Smurfing USA

Although our waves aren't nearly like those people in the East are struggling with, we had a bit of a ride today.

After another week without emergency bleeding events we went to the hospital today for Annie's blood test.  Her hemoglobin was 7.9 - just on the edge of transfusing, so we held off.  However her platelets were reported at 68,000!  I had to ask the nurse to repeat this to me three times.  Annie hasn't made that many platelets since getting aplastic anemia (except after her first transplant).  I had to conclude that the "smurfs" were doing their thing.

However, ten minutes later, we were told the lab reported a change and they counted 15,000 - 45,000 with some "large platelets."  This was all very unusual to me and I've read over 300 CBCs.  Apparently this was also rare for the nurse since she didn't know how to explain it.  To be fair, Annie is the first one on Eltrombopag at either of the hospitals we've been to so no one really knows what to expect.

After doing some research, it seems "large platelets" are immature ones that the bone marrow releases early when the body has extremely low levels of platelets.  Why this makes counting so imprecise I don't know.  But we're just grateful for her body to produce anything - especially when it keeps her from needing a platelet transfusion and keeps us from being awaken in the middle of the night.

We received a status report on the donor search.  Luckily the hospital was able to get a grant to conduct a search for a match.  We are told not to expect to hear anything for a month.  After being explained the process I must say I was filled with amazing pride for humanity.  To think there is this web of people working in concert to try to save the life of one little girl is amazing.  That there are people all over the globe making themselves available to save another person - that they don't know - really makes it feel like a small, connected world.

Next appointment scheduled for 11/8 - as always no news is good news.

Super-sib

This picture is a month old but, since things have been quiet (by our standards), it seemed a good time to praise Annie's unsung hero - her sister Katherine.   When we started this journey, almost seven years ago, we were given good advice about the impact a child's illness has on a sibling.  Katherine was only seven-years-old but all along she has been a trooper. When Annie's treatment required her to wear a hat to school every day, Katherine did too. When we adopted a vegan diet to support Annie's health needs, Katherine did too.  When we had to leave our house and belongings, Katherine rolled with the changes. She spent vacations with other families and relatives, she moved to her grandparents' house when she got sick, and she went home from school with a different family every day.  She has spent countless hours entertaining her sister in hospital rooms and at blood draws.  

Far from resenting Annie, Katherine has loved her and tried to protect her like no one else.  When she'd hear an ambulance go by school, she'd excuse herself from class to make sure it wasn't for Annie.  She has done the lion's share of kid chores and had more than her fair share of "the short end of the stick" but she has also enjoyed many blessings and opportunities.  

There is an organization called "Super Sibs" whose mission is to give the siblings some of the spotlight usually focused on the sick kid. Over the years they have sent her a steady supply of notes, poems, trophies, medals and kudos. I'm often surprised just how much these gestures have meant to Katherine. Certainly the close relationship between the girls is another silver-lining of this journey.

Annie had transfusions for platelets and red cells yesterday-over nine hours at the hospital. The donor search has not yet begun as we're still in the insurance ... phase, but things seem to be moving along.  In the mean time, every two weeks, we continue to raise the dose of her "smurfs" (eltrombopag) and lower the dose of her "bunnies" (cyclosporine).  Will report after our next doctor appointment on the 29th if nothing else comes up.

The Honeymoon Phase

This was the calmest week we've had in months.  The only time we really had to deal with medical issues was Annie's hospital appointment Thursday and she found that to be pretty, well, fun-ish.  Since it was mid-day, the hospital was kind of quiet.  The sun was shining off the fountain out front and, again, Annie found the whole thing lovely.  Going to the relatively empty transfusion area she was greeted by a flock of nurses who remembered her from five years ago.  All that fawning feels good.  They gave her a present from the toy room.

Then it was time for the poke and Annie dreamily said, "Wow, I didn't feel a thing." (Since it was the arm that was blue for five weeks from the blood infiltration, we had left it alone so I'm guessing her veins had healed nicely.)  They wrapped her arm/IV in a tape color she hadn't seen before. "The blue matches your eyes," said nurse Ginger.  Then, while waiting for the blood test results, we walked to the Farmer's Market (!) they have on the hospital grounds.  Annie selected some peaches and we settled in for lunch on a walkway with beautiful views of the mountains.

When I called for the test results we learned she didn't need a hemoglobin transfusion and that the doctor would see us early (huh, we used to wait upwards of four hour...not kidding).  After the uneventful check-up it was off for the platelet transfusion (remember this hospital has a set value where they transfuse versus waiting for a bleeding event).  They combined the platelets with IV fluid so the rate was 200 versus 80 and the transfusion was done in only 20 minutes.

Next appointment in two weeks (no news is good news until then).  While I know this is the calm before the storm, we're soaking up every drop of it!