Extraordinary Offering
The inspiring stories of volunteerism with the Foundation For Molecular Medicine
This is a series of stories from the volunteers at the Foundation For Molecular Medicine, who offer the extraordinary gift of themselves to the mission of the organization. The stories reflect the diversity of personal experiences each volunteer brings to the organization along with their motivation and desire to improve the lives of others.
Volunteerism truly is the Extraordinary Offering.
By: Susan Barriball
In January of 2009 I was driving to Kentucky for a new assignment as an EHS trainer. My phone rang and I pulled safely to the shoulder because my youngest sister, Janet’s phone number appeared on caller ID. I was the 2nd oldest sister in a family of 5 sisters, Janet (the sister that was calling) was the youngest and Ellyn was the next to the youngest sister. When I answered the phone, I heard Janet crying and I couldn’t understand what she was saying. I asked her if someone else was there with her and to please put that person on the phone. Frank, my sister Ellyn’s husband, took the phone and told me what Janet wasn’t able to say.
Frank said that Ellyn had a grand mal seizure and that the
doctor believed that Ellyn had a brain tumor spanning the entire top of her
head, from ear to ear, and that her prognosis was 3-6 months to live. After talking with Frank, I immediately proceeded
to call a neurosurgeon that I knew in Chicago. This call resulted with me
giving Frank the surgeon’s cell phone number so they could discuss Ellyn’s case.
After that, I got back on the road driving towards home: and so began the cancer
diagnosis that changed our family forever.
My sister Ellyn was diagnosed with glioblastoma multiforme,
a primary cancer with a very bad survival rate of 15 months to 5 years at the
most. At the time, a glimmer of hope for
me was that Senator Ted Kennedy was diagnosed with the exact same type of
cancer; I thought if Kennedy had it then someone must be working towards a cure
for this brain cancer.
After her diagnosis, Ellyn sought experimental treatment in
Chicago. Each day Ellyn was blessed to be here with us, our family thought
there might be enough time for research to develop a cure. We thought that if
she could stay well with these experimental treatments, it was one more day
that research teams might find the way to stop glioblastoma multiforme.
During this time, we made many trips to the Chicago hospital
to meet the helicopter that transported Ellyn. We watched her have small
seizures, brain bleeds, and a score of other physical complications that started
six months before she passed. The emotional effects on Ellyn were even worse to
watch than the physical. Her emotional struggle pulled on the hearts of our
whole family while we tried to cope and come to terms with what surely was the
hardest circumstance we would experience. Watching Ellyn slowly succumb to the
emotional and physical hardship of cancer, made us all much more aware of what
needs accomplished to stop cancer for all people, for all families.
Ellyn “Ellie” passed June 21, 2012 leaving behind a beloved
husband, daughters, grandchildren and of course her four sisters and mother who
miss her every day. The experimental treatments she received gave her 3.5 more years than expected at her diagnosis;
and looking back 3.5 years was much better than the original 3-6 month
prognosis, for her and for all of us. The experimental treatments that gave Ellyn
3.5 years more than expected were only possible through funding donated to cancer
research.
Each discovery made through research is a step closer to
understanding and treating glioblastoma multiforme and research is only
possible with funding. Lives are extended and saved through funding for research. Senator Kennedy who had the best possible
medical care available at the time, passed away just the same - without a cure.
Funding is desperately needed so that beautiful people like my sister Ellyn, who
passed at the very young age of 56, are given better treatment for better
prognosis to live a long, full life.
I miss Ellyn every single day, her smile and her easy style
- and her birthday. My family recently gathered and a discussion occurred about
our family birthdays. My birthday is the first in April and three of my sister’s
birthdays are in May. The discussion ended somberly with the statement “and
Ellyn’s birthday is in November”. This was a very difficult thought to express
since there are only four of us sisters here to celebrate our birthdays; one of
us is missing. While Ellyn is not with us anymore to celebrate birthdays, she
lives on in each one of our hearts.
I volunteer for organizations that raise and use funds for cancer
research and the process of cancer recovery and I will continue to volunteer
for organizations that support a cure. The memory of my sister Ellyn is why I
volunteer at the Foundation for Molecular Medicine.
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| My sister Ellyn |
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