School
So far school is going really well. Initially she was just there for a few hours a day. Until right before the kids went for recess and lunch. Just a couple of weeks ago we extended her day until after lunch. So she has recess, lunch and just a little time after that. She sometimes has a difficult time with transitions so having her able to go back to the classroom after lunch helps her get into that routine.
However by that time of the day she's pretty much done. We're taking things just a day at a time waiting until everyone feels she's ready to add on more time to her day.
She's pretty tired by the time she comes home. Which I can usually tell by her requests for, "iPad and popcorn." When she has more energy it isn't uncommon for her to spend a little time on the iPad then abandon it and wander throughout the house, usually ending up in her sisters room. Fortunately she has a pretty amazing sister who doesn't seem to mind too much when little sister gets into her stuff.
One of her favorite things to do at school is visiting the library. She loves to go and check out books. She's recently discovered they have "Pete the Cat" and it has come home the past three nights. She also loves the swing, that's an added bonus of having recces and is often how I convince her to wear tennis shoes (as opposed to her "Calle Boots, aka her pink cowboy boots).
I cannot get over how fast this girl's hair is growing. I will admit there was a time a couple of months ago that I thought her hair might never grow back. Once it started to come in, for me, it really came in fast.
Treatment
Right now Little Miss is in the Maintenance Phase of her treatment. We'll be in this phase for two years, fingers crossed. This means every 4 weeks she has IV chemo, plus lots of other chemo meds that I give her at home. She has one she takes every day, another she gets just on weekends, another just on Monday's. Then, the same week as the IV chemo, she goes on a steroid for about a week (and I have to give her Pepcid when I'm giving that to her). In addition to all of this every three months in addition to her IV chemo she'll have a lumbar puncture with chemo placed into the intrathecal space. If you think that might be difficult to keep it all straight, then you think right. I use the calendar and alarms in my phone to help me keep track.
Last week was an IV chemo week, which means it was a steroid week. It is so rough on her and it was the cause of her becoming too weak to walk last fall. This past round of the steroid seems to have really weekend her legs a lot, which has made this week a little rough on her. Fortunately she's in a much happier mood than last week. Which makes things easier on everything.
I have to say I've been a little panicky this week with her legs being so week. For a couple of days, at school, they pushed her around in a wheelchair. I've been having flashbacks to about two weeks before she was diagnosed with Leukemia she was having leg pain and limping around. I took her to have an X-ray thinking maybe she broke something. Nothing was found so the doctor thought she might have a sprain. Then fast forward two weeks later and we learned that the leg pain was actual cancer growing her little bones. So needless to say seeing her hobble around this week has been rough on me. I've spoken with the doctor's office a couple of times. The first time they assured me that this was to be expected with the high does of steroid she had last week. Today she does seem to be making some improvement, which has made me feel a little better. Today's conversation with the nurse we determined to wait out the weekend to see how she does. If there isn't much improvement then most likely we'll have an extra visit to make next week.
So that's the latest in a pretty big nutshell.
Happy Friday!
