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!

Still floating

We've had relative calm since last Tuesday, phew!  Her CSA level was just out of range so they agreed to let us skip Thursday's blood draw so we could give her veins a break.  This is nice not only from a logistics standpoint but also because it relieves us from the unpleasant experience of waiting for the nurse's call giving us her blood counts.  Also there doesn't seem to be much enthusiasm about inserting a line at this point so giving her veins a break was pretty important.  Today's blood draw showed she is still floating down from last week's big refuel but doesn't need another transfusion yet.  Her numbers were hmg 9, plt 9,000, ANC 360 and CSA 332.  We were given the option of waiting until next Monday to test again and we gladly accepted.  Thus we'll hope her body makes it until then, hope, hope, hope....

Grrrr

Although we got all the transfusions in yesterday the level of her cyclosporine was too high (414 and we're trying for between 200-300) so back for a blood draw today and probably Thursday!  Luckily the phlebotomist found a vein on the first poke this morning.  Hopefully our luck and those veins will hold out.  Still researching the internal port options as there are notable disadvantages to each option.

Fill 'r Up

Although Annie kept it together for the weekend she was really running on empty.  Today's hemoglobin was the lowest we've seen (although that's just because they transfused before this point at the other hospital).  The stats are hmg 4.6, plt 7,000 and ANC 240.  So today she's having a major refueling - a bag and a half of red and, hopefully, a bag of platelets.  I say hopefully because she is having trouble tolerating the transfusions and they have to slow the rate to the lowest speed.  This ward closes at 6 p.m. so if she can't get it all in she has to come back tomorrow.  All these pokes have become a problem and she's running out of viable veins.  So again we're looking into a more permanent line.  It's hard to know which type, if at all, since we are still midstream in this procedure and different types are better for different situations.  We'll be gathering information and weighing options over the next few days.  In the meantime we hope to increase her transfusion rate and get her finished today.  We're also hoping to wait until next Monday for labs since her medication levels seem to be in range and, with today's refueling, she should make it a week.  So I'll post if we learn anything new or make any important decisions otherwise no news means she fueled up today and is keeping up her routine until next Monday.

Flip flop

So normally it's us trying to convince the medical team Annie should get a transfusion but today that was flip-flopped.  We got a call in the morning saying Annie should come in for a transfusion as her hemoglobin was down to 5.4 (her platelets were 34,000 and ANC 370).  We couldn't believe it was so low as she had made it through three days of school without complaint and was like her old self last night dancing around the house and singing - something we haven't seen in a couple months.  We were certain her hemoglobin had gone up; why we thought we should feel certain about anything considering our track record is beyond me.  Any how we explained our logic to the nurse and we all agreed to make a transfusion appointment for Monday and have her blood draw at the hospital so she has only one poke.  Thus we'll keep a close eye on her this weekend and hopefully not need to make any hospital visits until then.

Iron Overload

Couldn't pass up the opportunity to add a little more eye-candy to this blog but Annie does have "iron overload." One side-effect of multiple hemoglobin transfusions is an over-accumulation of iron in the liver.  So last night Annie had a previously scheduled MRI appointment.  Thus she spent 50 minutes in the noisy "doughnut" watching the movie Tinkerbell.  A pretty ho-hum hospital visit by our standards, thank goodness.  Her blood draw this morning was also uneventful however they won't have the lab results ready until some time tomorrow.  Thus all quiet on the western front for the moment.