NIH Update:

We arrived at the National Institutes of Health on Monday night after a smooth flight from Hartford and a lengthy cab drive from Bethesda-Washington airport.  Perhaps I am not selective enough in my choice of cabs, but most of the cabbies we’ve met in the area don’t seem to be familiar with NIH.  For one thing, they never believe me when I tell them they will have to go through security to get onto the NIH campus.  Really, sir, I mean it.  Stop-the-Car, Turn-Off-Ignition, Exit-the-Vehicle, Give-Your-ID-to-Security-Desk-While-Car-Is-Wiped-Down-for-Illegal-Substances kind of security.  They get flustered and stop being chatty and friendly with us after the security stop.

We lucked out and got one of the renovated rooms at the Children’s Inn (which means we didn’t have to share a bathroom!  Yay!)  Unfortunately, the big indoor playroom and the outdoor playground were still off-limits because of construction.  Hopefully will be finished by the time we return in July.  (If we return—more on that later.)

Jane eating a breakfast of Cocoa Krispies at the Inn

Our first day at the NIH Clinical Center went amazingly well from a logistical standpoint.  Most of the doctors were running on time, and we managed to squeeze seven appointments into a 7-1/2 hour day.  We spent just under two hours at the Eye Clinic (a record!), though the Dermatology appointment slowed us down.  We had been waiting (undressed) for about 20 minutes in a Dermatology exam room when the medical assistant poked her head in and said apologetically, "We're running a bit behind."  I know from my own office that when the staff admits you're running behind, that means you're really running behind.  Darn doctors!

Waiting patiently at Dermatology

Of all the items I packed to keep Jane entertained, I must say, this particular activity book of a doll house with sticker furnishings was the most effective.  Jane didn’t notice the wait; she was so engrossed in it.  Over the course of our day we also read three books from the Ivy and Bean chapter-book series (Doomed to Dance, What’s the Big Idea, and No News is Good News—all wonderful, but the latter is highly recommended by Jane and myself) and various stories from Frog and Toad (which we punctuated with songs from the Frog and Toad musical).

We received disappointing news from Dermatology.  They felt Jane’s rash was almost certainly a reaction to the AZD6244, what is called a delayed-type hypersensitivity reaction.  While this is not the type of allergy that could lead to anaphylaxis (like in a severe peanut allergy), it is also not the type of allergic reaction to which one can be desensitized (such as with allergy shots).  Dermatology did not feel that pre-medicating with antihistamines or reducing the dose of AZD6244 would help reduce the chance of the rash returning.  Their recommendation was to avoid the medication if possible.

While I was deflated after our day, Jane was still skipping as we left the hospital.  Despite my low mood, we took up an offer from a college friend to meet for dinner with him and his 4 year old daughter.  I am so glad we did!  Jane experienced the Metro, met a new friend, I got to catch up with and old one, and we all had a fine meal at the new City Burger :)

At the Bethesda Metro station, Jane threw a penny in this fountain and told me, “I wished for a dozen chocolate ice creams!  A dozen, meaning twelve.”

Enjoying the ride

The long escalator at the Medical Center Metro station

The second day at the Clinical Center was less onerous:  a consultation with Allergy and Immunology, who agreed with Dermatology’s assessments, and a meeting with Dr. Widemann and her team to decide how to proceed.  I am thankful that Dr. Widemann doesn’t want to just give up on AZD6244 completely.  Despite Dermatology’s assertions that reducing the dose wouldn’t help, our team thought restarting at a lower dose was a safer choice.  After all examinations and consultations, it still ends up that all we can do is restart the AZD6244 and see what happens.  If the rash comes back we stop it—then we're back at Square One :(

So—Jane took her first two (reduced) doses of AZD6244 today.  Now we watch and wait (and hope).