Brenda’s personal story
In November 2009 at the age of 26, Jay discovered a mole on his scalp just above his left ear. The next morning we made an appointment with his doctor to have it looked at. His doctor referred Jay to a skin cancer/plastic surgeon to have the mole removed and biopsied. The week before Christmas we received a call saying it was a superficial A typical mole. Not knowing anything about these types of moles or melanoma, we had requested a melanoma specialist at Beth Isreal in Boston take a look at the slides and examine Jay. Both doctors agreed on doing a PET Scan, CT scan, and a wider excision on the area where the mole was removed. All came back clear! Jay was good to go and just needed to follow up with yearly exams.
In March 2013 Jay had four days of severe headaches. On March 4, he suffered a massive seizure and was rushed to a local hospital where a CT Scan revealed 12 tumors on his brain and some were bleeding. At this time, he was immediately sent to Massachusetts General Hospital in Boston. Several more tests were done and a tumor was also found on his lung. The tumors in his brain were inoperable so a biopsy was performed on the tumor on his lung to determine what this cancer was. Pathology results revealed stage IV malignant metastatic melanoma and he was given just four months to live.
Our world fell apart! The doctors at MGH received Jay’s original pathology report along with slides from 2009 and went over all the details with us. Never did any of us think that this one mole would ever come back and give Jay this devastating diagnoses of melanoma! Ever! However, we quickly learned through Jay’s melanoma specialist how this disease can come back and be fatal!
As a mom, and as hard as it was for me because I just felt so weak and broken, it was my job to encourage Jay to keep his faith, be strong and never give up on being able to beat this cancer. He was in the prime of his life and was planning on a beautiful future with our family and the girl he hoped to marry. He had so much to fight and live for. This diagnoses devastated our entire family and took all of that away from him! Jay immediately began whole-brain radiation, seizure meds, high doses of steroids and Zelboraf to treat the melanoma. Jay suffered terrible side effects and after a few months, scans revealed the Zelboraf was not working. He then started the Tafinlar/Mek combo.
In September Jay began having difficulty breathing. A CT Scan revealed the tumor on his lung had grown to fist-size, along with a large blood clot attached to it. It also revealed that the tumors in his brain grew in size and numbers. We were told at this time to take him home and have hospice come in. Jay refused to give up! He told his doctor he needed just one more Christmas with us!
Doctor Helen Shih who cared for Jay throughout his 10-month battle gave Jay an option to try a very risky radiation treatment to his lung to hopefully slowly shrink this tumor enough and not effect his heart. He did this! He also did another round of whole brain radiation as well. He was not giving up and willing to take any chance he had!
These treatments worked! Jay was able to celebrate another Christmas with family and friends just as he wished! He felt good and thought he had this beat. However, mid-January the difficulty in breathing came back worse than ever. We rushed Jay into MGH and tests showed the tumor was large again. At this time, we were told we needed to stop all medications and Jay was given just a day to live. He passed away peacefully on January 28th, 2014, holding our hands, and was surrounded by so much love from family and friends.
Jay’s doctors told him and our family that they believe his use of tanning beds at such a young age (16 1/2) played a huge role in his disease. It was then that Jay spoke with us and urged us to help others know the dangers of tanning beds. It was our promise to him! Watching him dwindle away, having numerous seizures and hearing him say, “I’m sorry mom, I did this to myself I just wanted to look good,” was heart wrenching! How as a mom did I not know there were any dangers to tanning bed use. All I would say to him was, “Jay, you’re going to get wrinkly skin,” that’s all we knew about tanning devices back then. We now know so much more!
So to honor Jay’s wishes we have started the Jason Farley All In For A Cure Foundation Inc. The name of our foundation was chosen by his brother Matt to show Jay’s love for poker (“All In”) and that we are “All In” to do whatever it takes to ban tanning bed use to minors and hopefully one day have a complete ban. We testified in New Hampshire and Massachusetts and were successful in passing the law that no one under the age of 18 can use a tanning bed or work in a tanning facility. It is our mission to help educate others about the use of tanning beds and sun exposure. We also support melanoma research to other organizations and have a research fund at MGH in Jay’s Name directed to Dr. Helen Shih. We also give financial support to those in need that have melanoma. Since we started in May 2014 in Jay’s memory through our fundraising efforts, we have raised more than $105,000. We hope through all our hard work and fundraising efforts that we will continue to honor Jay’s wishes for years to come.
Jay’s battle and the way he handled it has made me stronger and braver because it’s what he taught me! “Be brave and strong and never give up hope mom!” He was so brave and as weak as he got, he was still strong.
Jay’s quote he lived by and encouraged us to do this as well was to “Live, Laugh and Love” and he did love unconditionally! To all that he knew!
Jay will forever remain on our minds, in our hearts and we will honor his wishes always!”
Please visit the Jason Farley All in for a Cure website to learn more.