What began over a six month period of lethargy, nausea, weight loss, gall stones and diverticulitis along with dropping white counts, culminated in a diagnosis of biphenotypic leukemia for Randy on September 21, 2013.
The phone call came from the hematologist on a Friday evening with the bone marrow biopsy results from that same morning….”I have bad news for you,” the doctor said. “Your bone marrow is 87% full of leukemia cells.” Randy was admitted to Vancouver General Hospital the next day to start the induction chemo therapy.
Our lives changed in the seconds it took for the diagnosis to be delivered by the doctor. The sense of disbelief, fear and panic was immediate. We had no way of knowing then what lay ahead for both of us…there would be so many medical complications on Randy’s road to remission and such a steep learning curve for me. I realized very soon I would have multiple responsibilities and would wear many “hats” as Randy’s travelling companion – nurse, psychologist, pharmacist, nutritionist, cheer leader, driver and liaison with family and friends. One thing I was not prepared for was the psychological burden of watching your loved one suffer so much and the inability to fix it.
The first of several medical complications came 6 weeks into Randy’s induction chemotherapy treatment. He needed emergency surgery to remove his gall bladder. His white count was near zero. The drain that had been placed into the gall bladder was not working. There was concern about his ability to survive the surgery, but there really was no choice. He would surely die of sepsis if the gall bladder was not removed. Two weeks in and out of intensive care and many nights of sleeping on the floor or in a chair with one eye open for me, and Randy was home. The first of many miracles.
Next came two rounds of consolidation chemo therapy and ten chemo/lumbar punctures. During this same time, we were advised Randy’s best chance for survival was a bone marrow transplant. His only sibling was not a match. We held our breath while a search for a donor was conducted through the world wide registry. On December 24th, the call came – an angel, a match had been found for Randy. The date was set for his bone marrow transplant – January 28, 2014.
The aggressive chemo therapy before the bone marrow transplant took its physical and psychological toll on Randy. When his counts hit the bottom, he developed a resistant C. difficile infection and severe mucositis. More prayers and more vigils. I was afraid to hope and afraid to lose hope.
On the day of the transplant, the doctors and nurses gathered at Randy’s bedside and sang “happy birthday” to him….a second chance at life. That day is etched into our hearts forever and the song has new meaning.
On day 67 post transplant, we were back in emergency. Randy was diagnosed with a perforated bowel. Life saving surgery was a must, but again his counts were fragile. Additionally, he was on high doses of the anti-rejection drugs, cyclosporine and prednisone which inhibit the body’s ability to heal. More candles burning for him, more prayer groups praying. More days and nights at the hospital, more conversations with the chaplain – hoping for his survival and contemplating life without him. One week in intensive care, one week on the ward and another c-difficil infection, Randy was home with a colostomy. Another miracle.
Day 100 – the bone marrow biopsy results…was the transplant successful? Was Randy in remission? He was! It was the first time we allowed ourselves to think of a future. Fast forward to January 24, 2015 - Randy’s “first” birthday post bone marrow transplant. Fifty family and friends came together for a “celebration of life” in Randy’s honour. It isn’t very often that someone attends their own celebration of life – but Randy did just that! What a joyous occasion!
In March 2015 we connected by telephone with our donor. We were all so overcome with emotion. Randy and I did our best to find the words to convey our gratitude. But, how do you thank a stranger for saving a man, a husband, a father and grandfather, an uncle, a friend and a gifted teacher? It is simply impossible.
Today, twenty months post transplant, we travel on together still finding our “new normal.” The life we had and the life we shared before the leukemia diagnosis is no longer. Living in the “in between world” of remission is not easy. Chronic GVHD, fatigue, multiple medications, immunizations, blood tests and ongoing appointments are constant reminders of the disease. The fear of the leukemia returning looms constantly, casting a very long shadow. In spite of this or maybe because of this, we endeavour to live each day in the present. We celebrate the smallest of victories and marvel at the smallest of things - knowing it could have all been so much different.