultimately becoming life threatening, you get desperate to find a better way....
17 years ago, Lexie spoke to Charles(Chuck) Stiles, co-chair of Cancer Biology at Dana Farber and she told him this “I need you to develop a little white pill that won't make your hair fall out and won't make you throw up, but will stop your tumor from growing.” And he replied, “That is Exactly what I am doing !!”
To date, in Chuck's lab at Dana Farber, several drugs have been used in trial form to cut off the pathways that these tumors use to grow, and many of Lexie's brain tumor friends are currently using one of these drugs as targeted therapy. Fortunately, Lexie's tumor has been tested recently and does have the pathway V600E for which there is a drug that can cut it off, and she is taking two different pathway inhibitors, yet Chuck's work is far from done...There is still no good drug for Lexie use should she need more therapy after these drugs are tried.
In May of 2018 she presented in the ER with hydrocephalus and had four brain surgeries and spent the month of May in the hospital, followed by 33 radiation treatments. So she has been through the wringer recently. Since May 2018 she has been hospitalized many times for additional hydrocephalus, a feeding tube due to loss of more than 20% of her body weight, and in 2018, spent Both Christmas and New Years in the hospital for a shunt infection and replacement of her two shunts with new shunts and a different system. We had had several more shunts surgeries since then. We are hoping for some hospital free time, but life is very unsure for now.
And so WE RIDE.....84 miles from Wellesley to Bourne, on Saturday August 2nd, 2025 as a part of TEAM LEXIE, captained by yours truly and including friends!!! I am SO grateful to these folks for finding a way for ALL our funds to go directly to Chuck's research !!!
Check out the Team Lexie page!!!!
When we find a Cure for this tumor type, I will stop riding and stop asking for money...I am hoping that day will come soner rather than later...
Please donate to our efforts to find a CURE for Lexie and her friends !!!
