NIH update addendum:

In an unprecedented turn of events, we’re back home in Connecticut this evening!

Our whirlwind day:

We started the day at the NIH hospital at 6:45am when Jane had her IV placed and blood drawn.  She went in for her MRI at about 8:15am and had the easiest induction of anesthesia that she’s ever had—just closed her eyes and went to sleep.  She was back in the recovery room by 10:00am and all seemed smooth sailing. 

However, half an hour later her nurse came in to the room and started asking all sorts of questions:  Had Jane had a fever in the past few days?  A sore throat?  All questions we had answered “no” to several times since arriving at NIH.  I wondered aloud why she was asking us again, and that’s when I learned Jane’s white blood cell count—a measure of infection fighting—was 22, more than double the normal value.  Jane had had the sniffles for a few days beforehand, but otherwise all her exams yesterday were normal.  Despite this, an elevated white blood count qualified Jane as an infection risk, and we were told we could no longer stay at the Children’s Inn, and that we may be sent home! 

By 11am we were meeting with our clinical team.  The good news was that the preliminary reading of Jane’s MRI seems to show that her tumor is smaller again, though we won’t have the final results until next week.  (I want to be excited, but I’ve been misled by preliminary results enough in the past that I am reserving judgment until we have the final.)  The bad news was that the MRI scan showed that Jane had an active sinus infection!  She was to be started on oral antibiotics, but it was confirmed that we couldn’t stay at NIH for fear of affecting other patients...

…which is why an hour and a half later we were on the shuttle to BWI airport!  Poor Jane!  She had just woken up from anesthesia, had a sinus infection brewing, and was made to endure shuttle bus, airplane, and car ride.  She was in rough shape by the time we finally arrived home—there’s a reason you’re not supposed to travel for 24 hours after anesthesia!!

Now that Jane is safely and comfortably sound asleep in her own bed, I’m glad we’re home early.  But I don’t ever want to do that again!  I have always been impressed by Jane's tolerance for discomfort, but today she truly amazed me with her strength and endurance <3