“When we met Rob a few months ago, it was clear his wife Sharon played a significant role in his care and survival. Met the Mintons, hear their story and you too will recognize and applaud the efforts of an extraordinary caregiver-.”
Peggy Burkhard, nbmtLINK
In May of 2012, my then-53-year-old husband Rob Minton broke out in an itchy, red rash around his abdomen. He went to his primary care doctor who told him that his skin was probably sensitive to our laundry detergent or the soap he was using. He sent Rob to a dermatologist and an allergist to have lots of tests done along with several skin biopsies.
Rob was told that he had dermatitis and psoriasis and was given steroids to control the condition. That seemed to help temporarily, but then the itchy, red rash would come back worse. It spread over his entire body. He looked as if he had a bad sunburn. His skin started peeling off and he would swell up from head to toe. He would get infection after infection; staph infections, MRSA, and pneumonia. We were frequent guests at local emergency rooms.
After several different doctors could not identify what was happening to my husband, we decided to go to Mayo Clinic/Jacksonville (a 2 ½-hour drive from our home) to have some further testing done.
I had been doing a lot of online research by Googling Rob’s symptoms and found a very scary diagnosis that seemed to exactly fit what was happening with my husband: an extraordinarily rare cancer called Sezary Syndrome – a type of Cutaneous T-Cell Lymphoma that affects the blood, skin, and lymphnodes.
Although it is very difficult to diagnose, the doctors at Mayo Clinic began to suspect that Rob could have this type of cancer. After months and months of testing, he was diagnosed in early November of 2013 with Stage 4 Sezary Syndrome. We were told that he had a 25 percent chance of living up to five years. Our family was devastated. If it weren’t for my strong faith, I believe I would have fallen apart.
A gentleman named Neil Dicker, whose story was on a website for Cutaneous Lymphoma, sounded exactly like Rob’s. He was diagnosed with Sezary Syndrome in 2005 and had an Allogeneic Stem Cell Transplant in 2009. We contacted him to talk with him about his experiences. He was tremendously helpful. His suggestion: get onto the bone marrow recipient registry while doctors try to get Rob into a remission. Since there is no cure for Sezary Syndrome and remissions from chemotherapy treatments had shown to be temporary, an Allogeneic Stem Cell Transplant (SCT) was Rob’s best hope for a lasting remission. We let the doctors know that was the path we wanted to follow.
Rob was put on the bone marrow registry in January of 2014 because his only brother was not a match. At the same time, his oncologist started him on a chemotherapy drug called Bendamustine to clear the cancer cells in his blood. He finished his chemotherapy treatment that May and was pronounced “in blood remission.” In early July of 2014, we received a call letting us know that an 8-out-of-10 HLA match had been found.
Rob was almost ready for his stem cell transplant, but had one more treatment to get rid of any remaining cancer cells in his skin. He had total skin electron beam radiation therapy, four days a week for eight weeks. It caused him to lose all of his hair, but cleared his skin of any remaining cancer cells, in preparation for the transplant.
Two weeks later, we went up to the University of Florida in Gainesville (where his transplant would take place) so Rob could go through several days of extensive physical, dental and psychological exams to make sure he was able to go through the procedure. He had been working out often during his treatments
to stay in the best physical shape possible.
We also had to make arrangements for where we would live after he was released from the hospital. We couldn’t be more than 30 minutes away for emergency purposes after he was released. We found a furnished apartment to rent located directly across the street from the hospital. A few days later, we both moved into his hospital room on the 7th floor Bone Marrow Unit at Shands Cancer Hospital in Gainesville where we would spend the next 17 days.
On October 2, 2014, Rob was admitted to the hospital after he had a small surgery to have the Hickman (Tri-fusion catheter) placed in his chest. This device would be the means through which he would receive all of the chemotherapies, fluids, blood transfusions, platelets, and even the new stem cells. He was hooked up to this huge IV pole that would become his constant companion until he left the hospital. Rob began his first round of the chemo and drugs that would be given over the next several days to wipe out his own immune system in preparation to accept the new donor stem cells. Some of these drugs made him quite sick. As awful as he felt, we would make sure that he would get up out of bed and walk his laps around the unit, IV pole in tow! Getting exercise is necessary both physically and psychologically. He would also get up each morning and shower and get fully dressed. We felt that was important to help him feel more like a normal day and not a sick-in-bed day.
