Day 22

Overall, we had a fairly good week.  Lexi was a bit more down in energy and attitude this week, but that is kind of expected.  Chemo can knock you on your butt hard.  She also hasn't been sleep well, at least partial due to her increased appetite, and the lack of a full night sleep is starting to wear us all down.  I am getting tired of waking up at 3am, hauling her soggy butt to the potty, and then having to change her sheets, and getting her a snack(or meal) and having to wait for her to fill up before I can go back to sleep.

And speaking of food, holy appetite!  I said before she was acting like a teenager, and I stand by that.  She has the attitude of a 7th grade girl, and the appetite of a teenage boy!  She can put away 18+ nuggets in 2 hours.  Plus two cups of water.  And that's not to mention what she eats the rest of the day.  This morning she started with a bowl of oatmeal (medicine hidden inside), a cup of water (more medicine in that too), and that would normally have been her breakfast.  But now she follows that up with a plate of pasta and shredded cheese. After all that, she would have eaten more, but we had to head out to our appointments for the day. 

We started out with PT this morning.  She was slightly worse than last week, but again, this wasn't unexpected.  Last week she was able to walk a bit on her own.  Today she had to have two hands to hold to walk.  Her therapist was afraid in the beginning that Lexi was a "yes" kid and would push herself too far.  She quickly learned that this was not the case.  Lexi will tell you when she doesn't want to do something.  And she will tell you what she does what to do too.  She did most of what the therapist wanted her to do, and was sure to tell us when she had enough of it. 

After PT we went over to clinic.  While waiting, she got to play with her favorite Thomas the train table.  Since she couldn't walk as well this week, she had me push her around the table in her stroller so she could push Thomas around the table!  As per usual, Lexi was not happy to have her port accessed, even though it doesn't hurt.  Accessing is when the put a needle into the port under her skin, rather then finding a vein.  I apply numbing cream before the appointment, so it doesn't hurt.  The struggle is worse then the procedure itself.  Then she got her blood drawn and was given her chemo.  While we were waiting to get her blood count numbers back, she decided she wanted to take a nap.  The nurses thought she was too dang cute. They were calling each other over to look at her.  She didn't even flinch, even with all the talking and other patients IV pumps beeping. 

Her numbers all came back fine, so it was time to go home.  But since she was out cold, the nurses and I agreed to let her nap a bit before she had her port de-accessed. So I got to sit for about 30-45 minutes playing on my phone while she napped.   When she finally woke up, she put up almost as much of a fight for having the de-access done as she did for the accessing.  Once she was done, it was finally time to go.  And she got to show everyone what a true movie star she is.  She was not fond of mommy trying to get a good picture. 

Her next appointment is scheduled for Monday.  At that appointment they will do another bone marrow biopsy and spinal tap.  These tests will tell us how well everything has been responding to the treatment, and prepare us for the second phase of treatment, consolidation/intensification. 

We continue to be extremely grateful for those who are making and dropping off food.  It has all been wonderful.  I have told Shawn, I don't know how we will deal once we have to start cooking on our own again!  Just as wonderful as the food, is the visitors who allow us some time to get things done and/or help us get things done.  Mopping the floor, putting toys away, or giving us time to process paperwork, or even better, take a shower or have some down time. We appreciate each and every thing people are doing for us.  And another benefit of visitors, it perks Lexi up to see other familiar faces.  I know she is getting sick of seeing me all the time, given that as soon as Daddy gets home, I'm good for nothing.  If anyone wants to help us out for a few hours at any point, please, just tell us when.  We probably won't turn you down.  Unless you are sick, of course!