I have not posted in awhile & I have a lot to update you on… this will be a long one.
Perhaps the most exciting news to share is that this blog turns out to be so much bigger than I ever expected. The folks at the NMDP’s Be The Match registry really took notice and I was invited to participate in a video shoot that will be used to make an online course for donors. How exciting is that?!?!?! They flew me out to Chicago and I was the only individual that they asked to participate outside the Chicago area. What an honor to be included this project.
When I arrived and met some of the amazing NMDP girls I was shocked at how excited they were to meet me. I even heard the words that I’m a “celebrity” within the organization for my blog. I was shocked! I really didn’t think that this blog was much more than my own thinking out loud. But at the same time, it was very gratifying to hear that, because I set out to do this blog to portray as detailed and accurate description of what I went through so that future donors knew what to expect when it was their turn to donate. (please rewind back to August to revisit my donation story) I tried to find something similar prior to my own donation and was not very successful in my search. I can tell you that all the literature they provide you as a donor and the information session you have with a NMDP physician does provide accurate info on what to expect, but it is just different hearing it first hand from another donor. This new online course for matched donors will provide that first person perspective for others and I’m thrilled that I am a part of this.
In addition… I got to go to CHICAGO!!! I absolutely love Chi town; it’s my favorite city and has the BEST food in the whole country in my opinion. I visited my favorite breakfast place ever… Bongo Room, got some of the famous Garrett’s popcorn and enjoyed my first deep dish pizza ever at Pizano’s. I ate well, did some sight seeing and got to see a friend while I was there.
Remembering back to when I was desperately seeking some type of first hand story of what to expect with PBSC donation I posted a message on the Be The Match facebook wall asking if anyone out there had gone through that donation process and had any words to offer me. I got one message from a woman named Sue sharing that her husband’s sister was just starting her PBSC donation; donating her stem cells to her brother, Steve (Sue’s husband). She offered some of her sister-in-law’s experience and we started to correspond briefly from there.
Sue has her own very detailed blog about her husband’s story as he went through the process of receiving his sister’s cells and his journey. Right after I donated, I had no updates on my recipient’s health, and I was living vicariously through Steve’s story and Sue’s blog became a big part of my story. I’m not sure that Sue realized that, but as I read on in her story and her journey, not just Steve’s, I was constantly reminded of the strength and struggle that the whole family goes through. Their story touched me and you’ve seen me share some of their photos and asking for prayers and good juju, so this may ring a bell.
As time went on, I followed Sue and we became quick friends in the world of facebook… bazinga! Sue and her family live in Chicago and when I visited we had tried to plan a visit. Unfortunately we weren’t able to meet even though we were just blocks away from one another. While I was in Chicago, Steve had taken a turn for the worse and started to develop complications that ultimately led to the final chapter of Steve’s journey. It’s with a heavy heart that I share with you that Steve passed on March 18th. While he is at peace now, his family’s journey is not over. So I ask that you continue to keep Sue and her family in your prayers and send her some much needed juju. Godspeed Steve.
Please consider making a donation to the Reppen Family Children Educational Fund. Sue and Steve have two daughters in college and a son in 8th grade and their education remains a priority.
I must say that throughout my interview with the NMDP and throughout my donation process I have never found the experience to be overly emotional for me. While a somewhat extended family member’s need for a match prompted me to ultimately join the registry, it was always something I wanted to do. I made the decision I wanted to do this; I signed up; I was called as a match and I donated. It was just that simple. I know in the grand scheme of things it’s bigger than that, but donating was simply not a big deal. It seemed natural and something that I was supposed to do and I never doubted or questioned my decision for a minute. I never was affected personally and immediately with cancer so I didn’t have the emotional tie to the decision that some others may have had.
Within days of closing that interview session cancer became a reality and has affected me very closely. The decision I made to donate bone marrow and the gift of life I was able to give my recipient suddenly has so much more meaning for me. While my patient was doing very well at my last update, her journey’s not over and I continue to think of her and her family and pray for them all. Remember that it is not just the patient but the whole family that is on this journey. While I blogged about my donation process, this newest story is not mine to share, but I ask that you extend your prayers (& juju) to my family as well.
I hosted a Be The Match Donor Drive on March 18th and grew the registry by 7 members. I’m a little disappointed in the outcome of this donor drive, but that’s 7 more possible matches on the registry. This was part 1 of 2 donor drives that I’m hosting. The 2nd part is on Thursday April 21st that will be held at my office for IRS employees only, but this donor drive has received a HUGE response and I’m expecting 30-50 people to sign up at this drive. Woo Hoo!!! I shared a story with a newsletter at work and that has definitely boosted the exposure at my office.
Whew… that was a long one. Signing off now. Hope this finds you all well!