Still low counts

It's hard to find time to update this but...quickly I'll say after two weeks in confinement her ANC is still too low to resume any oral chemo. This makes over two weeks now. Basically home-bound no school (a huge thanks to her teacher for coming over to teach her this last week), we have rarely left the house and Grandma's have came over here to watch my kids while I went to work. Last Wednesday was my last day at work, so it makes it a ton easier to take care of Avery's medical needs and my other two small children. Since we were hospitalized two weeks ago, home health comes over every Tuesday and Friday to draw blood. So home health nurses don't have to come three times a day, nurse Amber or nurse Johnny have been giving her antibiotic's through her port every 8 hours. Over the last two weeks, her ANC has went from 200,100,300,200,200. It needs to be over 500 to resume any of her med's. On Friday her RBC dropped a bit as well.Today she is exhausted and has had more complaints about pain. I think the antibiotics hurt her tummy as well. She played hard yesterday with her friend Abi and that probably wiped her out. They make up games and Abi is so good to play along.She has came over a lot this week and it saves us. I think she's getting use to us and all the santizing

Yesterday, in Avery's room they brought the beach to our house. They found sounds of waves on a beach to play on the computer. Put on swimsuits, filled buckets with water to put their feet in, laid out blankets and towels all over, one bed was a sand bed they said the other they put cold packs from the freezer underneath the bed spread and said that was the water bed. Sometimes the mess drives me crazy, but I know how important it is for kids to use their imagination especially when your home-bound and they were totally entertained for hours. They get along so well.

Abi told me Avery was telling her how bad she hates cancer and last night she again got in one of her moods where she feels bad about herself. I just hate it. I try to be so positive on this blog, but also be honest. This is our life day in and day out. And besides our constant worry and stress, I hate what cancer has taken from her childhood and not only her childhood but Kelsi's too. I hate that it has taken away her innocence. I hate how it make her feel and how she worries about treatments and procedures. I hate that constantly something has to hurt. Although with no chemo, this has definitely been a break for us. Just crazy at the same time because then you worry about them not having any chemo and low blood counts. Last night, she sadly talked about how that girl (I've mentioned the story before) called her a boy. She said I dress like a girl, but people think I'm a boy. Sometimes I get so choked up when we have these talks it makes it hard to respond for a minute. Her hair is growing in fast now.  I told her kids sometimes don't understand the medicine she was on and after they had the flag ceremony were they put her picture on the big screen in front that said our own honored hero and explained about blood cancers how bad that girl probably felt. I hope all this makes her such a strong girl and in life to not worry about what others say or think. But to be kind to everyone.  I worry too much about what others think and I wish I didn't.  On the flip side, a girl made me laugh when she told Avery and I, You are so lucky that they put a picture of you on the big screen in front of everyone. That was so cool. Glad she thinks so. It was good for Avery to hear. I don't think she feels so lucky.

 I will go back and update more: about our last appointment Feb. 9th, the amazing princess party and concert they did for the 4 cancer fighting cuties in Iron County, (That was a highlight and I feel bad I haven't had a chance to post about it yet)  our suppose to be fun weekend turn hospital stay, and good news. Make a Wish contacted us on Friday. This wonderful orgainization gives families something to get exciting for among all the other crap! Yay for MAW!