Gimmicks

Rarely a dull week around here.  When Annie had her emergency visit to the hospital last week for a bloody nose an ENT doctor was called in to help.  He made the suggestion of using tongue depressors bound together to help with nose pinching.  We thought this sounded great.  I modeled the contraption shown above for a steady stream of nurses and doctors who had never seen this before.  It seemed we'd found something that could be of help in the future.  And then Monday night rolled around.  Just as we were sitting down for dinner Annie sprung a bloody nose.  On went the sticks.  Next thing I know Tom's grabbing a bowl into which she started spitting blood.  This bloody nose seemed to be dripping down her throat and into her mouth.  It really looked horrifying and we debated between 911 and rushing to the hospital.  Hospital won out so off went Tom and Annie.  Again after hours of pinching and waiting they finally got a platelet transfusion and came home after midnight.  There was a desire to also give her hemoglobin but that required admitting her to the hospital and they'd had enough for one night.  I now wonder, were the sticks the problem?  We'll be going back to pinching and then maybe segue to the sticks to experiment next time.

We still had to go back Wednesday for the hemoglobin transfusion.  After the hours it took to wait, register, wait, triage, wait, get poked, wait ... it was learned that her hemoglobin had gone up and she wouldn't need a transfusion. Yeah. Again we witnessed the pattern of curbing her bleeding with platelets resulting in keeping her hemoglobin longer.  Catch 22 - they don't want to transfuse platelets but that means we need to transfuse hemoglobin more often.  Nonetheless we have a break, at least in terms of the schedule, until next Wednesday.

Meanwhile we're making appointments to meet with transplant teams and trying to get her a prescription to a medicine called Eltrombopag.  Tom read about it clearing clinical trials. It's for in people who have trouble making platelets.  The doctor said Annie could try it but we're on hold waiting for them to figure out the proper dosing...wait...wait...wait.

Bad to the bone...marrow

No surprises today, the doctors recommended we begin the process of an unrelated bone marrow transplant for Annie as the ATG seems to have not worked.  She knew this was coming and thus was calm.  Our first job is to select a hospital and transplant team then begin the donor search.  Their hope is to transplant within three months.

There is nothing pleasant about a bone marrow transplant, you wouldn't wish it on your worst enemy.  However we have learned that being miserable about it just makes it worse.  Thus we will continue to squeeze whatever good things we can into the cracks between realities and spin, spin, spin a tale for Annie's benefit.  She has always been happy to wring whatever fun she can out of it all as evidenced by her rendition of "Bad to the Bone."  This is the last of her three-verse parody.

Getting heavy

Thursday's blood counts were much of the same, platelets <5000, hmg 8.2, ANC 1300.  We're in a holding pattern where she seems to need a red cell transfusion every two weeks and, while we've staved off the platelet transfusions, the black and blues and minor bleeds are building up.  The other thing that's building up is the evidence that the ATG treatment did not work.  Friday is the day we meet with her doctor and, probably, discuss the path to another transplant.

Before I could post this entry Annie had a "bleeding event" in the form of a four-hour nose bleed.  Thus an unexpected trip to the hospital for platelets and hemoglobin today.

Beads of Courage

While we try to focus on anything but Annie's medical condition when possible, sometimes it denies her the credit she deserves for all she weathers.  Luckily the organization "Beads of Courage" helps acknowledge the special "accomplishments" of kids with serious illnesses.  Like an olympic medal, it provides recognition for all the hours, days and years of pain and sacrifice endured to master mind and body in pursuit of a challenging goal.  The three strands above only document her experiences for two years.  She has four additional years of up to five beads a day for taking medicine, 1-3 beads a week for having blood draw appointments, 1-9 beads an appointment for pokes, another five beads for hospital stays, another four for bone-marrow biopsies, over twenty for transfusions and another six for other medical procedures like MRIs.  

It's a fine line between encouraging Annie to define herself beyond her illness and forgetting to honor all she has overcome.  Thus we'll recommit to stringing Annie's beads and celebrating all that she accomplishes not just the conventional things.  So for today beads for ... 13 pills (so far), one hospital visit, five pokes and one hemoglobin transfusion (hmg 7, plt 6,000).  Next scheduled blood draw in a week.