Good Sunday Afternoon! So, last Monday morning, I was asked to think about what SUCCESS is to me now that I've had a life
alterating personal experience and talk about this on 1150AM Alternative Talk Radio with radio talk host Pam
Hoelzle, #
Pamchat on Twitter and which was streamlined on
http://www.chatwithwomen.com/. Catch the entire interview as THIS challenge got me to thinking....
Success is not what I once thought it was.....or, even expected. I used to think of success as being a good mother, raising responsible children to become responsible citizens, having a happy, good and healthy marriage, secure in the fact that I had actually picked the right man to be my husband and father of my children, our home, property, wealth, lots of friends. I used to define success as happiness and as the Life that I had ordered!
My story or thoughts on success actually begin in late June 2000 mid-afternoon when I opened up my French doors onto my large patio, felt the sun on my face and smiled while watching and listening to my kids play in our backyard, otherwise known as the "Elliott Park" while my husband was at work enjoying his successful career in the
Telecom industry. I remember thinking to myself, "WOW, how lucky am I...."
Imagine this....it is a beautiful sunny Sunday, my family and I had arrived back home earlier in the day from our Crystal Mt. cabin and we were all enjoying a somewhat lazy Sunday afternoon working in our yard, my husband, Chris, was crafting a new arbor and I was getting ready to BBQ. A perfect Sunday afternoon!
On that Sunday, the last day of August 2000, my life and my kids lives were forever and
immediately changed and although I didn't know it at the time, I now know that if ever given the chance, I would without a second thought trade in what I used to define as SUCCESS to have my husband back, healthy and alive.
Two hours later, the words "your husband has a primary brain tumor" were what I heard. These words put you in shock, are scary, is bad news but the words that I heard three days later "this is the type of brain tumor that will kill him sooner than later" were simply
incomprehensible. I remember that when the neurosurgeon told me these words, I closed my eyes, hit the wall with my fist and couldn't breath. In an instant, I knew that my husband, who was only 39, was going to die from terminal brain cancer. I knew that i would most likely be a widow at 40 and that our then 6 year old daughter and our 3 year old son would most likely grow up without their dad in their lives to love and guide them. When I tell this story, often times this is what brings tears to my eyes, even today.
THIS was the beginning....
In an instant, I transformed from someone who defined success as all those things I mentioned before to this: #1 IF I could save my husband's life, this would be my and my family's success. If I could find the right
neuro-surgeon, the right
neuro-oncologist, the right clinical trial, the right drug, if, if, if and #2 IF I could keep my children's lives as normal as possible throughout all of this so that their life did not become all about their dad's brain cancer......THIS was my new definition of success.
I KNEW that throughout whatever all of this would entail, I would not only be a role model for our children but I would be a role model for all of our family and friends because in most cases, this was the first experience for most of them with a terminal illness. I knew that I would be the one that others looked up to when a
tragedy struck their family in the future. Most important to me though was that I was going to be a role model for my husband in order to help him through this very difficult diagnosis and no matter what the future held for him, I was going to show him how much I loved him by showing him through my actions how together we were going to get through this.
IF nothing else, I was going to give my family the gift of strength, love and courage during my husband's illness. Our entire story,
Chris' Story, can be found on the Chris Elliott Fund for
Glioblastoma Brain Cancer Research website at
www.ChrisElliottFund.org.
While trying
desperately to save my husband's life, Chris and I were sadly surprised to realize that for the most part, the
neuro-oncologists and
neuro-surgeons who treat this
disease don't' tend to refer their patients out to centers of excellence for this disease, don't seek advice from each other, it is very challenging to find HOPE regarding this disease on the
Internet.
Glioblastoma (
GBM) is the most
deadliest of human cancer. Perhaps the one thing that surprised us the most and what DRIVES me today is the fact that there simply were not people or services around to guide us through the "terror of a brain cancer diagnosis and the terror of brain cancer treatment options as well as through the terror of suddenly being thrown into the role of "caregiver" for a loved one with brain cancer". So, in a nutshell, this is why the Chris Elliott Fund exists and these are the services we provide. We KNOW how important help is to have while going through this.