October 7 was “day zero” – transplant day! We had a “new birthday” party for Rob in his room, complete with presents, balloons, and a cake. Our children, my sister, and Rob’s brother were all there to help celebrate and watch as the new donor stem cells were infused through Rob’s tri-fusion catheter. These healthy new donor cells would give Rob and our whole family a renewed life together!
The days ahead would not be easy, by any means. Rob had to be monitored very carefully. I felt so fortunate that we had such a great team of doctors and nurses at Shands Cancer Hospital Bone Marrow Unit. They watched all of his counts, blood pressure and temperature closely. He would get blood transfusions, platelets, or be taken for an x-ray at all hours of the day and night.
Rob didn’t have much of an appetite and he didn’t find the hospital food appealing at all. I would run out to the store to pick up whatever sounded good to him, just so he would eat. His diet was pretty restricted, so finding something he could eat that sounded appetizing to him was a tricky task.
Rob continued to improve and was ecstatic when the doctor said that he could be released to live in the apartment that we had secured. Seventeen days in the hospital for an allogeneic stem cell transplant is a bit shorter than the standard, but we believe that Rob’s positive attitude and daily physical activity helped a lot.
I went over to the apartment a day ahead of Rob’s arrival to completely clean it. And when I say “clean,” I mean disinfect EVERY corner by wiping down all surfaces with a bleach solution, vacuuming all of the air vents, and making sure that there was a clean filter in the air conditioner/furnace. In Florida, we have to be aware of molds and fungus. It was crucial for Rob to be in a clean environment because his new immune system was very much compromised.
On October 24, I was able to go to bed without nurses and doctors constantly coming in to check on my husband all night long. I was really glad, but, at the same time, I was nervous. I was now completely responsible for caring for him, for keeping him safe, for taking his temperature every day, for keeping him germ-free. It soon became routine, and was not as difficult as I had anticipated. We would take our daily walks to the hospital, where we still spent hours every day in the outpatient clinic of the Bone Marrow Unit. Rob had to get IV fluids and blood work regularly.
On day +46, Rob’s team of doctors gave him a weekend pass to travel the 2½-hour drive to go home! We were both so glad to be able to sleep in our own bed again, if only for a couple of nights. It was wonderful to see family, as well. My sisters, my parents, our daughter, and a couple of friends had been taking shifts, staying with our 14-year-old son so he would be able to carry on with school and everyday life while we were temporarily living in Gainesville. We were blessed to have that help so I was able to completely concentrate on Rob and his recovery.
Rob’s health continued to improve over the next weeks. We would take short day trips to interesting places around Gainesville. This really helped both of us appreciate, together, the new lease on life that we’d been granted. Rob would still get very fatigued quite easily, so I was careful not to push him to do too much. On Day +70, just over a week before Christmas, we were given the “all clear” to move home! Although we would be making weekly trips to Gainesville, we were overjoyed to be living back in our own home.
We had a celebration on January 15, because that was Day +100 since his stem cell transplant! Day 100 is a turning point in the recovery process, as that’s when the greatest risk for critical sid
e effects has passed and engraftment is complete, so new blood cells are being made. Rob had fully transformed from his former blood type (O+), to the donors blood type (A+).
For the next few months we would still be making weekly trips back to Gainesville for blood work, IV fluids and sometimes platelets. I continued to make sure that Rob avoided being around crowds and especially that he stayed away from anyone with a sniffle or cough. I made sure that he didn’t do anything in the yard that involved touching the soil and that he stayed out of the sun. He’d still be on quite a few medications for a while, so I was often running out to get prescriptions refilled. He would exercise daily, whether it was a walk or a workout in the clubhouse gym (but not before wiping down the equipment with antiseptic wipes and also wearing protective gloves). Patience, perseverance, and positivity were all key factors in my husband’s recovery.
Today, Rob is 16 months post-transplant and feels very well. He still gets fatigued, which is normal, but is living life to the fullest. Thankfully, Rob never had any issues with graft versus host disease. We are grateful every day to his wonderful donor, all of his doctors and the staff at Shands Cancer Hospital and for the renewed life that God has given to Rob and our entire family.
-by Sharon Minton