The leopard look

Gratefully Annie made it through to Tuesday without any emergency visits to the hospital. However her body is more than ready for a transfusion.  Due to her low platelets she is sporting a leopard look these days from all her bruises and petechiae.  It's not just Annie that looks like a leopard, it's also her bed.  While bloody noses throughout the day get managed with pinching and tissues, at night they drift over sheets, blankets, pillows and skin.  Even after six years I still haven't completely desensitized to walking into my daughter's bedroom some mornings to face something akin to the scene of a massacre.  A leopard cub on leopard print sheets.

Today's blood counts are plt < 5,000, hmg 6.2, we'll get ANC and CSA later.  Thus we're settled in for a full day of platelet and hemoglobin transfusions.  Assuming no upsets my next report will be Monday.

Zip-a-Dee-Doo-Dah

Well she made it through the Girl Scout camping extravaganza which included seven runs on the zip line!  She is on the left in the video above.  Luckily no bloody noses and, while she had a few extra bruises, they were no worse than what she manages to get even when we keep her home. She did have to follow her own program for a few activities such as skip hikes and stay outside the mine excavation (one of her greatest threats is a fungal infection).  Today's blood counts also showed that enough of last Wednesday's transfusion is sticking around to hopefully avoid a transfusion this week.  Hmg 9.2, plt 11,000, ANC 760 and CSA 240.  Hopefully we can skip the second blood draw this week.  So, if all goes well, I'll post after next Tuesday's draw (as Monday is Memorial Day).

On my honor I will try ...

These days it's all about getting Annie to her Girl Scout trip.  Her health prevented her from attending her class trip to Joshua Tree but she was adamant that she was not going to miss the annual Girl Scout trip.  We planned tomorrow's dental cleaning just so that she'd have to have a platelet transfusion right before the trip as her high point of last year was riding the zip line.  This is no easy feat for a body with low platelets nor a nervous mother.  However these are the things Annie fights for, the things that get her through the rough spots and we try not to let fear or reasonable risk take that from her.  We thought the hemoglobin from last week would still be with her but no go.  Today's counts were hmg 7.6, plt 8,000, ANC 780 and CSA 192.  We got the medical team behind giving her a red cell transfusion in addition to the platelets so she had the best chance possible of successfully making it through her scouting trip.  Thus the short hospital visit we had planned turned in to a full day but now she's tanked.  Here's to hoping that my next posting will be after Monday's blood draw and it will include a picture of her on the zip line - a true miracle for a kid with aplastic anemia.

Bottoms up

Annie's appointment today was pretty uneventful and, for us, uneventful is good.  Still nothing to conclude about the treatment so far and her chemistry panel from Monday was fine except for her BUN was high and this means she needs to drink more water.

Making sure Annie drinks enough water has been a major part of our lives for the past six years.  Being on high doses of cyclosporine puts you at risk for renal failure and drinking a lot of water is the only protection.  Annie is part camel and would prefer not to drink all day so this adds to the fun of keeping her hydrated.  For a while I used to go to her school every lunch and snack to make sure she washed her hands, drank water and stayed out-of-trouble.  Luckily she has taken on some of this responsibility as she has gotten older however we still have to stay on her throughout the day.  At home we set a timer to go off every 15 minutes to remind her to have a swig of water.  At school it's hit or miss.  We try to set up systems, leave notes, and hassle/scare/bribe her in to compliance.  The alternative is unacceptable so I guess it's time to expand our efforts.  Next time you see Annie maybe ask to see her cool water bottle and if she'll show you how it works :)

Her CSA was 229 so we're off the hook for a blood test until next week.  However a side-effect of an oral rinse she has to use is stained teeth.  This has really begun to bug Annie as her friends notice the discoloration so its time for some stain removal.  Dental appointments have to be timed to coincide with a platelet transfusion and antibiotics.  Thus next Wednesday she'll have a blood test, antibiotic dose and platelet transfusion followed by a dental visit Thursday.

So until next Wednesday we'll hope for lots of hydration and keeping Annie healthy and out of trouble.

Playing chicken

We finally had to swerve this morning in this sicko game of chicken we play.  Annie's symptoms from low platelets (bleeding gums, bruising, petechiae...) became so untenable that we had to bring her to the hospital for a transfusion this morning.  Her plt are the lowest recorded value <5000, hmg 7, ANC 540 and we don't know the CSA yet.  Thus she is getting both platelet and hemoglobin transfusions today.  The refuel two weeks ago gave her a pretty good run, and us a bit of a breather, so hopefully that system will work again.  We have a meeting with her medical team Thursday and will report again then.  Thanks for the continued prayers!