Thursday, June 30, 2016

Day 8 (6/30):
  • GREAT NEWS - doctor says 99% confident there is no chromosomal translocation!!!  Another worry in the rear view mirror. 
  • Annie is obsessed with food.  I was in trouble this morning when I got back to the hospital because I didn't bring her a hash brown from McDonalds.  Mind you, she ate pancakes and three bowls of cheerios before I got there.  Steroids. . . . .
  • She still has that same peeked look about her, but tons of energy and in a good mood most of the day.  That was helped by the arrival of cousin Abigail.  Even better, Abigail arrived to see ANNIE, not Tich.  Aunt Lori says she's been worried sick about Annie and wanted to come and spend time with her.  They played in the play room for hours.  Another girl (we figured a sibling of another patient) was trying to horn in on their playtime, but Annie wasn't sharing Abigail with anyone!! 
  • It was ice cream day again - two scoops of chocolate along with toppings of some sort.
  • Which brings me back to blood sugar.  Endocrinologist was in today to talk about that.  Her numbers have been as high as 246 - normal is around 100.  They are now doing finger prick blood tests (Annie HATES it) before and after meals.  The doctor says we shouldn't control what she eats except no juice and no sugar candies - so ice cream is okay. .. . . . .  I wonedered for a split second whether she was the doctor or perhaps a pharmaceutical rep in sheep's clothes.  Anyway she didn't commit either way, but gave me the impression that we're going to be doing three a day insulin shots within the next couple of days.  Says the shots don't hurt. . . . .She's definitely a pharma rep. . . .
  • Insulin shots are the least of our worries. We can deal with that, despite Annie screaming her lungs out every time she sees the poor vitals techs, who now come with the blood sugar tester included in their kit.
  • Fern got a few minutes out today, which I hope energized her a bit, following 168 straight hours in the hospital.  She looked great when she got back - haircut, fresh air, etc. 
  • Drilled her chicken finger lunch, that she now eats with ketchup.  She's taking after her uncles Jay and Jared.  Sent me down to the kitchen to get more for her last finger.  Told me "I only like chicken fingers with ketchup now, dad".  Kept trying to get some of the candy that came in some of her gifts, but we were able to distract her thank goodness. 
  • When we walk down the hall, we now have a ritual where we hold hands and hum really loudly.  She waits for me to figure out the tune and then she mimics it.  She thinks it's great when people look at us.  Little weirdo.
  • So, after I left tonight, she made Fern send me texts as follows:
    • Annie wants to make sure you don't forget the hash brown tomorrow.
    • Annie wants to know what you said after you read the text.
    • She also wants cucumber slices with salt and pepper.
    • Now she wants you to bring her a ham sandwich.
  • If anyone out there has a skinny kid, I'll sell you some steroids on the side.  We can figure out a fair price. . . .
  • Another platelet transfusion today.  It probably won't be the last. 
  • ANNIE'S ARMY - we have a challenge for you:
    • ON WEDNESDAY, AUGUST 17, we're hosting a BLOOD DRIVE at the hospital in Annie's name.  It's gonna run from 7:30am - 7:00pm. 
    • A signup link will be coming shortly.  Please see if you can block off some of that day to come and donate. 
    • They're happy for any blood types - they're also looking for platelets from men, or women who've already given platelets at Morristown.  The stipulation is made because many women have a virus called CMV nullifies the benefit to most patients in need of platelets.  If you've donated at Morristown already, they know you're CMV negative.
    • Time slots are every 15 minutes and there is room for two donors at a time - so that adds up to almost 100 donations!!!  Please, if you're not afraid of giving blood, consider donating on that day in Annie's honor:)
    • Stay tuned for the signup link, as well as a hotline to call with any eligibility questions you may have.
  • A final Annie's Army note for the evening.  The last remaining members of the YMCA Early Childhood Learning Center came to visit today.  Just kidding, but numbers 5 and 6, Miss Kelly and Miss Dawn (who retired today - congratulations!!!!) came to see Annie.  Of course they came armed with pictures and gifts from them and other thoughtful staff members.  What a super place.
  • Please everyone keep Annie in mind tomorrow - tough day:
    • Spinal Tap (they now call it a Lumbar Puncture)
    • Change of pick line.
    • Big chemo day.
    • Possible start on insulin.
  • Sorry no pictures today.

3 comments:

  1. I'm so happy Annie is doing well! I'm keeping her in my thoughts and I wish you and Annie luck for tomorrow! If there are any special foods Annie wants, let me know and I will bring them next time Miss Katie and I visit!

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  2. We are saying prayers for Annie today with all she has on her schedule! Keep the ice cream coming! xoxo
    The Wasilewski Family

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  3. Great news today! Thinking and praying for you every single day. Tomorrow will be a struggle I'm sure but she seems like one tough cookie! I am partial to Burger King hash browns though ;) -John DiPace

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