For those who had the opportunity to meet Meghan, they knew she was an energetic and lighthearted young girl who always saw the good in everything. Growing up in New York, she was the biggest Yankees fan and dreamt of playing shortstop for the elite baseball team. Meghan also had quite the sweet tooth, enjoying her fair share of junk food, as any kid would. For the first twelve years of her life, Meghan was a pretty normal kid. She went to school, stayed involved in extracurricular activities, and was quite close to her family. However, her life was drastically changed when she was diagnosed with DIPG in 2007.
DIPG is a rare form of cancer where the tumor is located in the brainstem. Due to the complex functions of the brainstem, the tumor is inoperable and DIPG still does not have a cure. Meghan’s parents first noticed something wasn’t right when they saw their daughter was walking abnormally. Although they did not think much of it, her parents still took her to the hospital for safe measures. That was when they received her diagnosis.
Meghan’s fight against DIPG was tough. She spent hours in hospitals trying to receive what little treatment was possible. Since surgery was not an option given how invasive the procedure would be, treatment was limited to chemotherapy and radiation. Abnormal walking eventually progressed to a complete loss of muscular movement. This was especially difficult for Meghan to cope with because she had spent most of her life as an active athlete. However, she still managed to maintain a positive attitude and even cracked jokes to alleviate the sadness her parents were experiencing.
Meghan’s younger sister, Isabel, recalls feeling overwhelmed and confused by the diagnosis. Since Isabel was only eight or nine years old when she learned about her sister’s condition, she never really had a full understanding of what was going on. She knew there was something wrong with Meghan, but had no idea that DIPG would have such a large impact on her family. Although this was a very bewildering time in her life, Isabel felt an abundance of support from the DIPG community. She often got letters and gifts from a group called “Super Sibs.” This organization helps those who are dealing with the diagnosis of their sibling with DIPG. Her advice to families who have recently joined the DIPG community is to lean on others who are dealing with the same thing because that is what she did, and it made the experience a little less painful.
Unfortunately, little progress has been made for treating DIPG since Meghan passed away over a decade ago. There are several active clinical trials and research projects in progress as of now, but DIPG treatment and pediatric cancer, in general, are still severely underfunded. This is why it is important now more than ever to continue finding a cure for this serious condition, and why CRF is committed to this goal.
by Ranjani Anirudhan