We are recovering in every sense of the word. Brinley was released yesterday when her ANC went up to 100. That is still very low, but it shows an upward trend so they felt comfortable sending us home. She will need to be on IV antibiotics until she passes 500, and home health will need to come and check her again on Thursday. The onc again suggested a neupogen shot, but I still would like to see what she does on her own. I have a feeling by Thursday she will have increased even more. So we are holding all oral chemo until counts recover. They left her port accessed so we can administer the IV antibiotics and it is like we are in the beginning again, flushing the line and administering medicine, the same way we did when she had a broviac line before she got her port. When she walked in and Jade saw she was accessed, her eyes got huge and she said "She got her line back?? How?? Why??" I think she thought we were starting over again too!
Brinley is still here at Primary's today. Her ANC continues to stay at 0 and we are really hoping it will come up at least a little by tomorrow. She has a little sore in her mouth and is having a hard time going to the bathroom, so we are giving her miralax to soften things up so she can go. I am a little worried about the mouth sore because I know with low ANC you can get sores through your whole intestinal tract that can be very painful. I have been worried about that for months because she has complained of pain during bowel movements for a while now, but always had a nice high ANC. The sore in her mouth is not very painful yet, just annoying her because she said it feels like a "bump", but it is not affecting her eating or anything. We'll just keep an eye on it. The nurse said they take them very seriously with 0 ANC, but the strong antibiotic she is on should be helping out.
Brinley was released yesterday morning from St. George's hospital, so David and Brinley drove home. At 4am she got another fever, so she was directly admitted to Primary's and is there now. Her ANC is still 0. I'm not sure how much longer they will keep her, the fever went away and has not returned yet, so tomorrow is a possibility if her counts begin to rebound a bit. If you are unfamiliar with ANC, that stands for Absolute Neutrophil Count, and gives an idea of how her body is equipped to fight infection. The number comes from a combination of white blood cells and neutrophils (the white cells that protect the body against infection by destroying bacteria). Her neutrophils are 0, which means there is nothing in there to fight bacteria, and even a normal amount of bacteria inside her body can become dangerous when there is nothing to fight it.
A normal person's ANC would be somewhere around 5000. Anything under 500 is considered neutropenic and in the danger zone for infection. They are giving her a very strong antibiotic to counter her inability to fight infection, but the culture still has not grown anything, so it doesn't look like that is the culprit. But we will need her marrow to start making those important cells again so she is out of the danger zone.
Other than her lack of white blood cells, David says she is feeling fine. Talking non-stop and happy as can be. The rest of us just arrived home from a long drive from Las Vegas. I had to get my first Monster drink ever because I was running on 4 hours of sleep and needed to make it home without falling asleep. It did the job, I didn't get tired at all, in fact, I may be up all night.
I had a knot in my stomach all weekend, so I am glad to be home and closer to Brinley. I will be going in the morning to stay with Brinley while David goes to work. I will try and update tomorrow, and hopefully it will be good news.
We appreciate your prayers so much. Hospital stays are very difficult on our family.
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