October 27, 2014

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Consolidation Day 28 + 14

It has taken an extra two weeks but we are finally ready to start the second cycle of consolidation. Scarlett’s ANC went from 252 on Friday to 1300 today. So…we begin again.

We have been enjoying the last two weeks so much! It’s like we are just meeting our “true” Scarlett for the first time. She has been so energetic and just plain funny! She really has quite the personality. She can perfectly quote almost every episode of Mickey Mouse clubhouse (“mama did you know that Pete is having a halloween party?”). She is singing songs (“under the sea! Under the sea!”). She is smiling and trying to run and jump. She is more willing to give hugs and kisses. Her laugh is truly infectious. And she does not stop talking! She has always been a little behind Evie in the amount of words she says but she definitely caught up and then some in the past weeks. Her voice is squeaky and sweet and she asks permission for everything. I tell her every time we go somewhere “don’t touch ANYTHING”. She always asks “can I touch you mama?”

Even with life being so wonderfully “normal” this last week, there is always a reminder of the evil lying beneath. Today, when we brought Tate to school, there were some girls dancing and jumping in the hall. Scarlett asked if she could jump too. She tried as hard as she could but had to hold the bench in the end to jump. She’s still a little too weak for that. One girl asked her mom why Scarlett was wearing a diaper on her face. As we sat snuggling one night Evie began to rub Scarlett’s head. She said “Scarlett rubbed all of her hair away”. Tonight Tate asked if Scarlett was going to the hospital tomorrow to get her chemo. He remembers everything that he hears.

The next four weeks will be almost the same as the last four. Week one is four days of chemo, with an overnight for hydration. She will get a LP tomorrow with chemo. Week 2 is four days of chemo. Weeks three and four have one day each of chemo. She also gets an oral dose every night for the first 14 days. It’s a lot of traveling, a lot of appointments, a lot of medications and a lot to remember. And for her, it is a lot of nausea, a lot of pokes and a lot of risks for infection. Hopefully this time we won’t spend an extra two weeks in the hospital.

That is the worst part. We can no longer hide behind a naive idea that it’s a smooth ride. We are a lot more careful now. No more visitors. No more playing outside when it’s wet. We will try as hard as possible not to bring her in crowds. It’s extraordinarily difficult to be at work, take Tate to school and keep Scarlett at home with only two adults. But it’s only four weeks or so. By Thanksgiving she will be done with chemo and hopefully making healthy white blood cells. And then we will have something else to be thankful for.

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