January 26, 2012
Dear Family, Friends, Clients and Colleagues,
For the past twelve days we have been dealing with a developing situation in our personal lives and over the past two days have spoken with many of you about what is going on. Everyone has offered to help and wants to know how to stay in the loop, so we have put together this letter to share information and help answer questions.
Our eight-year-old son, Alexander, has been diagnosed with a blood disorder called Myelodysplastic Syndrome (MDS). We are awaiting the results of further genetic testing to determine the mechanisms of his bone marrow stem cells that are dysfunctional, and should have those results next week.
MDS is very rare in children and is a disease where the bone marrow does not work well, and the blood-forming stem cells in the bone marrow fail to make enough healthy blood cells. The disease happens because the bone marrow cells do not develop into mature blood cells. Instead, these blood cells stay within the bone marrow in an immature state. The symptoms and the course of MDS may vary greatly from person to person. If MDS is left untreated, it can develop additionally into Leukemia, meaning the patient would have both diseases.
The good news is that we seem to have caught the disease very early; we are still awaiting the definitive IPSS score to determine the exact stage of the disease. Statistically, the younger the patient, the higher the survival rate from this disease. In addition, there is a cure for this disease.
The bad news is that curing this disease means that all of Xander’s bone marrow must be eliminated and his immune system completely suppressed in order to receive a Bone Marrow Transplant (BMT).
The first step to this cure is to find a genetically compatible bone marrow transplant donor for Xander.
We are working with the outstanding doctors at the University of Michigan Mott Children’s Hospital to find a match for Xander. We pray that our five-year-old daughter, Molly, is the match for him. She has undergone the genetic test and we will get the results next week. If she is not his match, then we will turn to the national database of bone marrow donors and will pray that we can find a match there. Many of you have asked how to be a donor; we are working out the details with the hospital on how to proceed with a bone marrow drive. General information about donating bone marrow can be found on the National Marrow Donor Program website at http://marrow.org
As we struggle to work through our newly changed lives and trying to plan for all that will be involved over the next series of months, we are reaching out in all areas of our lives; to you, our family, friends, clients, and colleagues, for support.
Already, in the first few days after the diagnosis, the overwhelming support has truly increased our hopes and prayers for our family to get through this with Xander being cured and back on the road to school. So many of you have shared stories of your family’s struggles and successes with illnesses; this means so much to us, thank you.
Some things that we will need during this time are:
- Gift cards for Arbor Farms, People’s Food Co-op, Plum Market or Whole Foods (we have close family members in town that have offered to do our shopping)
- Gift cards to Zingerman’s so that we can feed Xander chicken soup non-stop! It’s just a stone’s throw from the hospital and he LOVES chicken soup.
- Gently used clothing for Xander (size 8/9 or M/L) and Molly (size 6/7 or S/M)
We have pulled Xander out of school to keep him healthy, so that when we do identify a donor we can move quickly into the treatment. Some things that will aid us in making these transitions go smoothly:
- Wool yarn for knitting
- Stockmar modeling beeswax
- Card games
- Chapter books of fantasy, fables, or graphic novels (he is at a 5th grade reading level)
- Songs (in mp3 format) that inspire you, so that we can play them for Xander
With all our love and gratitude,
Emilie, Aaron, Xander and Molly Salsitz
This is great. I will subscribe. I'm thinking of some ways to show support... Maze books? Puzzles?
Books would be great.
Thanks for thinking of me