Smurfs

Annie's new pills (eltrombopag) arrived by overnight delivery Friday.  We gathered round with great fanfare as the bottle was opened for her first dose.  What would they look like?  Much to her delight they were smurf-blue.  We have silly names for every nasty thing she has to do so why not add smurfs to the menagerie?  Her only concern was about any side-effects she might have but so far so good.  She has reason to worry as bothersome hair growth has been one side-effect of her other medication.

We, again, play the role of guinea pig.  This is new stuff.  It only came into our life when, a few weeks ago, Tom's google alerts had an article about the drug being approved.  It sounds like she's the first user at her hospital.  The success rate in trials was 45%.  From what we've read, we're looking to see if anything happens in a couple weeks.  The doctor plans to start the dose low and reevaluate at the two-week mark.

Annie was already blue so we can't blame the drug for that.  Her hemoglobin transfusion from a week ago came out of her vein and the blood pumped into her tissues.  Thus her right arm is bluish-black from the blood collected under the skin.  She was asked to cantor the first school mass but she suggested she might scare off the new kindergarteners when raising her hand to invite the congregation to sing.  Other than that she seems to have made it through the first week of school with only one interruption for a blood draw.

Yesterday afternoon she was upset about chores and started to cry (normal kid stuff).  Usually crying starts her nose running and we begin a nose-bleed cycle.  She started dabbing her nose (she dabs most of the day and I find little tissue balls with blood spots all around the house) but ...  nothing red.  Then she did the forbidden, she blew her nose.  The poor kid has been prohibited from blowing her nose for months as it sets off bloody nose episodes that usually result in emergency room ordeals.  However this time, nothing.  I might as well have seen my kid score the winning touchdown.  How was this possible?  She blew her nose and no blood came out.

About an hour later she banged her mouth on her water bottle and cut her lip.  This is the kind of event that ends up ruining our weekends.  Blood will come out unabated, swallowing and stomachaches ensue and, again, off to the emergency room.  She sucked on some ice and by dinner, no more bleeding.  Not to be thwarted, a couple hours later after brushing her teeth, her gums started to bleed.  We were out walking and didn't know but when we returned to say good night her gums had a proper patch of dried blood at the spot.

We generally kind of dread night time as there is a good chance of being awoken by a screaming, bloody kid.  Nonetheless we head into each night hoping we'll be spared.  Usually we get one or two nights catch up.  Both Friday and Saturday nights have been quiet and no blood spots on the pillow in the morning.

We are grateful for any break we get and avoiding all he possible problems of the past 48 hours is a gift.  We're just following the mantra of so many, one that a friend recently invoked, "I am really into a day at a time."