Our daughter Grace was diagnosed with Glioblastoma Multiformulae (GBM) one month after her grandfather passed away due to another type of cancer. She had a tumor removed 4/11/08. The severity of the diagnosis never really sunk in and we never envisioned defeat from the first day on. The GBM returned again in late September 2009 and more GBM along my spine in November 2009. Grace endured the standard care including radiation and various chemo concoctions. Unfortunately none of this was successful.
As a parent and not medically trained all of the science and care was numbing. Grace on the other hand exhibited the desire to maintain a level of teenage normalcy. Most of the time successfully. Grace chose the routine instead of the outrageous, and she did because she craved experiencing that which was normal. As we witnessed her perseverance in not just surviving, but thriving, I gained a deeper understanding of the difference between need and want, and the paramount importance of focusing on the details as a way to rejoice in life.
The fact is Grace (and her family) learned that life was not fair; she knew that life was not necessarily just; and that life, more normally, could be hard. But, importantly, she never used any of those learnings as an excuse to be less loving, or less forgiving, or less understanding, or fun loving.
Living with a child who has a terminal disease is probably the worst experience a parent can comprehend. You do a lot of soul searching and dig deep within yourself to find the energy and courage to maintain the proper enviornment. Many times this felt near impossible, but the strength she exhibited helped all of us to keep focused on the task at hand. You need to keep the hope alive; never failing optimism is the best medicine. Challenge science and never stop trying.
“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.”
― A.A. Milne
We need our government to understand that children get cancer too and we need access to trials and better options like the ones that adults have access to. It is very unfair to be precluded from a potentially life changing opportunity based on age.
Grace Badger Murphy 7/18/94 – 10/28/11