Extraordinary Offering v. 2

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.

My Sister Ellyn - Why I Volunteer For the Foundation For Molecular Medicine
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 2^nd 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.

I celebrate Ellyn by volunteering and praying for a cure.       

My sister Ellyn

Extraordinary Offering v.1

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.

My Story – Why I created the Foundation For Molecular Medicine

By: Frank Szczepanski

During 2011, my wife Carol was well into her third occurrence of metastatic breast cancer.  She was undergoing treatment at UChicago with a relatively mild form of chemotherapy that was administered 2-3 times a month.  I took her there for every IV Therapy and observed other patients in the waiting area – often 20-30 patients each visit. Usually they were not the same people, but their faces read the same: that look of suffering, or resignation for what they were about to experience.

You see, each time a patient’s name is called, then they need to have their vitals and blood pressure taken along with a blood sample which means a needle stick.  They then go back to wait for the laboratory to process their blood and produce a CBC (comprehensive blood count) report.   If satisfactory, their chemo will be prepared by the in-house pharmacy and then, the slow-drip of toxic chemicals takes place in one of the beds in the IV Therapy room. 

Each patient experiences the pain, the anxiousness, and subsequent side effects of today’s modern medical method for “curing” cancer.  The paradigm for diagnosis and treatment has not radically changed in over 25-50 years.

Knowing that my biotech company, IVDiagnostics, had developed a way to monitor Circulating Tumor Cells (CTCs) I wanted so badly to let each of patients (especially my wife) to have their oncologists monitor the root cause of metastatic disease, i.e. CTCs and

not just look at CBC counts and images from CT, PET or Bone Scans that can only detect solid tumors.  Patients need to know what is happening at the cell and molecular level inside their bodies; otherwise the oncologists have no true way of knowing if the patient is in remission, or if the treatment being prescribed is really working.

So we began the journey of Educating people on the need for Early Detection and Remediation of cancer as well as how to use healthy diet, exercise, lifestyles to prevent the onset of cancer.  Molecular analysis of captured CTCs is also available with today’s technology as we have proven in our laboratory – but patient’s need to know how and why this can be done much earlier than waiting for a solid tumor to appear.

My wife was a victim of 20 years of living with metastatic disease.  The treatment during 2011 seemed to work and her doctors declared that she was in remission.  Unfortunately in 2012, she suffered her fourth occurrence and her cancer had spread once again – this time to her abdomen and then to her lungs.  She passed, but her spirit lives on through the work of the Foundation For Molecular Medicine.

Carol Szczepanski

    

Carol Szczepanski was chosen as November’s Calendar Girl by the Pink Ribbon Society in 2011.  She was the strongest woman I ever knew. A true fighter who survived 20+ years of living with metastatic breast cancer.