When our son Jeffrey was diagnosed with Epitheloid Sarcoma in 2014 at the age of 20 we were lost. We had never heard of this cancer, and found that resources for information on it were few and far between, not to mention the lack of medical research for a cure for this disease.
This rare cancer proved to be a beast, and despite the battle Jeffrey fought he went to be with his Heavenly Father November 15, 2015 at the age of 22.
When Jeffrey was diagnosed with his Sarcoma in 2014, we found very little information about this disease and realized later it was because it is so rare. 1 in 2.5 million are diagnosed with Epitheloid Sarcoma annually.
Jeffrey had sciatic pain and had been misdiagnosed with Plantar fasciitis mainly because he couldn't flex on the ball of his right foot. A couple months later he was in extreme pain, unable to walk without crutches and we were finally awarded an MRI. The results showed a sheath tumor called a Schwannoma attached to his sciatic nerve below his right buttocks. These tumors are usually benign and surgery was scheduled to remove it. But once they reached the site they found it to look suspicious, and instead of removing his tumor (now called "Jerry") they took a biopsy.
Biopsy results came in and we were introduced to this cancer called Epitheloid Sarcoma. Jeffrey was admitted into the Loma Linda University Proton Therapy program where he would have daily radiation treatment 5 days a week for 5 weeks. After about the 6th treatment, he was able to walk without crutches. When treatment was over and a new scan was done, it showed the treatment was very effective and shrunk the tumor greatly. Another surgery was scheduled to remove "Jerry" and we had been advised that due to the location of the tumor, Jeffrey would be paralyzed from the knee down on the right side. I joked that he wasn't going to be a professional skateboarder, so that was okay. We were informed that because Jeffrey reacted so well to the radiation and with the tumor removed, he had a -1% chance of it metastasizing.
Approximately 6 months later at his scheduled scan, we were informed that they found two spots in his right lung. Jeffrey and I were floored. We thought that we were going in for a regular follow-up appointment. I have never been hit by a truck, but when they delivered the results that is how I felt. Jeffrey had always been so stoic throughout his life. Except this. Jeffrey only cried in front of me twice since this started. When he was diagnosed with cancer and when we found out it had spread to his lung. My baby was shattered, I was gutted... the two of us absolutely did not see this coming.
Chemotherapy began shortly thereafter at Loma Linda, and after a few rounds with zero results we were blessed to find Dr. Arun Singh at UCLA. Jeffrey would begin extensive hardcore chemotherapy there which would require him to be admitted into the hospital for a 5-7 day period during the chemotherapy. After a few of these chemo treatments, two painful draining of fluid from his lung the new scan showed the initial two tumors in his lung had grown from the size of the tip of a crayon to a softball, with many additional ones now in his lung. One nasty tumor was growing rapidly and bursting through his ribs one at a time and was protruding beneath his skin on his chest, another was dangerously close to his heart, and the others were growing quickly as well. It was as if the chemo was feeding them.
On October 31, 2015 Dr. Singh came into Jeffrey's hospital room to let us know they would not be starting his scheduled round of chemotherapy. It was time to go home. I was just told to bring my baby home for good.
For the next two weeks, we celebrated Jeffrey. Our home was full of love, music, friendship, tears, goodbyes, stories, and laughter. Early morning of November 15th, with his brother Max, grandparents, step-dad Marcus and I around him Jeffrey passed away. We were blessed to have this time with him.
100% of donations will go to The Sarcoma Foundation of America for research, and hopefully one day find a cure.