There are currently only a handful of approved treatments for brain tumors, and not all tumors respond to those in the same way. Since diagnosis in 2006, I have been through 4 different treatments including radiation therapy, but unfortunately my tumor has recurred 6 times, leading to 7 surgeries. Not only have I experienced side effects from both radiation and chemotherapy that impact my quality of life to this day, my surgeries have left me with a weakened left arm and fine motor and dexterity issues on my left hand.
Before Head to the Hill, I did not know the difference between palliative care and hospice. I now understand that palliative care is focused on reducing suffering and improving quality of life for patients and families impacted by serious illnesses, like brain tumors. While palliative care can be part of hospice, palliative care can and should be…introduced early either at or shortly after diagnosis. …I have not opted in to palliative care simply because I did not know what it was, and associating it with hospice made it scary to me.
The butterfly is chosen to represent the spirit of the ependymoma community as a symbol of hope through change. …Even though it seemed like the butterflies needed pep talks to get flying, the event was a success.
Members of Congress
Advocating to members of Congress was an eye-opening experience. (D) Senator Debbie Stabenow…was very interested. She offered great feedback and engaged each and every one of us. …Next, we went to (D) Senator Gary Peters, and he was a little hard to read. …Nice and listening, but one eye on the door. …
We met with two different staffers, one for representative [Andy] Levin and one for representative Elissa Slotkin. Both were extremely nice. Unfortunately, each had a family member that was, or is going through cancer. That did seem to help them really listen to our stories, and we heard theirs.
We finished our day with representative Jack Bergman, the one I was most looking forward to seeing. …He did not disappoint – EXTREMELY, EXTREMELY interested, and engaging. He said, like Senator Stabenow, he had already signed one of the Bills we were advocating for. And he said he was working on something similar to what we were asking for and that he would be proposing in the near future.
My favorite part was the National Institute of Health’s (NIH) presentation as I am very interested in the research side of medicine. …It was amazing — all the innovations and specially designed scientific instruments and machines that are on the NIH campus’ brain tumor division as well as all the skilled surgeons on staff.
I was very inspired to carry on and persevere in life when I heard many other people’s situations, many of which were told with a positive attitude filled with a strong sense of purpose not to let brain tumors defeat them. The event felt like more of a community because each and every person in attendance had a complete understanding of my and everyone else’s situation.
I felt we had a strong impact because the members of Congress were able to see exactly where the research dollars needed to go. Those that were already in favor of what we were asking and those that were indifferent or uninformed needed to see us there and hear our stories to confirm what they should be doing for us. All in all, the experience was amazing and unforgettable!