Josh: Lymphoma Survivor
At the age of 23, Josh Scussell was starting his life, and like most people in their early twenties, cancer was the last thing on his mind. He was still on his parent’s insurance and did not have a primary care doctor. Therefore, when he noticed a lump on his left leg in the groin area, he went to a walk-in clinic to have it examined. Thinking it was an abscess, the lesion was lanced, but when blood, not puss, came out, and Josh’s leg immediately became red and inflamed, he was instructed to go to a local Emergency Department.
From that point on, Josh would encounter a lot of waiting. He was in the ED from 6PM until 9AM waiting for a room before he could be seen, and from there he was tested for everything from cat scratch fever to other infections and eventually a biopsy was performed. During the biopsy, fluid developed around Josh’s heart and he went into congestive heart failure. After spending three days in the ICU his heart rate and oxygen levels returned to normal. His girlfriend at the time, Heather, now his wife, was by his side throughout the entire endeavor.
“Heather’s mother, who is a nurse, was the first to bring up the possibility of cancer,” said Josh. “The doctors assured us this was not the case and that a biopsy would confirm this. Once I was out of the ICU and recovering, I received the results of the biopsy, which determined I had Non-Hodgkins T Cell Lymphoma. I was in shock and completely devastated. I was alone in my room at the time, and when my mother came in and heard the news she was more in shock than I was. It was a very emotional time for everyone.”
Josh was started on a chemotherapy regimen know as CHOP. CHOP is an aggressive form of chemotherapy. An earlier PET scan had revealed the disease had spread to Josh’s lymph nodes and a large tumor in his groin area. After 6 cycles of treatment with CHOP, Josh’s PET scan was completely clear. Josh was relieved and was ready to put it all behind him; however, he soon learned that without a stem cell transplant, the cancer could return within three months. At this point, it was suggested that he transfer his care and meet with one of the top T Cell Lymphoma doctors in the country, Dr. Francine Foss at Smilow Cancer Hospital.
“Dr. Foss got right down to business and explained the next steps in the process, which helped me keep the momentum going forward,” explained Josh. “I had already been through a lot, and wasn’t sure I could face a stem cell transplant.”
Just six months since Josh first noticed the lump, he underwent his first transplant, an autologous transplant where his own stem cells were collected before treatment and then returned to replace the stem cells that had been damaged by the chemotherapy. He spent three weeks in the hospital and experienced difficult side effects, but despite this, he recovered quickly and was back to his normal life after about three months.
A year later, Josh began having back pain. When the pain did not lessen, Dr. Foss ordered a PET scan and MRI, which revealed a spot that was soon biopsied. The results indicated the cancer had returned, this time on his T10 vertebrae. “Had we waited any longer,” said Josh “it would have spread to my spine and this would be a different story.”
For his second transplant, Josh receive an allogeneic transplant along with a new chemotherapy regimen that targeted a specific protein in the lymph cells, Brentuximab. An allogeneic stem cell transplantation involves transferring stem cells from a healthy donor match after chemotherapy in patients where their cancer has relapsed. Dr. Foss commented, “Josh’s story is a tremendous success story for the use of newer therapies. When patients relapse after autologous therapies, it’s often difficult to go on with an allogeneic transplant because using conventional chemotherapy, the cancer often does not go into remission. Because Josh did so well with the new drug, Brentuximab, he was the perfect candidate to go ahead with an allogeneic transplant.”
Six months passed before a donor match was found, but unfortunately the donor decided at the last minute not to go through with stem cell donation for Josh. The search continued using Be the Match® and Josh received word that a 25-year-old female in Canada had been located as a near perfect match for him. His transplant was scheduled two years after his first. Due to insurance issues, the transplant was done in Boston at Dana Farber. Dr. Foss was kept informed every step of the way. Josh was in the hospital for three weeks undergoing chemotherapy before the transplant and during this time, Heather spent every night by his side.
“I couldn’t imagine having to see her go through something like this. She has been with me from that first night in the ED up until now,” said Josh. “She was commuting from Boston to Guilford, CT every day for almost a month. She had to wear a full gown and mask, and never once complained. We have been together for seven years, and over half of that has been dealing with this cancer. I knew after that, she would always be by my side, and so I asked her if I could spend the rest of my life by hers. She said yes.”
Following the transplant, due to the high risk of infection, Josh had to undergo one year of isolation where he couldn’t leave the house. He lost 50 pounds and recovery was slower this time around. A year post transplant, Josh was eager to contact his donor, the 25-year-old woman from Canada. As it turns out, they had more in common than just bone marrow. Their birthdays are a month apart, and both got married last year. Additionally, from Saskatchewan, her husband, a professional hockey player, is a family friend of Mandi Schwartz, a former Yale University ice hockey player that passed away from acute myeloid leukemia in 2011. For five years, Yale University has been helping save lives through marrow donor registration drives in honor of Mandi, including one that was held in Mandi’s hometown, Saskatchewan, Canada, where Josh’s donor volunteered and decided to join the registry.
“Her husband’s best friend had leukemia and did not survive his transplant, so when they did not hear from me after six months, they thought I had not survived either,” said Josh. “I was able to receive her contact information after one year, and they were very happy to hear from me. My first email to her was titled ‘You saved my life’ and from there we began exchanging photos and information about each other. One of the photos she sent was of her on donation day with the bag of stem cells. It was flown in that day and I remember seeing the bag and touching it. And there she was in a gown, holding the bag of cells and smiling. It was very emotional for me to see that.”
This past October, one year and three months after his second transplant, Josh and Heather were married and honeymooned at Disney World. “I was really excited to hear that Josh and Heather got married. He has been a tremendous success story and I am so happy for them. It was so exciting to see the picture of Josh and his bride at their wedding – I felt like it was my son getting married,” Dr. Foss said.
“It truly meant a lot to see how genuinely happy Dr. Foss was for me when I got married,” said Josh. “She helped me through this difficult time, by more than just treating me, but by supporting me.”
Josh and Heather are looking forward to a long life together. They will never forget the woman that saved his life and plan to meet her and her husband this spring. Her small gesture in joining the bone marrow registry created a big connection spanning thousands of miles, and allowed for Josh and Heather’s happy ending to be possible.