Okay, so I have finally found a way to blog from the hospital since they don't have wifi and my "smart" phone won't let me! This could get interesting...I am intrigued by this idea, because now not only can I blog more often when I am here for weeks at a time (instead of going AWOL for weeks at a time because I'm in the hospital with no wifi) but I can blog about the things I want to share as they happen, while they are still fresh in my mind. So, I am coming to you live via my laptop and an ancient ethernet cable that stretches clear across the room, and a physical therapy bench that I have turned into a makeshift desk. Today, after weeks of handling her chemo like a champ, Miss Boots has a fever, which spiked last night and never quite left. True to form, Miss Boots is playing on the floor with her Lalaloopsies as though she were sitting at home, wearing her favorite owl shirt and a red tutu. Her appetite is decreased, and at 1:00 in the afternoon, she has yet to ingest anything except her meds and the water she used to wash them down. I keep offering, she keeps refusing, and so it goes until about 10:30 at night when she all of a sudden eats an entire bag of popcorn and half a loaf of french bread...this is my daughter...
Other than that, it's pretty uneventful. The doctor says that the fever is almost to be expected since she's been neutropenic (that's fancy doctor-speak for "has no/low white blood cell counts") for about a week now, and that despite this and the bionic eye that refuses to go away (did I mention that because of low platelets she burst blood vessels in her eye, turning the entire white part a very disturbing and vampiric red?) that everything is okay. Now this is Dr. K., an elderly Hungarian gentleman who has been practicing for years and treats Sarah like a granddaughter, and sometimes worries more than I do about her. He says everything is fine, but there is something in his eyes that worries me, as though he is trying to convince himself. I suppose all it means is that for now, everything is fine, but we will be extra vigilant, just in case, which is fine by me. Sure beats the hell out of the rock star pediatrician who told me nothing was wrong and I was over-mothering.
The thing is, someone forgot to tell Sarah that there is any cause for concern whatsoever. As the doctors and nurses are "rounding", meaning that they are having a little mini-meeting to discuss the patients' progress and possible courses of action, he keeps looking through the glass doors at Sarah as he discusses with great gravity her arduous journey, her recent minor complications, and he sees her dancing, singing, playing with her Barbies on the bed, and a smile creeps across his face. Inwardly, this is a very sick little girl. Outwardly, this is a normal, funny, beautiful, incredibly SMART four year old. She is bossy and domineering, and she talks to me and the nurses like we're the help (don't worry, we're working on it, and she is improving!) but as Nurse Kerry put it last night after a five minute struggle to get her to take Tylenol, which is kiddie stuff compared to all the other crap that she takes with no problem, it is that spunk and fight in her that gives her the strength to go through this. That, and the wonderful, caring team that provides us with such loving care every single day, as well as all of the love and support from our wonderful friends and family. This is not an easy path we have to tread, and I am so thankful for those who have been there to help us through. We love you all! :)