Tuesday, April 3, 2007
Day +41: Talk of Surgery in Coming Weeks
Well you wouldn't know that Brianna is doing better, unless you looked at her lab reports. We get a daily copy to see where her blood counts are, to see how her kidneys and liver are functioning and to see how well her body is coagulating. All her numbers seem to be getting better, however she began feeling quite nauseous again. We had a pretty good weekend, but yesterday she was feeling ill all day. She didn't eat a thing and tried to throw up to feel better. But it was no use.
(This little dish came to us about a week or so ago. It is a mystery who it came from, but it has brightened our little room we have called home for the past seven weeks. Thank you!!)
This morning she ate a little something, even though her stomach hurt. She's been in bed most of the time for the past two days and I'm prodding her to get up and walk around. It's so hard when you feel like you're going to toss your cookies all the time.
So far, the plan is to have a CT scan with contrast this Thursday to get a clear picture of her sinuses, lungs, abdomen, kidneys and GI tract. They have to rule out fungus in other areas of the body. They say there is a very small chance that there is, but since they're doing the CT they want to be sure. We pray that all is clear and that the infection has gotten smaller.
Her white count today at 2 am was 6.9, which is really good news. They decided to stop giving the white cell stimulator - G-CSF - unless her ANC falls below 2,000. Right now, her absolute neutrophil count is 5,330. The last dose of G-CSF was on Sunday morning, so her body seems to be holding its own.
Next week, Brianna will have another bone marrow biopsy. I hate seeing her go through these. I may have already told you, but she said the worst part of this is that when she's wheeled through the hospital halls on a gurney with a mask, she looks like a patient. She never thought it would be like this, and I never thought it would be either.
Now, talk of surgery has begun in order to remove one of the lobes of her lung. We're praying it's just the bottom lobe of her lung. There doesn't seem to be a really good picture of it, so hopefully this CT will tell more. But the mere mention of lung surgery scares me so. Brianna says she doesn't care anymore, "just cut the infection out of me." She asked if it was bad that she doesn't care and I, of course, told her it's normal. Anyone who has endured weeks and weeks of coughing, pain and discomfort like she has would be ready to do anything to get rid of it.
The thing we were hoping for was that her platelets would hold for a little bit. She's getting transfusions almost daily, usually two units. (Thank God for platelet donors.) But her body is consuming them with the bleeding in her lung infection (aspergillus cuts through the blood vessels) and her bladder - she has something called BK virus that affects the bladder and causes bleeding. We all have had BK at some point, but because our immune system is intact, it just becomes like a cold. But for immune suppressed people, it can cause bleeding of the bladder. We just have to wait out the virus, and it doesn't cause much discomfort or pain. And, all those platelets help her body stop the bleeding.
So the question they're asking is would cutting out the fungus help her body maintain platelets better. In the short term, maybe no for a few days while she's in the intensive care unit. But after that, maybe yes. But a surgeon has to be consulted to see what would be involved and whether a pediatric or adult surgeon would be better for her. Just the thought of her being in an intensive care unit for a few days scares me to death. Plus, I won't be able to stay with her in the ICU. I don't want to think about this, and as I said, I never thought it would come to this.
Please continue your prayers for us. We have some difficult decisions to make coming up and ones that may affect Brianna for the rest of her life. It's not right seeing your child go through this much. I just want to see her a happy teen again.
Thank you Newcomer's for your beautiful cards. They came flooding in last week and Brianna loved opening them and reading them. The nurses said Brianna had gotten the most mail. You are so caring and I don't know how to thank you. Here are a some of the cards that were sent. We feel your prayers, warmth and support.