Casey Sonke

Categories: Overcoming
Date: 16 May 2016 11:21

Casey Sonke Fighter Collage

SAYiWON’T FEATURE - CASEY SONKE - Desmoid Patient since 2012

1. What does SAYiWON'T mean to you?  When life throws you a curve ball no matter what it may be you accept the challenge and work to overcome it no matter what others say.

2. What was the biggest challenge you've had to overcome?  115 days in the hospital, with 5 separate surgical procedures, 8 surgical drains, and multiple feeding tubes and pic lines.

3. How did you or will you overcome it?  Mental preparation. Focus entirely on getting better so I could go home to be with my husband and daughter.

4. If you had to describe yourself in one word, what would it be?  SURVIVOR

My story begins on September 21st 2012, the day I found a large mass encompassing my mesentery artery.  Since then I have been to 5 hospitals, (from New York to Houston),seen 6 medical oncologists, lost a pregnancy, had 2 needle biopsies, 11 CT Scans, and 6 rounds of chemo.  Sadly, I'm left with a tumor roughly one inch smaller and a lot less hair on my head.

I originally thought my battle would be over once chemo was done, but I've now realized my battle is truly just beginning… 

Desmoid Tumors are very rare, but still have the potential of being as deadly to patients as cancer.  Unfortunately, many patients go months and sometimes years before they are properly diagnosed or die from complications caused by Desmoids.

After numerous oncologists appointments, I was finally diagnosed by MD Anderson as having an extremely aggressive Desmoid Tumor in my intra-abdominal area that is inoperable due to the major artery it encompasses.

In February of 2015, I met with a team of Dr’s at Memorial Sloan Kettering in New York because my rare tumor had once again decided to start growing. The doctors at Sloan felt very strongly about having me enter into a clinical trial that is funded by the Desmoid Tumor Research Foundation and the National Cancer Institute. 

This clinical trial was critical for me since I have already received my lifetime supply of doxil which is the chemo that had saved my life thus far. I began the chemo drug in April of 2015 and May 9,th of 2015 I woke my husband up in the middle of the night and asked him to take me to the emergency room.

Unfortunately, we were not in our home town of Atlanta, GA but had traveled to Minnesota to meet our new niece Parker Lynn. The hospital closest to my in laws did not know how to treat a desmoid patient and were unsure of the chemo drug I was taking and what side effects may be taking place in my body. After 5 days in this hospital I was finally air lifted to the Mayo Clinic with a 20% chance to live. Luckily, god was on my side that day and I came out of surgery with the hopes of a full recovery. I spent 115 days at the Mayo clinic recovering from a bowel obstruction caused by the trial drug I was taking. Currently, today I am still recovering from this procedure but recently found out the life of my tumor has died. The tumor was not able to survive in my body b/c of the shock my body went thru from the bowel obstruction and lack of nutrients since I was unable to eat for 5 months.

My doctor at Mayo calls me “his walking miracle.” My response to him was “God answered my prayers that day when I walked into his OR” and he said “yes but you had to find the Will to Survive and fight the battle I left you with.”

So “Say I Won’t and I Will.”

Thanks for reading,

Casey Sonke

Desmoid Patient since 2012

If you would like to learn more about Casey watch this quick clip from the show The Dr’s:


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