This week was the FIRST TIME EVER her blood counts were within normal range!!!   We are so happy about that!  Hopefully her numbers continue to trend up and the hemolysis is over with. We will continue with labs every other week instead of twice a week!  We will probably never know the true cause and it could have been a perfect storm of many causes. 

To celebrate, we are trying the mountain trip again. last time we went to NC, stayed for 24 hours and drove 10 hours back home to go to the hospital and it was the worst drop in blood counts she had ever had followed by a stay at the hospital two weeks in a row. This time we will be going to the mountains in Maryland, much closer to home. We are so grateful to the Believe in Tomorrow Foundation offering Respite Retreats to families like us!  

Now for the steps back. Emmalyn has a lot of neck pain. She isn’t able to sleep through the night for the last week and has needed medicine to deal with the pain. Her neck is very stiff and she can’t turn it that well. We are still trying to figure out the cause. In the meantime, she has added another doctor appointment during the week, actually 2, at the chiropractor.  Her schedule is insane between all the appointments and I feel like I live in my car!  

Her next scans are at the end of May. These will be her 3 month post treatment scans. Please keep her in your thoughts and prayers. We are hoping for a clear scan and port removal. She will also be getting tubes in her ears as soon as possible. She is on a waiting list. The tumor and scar tissue has crushed the tube in her ear and she will need to always have tubes in for the rest of her life.