Whatever you say doctor...

We didn't make it to this week's appointment unscathed.  Last Thursday night we had a replay of what I described in the last entry.  Thus another night of transfusions in the ER.  Routine appointment Monday of this week and then an appointment with an ENT yesterday.

Turned out to be a long wait.  After an hour and a half we still hadn't seen the doctor (in the end we never did see the doctor we were scheduled to see) and then a different doctor came in - a young, handsome, male doctor sporting a Justin Bieber hair cut.  Well let's just say a spoonful of sugar does still help the medicine go down because Miss Annie was quite the attentive patient from that point on.  A nose spray that evoked blood curling screams from Annie when done in the ER now came with a scream that instead sounded like her singing a note in a song.  She allowed him to do that spray three different times.  God help the woman in the ER who did it, she would have been torn to shreds had she tried it again.

Nothing troublesome was found in her nose but we did learn some new hygiene things to try and keep her blood vessels from cracking.  Annie has been following the doctor's instructions to a T.  We're always happy to be hopeful that things will get better so that's what we'll do.  Next appointment a week from tomorrow.

Scary Movie

Warning, this is kind of a gross entry.  I'd say our lives can get to about 80% normal and we can even forget for a while what's coming but then we get a shocker of a reminder.  The most recent came last Thursday night.  I went to bed early only to be awoken by Tom at 12:30 informing me that he'd been up with Annie for three hours dealing with a bloody nose.  No problem, I was rested and could take over.  However an hour later (here's the gross part) Annie proceeded to cough up, in one big batch, over two cups of clotted blood.  Uh huh gross - like the stuff you figure must be fake in the movies.  Apparently she'd been swallowing blood for those four hours and her stomach was none too thrilled.  So it was off to the ER for Tom and Annie where they remained until returning home at 6:30 in the morning after a platelet and blood transfusion.  This was the second emergency hospital visit for this kind of episode and what's really unfortunate is that her blood counts did not require a transfusion otherwise.

At Monday's appointment we discussed this fact with her doctor who suggested we meet with an ENT to see if there was anything else we could do (we already use nose spray, tons of liquids, humidifiers, vaseline...).  That appointment is coming up on the 29th.  We also learned there is a new donor who is an 11/12 match.  Again we'll never get a perfect match but this is better in a few ways.  We are still waiting to hear if we are a go for May.  In the meantime, despite the drama, Annie popped back to her old self and has continued on with her activities.

In calling up this blog to update by mistake I typed in the address of an old blog that I had forgotten.  It chronicles her relapse and our Odyssey from 2007-2009.  I'm not going to read it, living it was enough, but for the record it is http://annietupdates.blogspot.com.

Next appointment still getting scheduled but probably a week from Monday.

Update

We didn't quite make it to today's appointment but, again, we chose to look at the good things this made possible.  First, the back story.  Upon picking Annie up from the last day of school before vacation she tripped over a tree root and landed on various body parts, including her face.  What a way to start what we were hoping was a few weeks of R and R.  While we didn't have to take her to the hospital, we did get the pleasure of seeing her with half a face of black and blues for the holidays.  Additionally this meant her blood counts would drop faster as her body lost blood to the bruising.  In spite of this inauspicious start things stayed pretty calm until last Sunday afternoon.  It gets pretty dry this time of year and this ups the odds of Annie getting a bloody nose.  Lately we've had the bad luck of her veins cracking so high up in her nose that pinching doesn't work.  She got one of these Sunday and things escalated to the point where we had to take her to the ER.  Luckily her new hospital was not crowded and she was in and out with both a platelet and hemoglobin transfusion in record-breaking time.  This also meant we were able to put off today's appointment until 1/13.  It all feels like we're on borrowed time as the original plan was to begin the transplant process yesterday.  I'm really glad we were able to put it off a bit longer as this would have been our most depressing Christmas ever knowing what was awaiting us the day after New Year's.  Next update hopefully after the 1/13 appointment.