Sunday, September 16, 2012

Her poor little tummy!

Okay, so I'm gonna jump right in here, because I am too tired to finesse my way into this. I literally stayed up the whole night last night with Sarah, who would sleep for a half an hour at a time and then wake in a screaming fit of pain,screaming, "Owie! My poor little tummy!" She was like that all day yesterday, but it got worse in the night. The nurse was so distraught, she called the resident on call four times (I'm not kidding!). He took one look at her in the morning, scratched his chin and said he had to talk to Dr. Kirov. Dr. Kirov didn't have too many more answers, but he did have some solutions that were put into immediate effect. Abdominal x-ray and ultrasound, bone marrow aspirate and biopsy in the morning as scheduled. Blasts were up to 20% again. The doctor is avoiding my eyes again. The signs point to leukemia, and what she is going through is excruciating bone pain. My tears actually managed to break through my robot exterior today. I am starting to get angry.

Not at the doctors or the nurses or anyone else. I am angry at this monster who is trying to steal the only thing I have ever asked for, the only thing I have to show for my life. For the first time in three years, I want to curse and to hit things. What the fuck!

She's just a baby, and all she wants is to be normal. She wants to make use of her Disneyland pass without having to clear it with a doctor. She wants to play in the yard, jump in puddles, she wants to be a nurse when she grows up. She made me promise to stay with her forever. It isn't fair. She should be able to fucking sleep without the aid of heavy narcotics.

For the first time in three years, I am angry and I am scared. I have held on to hope so hard for all this time, that I never allowed myself to be afraid, truly afraid that I would have to move on in the world without my daughter. In four years, I have had to be away from her exactly twice. TWICE, in her entire life, I have had to spend a night away from my child. And I was chomping at the bit to be near my baby. How the fuck would I be able to get through an entire lifetime?

Everyone tells me to stay positive, to keep the faith, that she's not done here, that this is a bump in the road, another anecdote to add to her amazing history. But what if they're wrong? What if I'm wrong? I don't feel her slipping away from me, but what if I'm wrong? What if I am so closed off from my feelings in this survival mode that I can't feel her? For three years, I have held on to my faith. But I am truly starting to get scared.

For now, they have Sarah on a Dilaudid drip, which we discovered somewhere before shift change this morning works better than the Fentanyl which gave her only a little relief, so at least she can stay comfortable consistently until we can find out exactly what's wrong. It buys us more time here, of course, but as long as she gets to stay, I will live in this hospital for the rest of my life.

Before y'all get too worried that I've taken up permanent residence in the bell jar, I'm going to keep on keepin' on the way I always have. Cancer has taken everything but my child and rendered me utterly useless. There is nothing for me to do but to hope and to pray. I am trying to add things to Sarah's childhood bucket list, I am planning for Christmas (she wants to make gingerbread men. I have the task of figuring out how to make them pink). She wants a white kitten she can call Marie and bedeck with pink bows. People have beat the odds before. And if there is anyone likely to put on her pink sparkly boots and kick cancer's ass, it's my princess.

In the meantime, anyone have any ideas on how to make pink gingerbread men?

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