Here's the skinny, the deal, the timeline...the scoop

For several weeks Payton has just been in a wait-and-see pattern. Last week when she finally got wimpy enough, she had a transfusion. She was pretty quickly having better mood, appetite and color. After another week now of watching her, her numbers are low still but are better (yay!), however her little body isn't doing what it's supposed to do and keep making it better (boo!). The genetic tests are all back and they can no cause of the aplastic anemia. This is all just an autoimmune situation.

Sooooo......the doctor is ready to keep moving on.

We will be moving forward with the immune suppression therapy, most likely the week after next. She will get a central line - a port or a picc line - prior to it and some platelets to help her prepare. The central line will be in for a while, and she will come home on a couple medicines for a little bit, including one I'll have to learn to give her by injection for a little while ( or take her to work and let one of my nurses there give to her). Doing this therapy is a 4 day admission to the hospital for her if all goes well.

Next week between her and Parker there are 4 appointments on 4 different days, prepping to turn 5 next week, working out all this that is coming and this little things called work. If you've never been asked to pray for good coffee before, I'm asking for you to do it now.

As we get more information about the schedule we'll be trying to arrange things for schedules. Trying to keep things as normal as possible for Parker and someone will have to stay with her at all times. I'm not always so good about asking for help when I need an extra pair of hands, someone willing to play ninja turtles or someone who is willing to talk about Frozen or rock out to Taylor Swift. I may be asking for some help.

Topping Her Off

This is the start of the third week Payton has gone in for twice weekly blood draws. She wants to know "do I have to get a poke today?" She mostly does ok, but if they draw from her arm instead of just a finger poke it gets a little rough.

So, basically at this point, her numbers have stayed the same type of bad since we started this. Her red and white blood cells are in too low. Her platelets, neutrophils and hematocrit are so low they put her into critical results. Her bone marrow is still working at just 10% of what it should.

The doctor has told us that at this point, this is all happening as a type of autoimmune process. With all the testing they did, they can't find any virus source that is causing this to happen in her. We are continuing with some genetic testing at this point but that won't provide any more insights for a while.

Because of her low results, she's officially acting different. It is catching up with her. The doctor gave her some time to see what her body was going to do but it just isn't keeping up. She will have her first transfusion Thursday morning. They will continue to monitor her counts after that and see what happens. Once she is at a point this is happening more rapidly, we will begin to  prepare for immune suppression therapy.

Updates more later this week after we see how she does. Thank you for the continued prayers, checking on us and thinking of us. It's appreciated more than you know.

Lots of people have asked what can they do. Right now there's not much here. If you want to help, please donate blood. Or consider getting screened to be a bone marrow donor.