Days 10, 11 & 12

Not much to report, other than Addie's ANC (Absolute Neutrophil Count) went up to 20 yesterday (Day 11) which was really nice to see - its been holding steady at 0.  We finally got her to take a shower tonight - she has been terribly afraid and unwilling to do so.  I'm not sure what scared her about it, she takes them at home and even prefers them over baths.  I just think she isn't use to the shower here and given all that she has been through she just isn't comfortable.  It was a bit of a challenge because they instructed us to do our best to keep her dressing dry (they covered it with plastic and tape), so that was a bit of a challenge.

Taking her steroids orally is getting better.  Thank you for all of your suggestions, I can assure you that we will be trying every.single.one, LOL.  We tried it in Applesauce last night and so far that seems like its been the best for her.  She was excited that she could barely taste it.  Next up - Strawberry Jam, Whipped Cream, Cool Whip and hopefully I can get her to be a fan of chocolate pudding.  Once we are home I'm definitely going to try and dilute it as so many of you have suggested.  It seems Grape is the best flavor to mask the nasty powdery, pill taste.  Really excited to try White Grape Juice, or hell even Grape soda.....whatever it takes for her to get the medication down and doing its job.

I had a little talk with Addie about "The Beast" in side of her.  We really haven't addressed what she has or called it by its official horrible name, but we haven't shielded any of our conversations with the nurses or doctors either.  She is too young to understand what Leukemia is, so she just thinks she is in the hospital because she is sick and they have her here to make her better.  I explained to her that the scary Beast (from Beauty and the Beast) is inside her making her sick, and we need to take her medicine to kill him.  That was the best analogy I could come up with, but she totally understands, so mission accomplished!  I'm hoping spinning in this way will help when she pushes us back about taking her medicine.  Once the Beast is dead, just like Belle gets her Prince in the end, Addie will get to be healthy again!

Day 12 - (8/29) - Addie's ANC dropped back down to 4 today which is quite a bummer, since it starts us all over again in the countdown to go home.  After speaking with the doctors, while they expect it to fluctuate up and down, they need to see her ANC at at least 200 due to the infection, and they also need her ANC trending upwards for 2 consecutive days before we are cleared to leave.  Her doctor said he is still hopeful that she can be discharged on Friday after she receives her weekly dose of Chemo.  Prayers to bring up her ANC would be greatly appreciated!  For some good news, we received the results of her MRD (blood) test that was done last week during her Spinal Tap.   It showed that she only has 0.06% of Leukemia cells left in her bone marrow.  The goal is obviously to be 0 (which they will check for certain on Day 29), but her doctors were very happy with this number and have high hopes that we will see them all gone by then.  At least we know the medicine is doing its job! God is good!

In other news, Louie started 8th grade on Monday (cue the tears) and I don't know if its just that we haven't gotten to see him all that much lately, or just knowing that he is in his last year of Middle School, but he just seems so big and grown up to Dan and I 😩.  Bentley is doing great, and somehow I've been pumping more milk than I ever have before, which is at least one positive to when I can't be with him.  Daddy already has him ready for Football season!

With Love,