Evan MacNeil's Personal Profile
Update and Reflections
Evan met his donor Bryan Lelek in 2011
As of 2011 Evan is three years post-BMT. He is 13 and a half and has probably grown a foot and gained 30 pounds since his days in transplant! He is healthy and happy, and we couldn't ask for anything more. When Marrowforums Administrator, Neil Cuadra, asked me if I would be interested in writing this profile last December, I was more than happy to oblige. It hasn't been as easy as I thought it would be to put this story together and it has taken much longer than I would have expected. It has required me to reflect back on that time in our lives in great detail and, as a result, has me revisiting many of the emotions of those most difficult days and months.
We were so fortunate at the beginning of Evan's journey with aplastic anemia to have found the AA&MDSIF website and Marrowforums. I became a forum member immediately and I cannot begin to tell you the wealth of information and support I received from the other members. I believe the information and insight I gained through the AA&MDSIF and Marrowforums is one of the main reasons why Evan did as well as he did in transplant. Evan was post transplant and well on the road to full recovery within one year of his diagnosis.
I cannot stress enough the importance of becoming involved in your own care or that of your child or other loved one. Knowledge is power and the "squeaky wheel does get the grease". Learn everything you can about your disease process and the various treatments available. Inform yourself about the Centers of Excellence and be open to travelling, if possible, to get the opinions from the best in the field. Ask questions, be vigilant, and don't be afraid to speak your mind and advocate for the best care possible.
We had the opportunity to learn the identity of Evan's beloved donor in July 2010. We had to wait the mandatory two years and then, while we were looking into releasing our information, we received word from our transplant coordinator that Evan's donor was doing the same! We were so excited! After the exchange of some introductory emails, we had the chance to speak with Bryan on the phone. It was a two-hour conversation filled with emotion that we'll never forget. We made our best effort to thank this wonderful man for the gift of life he so willingly provided to Evan, but still to this day, I ask myself how can someone really thank another for such an amazing gift? I joined the OneMatch Stem Cell and Marrow Network here in Canada and hope to one day repay the same favour to someone in need. My husband and I regularly donate blood to the Canadian Blood Services, and I remain a member of Marrowforums where, occasionally, I can offer some advice or hope to another parent starting out on this scary journey. These are the things I can do to "'pay it forward" as it were and it makes my heart happy to do it.
Evan, too, has a desire to pay it forward and since his days in transplant he has realized that he would like to become a pediatric hemotologist/oncologist. I think back to that fateful day when we had the transplant meeting with the BMT doctor in Toronto and how frightening and surreal the conversation was and all the emotions we felt. What if that doctor had concluded the conversation by informing us that he was an aplastic anemia and bone marrow transplant survivor? The instant hope that would have provided! Evan is young and his career ideas may change a hundred times between now and when he graduates high school, but thanks to a wonderful donor, excellent health care and, well, some luck I suppose, he can reach for the stars and accomplish anything he sets his mind to. A part of me does hope he'll be that doctor talking to the parents of that child one day but really, at the end of the day, all that matters is that he is healthy, happy and loved.
Next: Evan's Reflections