What is MDS?

Before we go any further, I need to disclose a few things. 

1.) We do NOT research via the internet any information about Myelodysplastic Syndrome (MDS).  Most of the research out there is based on adults, which makes it not entirely accurate for pediatric MDS. 

2.) My description of this is in my own terms based on what the doctors have told us.  If you are a “resident expert” on the topic, please do not correct me.  No offense, but I’m not interested in finding out every little fact on the disease.  I know what I know because I need to know it…not because I want every detail.

3.) We have been very clear with our doctors that we do not want to know prognosis numbers.  We feel Reece’s outcome will be what it is–the numbers don’t matter to us.  Please do not discuss “likelihood” with us…your posts and comments will be removed.  Thanks for respecting this.

To give you a context for how rare this is in kids, Myelodysplastic Syndrome (MDS) affects 5% of the 10,000 children diagnosed each year in the US with cancer.  It is NOT cancer, but rather considered a sort of “pre-leukemia”.  If left untreated it would likely develop into a form of cancer known as AML, which is difficult to treat. 

MDS can be a result of other illness or disorder in a child’s life (e.g. a result of chemotherapy or Down Syndrome).  In Reece’s case, the original problem is that he has MDS.  He is missing one of his #7 chromosomes (i.e. monosomy 7); there is no way to be certain when this mutation started in his life.  As of today, it is believed to be completely random in his case and they are not concerned at this time that its origin was inherited. 

MDS is not uncommon in adults over the age of 60 and is often treated through blood transfusions in an effort to keep the blood healthy.  It is very rare in children, however, and because of the resiliency of kids’ bodies, they are able to actually cure MDS by doing a bone marrow transplant.  This the path we are heading down today.


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