This is the Biography of me, Alexander Salsitz (I prefer Xander). I am a 13 year old boy who's life changed in January 2012 when I was diagnosed with MDS (Myelodysplastic Syndrome). I have had 3 bone marrow transplants since then, the most recent one in April 2013. This blog documents my journey, beginning with my diagnosis, treatment, and ongoing recovery.
Sunday, July 2, 2017
Love and Energy Connection in Germany
Hello to all of Xander's Followers!
We are so blessed to be able to share this exciting news in Xander's Journey ...
On April 28th, 2017 we celebrated Xander's 14th Birthday! This will always be a miracle to us :-)
April 28, 2017
Last month we went back to Clinic for Xander's very first "Survival Clinic" visit. This is really no different than any other visit, However, now he only has to go back once every year! WOW! Xander has grown in all areas this year, and is well into puberty. Of course, it was questionable whether his body would go into puberty, as it is a common side-effect of the treatments for his disease that he would not go into puberty. His metabolic and blood numbers are fantastic, there are no signs of disease. We have had multiple NurtrEval's done over the year, and his body continues to absorb nutrients and he has obviously benefitted from the continued vitamin supplements and probiotics.
As Xander continues to grow physically, he is also growing emotionally. Aaron and I felt that he was ready, so we finally wanted to reach out to his donor. As many of you know, this process is completely anonymous at the outset, and it is up to each family if they want to get to know each other. So we sent a letter of information request to the Bone Marrow Transplant Coordinator at The University of Michigan Mott Children's Hospital to hopefully get in touch. Just about two weeks later, a UPS package arrived on our doorstep and it was the donor's information!
We could not believe our eyes - Xander's donor is German! The cells came all the way from Germany to Xander on April 30, 2013. Thanks to Facebook, we were able to get in touch right away and made plans to visit him in June. His name is Michael Fengler and did this out of the goodness of his heart. Since the donor search is worldwide, our American program is linked to the German program. Actually, Germany has one of the highest percentages of people registered to be bone marrow donors in the world!
On June 24, 2017, the circle of energy and love was finally complete! We met Michael, and his mother, Pia at the train station in Bonn, Germany. We had a wonderful day in Bonn, seeing the sights, talking politics, and of course, telling Michael how much this meant to us! We also explained the scientific aspect of the transplant, which means that Xander's blood is NOT a product or Aaron and myself, but it is 100% Michael's blood. This reality really hit a soft spot with all of us.
We spent some time deciding what would be the best gift (s) we could take him, here is what we decided:
- University of Michigan, Ann Arbor shirt
- "Hail to the little victors" sweatshirt from Mott
- The Mott stuffed bear that Xander got during his transplant
- One of the strands of cranes from the "1000 cranes" that were folded for Xander by the RSSAA family, along with Sadako and the Thousand Paper Cranes book
- We created a memory book with many of the note tags from the tissue paper flowers that were created by the RSSAA family.
- We gifted Pia an RSSAA tile from Motawi Tileworks
Thank you to EVERYONE that helped us make it to this point!
Seriously, we could not have done it without you ALL.
Emilie, Molly, Aaron, Xander, Michael and Pia
Michael, words cannot express how grateful we are to you for your gift of life.