These past few days have been a whirlwind, one thing after another, and I have scarcely had time to answer my phone, let alone blog! So, here it is, my faithful followers, your update.
Yesterday was Halloween, and while Sarah and I were sad to spend it in here, CHOC does it up big, and she had a blast! She got to go trick or treating with her "boyfriend" Julian, and that made her extremely happy. No one knowing what she was supposed to be did not make her happy, but that is the price we pay for being literary in the digital age where no one reads anymore. She had no problem informing everyone who told her what a pretty princess she was that she was not a princess, but Pinkalicious! They took the kids on a walk around the entire basement tunnel, which runs the length of the hospital, naturally, and there were tables along the whole way. Sarah got three huge bags full! Candy, toys, pencils, there is no way we will be able to consume that much candy in a year! Usually, Mike and I eat the candy together, so it's not so bad. This year, let's just say don't be surprised if I gain a hundred pounds.
The minute we got back (and I mean just that--the VERY minute we walked through the door) the nurse informs us that we are now on lock down, because she came back positive for c.dif. C.dif is short for the longer name of a bacteria I can't pronounce. I could google it for you, but I'm pretty sure you don't care, and if you do, then you can google it yourself. C.dif resides in the colon, and everyone has it, but it usually doesn't make you sick, because the average person has plenty of white cells to keep that bad boy in check. These sweet little angels? Not so much. The germs in their own bodies are making them sick because they have nothing to fight with. AND this bacteria is resistant to alcohol gel. So this means lots of hand washing (duh) and we can't leave the room. Yay for having some sort of answer as to where her fever is coming from after two weeks (maybe), but boo for baby girl and her poor little bottom.
Which leads me to the question on everyone's mind--when do we get to go home? See, that's the thing. With the AFND (Allow For Natural Death), we are allowed a certain amount of leeway. With the AFND, I could have reasonably taken her home, because we are not being aggressive anymore, we're just kind of letting nature take it's course. But that's not where we are, or why the doctor suggested the AFND. Sarah is still very much alive, and LITERALLY kicking, (we are working on it, but she is so bored and frustrated, and she's four) so we are not at the point where we are ready to just push her off on an ice floe just yet. She is still here. The doctor suggested we have an AFND to discuss which measures we wanted and didn't want in case we found ourselves in a position where she was slipping away. If we found ourselves in that place, he didn't want us having to make very difficult decisions at an already difficult time. He wanted us to have time to decide, while our heads were clear. I appreciate that, so much. But it didn't go exactly as intended.
I asked that the AFND be removed because it seemed to me that when people saw it, especially people who didn't know Sarah, it gave off a certain impression of her and the situation. Allow For Natural Death is a scary phrase. Essentially, it has the connotation (although this is not the intention, one can't help how the brain associates certain things) that we have given up, that we are done trying and that we are ready to let her go. We are SO NOT in that place. She is SO NOT in that place!
I found myself having a theological discussion with my daughter that I would expect to have with an older child, it is amazing how smart she is! She says she is afraid to believe in God, because she thinks if she believes in God and in Heaven, then that means she has to go there now, and she wants to live forever and ever! :( She is only four, but she knows what she wants, and she doesn't want to die. She is afraid that if she prays, God will not hear her, because in her eyes, so far he hasn't. She's still sick. She's still stuck in this "trap" as she calls it. The Cancer Monster still looms in the shadows, ready to destroy any peace she may find. She is so amazingly bright, but she is only a baby. She cannot see how many people are also praying, how many small miracles God has already granted, beginning with her very entrance into this world, how many people have professed that they have uttered prayers on her behalf when they do not consider themselves "the praying kind". I try to explain the nature of God, that everyone has a purpose, and her response is always the same: "I'm scared. I don't understand."
And why should she? She can believe in monsters, in fairies, in Santa Claus, the Easter Bunny, because those things are consistent, and they make a logical sort of sense. There are rules in their world. God has rules, but even those who don't follow can receive blessings unbidden, and where is the logic in that? How do I explain to my four year old the nature of a world that just does not make any sense?
I tell her simply that it isn't fair, that it doesn't make sense, but that we must believe anyway in order to find miracles. I try instead to explain the nature of faith. Faith is all we have left, all we have to cling to in a world that just doesn't make sense. As maddening and as trite as it sounds, it's the only answer we have.
The doctors have decided to go day by day, and decide based on how she does when we can go home. The problem is this. Without the AFND, and since we have decided to fight, we are treating this aggressively just like a brand new diagnosis. So if we are following protocol, and protocol dictates that she has to stay for 48 hours past the last fever, then we need to stay until she stops having fevers. Herein lies the problem. They cannot pinpoint an exact source for her fever, although the c.dif may be a cause, we just can't be sure, and it is more likely a neutropenic fever brought on by low white cell counts. It takes an average of 42 days to recover white cells after the last dose of Mylotarg, and we are giving a dose every 14 days. So theoretically, she is going to be neutropenic for a long time, and if it's the neutropenia causing the fever, and we are following protocol, we could be in the hospital forever. So where do we draw the line? No one really knows, so we are back to waiting and seeing.
Sarah hates it, but she is such a great kid, that she makes the best of things. She does "the Sarah" in the narrow space between her bed and my cot. She asks for her creature comforts from home. We order new toys on the internet when I can afford them, and I politely ignore everyone who has anything to say about it, because my daughter is amazing and deserves every luxury I can afford to give her. The packages she receives in the mail tell me that I am not alone in feeling this way, and we are so grateful for each and every one because they make her so, so happy! They give her renewed strength to fight the good fight, and fight we shall until there is no fight left.