We started off with an early day today at MDA, 7:00 am blood work followed by 8:00 am lab review of the results. For some reason MDA is unusually busy today. Really really busy. There were so many people a the clinic this morning that they failed to give Ann all the orders for all of her blood work. Although we didn't find that out until later.
When we did get into the lab review we found out some good news. Ann's last LP came back negative again for cancer in her central nervous system! That makes all the LPsnegative for leukemia and we are both very encouraged by it.
Ann's WBC count was up to 2.6 K/ uL today (good). While her platelets were down to 10 K/ uL (very bad). RBC count was at a 2.76 K/ uL (also bad) and her magnesium was down again. I had resolved to get Ann to snack on cashew nuts (thanks for the link Tina) but they have not kicked in yet. So back to the transfusion unit we went for 2 units of platelets, 2 units of irradiated red blood, magnesium, Benadryl, L asik and vitamin D.
The up side is that Ann is feeling good enough to actually walk around on her own for the 1st time since we got here. She turned down the wheel chair when we got to MDA this morning and insisted on walking at a nice steady pace with me where ever we had to go. This extended to the transfusion clinic when she took a couple of small walks with her IV tree and pumps.
While Ann is int he infusion clinic the blood/chemo is injected into one of the main arteries going into her heart by way of her CVC. While it creeps me out to look at and I live in constant fear that it will get infected, the staff assures me that it is the simplest and easiest way to infuse liquids into her.
As you can see in the picture left it is made up of two tube or " lumens" with in-line clamps (the red things). Each lumen is capped off with a sort of one way valve that allows medicine it enter and prevents her blood coming out. Trust me it looks even creepier without the dressing on.
The only good things about spending the day in the transfusion clinic is that Ann gets lunch free, we get to watch some cable TV and the nurses all just love Ann to bits.
I have started talking to some marrow donor recruitment programs (see links on the side of the page) and asked them if they would like to use Ann in their drives. The answer has been an enthusiastic"yes". I hope that it will increase the number of potential matches Ann has to draw from when the time to select a donor comes. But even if it doesn't I hope that maybe someone else will benefit from a person reading about Ann's story and being moved enough to become a donor themselves.
The BMT clinic called today and let us know that the insurance company has denied Ann the use of a drug called Rutuxan after her future transplant because they consider its use with ALL to be "experimental". The Insurance company had told me as much yesterday when I spoke to them on the phone but now our BMT Doctor at MDA says differently.
So on one hand the insurance company has released the funds for high resolution matching but has denied a drug that our Doctor feels is necessary to treat the remaining cancer cells after the transplant takes place. For those of you who want to know Rutuxan is a genetically engineered human antibody that is tailored to boost the immune system. For more information go to http://www.rxlist.com/cgi/generic/ritux.htm.
MDA is doing an appeal and I need to claim down and remember that there is months between now and any future transplant. And I know who I need to talk to if MDA's appeal fails.