That's how I feel.
I suppose I should back up.
After those two crazy weeks in January we had a nice little break from chemo. She was scheduled to go back February 2 for the start of Maintenance but her counts had not recovered enough so it was pushed back a week to February 9.
So what is Maintenance? Basically it means she's down to once a month chemo infusions. And the rest of her chemo meds (three different once that have three different schedules, because of course.) I give her at home. Every three months she will have a lumbar puncture, where chemo is then placed into the intrathecal space. In other words a complete change of pace! To be honest I'm still trying to shift my thinking. It's such a change I'm not sure what to do with myself.
On the 9th while she was sedated for her lumbar puncture we had requested that she have another bone marrow biopsy. Mainly for peace of mind. After week of waiting we finally got the results that everything looked normal and healthy. It was a relief and yet I didn't feel as relieved as I thought I would. I wonder if I'll ever feel such relief again. However it did give us a sense that we are moving in the right direction. That everything we have done to get to this point has worked. That physically she is ready for some new things (however unready I may feel mentally).
Which brings us to today. A month or so ago I had chosen today as the day that she would start back to school. I told the school, talked with her teachers and then hoped it would take a long time to get here. On Friday Mary and I visited her class and passed out Valentine's and ate cupcakes. It was the perfect way to ease into it. She was happy to see her class and ready to leave after a little while.
I've been asking her all weekend if she wants to go back and she says, "yes," every time. To the point that she has gotten tired of me asking her. Incidentally, before school started in August I asked her the same question and her response was more eye roll and avoid the question. So this really is a step in the right direction. She's not one to hide her emotions.
Last night we set out her clothes and this morning when I woke her up she sat right up. I got her dressed then went downstairs and she even ate half a mini bagel (much more than she's usually willing to eat first thing in the morning). I think she was thrilled to be getting ready along side her brother and sister.
For the school drop off she and I hung out in the car a little bit before going into the school. I walked her to her class and as soon as she walked in she said, "hi guys!" I hung out for a little while as the teacher asked that I stay and talk to the kids a little bit. She has tried to prepare them for Mary's return, she found and shared with them the book Kathy's Hats, as most 6 year olds do they had many questions. She asked that I come and answer some of them. I had been wracking my brain to figure out how to explain what a portocath was to a group of kindergartners but all they really wanted to know had everything to do with Mary and much less to do with things like leukemia and chemotherapy. It was good for me and hopefully for them too.
When it was time for me to go I tried to make my exit discrete but the girl caught on fast and came right too me. We hugged and I told her that I had to go and she needed to stay with her class, she wasn't too thrilled at first but finally agreed and sat down on the carpet with them. But she saw me putting on my coat and wasn't happy about it. She came to me again and we talked again and finally agreed to stay. I then left as quickly as I could.
In a little over an hour I will be picking her up. For now we will do half days. Which will ease us both into this new routine.
In reality, though, she is where she needs to be. I've known that all along. I was reminded of it, though, when walking into the school and I saw the sign out front welcoming her back. I was reminded again when I saw just about every teacher and staff in an orange "Supporting Little Miss Mary" t-shirt or with some other piece of orange. I was reminded again when so many kids were wearing the same shirt, or were quick to say hi to her as soon as we came in. And again I was reminded when the principle came and gave me a hug. This is so hard! And it may continue to be, however I couldn't find better hands for her to be in.
