New News

Well everyone, I survived Aplastic Anemia, but I now have Myelodysplastic Syndrome (MDS).  We found this out yesterday afternoon and it came as quite a shock.  There isn't a whole lot of difference between the 2 conditions.  They are both bone marrow failure conditions, both require chemo and a bone marrow transplant.  The difference between the 2 is that my marrow is making the cells that it needs to, but they do not mature correctly.  Before they thought that my marrow wasn't making enough cells.

So this meant that my admission to the hospital was postponed.  I am now going in on Tuesday at 6:00 AM to start chemo at 9:00 AM.  I will be on Busulfan and Cytoxan.  The Busulfan will cause seizures, so they have me beginning anti-seizure medication before I even go in.  The doses of these will be higher than they were with the AA.  Some good news is that my brother can now donate his stem cells through his blood and not through a bone marrow harvest (from the hip bone).  It is much less invasive for him.

I am very conflicted with this new diagnosis.  I have a ton of questions for the doctors.  The AA made sense because it happened during pregnancy, which is one of the causes of it.  Pregnancy does not cause MDS.  The MDS is caused by a chromosomal defect, which I didn't have when they ran the chromosome test when I was diagnosed with AA.  MDS usually occurs in 70 year old men, I am a 32 year old female.  The survival rate is less as well.  I now have a 5 year survival rate of 50-60%.  The good news is that I have a lot of the factors that make the rate toward the higher end of that range.

I am very excited that my husband made it back to Missouri safely and he will be with me for the next month.  The doctors don't expect me to be ready to go anywhere from Kansas City for at least 6 months, so I guess I'm here for awhile. 

My sister-in-law, Anita, is trying to set up a charity account that you can donate to us.  If you want to donate and want it as a tax deduction, I'd suggest waiting until that is set up.  Thank you so much for helping with that Anita!

I appreciate all the thoughts and prayers coming this way. 

I need a new title for my blog now...I'm taking suggestions :)