(She was wanting to pose for the camera...things we used to do often...yay)
We headed up to SLC again... every Sunday we have our routine. Wake up, clean up the house, pack, leave around nap time (so she will sleep half of the way), get dinner in Draper, go to Treena's, play and play, go to bed around 11:00, wake up around 7:00, drive to PCMC, stay for 5 hours..ish, drive home. Pretty exciting. It's already getting old...bad attitude to have.
Medicine is still a slight struggle. She has been doing better with the 6MP in the watermelon gummy. The septra...not so much. She HATES it in whatever from we use. It is usually a 30-45 min process now. We did try it in strawberry syrup and she seemed to like it a little better.
She gave daddy a gummy while she ate hers... they had to make sour faces.
Her hair... Scott wants to shave it and get it over with. I am still holding on. Everyone keeps saying that she has so much hair still. But it is much thinner. Everytime I brush her hair, a good amount comes out (the pic below). She keeps saying she is ready for a haircut, but I keep ingoring her. I should probably let her do it if she is ready. We are planning a party to do it... all of the boys are going to shave their heads with her. She gets to be the only special girl!!
It has been so nice to have her back to her normal self. She is dancing, singing, and teasing her brother. Yay! It makes things SO much easier. I am trying to implement one behavioral issue a week. This week we are working on using nice words. It's just so hard to follow the "steroid month" because we gave her whatever she wanted.... we had to. Experiencing that is like nothing I have ever had to do. I just keep thinking that we will take it one day at a time and try and get things back to normal.
Things went well at the clinic. She was really emotional this time... not sure why. The port access went ok. She played much better with the child life specialist. We had to wait in the RTU for over an hour... that was a struggle. Fasting until 12pm was not her favorite.
Her labs looked pretty good. We are still waiting on the results from the CSF. I still get nervous every time. There are so many things that can go wrong from all of the different chemos and their bodies going through so much... just trying to think positive.
WBC (normal range 6.0-17.0) 4.8
RBC (normal range 3.9-5.3) 3.48
Hct (normal range 34.0-40.0) 32
Plts (normal range 150-400) 292
ANC (normal range 1.5-8.5) 2.2
She is almost to normal in most of those which is great. I feel like she can have a somewhat normal life while they are good because the next 3 phases (2 months each) will drop her counts.
What a strong girl. Inspiring me every day!