NIH Update:

Jane and I arrived at NIH late Thursday afternoon after an uneventful flight.  This was Jane’s check-up prior to starting her 27th cycle of chemotherapy.  Within half an hour of arriving we had already been to the pharmacy to pick up Jane’s next two cycles of medication, and then Jane was off doing science crafts at the Inn.  (She created purple play dough and built volcanoes out of lemons and baking soda—“We made ours erupt five times, Mom!”)

Our entertainment during the Family Dinner at the Inn that night was a troupe of Indian classical dancers (I believe it was the Bharathanatyam form).  So beautiful and mesmerizing.

Friday morning, our physical exam and blood work day, Jane woke up with a migraine.  Migraine in Jane’s case it means a bad headache, nausea, and dry heaving for several hours.  There aren’t any pediatric medications for migraine, so we have to stick with Tylenol (when she can get it down) and just sleeping it off.  She gets these episodes about once a month, which is much better than when she was younger when she got them almost once a week.  We don’t know if it is her medication or NF itself—both can cause migraine.

We managed to post-pone our appointment time until the afternoon, and Jane had rallied by then (the signal that she had turned the corner was she asked for some chocolate milk).  Exam and blood work went well—everything looked good!  We spent some time in the clinical center playroom and then on the Children’s Inn playground before retiring back to our room.

Got up before dawn on Saturday in order to make it into Washington in time for our tour of the White House.  I felt humbled thinking of the historic significance of our surroundings.  I found it quite moving.

Jane with a bust of Lincoln at the start of the tour

The East Room and the famous portrait of George Washington (rescued from the fire of 1814 by Dolley Madison)

The Green Room

The Blue Room.  (Jane and I wondered why isn't there a Purple Room?)

Jane admiring the Red Room

Channeling Lincoln in the State Dining Room

Under the gaze of JFK

As we toured I asked Jane if she knew the names of the people in various portraits.  Here I said it was President Bill Clinton, who, I told her, is the husband of Hillary Clinton.  Jane said, “Ooooh!  Was he a president, too?”

Jane at the North Portico

Jane earned her National Parks Service Junior Ranger badge at the White House Visitor’s Center :)

Jane honestly had the most fun just playing with the other kids she met at the Inn.  She spent the last bit of our morning chasing around the playground with two hearing-impaired sisters.  All Jane and the girls needed to communicate was smiles and laughter.

We’re back in Connecticut now, glad to be home, a bit tired from another whirlwind trip.  My mother shared a conversation she recently had with Jane about vacation time.  For context, Todd had just had a couple of days of free-time for snowboarding during a conference in British Columbia.  My mother told me, “I said it would be nice for Mommy to have a vacation also.  Jane said, ‘Oh, Mom has a vacation when she comes to Washington with me.’”  I do, Jane.  I really do <3

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As always, if you are inspired by Jane to help us End NF, please donate:  www.KRath4Jane.com