Small set back??!!

She inspires me daily!

Well, we have had a small set back...if you would call it that?! Miss Diana came to draw Ryan labs on Monday. Ryan had a low grade temp, and shortly after Diana left Ryan complained that her ear hurt. If Ryan's "counts" are high enough than we treat as any normal child...take her into the doctors and have her checked out. So, I called the office and made her an appointment and let them know I should be getting her lab results shortly. Well, Miss Diana called and said her "counts" were only 400. Not Good!! I called back the pediatricians office and Dr Shah said to bring her right in. We got there and sure enough she had an ear infection. Her temp was still only about 100.2 so we were okay to just go to the infusion center, get some IV antibiotics, and get a prescription filled for oral antibiotics. She would not have to be admitted unless her temp went up any more. Her temp did not go up, so we did avoid a hospital stay. School was obviously out of the question for the week, due to her counts only being 400, and we also canceled our Superbowl party. They also took her off her daily oral chemo meds for the week. I am not sure what dose they are going to start her off on. We were told originally that they start her off at 50% then increase it if counts stay within range (between 750-1500). The goal being to get her to be taking max dose without her counts being in the toilet. Well, after the first moth of maintenance we realized she was started off at almost 95% and her counts were doing great!! So, whether her counts went down because of the chemo, or because she was trying to fight off the infection???....we are not sure?!!! We will have her labs drawn again this Monday to see what her counts look like...hopefully they will be back up, and she can return to school?? We head back down to UCLA next Tuesday.

I have been conflicted with whether we should be sending her to school. I believe we are doing the right thing because she really wants to go, and her counts (until now) have been great! I believe that she should try to remain as "normal" as possible. Although she knows the lingo "Mom, I can't go cause I am neutropenic (the word used when her counts are below 500), right?", and she has no/little hair, she is really treated no differently than the rest of our kiddos. We have certainly been affected by Leukemia, but we refuse to let it be her life.