Darya, 26, is a Canadian writer who has adopted Amsterdam as her forever home. She is currently writing a memoir to chronicle her experiences through a cancer diagnosis, treatment, and life-after-the-fact, while navigating life as an expat and a newlywed. Aside from writing, she spends her time reading, journaling, and trying to define a new normal.
Teambald: with my dad (who shaved his head in solidarity) and cousins during my “dip” after round two of chemo. The ins and outs of stem cell transplantation
I am by no means a medical expert and what I am sharing now is what I remember being told by my doctors. Please bear this in mind while reading through this part of the series.
I was told by my doctors that 90% of people who are diagnosed with acute leukaemia require a stem cell transplantation. They shared that there was the possibility of being in one of three risk groups: good, intermediate, and poor. These risk groups are associated with the genetic mutations of the leukaemia cells. Some types (about 10% of cases of acute leukaemia) can be wiped out by chemotherapy and never come back, where others (about 90% of cases of acute leukaemia) require a stem cell transplantation due to their likelihood of recurrence.
While we were waiting for the cytogenetic results of my bone marrow aspiration, we hoped and prayed that I would be part of that 10%. Unfortunately, after weeks of waiting for the results, we were told that I was considered a “very poor risk” and that I would definitely need to undergo a stem cell transplantation. Hearing this news was incredibly difficult. On top of dealing with my own emotions, with my fiancé by my side, my sister and mom were also in the room. For this conversation we were visited by the doctor in charge of haematology in the hospital, the ward doctor and his assistant, and a nurse. As soon as I started to understand that we were getting bad news, yet again, I started to feel my face flush. I was terrified of what this meant for my future. The anxiety (and the stakes) were so high that I had to ask everyone to leave the room in order for me to process the information. The doctors were kind enough to leave, and I was given space to process the information before they came back, at a later time when I requested their presence, to explain the process in more detail.
All smiles with my IV on the last night in hospital before my pre-transplantation break.
Finding a donor
I was told that the odds of finding the donor from the international blood banks can be very slim, especially for someone from a non white-european background (my family is from the middle east). However, there is a 25% chance that a full blood sibling may be a match. Luckily, I have an older sister who was happy to do the test to see if she was a match. The waiting time – 2-3 weeks – was scary. There was a constant, lingering anxiety through the whole family about what might happen if she was not a match: what would happen if we had to go to the donor registry? And, in turn, what would happen if there was no match in the registry?
I was lucky. I was so so lucky that, after a couple of weeks of high stress and nerves, we were given the new that my sister was a match. It was a bit of a funny situation because she was at a retreat in Scotland where they had no cell service, so the hospital had a bit of a struggle getting in contact with her. I can almost hear her voice over the phone, from the reception desk at the cabin where she was staying, when she told me she was a perfect match and that we would be going forward with her as the donor for my stem cell transplantation.
I was lucky. I was so so lucky that, after a couple of weeks of high stress and nerves, we were given the new that my sister was a match.
My experience
I was out of what the doctors called the “dip” when my white blood cell count was back up to considerably safe level to no longer need round the clock supervision in hospital and allowed to go home. We were moving into a new apartment, so not only had my life been turned around by my diagnosis but my fiancé and I were starting from scratch in a new home. It was evidently a bit scary, but so exciting to know that I was going home to my new abode with my fiancé.
I was given about five weeks at home to recover from the first rounds of chemotherapy before returning to hospital for transplantation. Again, I was lucky. The pre-transplantation treatment for me did not include total body irradiation. I was given high dose cyclophosphamide and busulifan in order to kill off any remaining leukaemia cells, essentially emptying my immune system to be taken over by the donated stem cells.
Before my transplant my mom arrived at the hospital and decorated the cork board in my room.
Transplantation day
I received my stem cell transplantation, from my sister, around 10:00 on December 10, 2015 via intravenous transfusion. My family and fiancé were present for the the transfusion, as well as the ward doctor and a few of the nurses. It seemed that transplantation was an exciting and nerve wrecking day for every one. I was monitored very closely in case of allergic or adverse reactions but all in all the transfusion went quite smoothly. The room was full of positivity and excitement, and gratitude to science for giving me the chance to continue on living.
Many people refer to this day as their “new birthday”. I felt this way at first until I really had a chat with my fiancé and we realised and declared that, no, I was born on my actual birthday. This day, December 10th, is what we call my transplantiversary: the anniversary of the day where what felt like a simple IV transfusion saved my life.
Do you know someone who has been affected by acute leukaemia?
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Would you like to share your story with us? If so, get in touch here.
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