Morgan was diagnosed with DIPG in February 2013 at the age of 13. She was in the 8th grade and couldn’t WAIT to get into high school. Upon her diagnosis Morgan’s main priorities were to have treatments close to home, go to school and be as “normal” as possible. She did not like any special attention and tried to stay out of the limelight. Despite this she had people from her school, church and community rally around her to raise money and support her fight. We did not tell Morgan the name of her tumor or her prognosis right away. We waited until she was ready and asked and then told her. I don’t know if this was the “right” thing to do or not, but I think it worked for us. Once she knew her prognosis she handled it with dignity and grace. She always told us she would be ok and that she would be in Heaven waiting for us when we got there. Sometimes we would be talking about her dying and I would tear up and she would get mad at me and ask me what I was crying about because she was going to Heaven. She was so strong!
Morgan lived 21 months with DIPG. During this time she did her 6 weeks of radiation with about 60% tumor shrinkage and complete resolution of symptoms. She participated in a chemo (Vorinostat) study for 4 months before her kidneys started failing so we took her off. This was the best thing we did by far. She was able to live the next 16 months basically symptom free. Because Morgan didn’t want to travel for treatment and because being in one study pretty much excludes you from a second study, we stayed home and researched treatments for when progression occurred. During this time we had 6 stable MRI’s. Our 7th one we weren’t so lucky. Morgan got enrolled in a second study but was only able to complete 12 days before major progression occurred. She underwent surgery to relieve the pressure in her brain on November 12, came home on November 14 and passed away on November 21. Up until those last 10 days Morgan was driving, going to school, going to the mall and movies with her friends, had stayed completely off steroids and was basically a “normal” 15 year old teenage girl. 48 hours before she died she was awake, talking and playing Old Maid with her friends. Her story is very unlike many DIPG kids and for this I am eternally grateful. I was prepared for the worst and was blessed by having my beautiful girl spared. Morgan always said she couldn’t “just do nothing” when talking about trial studies. We have tried to do “something” every year to help raise money for DIPG research and to raise awareness and funds for this horrible disease.
To learn more about Morgan, please visit the Miracles for Morgan Facebook page