I have found it very hard to post an update lately because I simply have no idea what is going to happen next with Ashley. It seems everything we plan and everything we are told by doctors changes constantly. As most of you know Ashley was scheduled 3 times for transplant this year. All 3 were cancelled for different reasons and the last her transplant doctor decided her counts were up and to hold off on transplant. Which contradicted her original decision of mandatory transplant due to the MDS diagnosis. However we were happy because her platelets were up in the 60k range. Now platelets are back in the 30-40k range and have been for a while. (Normal begins at 150k). Her hemoglobin remains just under normal but close to normal and her white fluctuates up and down a lot but has not reached the danger zone thankfully. Her local hematologist who sees her on a regular basis does not understand why she has not had a transplant and feels we are just waiting for her to fail which is dangerous because her body has built up a resistance to transfusions from having so many in the past. Right now Ashley is in pain every day from impacted wisdom teeth and TMJ. We visited several oral surgeons who all said her teeth need to be removed. We scheduled and even paid for a surgeon who would remove her teeth in her hospital after she receives transfusions to bring her platelets up. That is set for the 18th. Now with her platelets hitting a new recent low her hematologist is unsure if its safe for her to have the wisdom teeth removed because there is typically a lot of bleeding. He would like for her to have a transplant first to not take the risk. But again her transplant doctor cancelled the transplant. Now we are waiting on her doctor and the surgeon to discuss and decide if the surgery is still on. The next step obviously is to get more opinions on her case and find out what is the right thing to do to get her through all of this. I hope this answers the many questions I have received and explains what she has been going through. I cant thank you all enough for all of your support and prayers as we continue down this path.
Posted on: Mon, 08 Dec 2014 11:51:43 +0000
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