Today is Danny’s birthday! He’s 51… looks 31, feels 81. But soon, he will (hopefully) feel like a 19-year-old, because on April 19, he will finally get the long-awaited bone marrow transplant! The date is confirmed and the donor is set. The only thing we know is that the donor is a 19-year-old female. Well, we also know that she’s an amazing human, because she’s saving Danny’s life!
We had a bit of a hurdle recently. As Danny mentioned in the previous post, a lousy part of the AML diagnosis is pain. Unfortunately, Danny’s pain, that was mostly controlled for the past few months, came back with a vengeance. A few weeks ago, he started having leg, hip, and lower back pain. Last Monday, March 20, it escalated to an intolerable level. In fact, he was unable to walk.
We were instructed by his oncology team to go to the ER, and so we did. He was admitted to the oncology floor that same day. After a couple of days, trying out different combinations of medications to give Danny some relief, we found a combo that worked. (Not total relief, but enough relief.) We were discharged from St. David’s South on Wednesday, March 22… just in time for Danny’s brother Craig to visit us from New York!
The doctor thinks the root of this pain is bone marrow fibrosis, which is a fancy way of saying “scarring in the bone marrow.” Fortunately, this will not impact the transplant date.
Many of you have asked some really great questions about the bone marrow transplant (BMT), curious to know how it works. I recently listened to a Leukemia & Lymphoma Society podcast, and the host used the really simple analogy of planting a garden to explain the process for receiving an allogeneic transplant.
Step 1 is a conditioning regimen, consisting of various chemotherapy drugs, designed to wipe out any remaining leukemia cells and suppress the immune system to make way for the new cells so they can come into the bone marrow and engraft. In gardening, this is like preparing the ground/soil for planting. Danny will be admitted to the hospital on April 13 to begin the conditioning.
Step 2 is the transplant. Most people are surprised to learn that the actual transplant is quite simple. It’s just like receiving a bag of blood through an IV. Once upon a time, the bone marrow harvesting and transplant process was pretty grueling, but in the 1990s things changed as researchers discovered a way to mobilize the stem cells that live in the bone marrow and help them to circulate in the blood. Those cells are then collected with an apheresis machine. In a book I recently read, titled When Blood Breaks Down, a patient described the actual process of receiving her transplant as “anticlimactic”. The transplant is equivalent to planting seeds in the ground. Transplant day is referred to as “Day 0”. Each day after transplant is referred to with positive numbers. For example, Day +1, Day +2, Day +3, and so on.
Step 3 is support provided by the transplant team to let the newly transplanted marrow do its job. During this time, the transplant team is responsible for protecting Danny from any infections and preventing graft-versus-host disease (GVHD) and rejection of the transplanted bone marrow. They do this by treating him with Cyclophosphamide, a strong immunosuppressant, along with a cocktail of other prophylactic drugs including antibiotics, antifungals, and antivirals. All the antis! At this time, the garden is essentially receiving water, sunlight, and care to help it grow and thrive.
Step 4 is engraftment. This is when the transplanted stem cells travel through the blood to the bone marrow, where they begin to make new white blood cells, red blood cells, and platelets. The author of When Blood Breaks Down, Mikkael Sekeres, explains that for a short time, the donor’s marrow and patient’s marrow will co-exist. Sekeres goes on to say, “Then a battle will ensue for land rights for the precious space in [the patient’s] bones.” It can take 2-4 weeks post-transplant before the new marrow starts to grow and Danny’s blood counts begin to return to normal. This is when the proverbial garden begins to finally grow!
The first 100 days are critical as this is when Danny’s new immune system is being established. The priority during this time is keeping Danny safe. As such, he’ll spend about a month at the hospital. If he’s doing well and the transplant is “taking”, he will be discharged around day 30. During the next 70 days, he will essentially be under house arrest as he’ll be, according to Sekeres, “so immunocompromised as the bone marrow cells wage war on each other and new marrow starts to make cells.” The only place we’ll go during this time is to the cancer care clinic for check-ups. By Day +100, Danny’s blood counts should be back to almost normal levels.
There you have it! I hope this helped provide a better understanding of what the BMT process is like. We will share another update prior to the transplant.
Until then, to my rockstar husband Danny, I wish you a very happy birthday! This time next year, you WILL be cancer free… and we will we celebrate in a BIG way!! I love you, Danny Handler!
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