Three weeks before Chris died and knowing that we was going to die soon, he said "we have to do something about this disease". I promised to "do something about this disease" to honor him and to make his last wish come true. Chris wrote his "bucket list" thinking that he had a couple of months to live. We began discussions on development of the
CEF. We didn't know exactly what it would look like, how we would fund it or anything except that it would do two things. #1 Fund ground breaking brain cancer research and #2 it would somehow assist brain tumor patients and their families through the brain tumor diagnosis, treatment and caregiver phases of this disease. WE KNEW WE HAD TO PROVIDE HOPE.
So, when my daughter now says to me, "Mom, I want to do what you do when I grow up. I want to run dad's foundation and change people's live", I KNOW we have done something right.
TODAY, I DESCRIBE SUCCESS AS: How many brain tumor patients and their families did I help this week, how many brain tumor patients who have been told their brain tumor is inoperable did I assist into a brain tumor center of excellence who indeed had a successful surgery and tumor removed, how many doctors did I share "Chris' Story" with and educate about brain tumor centers of excellence and genomic testing of brain tumor samples and why this is NECESSARY for advanced brain tumor treatment, how many people did I educate about brain tumors and brain cancer this week and what did the research funds that we work so hard to raise go to this week for new/breakthrough research treatments. I describe success today not by what I have but in the personal
sacrafices that my family and I have endured in order to
describe success today as how many lives have I impacted and extended since my husbands death through my work with the
CEF.
So, TODAY, success means something different to me. Here is a list of some of the things the
CEF has accomplished to date that to me, are TRUE SUCCESS indicators.
- The CEF and I have successfully developed, implementing and are funding the first regions Integrative Patient Support Program (IPSS), consisting of the Chris Elliott Fund Integrative Patient Support Specialist and the Chris Elliott Fund Brain Tumor Patient Support Groups at the Center for Advanced Brain Tumor Treatment (CABTT) at the Swedish Neuroscience Center.
- The CEF and I have funded the research that led to the discovery that there are molecular subtypes of Glioblastoma brain cancer, which means that no two people/no two brain tumors have the same genetic and molecular structure which clearly indicates the need for individual brain tumor treatment. This discovery established the need or protocol for genetic testing of patients' individualized brain tumors to better define the treatment that should have a more positive response than a "standard protocol and treatment" for all brain tumor patients. The CEF has been published and acknowledged for this breakthrough research in the American Association Cancer Research Journal. This breakthrough discovery has changed the way that brain cancer is treated in certain areas of the country and will one day lead to how brain cancer is treated worldwide. Brain tunor centers in the U.S. noted for their excellence and now the CABTT here in Seattle routinely now test their patients' brain tumors to determine which brain tumor chemo/treatment is the best treatment option for the specific person and their specific brain tumor. We are delighted and proud to have made this world wide positive effect for brain tumor patients.
- The CEF funded a portion of the clinical trial for Avastin to be approved as a chemo for brain cancer at initial diagnosis. The is only the 2nd drug approved for brain cancer w/in 28 years.
Now that I describe success differently than I did before my husband was diagnosed with brain cancer, you may wonder how the CEF and I fund our efforts to fund research as well as to educate, provide awareness and advocate for the patient. We are driven 100% by volunteers and rely on donations and fundraising. Here's how you can help!
- JOIN US for CEF/Seattle Storm Night on 8/1 at the Key Arena. $34 tickets on sale through us for $24. This is a fundraiser, so we keep $12 of each ticket.
- JOIN US 8/23 for the Chris Elliott Fund Summer Bike Ride
- JOIN US 10/2 for our 8th Annual Chris Elliott Fund Golf Classic at the Golf Club at Newcastle
- JOIN US 10/2 for CEF's Gala, Dinner/Auction and Awareness Program in the St. Andrews Ballroom at the Golf Club at Newcastle!
Donations and Registration for all of our events are accepted online at www.ChrisElliottFund.org or if you have any questions, please contact us at info@ChrisElliottFund.org.
