Saturday, September 26, 2015

Running Update:
20.6 mi
7.6 mi
5.0 mi
Two weeks until the Hartford Marathon—yikes!  I hope to run 18 miles tomorrow, then will officially start to taper.

Jane Update:
Today was the 3rd annual Connecticut NF Walk in Putnam, CT.  What a beautiful day!  Thank you to Rhianna Curotto, the president of the CT chapter of the Children's Tumor Foundation, for making it happen.  It is wonderful to get together with so many other people who have NF themselves, or whose loved ones have NF.  Helen and Alec were very supportive big siblings, and Jane had a blast meeting new friends, re-meeting a few old ones, having her face painted, taking pictures in the photo booth, and leading the walk carrying the Children’s Tumor Foundation banner.  I met in person another NF Mom who I’ve known for some time only online—what a thrill!  Her three year old is taking the same experimental medication that Jane took when she was three.  It feels good to be able to talk to someone who is in such a similar position.

My NF Superhero

Holding the sign with another Fighter

Jane and I with one of the organizers, Sarah

With painted face

Jane with her NF Walk buddies

Jane's favorite activity at the event--the photobooth!

I overheard one little boy, who’d come to support a friend, asking his mother, “What’s a tumor?”  His mother said, “It’s an abnormal growth,” and I volunteered, “It’s a kind of bump.”  I quietly asked Jane, who was walking beside me, how she would feel about showing him her “bump”.  Without hesitation she presented her cheek to him, and said, “This is what a tumor is.”  He smiled and thanked her for explaining :)

NF Update:
Jane and I return to NIH for blood work and a check-up two weeks from now, right after the Hartford Marathon.  If you haven’t already donated this year to our fund-raising campaign to End NF, PLEASE DO SO!!  Here is the link:  

Wednesday, September 16, 2015

Blog Post 9/16/15:  the Harry Potter version.

Jane (and Family) Update:
The kids had an unusual four-day school break this week (even though school just started), so we took advantage of low fares and headed to Orlando, Florida to visit the Wizarding World of Harry Potter!  All three kids—and I, of course—are Harry Potter crazy, and we’d never been to Florida together, so it seemed like a perfect occasion to travel there.

The excitement started as we were getting off the plane in Florida and the PILOT RECOGNIZED JANE!! His daughter goes to Jane's school! He let us see the cockpit!

Once at Universal Orlando we had the time of our lives.  We explored the shops in Diagon Alley and Knockturn Alley, entered Gringott’s Bank, rode the Hogwarts Express, and visited Hogsmeade and Hogwarts castle.

Wands at the ready

Boarding the Hogwarts Express

Jane considering Beauxbatons over Hogwarts

Randomly bumped into my cousin, Anne, in Olivander's wand shop!

If you are not Harry Potter crazy, you may choose to skip this next story:

Several times we attended a small performance at Olivander’s in which one of the “Wand-Keepers” re-enacted the scene in the shop when Harry purchased his first wand, except a child from the audience was selected to participate in Harry’s place.  During one of the shows BOTH Alec and Jane were selected to have a wand “choose” them.

Alec went first.  The Wand-Keeper (a witch, by the way) gave him a wand—willow, with a dragon heartstring core—and asked him to levitate some wand boxes.  However, when Alec commanded, “Wingardium Leviosa!” a stack of boxes fell from the shelf!  Then Jane was given a wand to try—holly, with a dragon heartstring core—and she was asked to lighten the room.  When Jane shouted, “Lumos!” she started a lightning storm!  The Wand-Keeper then had an inspiration (“I wonder…”), and switched the wands.  Both wands shone and a magic wind blew, and we knew then they had been given the right wands...

The wand keeper went on to say that having been chosen by a holly wand indicated that Alec would make a good leader, and that a willow wand indicated that Jane would be valued for her friendship and cooperation.  Finally, she announced the fact that the dragon heartstring in each of their wands came from the same dragon meant that they would always be loyal to each other.

Of course, I ate it all up :)

Jane's wand misbehaving

NF Update:
We Braved the Escape from Gringott's ride one morning. The porter at the entrance appeared to have a classic trigeminal plexiform neurofibroma, so I stopped to talk to her. I told her my daughter has NF, and she said that she did, too! She said hello to Jane, and then she let us go to the front of the line :)

Running Update:
9.1 mi
2.7 mi
3.3 mi
3.2 mi
3.3 mi

Yes, I ran while we were in Florida.  I didn’t want to get behind by too many miles, since the Hartford Marathon is less than a month away.  Plus I had to burn off some of that Pumpkin Juice and Butterbeer!  We had downtime each afternoon after spending the morning in the park, so the kids cooled off in the pool while I ran.  I was afraid to run on the city streets (I found the presence of sidewalks inconsistent) and jogging isn’t allowed in the park, so I limited myself to a three mile loop around the hotel complex.  It was quite lovely, through gardens and along a man-made river, and with little, tiny lizards scattering from my path as I ran—I don’t see that in Connecticut.

Monday, September 7, 2015

Running Update:
7.6 mi
9.6 mi
11.7 mi
3.2 mi
12.4 mi
Done with the New Haven Road Race, my first race of the season, and it was a great one!  I ran my best 20K time since 2011!  I had lots of support today:  not only Todd and the kids, but my Mom, Aunt Anne, and sister Anne came out to cheer, too.  Thanks to them all, and thank you to the wonderful city of New Haven!

At the start with the birthday boy--Alec turned 11 today!

At the start

Spreading awareness :)

My cheer section!

At the finish

My support crew

The reason I run!