Danielle is starting to make white blood cells..on her own! There aren’t a lot yet, but we are very excited. She has actually gotten an ANC count this morning, which is even better. This means she is developing an immune system again. Her count this AM was ~200. (a count of 500 for 3 days in a row means she can start sleeping at home) that being said, she would still need mom and dad to drive her to the hospital 4 or more days a week to do blood work, administer meds, platelets etc as needed, however, sleeping in her own bed without hourly vitals…priceless! First things first. She has to get off the TPN (IV nutrition) and start eating. She quit eating weeks ago and not even a chocolate bar could entice her, so we’ve got work to do. She also has to get off the morphine and as her mucositis improves I think she will be able to do that. Finally, she needs to move more…which if you know my daughter this can be a challenge, Nora (her CNA) doesn’t call her “bed slug” for fun…there is a reason!!(although it is funny)
Love this kid, let’s keep praying she continues to improve and grafting her new marrow and has NO further complications.
This is “bed slug” in action. She’s awake, just hiding because dad’s taking her pic.
I forgot to post this so it’s a little late. Sorry. +7 days after transplant, Danielle’s hair started coming out in clumps and making a big mess. “cut it mom”…she told me. I asked for scissors and Nora our CNA brought me some children safety scissors. You know the type that are short, dull with rounded tips? Yeah those ones. So I went to town, putting her hair into pigtails that I could easily cut off (not so easy with safety scissors let me tell you) and I made her bea-u-ti-ful! Ok she’s gorgeous on her own, but her hair was at least falling out in shorter chunks here on out. She loves it. Her mucositis really got bad that night, so it was a very miserable night and turned into a very miserable week which is why I haven’t had a chance to post. She was funny the next morning she woke up with hardly ANY hair left and I asked her what happened. “you know that towel you left on my pillow when I kept getting sick?” she asks.
“yea-I remember” I answer cautiously
“It felt really good to rub my head on it all night and made my hair fall all the way out” she smiles at me surrounded by a pile of hair on her pillow, sheets and blankets
This kid cracks me up. It’s the little moments right now that keep me going.
They hooked her up to morphine that day with a steady drip and a button to administer a stronger dose for times when the pain was unbearable. Like I said…tough week. :'(
Cyclophosphamide started yesterday, I guess this is some really strong chemo. She has to get up to pee every two hours and they are testing the pee every two hours too.
Threw up a lot yesterday, but now they have her on alternating anti nausea and it seems to be keeping her stomach calm (so far). I think this has been the hardest chemo treatment that she’s been on so far (and we’ve been through a lot). But she is being a very strong young woman, I’m very proud of her!
Mom & Dad on the other hand are trying to stay strong, really hard when you know your baby is hurting & fighting for her life.
The paper change link to counting down the peeing every two hours
PS- what does the “Day -2” mean, days to bone marrow transplant (so her new birthday will be 1-5-2017)
You all deserve medals of honor for bravery on the battle field. You have and are facing a mortal enemy. You have all done this with grace, honor, and courage. I read your last post and cried for all you are going through. And you are right, the world is a better place with our precious, one of a kind Danielle. We all want to watch her grow up and find her place in this world, as she has demonstrated such an amazing capacity to adapt and carry on no matter what has been thrown at her. She is amazing, truly amazing and she has the best parents at her side, the best hospital tending her and support group behind her. We are all praying, sending positive thoughts and love. I will be on my knees a lot during the process and have written dates down on my calendar. She will get so much loving at Christmas she will radiate with all the love. Love, Aunt Cindy and Uncle Dennis