Following his annual physical exam nearly a year ago, my friend Fred was blindsided when a routine blood test revealed that he had acute myloid leukemia. In previous articles, I recounted his search for a bone marrow donor, his frustration and disappointment when 11 donors reneged on their commitment to provide life-saving stem cells, and his successful transplant January 9 when donor number 12 stayed the course.
On January 28, an astonishing 19 days after his transplant, Fred was released from the hospital and began the countdown to the critical 100-day milestone when his doctors would determine if his organs had accepted his donor’s blood cells.
Off to a Rocky Start
Fred’s first few days at home are a mixture of excitement, fatigue and frequent naps. On day 24, he writes in an email update to family and friends, “Feel great. Best day so far for appetite.”
The next morning, however, marks the beginning of a frightening and painful 12-day downturn. Following a day of vomiting that started at 5 a.m., Fred is back in the hospital.
A stomach infection and inflamed lower esophagus followed by a painful bout of pancreatitis and a blood clot in his neck keep Fred in the hospital for 10 days. All this is accompanied by a 10-day siege of hiccups that adds to his discomfort and destroys his appetite.
Getting Back on Track
By day 36, his appetite back and the hiccups gone, Fred is home again. Taking the set-back in his stride and exhibiting his ever-present optimism, Fred emails “Tough 12 days! All issues are now resolved so no concerns going forward.”
Over the next few weeks Fred works on regaining the 25 pounds he’s lost since his transplant. An avid skier, he reminds his doctors of a goal he set before his transplant — to be on the slopes by mid-March.
To get back in shape and rebuild lost muscle tone, Fred resumes the stair-climbing routine he began during his initial hospitalization. By day 47 he is up to 16 flights a day and begins working with a personal trainer at the hospital.
During this time Fred’s white blood cell count drops. Doctors assure Fred this is normal following a transplant, but order tests to be sure nothing else is going on. Results show that 96 percent of his blood is now Fred 2.0 — as he refers to himself post-transplant — and only 4 percent of Fred 1 remains. As his white blood cell count rebounds, his doctors declare that Fred 2.0 is “exceeding all expectations for day 56.”
Goal Met: March 10-12 on the slopes
Fred and his wife Kathy celebrate the good news with three days of skiing. Fred writes in an email update, “The legs felt great all three days. Excellent snow, perfect temperatures, deep blue sky and bright sun – outstanding!”
Throughout the month of March and into early April, Fred and Kathy ski whenever they can. He continues to end his emails with “GAME ON,” and now adds “Life is good.”
Approaching Day 100
Scheduled check-ups continue to deliver good news: Fred’s blood counts show steady improvement, and his doctors call test results “excellent” and “perfect.”
On day 77 Fred meets with his doctors to discuss the 100-day tests that will include dental, lung, and chest x-rays and an all-important bone marrow biopsy to confirm the status of his bone marrow activity.
The meeting’s discussion also includes immunizations. Because Fred 2.0 has taken over, all the vaccinations Fred 1 received as a child are gone. Once Fred is six months post-transplant he will have to be revaccinated, a process that will take six months.
All Systems Are Go
Fred’s 100-day tests actually take place on day 84. Results for his lung and blood tests come back the same day. In his email update we get the good news that Fred 2.0’s lung capacity is better than Fred 1’s. Blood counts have jumped as well.
Results from Fred’s bone marrow biopsy come in two days later with reason to celebrate. On day 86 Fred learns that there are no signs of leukemia. He is officially in remission.
The biopsy also contains an interesting revelation: Fred’s chromosomes remain XY, confirming that his donor is male. Had his donor been a woman, he would now have XX chromosomes.
Fred’s subsequent meetings with his doctors focus on the next challenge of his recovery: The gradual withdrawal of the immune suppressing drugs he has been taking to reduce the risk of organ rejection. The process will begin on day 120 and continue over the course of six months.
And from Fred’s incredible and inspiring journey has come a new purpose. He has been asked to mentor other transplant patients. In his most recent email, Fred writes, “I never thought I would be good at something like this, but I am clearly headed to helping other cancer patients and getting a lot of satisfaction from it.”
Ever the optimist, Fred adds in the same email, “There are still some very big risks ahead of us, but we’ve gotten over all the hurdles in great shape. Life is good and we appreciate the miracle of every single day. GAME ON with life.”
GAME ON, indeed.
Also by this contributor:
Becoming a Bone Marrow Transplant Donor:Making a Commitment…and Keeping It
Anatomy of a Bone Marrow Transplant: Journey to Wellness