9/11/18

We made it to NIH on Sunday after a delayed and turbulent flight.  It seems the DC area is getting some of the wind and rain ahead of Hurricane Florence.  We’re glad we’ll be leaving before it arrives!

We were lucky to get a room at the Children’s Inn this visit because a large part of the building is shut down!  It seems they found some structural damage to the roof in the main part of the Inn a couple of weeks ago, so they can’t allow people to stay in that section until it is repaired.  They said it may take several months until they are up and running normally again.  The staff at the Children’s Inn works very hard and always bends over backwards to take care of families visiting NIH, but even more so now that they are in a construction zone.  If you’d like to read more about the emergency repairs at Children’s Inn, or make a donation to the Inn, look here: https://childrensinn.org/emergency/

Our poor Children's Inn at NIH!

Nevertheless, we were well fed! Homemade tacos and burritos Sunday night and an indoor picnic with hot dogs and pulled pork sandwiches on Monday.   I heard a woman in line for dinner say, “I could gain ten pounds here!” I felt the same way. It’s so nice to have someone cook dinner for you when you’re preoccupied with appointments and tests and medicines.

We had a full day of testing on Monday, starting at 7am.  

Jane did very well during her MRI, holding very still.  I think she may have even fallen asleep briefly during it!  After the MRI we had a quick coffee/chocolate milk break before continuing with our day :)

We started the afternoon at Photography (to document the outward appearance of Jane’s tumor) and managed to snap this picture.  (I won’t share the dozen or so less-than-cooperative shots it took to get this one good one!)

Despite growing another 4cm in the past 6 months,
Jane still relies on her trusty Puppy to get her through the visit.

We don’t have official volumes yet, but visually Dr Widemann (our pediatric neuro-oncologist) and Dombi (her radiologist) are calling Jane’s tumor stable, including the little superficial nodule on the right lower side of her face.  The plan at our last visit in March 2018 had been to increase Jane’s dose of study drug gradually to a total of 30mg twice daily in an effort to keep up with her overall growth, and for now we will be keeping to that plan.  Jane’s target dose of selumetinib is 39mg/m2/day (the dose is based on body surface area, or BSA, a combination of height and weight measured in square meters), so taking 30mg twice a day would come out to be 36mg/m2/day for Jane—close enough to target for now.

We arrived at Reagan National Airport for our flight home 2 hours early today.  I’m inexplicably weepy this morning (well, maybe not inexplicably since I’m tired and we’ve had a stressful couple of days), but it’s not helped now by being in an airport on Tuesday, September 11th at 8:46am.  There are memorial services occurring all over the airport—color guards and national anthems and moments of silence.  It’s hard to believe it’s been 17 years.