Cycle for Survival: Westchester

Six years ago, I was your average 34-year-old. A wife. A mom of two young kids. Everything changed when, seemingly out of nowhere, I found a small bump on the back of my right leg. After an MRI, injection and tissue biopsy, our local orthopedist and lab in Westchester knew it was ‘abnormal’, but nothing more. They just didn’t have the capabilities to dig deeper.  And so, we began our journey with an amazing team of sarcoma doctors and nurses at Memorial Sloan Kettering.

What was thought could just be a ‘bad infection’, turned out to be, in fact, cancer. A bad one. A cancer so rare that there isn't even a real name for it, so they just call it by the name of the gene fusion it stems from, CIC-DUX4. Only 500 people around the world are diagnosed with it each year. It is systemic, aggressive and as of now, there are only a few treatment options, and they are often ineffective against this type of cancer.

On the day of my diagnosis, I asked my surgeon at MSK, Dr. Vaynrub, what my chances were of beating this thing. He looked at me, very sincerely, and said, “Sam, it doesn’t matter. There are so few people who have even had this type of cancer—Any outcome tally is statistically insignificant.” Of course, me being the planner that I am, I couldn’t accept that answer, so I pushed him on it. He said that at that time, the widest study ever done on my type of cancer had a sample size of only 39 people. And of that, only four of those people had tumors like mine…2 of them lived, 2 of them died. 2 lived, 2 died. As far as I saw it, it was 50/50. My life came down to a coin toss. So many questions flooded into my brain. Would I get to see my kids grow up? Would I make it to my 40th birthday? What would it feel like to die?

The next year was a rollercoaster. I had major surgery that removed my tumor and went on to receive 14 rounds of intense chemotherapy, totaling 26 days and over 200 hours in the chemo chair. I lost my hair, gained 30 pounds, and was pumped with steroids. On the outside looking in, people thought I was doing exactly what I needed to do to treat my specific type of cancer.  What they didn’t realize, though, was that with rare cancers, often there is NO set protocol. So, the doctors treat your cancer as if it is the ‘next closest thing’, or a ‘cousin’, if you will. They take chance after chance and do what they think is best.

After a brutal year, I am happy to say that I made it through. And as of now, I am happy to report that there is still NO EVIDENCE OF CANCER IN MY BODY. By some miracle, we came out on the good side of coin toss. And there is not a single day that we don’t recognize how lucky we are. I am lucky that I had access to Memorial Sloan Kettering. I am lucky that I had the right doctors to make the right diagnosis at the right time. But no one should have to rely on luck.

Because of that, our family is committed to doing the work for ourselves and for others. To make sure no one must worry about what side of that coin toss they will end up on. To make sure that no one must hear, “I’m sorry, there is nothing more we can do.” In the five years since my diagnosis, we have been able to raise over $910,000 that has gone specifically toward sarcoma research. Rare cancers, because they don’t impact what is considered a ‘large’ group of people, are often overlooked when it comes to funding for research. Doctors rely on fundraising from programs like Cycle for Survival. This is why every single donation matters.

Last year, we had the pleasure of meeting with Dr. Gounder, Dr. Kentsis and Dr. Avutu at MSK to get an update on the work we have been able to help kickstart. We learned about how our funds have enabled the scientists to analyze tumors like mine and to look for molecular changes to create what they are calling the Sarcoma Atlas. This will help researchers identify new therapeutic targets for sarcomas and determine how different treatments like immunotherapy can be used. We also heard about Dr. Avutu’s Phase 1 clinical trial that is ending, and how our funds from Cycle for Survival can help the study move into Phase 2 and include CIC-DUX4 patients. Progress is real, and it is because of the work we are ALL doing. The doctors stressed to us over and over how important we are to these efforts.  None of us can do it alone.

The funds that we raise for Cycle for Survival will get into the hands of doctors and researchers withing 6 months. The next breakthrough that can save someone’s life is around the corner. I am here because of the hard work of people like you.

So, THANK YOU for joining me in being relentless. Relentless in finding a cure. Relentless in making the world a brighter place. Thank you for the work you have done to give me, and everyone like me, an incredibly good chance of survival. By donating today, we are all leaving our mark on the world.

We are so grateful for your support!

xo

Sam + Dave