Feb 17, 2016 11:56pm (Sara)

Today started off slightly dicey. I think “sporty” is the term fighter pilots use when a landing is rough yet successful. Today was sporty. As Scott mentioned, Maya needed some oxygen support through the night then woke with a fever. The chemotherapy she was given via IV, vincristine, is known to cause a fever but it was mentioned that the fever usually isn’t as high as 103.8. This, of course, got every one concerned so a blood sample has been incubating in the lab and we are waiting to hear back about a possible bug she could be fighting.
The fact that Maya had shallow breathing and low oxygen saturation as well as the delay in hearing from the lab hopefully means there is not fast growing bacteria in her blood. It could pop up in the next 2 days but fingers crossed it was just from coming off of the drugs from surgery yesterday. Her temperature stayed with in normal range for the rest of the day. Her blood panel this morning showed her white blood cells (WBC) down to 2.8 thousand. This is much lower than any healthy person would have. It means the chemo is working to kill off all of the rapidly producing abnormal WBC but this treatment is also killing off the rest of her WBC.
We anticipate we’ll see her blood panel show an alarming ‘zero’ for her WBC any day now. She will essentially have no immunity, her castle will fall. At least until her blood is “normalized” and the marrow can start functioning the right way again. Then her body will rebuild her supply and ultimately protect her as strong as ever.
The good news is that her electrolytes are looking good and her kidney function looks good too. If her hemoglobin (Hgb) drops much lower she will get another blood transfusion. It was at 7.6 this morning. She is holding on to her transfused platelets from two nights ago. She was up to 143 (normal is 150-450ish I think) and has been holding on to those – this morning she had 100. There are obviously many things the doctors and nurses are monitoring and they are all very good at explaining things to me when I ask. I’m sure they would be sensitive to parents if they were not wanting the details but for those of you who know me personally… I’m a giant nerd and have really appreciated the lesson in pathophysiology of leukemia. Perhaps I shall summarize it in another day’s journal entry.
Maya wasn’t too interested in playing much today. She watched Frozen and some video’s of baby Lincoln. My heart broke when she said “I just really want to see the buddy” then looked up at me and smiled. No crying. No questions. Just a statement as if she knows exactly why she can’t hang out with her brother but wanted me to know she misses him. She also saw a picture of him on the fun looking fire truck and let me know she’d like to go there. I can’t wait till she can get back on the play ground. She slept a lot today (Hgb at 7.6 = sleepy) and her new Boodah Button was a little painful. She is such a trooper and really never complains about the pain. I requested some Tylenol for her before I left tonight because she actually said “owie mommy, my boodah button”. I am so grateful for her communication ability. I think it will help me to support her through this journey.
So aside from the low hemoglobin, diminished respiratory rate, low O2 saturation, fever, pain, slight belly upset, hooked to a pole with all sorts of noodles, a nasal cannula, missing her brother…she is doing pretty well. See? Sporty. Oh wait. She also now has Roid Rage and amazing hunger. The steroids have definitely started to make their move in. I tried to tease her and said “Dada is going to drink your milk”…in hopes to encourage her to drink it first (this usually works though I will definitely think twice about this technique now). It didn’t work. Instead, the dragon spit fire at Scotty. She was so mad at him and still didn’t drink her milk. Well until later. Then she pounded 8 oz of vanilla soy milk in 30 seconds, a giant bowl of noodles and still wanted more. The RN told me that she had a kid who would wake his parents up at 3 every morning demanding a cheese burger. Bring it Dragon. I will feed you. Your castle maybe falling for now but let it fall. Let the old be forgotten and a new one built. A new castle that is stronger. Indestructible. Safe. Love is life.