The Process

As you can imagine, it was been quite the learning curve since we first found out my condition had progressed.  Beyond understanding my condition in both general terms and specific to me, we very quickly became immersed in learning treatment options and modalities.   

The first step to this journey was being admitted to the Bone Marrow Transplant (BMT)  program.  We initially thought it was a given to be accepted into the program but soon realized that I needed to meet certain criteria.  Mike and I met with the transplant team on December 23, 2021 via a video conference for my initial consultation.  We were very anxious prior to this meeting as we did not know what to expect, but our anxieties (at least the ones we had going into the consult) were soon alleviated. We were provided a lot of information regarding options, the process moving forward and found out it short order I was in fact accepted to the transplant program.

A Bone Marrow Transplant (BMT) is also called a Stem Cell Transplant (SCT) or a Hematopoietic Stem Cell Transplant (HSCT).  The two types of bone marrow transplants are Autologous (you donate you own stem cells and then they are later transfused back into you) and Allogenic (comes from a donor).  Many blood diseases are treated with BMTs and my disease (Myelofibrosis) requires a Allogenic transplant, so the process to find a donor started very soon after my consultation.

There are 3 ways to finding a donor which are listed below in order of preference.  

1) Related matched donor - this is a full sibling as they will share the closest matching DNA to you.  Unfortunately my sibling did not qualify since he had previously been treated for thyroid cancer (Sigh, the epitome of the expression "he had one job to do!").

2) Matched Unrelated Donor (MUD) - this is where they search the donor registries globally to see if there is a match for you. (This is where I fall under).

3) Haploid donor - this is now looking at your children, your parents, half siblings.  People that would have half of your DNA.  These donors would be considered if the search for a MUD has been unsuccessful. 

The process to join a registry (to be a potential donor) is quite simple and only requires an initial moth swab.  More information on how to become a donor can be found at here

When I was accepted into the program we were told it could take anywhere from a month to a year to find a suitable donor with about six months as a reasonable expectation.  They actually found a donor very quickly (under a month) even though I do not have a common typing.  I was initially given an admission date of March 20th with the actual transplant on March30th.  So, by mid January of 2022, the ball had already started rolling and rolling fast.  My calendar soon became monopolized by various appointments, consults and tests.  Everything from biweekly blood draws, several CTs and ultrasounds to another bone marrow aspiration, these appointments were located primarily in Edmonton.  As the transplant program is located in Calgary, we also spent a week there in early March.

It was late on March 4th (we were actually driving home from Calgary) when my transplant nurse contacted us to let me know that "my donor is unable to donate at this time".  This is all the information that she had except to let me know that my transplant date would be delayed.  We did not know how long the delay would be, if they would be using the same donor or if they needed to start the search again.  As it was not until the end of March that we received another date, it was a very long month full of anxiety, stress and even depression for the entire family as we did not know what was happening.  I found out that we were able to use the same donor and a new admission date of April 20th was scheduled.  Then Covid hit my donor which created another slight delay with a current admission date is April 26th with the transplant scheduled for May 4, 2022 (may the fourth be with me). 

It's crazy that my donor is someone that remains anonymous and stays that way until 2 years post transplant when there could be the possibility of knowing them.  It is someone who is giving the utmost act of kindness.  They are going through tests, procedures, and donating without ever knowing me or my family.  When I started this process, so many people wanted to know what they could do for me and me goal would be to pay it forward if there is any possibility of being a living donor.  I will explain more of that process in another post.  

Thanks for reading.