Bryan Cubitt: Diagnosed with MDS – Myelodysplastic Syndrome
My name is Bryan Cubitt. I am a 46 year old, living in Atlanta, GA. I am originally from Nottingham, England. My wife Kate is from London and our 5 children were all born here in Atlanta.
Less than 2 years ago in mid-November 2018, I was admitted to Northside Hospital after a routine blood test revealed an unusually low complete blood count (CBC) test results. The night before I had played in a soccer game of kids versus parents to end the Fall season for one of my kids’ soccer teams that I coached. I had no idea that anything was amiss.
Just after Thanksgiving 2018 I received the life changing news – I had been diagnosed with MDS – Myelodysplastic Syndrome. I had never heard of it. The doctor told me it was a condition of the bone marrow and usually affected older people, mostly above 60 or 70 years old. I would need an allogeneic Stem Cell transplant as the only option of a cure. I hadn’t spoken to a doctor in over 20 years and had never been sick in my life, and here I was hearing that I had a serious medical condition that needed chemotherapy, possible radiation and a Stem Cell transplant.
And so my entire life as I knew it was about to change, dramatically. I went through the many phases of receiving such news; shock, disbelief, fear, anxiety, depression, sadness and many more feelings of the unknown as to what lay ahead. I told my family, my friends and my co-workers – all of which was extremely difficult and emotional, explaining over and over again what it was and how it happened and what the treatment was, not really understanding much of it myself at the time.
The BMT program and Northside acted fast and by early January 2019 my transplant donor had been identified – my older sister Alison who lives in England. I started to receive blood infusions and sometimes platelets as my CBC counts fell through January to March 2019, a result of the MDS and also the low-dose chemotherapy I was given (Dacogen). My sister Alison arrived in Atlanta at the end of March. My transplant was originally scheduled for March 24th but unfortunately I developed a neutropenic fever just before so it had to be postponed. Next came the heavy chemotherapy but no radiation – my doctor decided not to give it to me. I finally received my new Stem Cells on April 9th 2019 and I was ready to beat this MDS.
The day after Transplant I went back into the clinic for my daily fluids and drugs but the tough journey was about to begin in earnest. Whether it was an infection or very low platelet counts, they admitted me to the hospital where I stayed in the isolation unit for 4 or 5 weeks. I got hit hard with infection after infection and hit a personal low point in my journey. My tri-lumen chest port got infected and had to be removed, I had a PICC line placed in my arm and then that had to be removed. My spleen was eating up my platelet infusions so fast that my platelet count prior to infusion was higher than my post-platelet count. My taste buds were destroyed by the chemotherapy to where I couldn’t taste anything at all and had no desire to eat. I had to be fed intravenously for several weeks as I went 5 weeks without eating solid food – my weight dropped by almost 50 pounds in 2 months. I had infections of the kidney, liver, bladder, bowel blockages, multiple daily infusions of blood and platelets, drugs and food. I endured X-rays, CT scans, MRI, bone and skin biopsies, was pushed around in a wheelchair and had to have someone dress and undress me and help me take the 8 steps to get to the bathroom. My wife sat by my side all day, cleaning up after me and held my head through the vomiting and the tears, sometimes I was so sick I couldn’t talk for days but she sat there and watched me – it felt good to know she was there. I came close to giving up but she pulled me through.
I went home from being hospitalized at the end of June 2019 but continued to return as an outpatient 7 days a week. Next on the long list of issues was GvHD, Graft versus Host Disease. I developed an all over skin rash, like a red glowing sunburn. I had to cover myself in steroid cream from head to toe morning and evenings. Later I went on to develop other complications from GvHD including my liver. My CBC counts although low, were not trending upwards towards normal range and so it was decided by my doctor that I needed a boost of stem cells from my donor to try to “kick-start” my transplant into producing more counts. This occurred in late August 2019 and by the end of September 2019 I finally started to see some improvement. My numbers were climbing slowly out of the “very low” range.
Today in early 2020, I continue to be a patient at the BMT program but I have my CBC tests performed about once every 10 days or so. I’m still on the road to recovery as I approach the 1 year anniversary of my transplant.
The journey has been and still is life-changing. The nurses, doctors, admin and support staff have been an incredible part of my story and my life. So much so that I am giving back to the program by talking to patients and caregivers about what happened to me from the day my life changed in an instant. How I got through those dark days and nights, how I felt and what helped me to cope, and hopefully it will help others understand the things that may happen to them when they embark on their own journeys into the unknown.
As a father, a husband and a scientist I revert to one of my favorite quotes:
Learn from yesterday, live for today, hope for tomorrow.
The important thing is not to stop questioning.
Albert Einstein
Bryan Cubitt- NSH BMT patient