Sunday, December 4, 2011

Interim Maintenance- Day 35

She has been doing pretty good. She hasn't been complaining of many headaches or tummy aches. I would guess that we have made "special juice" twice in the last 6 days. That is huge, especially when she had chemo on Monday and they upped the dose again (they have increased every time due to her high counts).

We did venture out and have a family date at Olive Garden. We loved it. It was so nice to get out as a family. I guess it is kind of risky because we don't really know what her counts are right now. We were careful (wiping chairs, tables, sanitizing hands a hundred times). I am sure people think I am a total freak, but that's ok.

Sunday morning was going just fine, but it seemed like she was asking to pee a lot. She would also complain that it was hurting to go. She also had a full on accident which hasn't happened in weeks. I decided she probably had a bladder infection and called PCMC. They said to take her in for a urine sample/test to check right away and NOT to wait. I needed to find out if there was an infection and get it treated ASAP to prevent worse things from happening. The on call doc said that we could be in big trouble with her health if we didn't treat it. GREAT! Just what we need... more problems.

Waiting at the Instacare....
It was nice to have a few hookups to minimize waiting time. Very nice of people to be so accomodating. She was great with weight, temp, and even peeing in the "hat". Sample came back with high WBC in the urine. They will send it off for cultures. The doc also explained that they usually prescribe Septra (which she is already taking), but would try another kind for 10 days. If the culture grew something back that was not sensitive to the Cefdinir, they would call and we would go from there.
Guess what that means.... more medicine. Just when we thought we had it figured out. Freak! It doesn't come in pill form and it has be taken in liquid form. I had the pharmacy flavor it in hopes to hide it in juice, smoothie, something. I KNOW she will not take it from a syringe. So hopefully the starburst thing will continue to work for the Septra (which she did a few times this weekend). And PRAYING that I can hide the new stuff TWICE A DAY in something. worst nightmare.
(thankful for it though)

Side Note... we do lots of things to keep us busy during the day. We decided to straighten her hair, which we have done twice before. I have been nervous to do it since her hair has thinned, but it turned out cute and she loved the attention she got.
I wanted to document it because she will be losing it during the next phase. I am surprised she has held onto it this long, but I am prepared for the drastic change coming our way.

She really is a trooper. She handles it all so well. I never know how to respond to people when they ask how she is doing. Yes it sucks, and it is so hard but she is so tough. She really is.

My little hero.


  1. Aw, what a cutie!! Praying for your little princess!!

  2. She is such a cutie pie. I wouldn't worry about what anyone else thinks. You are keeping your baby safe. Your family is beautiful. I love all of the smiles and the pictures. It's funny when the little ones want to take pictures. Thinking and praying for your family.
    Love, Jenni-Ohio