The Daurer Family Adventures: What did you say? Who's Evan?

Last Wednesday we had a scare with Hannah. When she came home from school we found a petechiae rash from head to toe (a rash where the blood comes to the surface of the skin). We took her in for evaluation immediately to find out her platelets were down to 2,000. Platelets are what help your blood clot and the normal minimum level for anyone is 150,000. She was admitted to the hospital and received an infusion to help increase her platelets. While it worked some, it was not enough to bring her counts back to normal. We have had a roller coaster weekend full of emotions and unknowns. Until today we did not have any solid answers so we are only posting the news now as we have something solid to stand on.

We returned to the pediatric hematologist/ongologist for a follow up this morning with Hannah. They have diagnosed her with something called "Evans Syndrome." Essentially her body has formed antibodies against both her platelets and red blood cells. Normally antibodies are formed to kill viruses or foreign things in our bodies. In Hannah's case, the antibodies have become confused and have turned against the normal healthy stuff in her body. There are times that this can can be temporary with platelets in something called "ITP" but in Hannah's case after initial assessment, they found the antibodies on her red blood cells as well. In finding the antibodies on both her platelets and red blood cells they are confident it is not ITP but is indeed Evans Syndrome. Today they sent out additional blood work as there is a secondary diagnosis that is pending due to some physical findings on Hannah's body. We will have those results in 2 weeks and will know more then. So far the antibodies were only activated on her platelets and not her red blood cells, this is good because that means the antibodies on her red blood cells remain dormant at this time.

On Wednesday for an unknown reason the antibodies on Hannah's platelets were activated which caused her platelets to be destroyed. With initial blood work, Hannah's platelets were down to 2,000 (Normal is 150,000+). After receiving the transfusion in the hospital on Friday her platelets had risen to 20,000 which was encouraging. One of the biggest problems with Evans syndrome is that the majority of patients do not respond to treatment to increase cells. In Hannah's case although she did not have a dramatic increase, she had increase and the doctor was definitely encouraged. When we arrived today, Hannah's platelets had continued to increase and are currently at 114,000. Again, still not normal but what this tells us is that the infusion worked enough to allow her body to reproduce some platelets.

Essentially the doctor said with Evans syndrome, the infusions are like throwing a wet blanket on the fire trying to stop it from spreading. What we need to figure out with Hannah is how long the wet blanket (or transfusions) will hold off the fire (or antibodies) and allow her numbers to remain at the highest possible level. While "the wet blanket" is present Hannah's body will continue to destroy cells and what we will find out over the next 2-3 weeks is how quickly that will happen. Obviously the slower the better and the longer we can go between infusions.

Again, we are in the process of figuring this all out. Over the next 2-3 weeks we hope to have a better picture of what "normal" will look like for us as we watch to see how long Hannah's body responds to the treatment. For now we wait and are careful to look for signs that Hannah's platelets are decreasing again or that the antibodies against her red blood cells have activated.

As you can see Hannah has remained your typical 7 year old! Her bed was never lower than 4ft off the ground! Good thing we were in a children's hospital... they tend to understand things like this better than your everyday nurse!

We are so blessed to be surrounded by those who love us even though we are so far away from family... While Grandma Pat was flying in from Chicago (I called to give her an update and she told me she was on a plane lol!) some of our great friends had Aspen and Brooke over to "swim." I think they were disappointed to come home! Actually..... I'm confident they were disappointed! :)

IVIG.... A blood product that is the "wet blanket." It takes over 1,000 blood donors to make... wow!

8 months ago when we moved to Boise we had no idea what our future held. Living 2 miles from St. Lukes Children's Hospital is definitely a blessing in disguise. With 4 little ones and family states away, the reality of daily or weekly blood draws/evaluations will be a lot easier with a 5 minute drive versus 40 minutes....