Sunday, October 2, 2016

Running Update:

7.6 mi

5.0 mi

13.2 mi

3.3 mi

5.0 mi

7.6 mi
The Hartford Marathon is LESS THAN A WEEK AWAY!  I think I’m ready.  Hoping to beat last year’s time :)  You can still donate here:

NF Update:
Last weekend was the 4th Annual Connecticut NF Walk in Putnam, CT.  We had a gorgeous fall day and, as usual, had a wonderful time.  Todd was abroad, but we were lucky enough to have our dear friend, Glennda, accompany us!  Besides the walk itself, we had fun with face painting, making balloon animals, building scarecrows, and enjoyed the cookout, raffle, and (especially!) the photo booth.  We reconnected with old friends from the NF community and made new ones. 

Jane posing next to her own photo on the NF Heroes table

More NF Heroes

The kids with Glennda before the start of the walk

Jane helping to lead the parade!

Alec with his balloon hat :)

Jane posing with her new friend, Arianna

Our (somewhat squashed) scarecrow

Jane, Arianna, and Emma at the photo booth <3

Jane with the angel pendant she won in the raffle.  (She was so pleased!)

Helen, Glennda, and Alec

A few samples of the many shots of Jane and her friends in the photo booth

Jane Update:
At the walk Jane met two other little girls her age from Connecticut who have NF.  She was beside herself (and so, therefore, was I).

One of the little girls we met was Emma, who is 11 and who lives just a few towns away from us.  Emma has been on chemotherapy for the last 14 months due to an optic glioma, and just had surgery to biopsy an astrocytoma, a NF-related brain tumor.  She had about a 5-inch fresh vertical scar at the back of her head.  It was impressive.  The amazing thing was that Emma was attending the NF Walk only 5 days after her operation!  She hadn’t even been back to school yet!  In talking to Emma's mother I learned that they hadn't discovered Emma's NF until she was 8 years old, when she developed leg problems.  You can read more about Emma on her Facebook page: Fight Like Emma, a journey with neurofibromatosis.

In the car on the way home from the walk Jane started to ask, "If I didn't find out..." but she was interrupted by Alec, and by the time we got back to her question she said, "Never mind."

Later that evening I asked her what her question was going to be.

She said, "Um, I don't know.  Never mind."  
But I persisted, "Were you wondering if we hadn't found out about your NF until you were 8 like Emma, would you have had to have surgery?"
And she said, "Yeah."
So I told her I didn't know, but that it was possible that she might have.  Then I said that the good thing was that, since she's been taking the medicine, her tumor hasn't grown, so she doesn't need surgery, and hopefully never will.
She seemed satisfied with that answer.  Such a big girl thinking such big thoughts.

We head back to NIH in 3 weeks for Jane’s next check-up and MRI.  But first, I have to run a marathon!!

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