extra prayers

On Thursday 1/22, I noticed that Lilly had a patch of petechiae on her back. that "mom instinct" told me to call clinic and request a CBC. Her platelets were low, but not low enough for a transfusion. But, we were told to stop all oral chemo because Lilly's ANC was zero and it's not supposed to be that low during maintenance. That Saturday, Lilly was admitted for a fever. She tested positive for Rhinovirus. She received a blood transfusion and we were released on Monday. We had clinic that Friday. Her ANC was only 200. We still didn't start oral chemo and we skipped the spinal tap because her doctor's didn't want her sedated with her cough. The following Wednesday we did another CBC... Her ANC was back down to 100... We just did another CBC yesterday... ANC still 100. What the heck!! Why isn't her body producing what it needs?? We go on our Make-A-Wish trip in two weeks and her numbers need to be higher than they are now, or I'm guessing we won't be going! Aaaahhhh! 

I just talked to Aubri, Lilly's nurse in clinic, about the plan... We are STILL holding oral chemo for another week. I asked her if that's ok that we haven't been on chemo for so long during the maintenance phase. She said it's definitely not ideal, but it does happen sometimes. We will do another CBC blood test on Monday to see where her numbers are. We are hoping they will be up. If NOT, they will start Neupogen shots to boost her ANC. They don't normally use Neupogen shots on leukemia patients, unless they are a transplant patient. But we might have to... Dr. Doug is confident we will still be able to go on our Make A Wish trip. Lilly could use some extra prayers to get those numbers up. She has been looking forward to this magical trip we are taking, and she would be heartbroken if we had to delay it. So, please say an extra prayer for Lilly.

On a lighter note.... We are so grateful for the thoughtfulness of others... A Young Women's group came over last week to give Lilly and Emery a Valentine. I don't personally know any of these group of girls, but they brought a smile to my family and I am very grateful for them! They heard of Lilly through a mutual friend and wanted to meet her. They were so cute with Lilly and Emery and my girls felt so special!! I am reminded of the scripture in Mosiah 2:17 "...when ye are in the service of your fellow beings, ye are only in the service of your God." Thank you for serving our family! We Love You!