Friday, May 23, 2014

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).

Sunday, May 18, 2014

Running Update:
5/7  7.6 miles in 1:11:04
5/9  5.1 miles in 44:13
5/11  5.0 miles in 47:45
5/14  7.6 miles in 1:09:35
5/16  5.1 miles in 44:44
5/18  7.5 miles in 1:08:32
Perfect running weather lately!

Jane Update:
Getting ready to head back to NIH tomorrow for our latest check-up, but before I write about that I’ll share some fun items.

Soccer season is in full swing.  Jane’s team is the Blue Lightning Bolts!  Here's Jane in action.

Jane’s class put on a performance of Traditional Tales this week.  Jane played the Middle Billy Goat in “Three Billy Goats Gruff” and played the Cow in “Jack and the Beanstalk”.  So proud :)

Finally, all year the students of Jane’s elementary school completed monthly reading logs with hopes of winning one of three prizes offered to the classes that read the most.  We learned this week that Jane’s class won the First Place Prize—a party at Bounce U!

NF Update:
What to pack to keep a 7 year old entertained at the hospital when our itinerary looks like this?

Tue. 5/20th
8:15am – Labs & Vital Signs (3 Hts & 3 Wts), Pediatric Clinic, 1st Floor
9am – Physical exam, Pediatric Clinic, 1st Floor
10am – Eye Clinic appointment, 10th Floor, Outpatient Clinic
(The eye exam is the worst, as it seems interminable.  It includes visual acuity testing, a slit lamp exam, a dilated fundus exam, ocular coherence tomography (a retinal exam) and retinal photographs.)
12:45pm – EKG, 1st Floor
1pm – Echocardiogram, 5th Floor
1:30pm – Dermatology appointment, 13th Floor Outpatient Clinic

Wed. 5/21st
9am – Allergy and Immunology appointment, Pediatric Clinic, 1st Floor
11am – Family Meeting, Pediatric Clinic, 1st Floor
Well, this is what I pack, at least: 
colored pencils,
coloring pages,
blank paper,
two new coloring books,
two new sticker books,
Ivy and Bean books 6, 7, 8, and 9,
the complete set of Frog and Toad books,
paper dolls,
new $1 sunglasses (for after her eye exam),
snacks, snacks, and more snacks,
an old iPhone for watching Jake and the Neverland Pirates videos (natch).

I plan to dole the new items out one at a time, as needed.  Will let you know if it works!

Sunday, May 4, 2014

Running Update (the good news):
5/2  5.0 miles in 43:52
5/4  7.5 miles in 1:11:43
(See—I can run fast(er).)
Felt good to get back to running after recuperating from Boston.  One rule of thumb for recovering after a race is to rest one day for every two miles you raced.  I made it ten days but couldn’t resist getting out there on the few sunny, warm, breezy, spring days we’ve had lately.  I’m putting Boston behind me, and to that end I bought a new pair of running shoes.  As Runner’s World editor Mark Remy observes about the smell of new running shoes:  “Smells like…potential.  And formaldehyde or something.  But mostly potential.”
It may be appropriate to add a few new songs to my running playlist:

Bleachers “I Wanna Get Better”
Key lyrics:  “I wanna get better.”

Birds of Tokyo “Lanterns”
Key lyrics:  “There is more I could be.”

Jane Update (the bad news):
Jane has been off the study medication for over ten days due to a drug reaction. 

A couple of days after the Boston Marathon Jane developed a severe rash—she was covered head to toe in spots, was scratching her skin off, and couldn't sleep for two nights.  All of our doctors (at home and at NIH) were fairly confident it was from the AZD6244.  NIH gave us a few suggestions (Benadryl, hydrocortisone cream), but nothing worked.  Ultimately, they told us to temporarily stop the AZD6244.  Our awesome hometown pediatrician gave us a prescription-strength antihistamine and strong steroid cream to soothe the itching, allowing us to avoid oral steroids. 

Jane's rash mostly gone now—she’s just got all the scratches left to heal.  But now we’re left to ponder what to do about the study medication.  Dr. Widemann and our other doctors at NIH have been conferencing and brainstorming about how to proceed.  They have not had any other patients with this reaction.  We don’t want to give up on this drug—it has so much potential and we have already invested so much in this trial.  We are allowed a reduction in medication dose and still remain in the study, but if we make too much of a reduction Jane is less likely to benefit from the drug.  It seems like we will reduce the dose by 30% and give Jane an antihistamine to take with it.  The question now is whether we will start that regimen now, or wait until we return to NIH on May 19th.

NF Update:
May is NF Awareness Month!  I will be posting facts about NF on Facebook daily to make you all more “aware” :)
For those of you who haven’t succumbed to Facebook, here is a link to Fact &Statistics about NF on the Children’s Tumor Foundation website.