Saturday, August 24, 2013

Running update:
8/14  7.5 miles in 1:10:14
8/16  7.6 miles in 1:15:10
8/18  10.3 miles in 1:39:36
8/21  7.5 miles in 1:13:44
8/23  5.1 miles in 46:28
Gearing up for my long run tomorrow:  18 miles.  Oof.

NF update: 
This week I was interviewed by our local newspaper as “Person of the Week”!  (Thank you for nominating me, Janet!)  The reporter described Jane’s experience with NF and my fund-raising efforts for the Children’s Tumor Foundation.  Here is the lovely article: The Source August 21, 2013 Person of the Week.

Jane update:
Not long ago I had a dream that I was back in medical school listening to a lecture on neurofibromatosis.  The professor described the potential complications of NF:   neurofibromas, skeletal dysplasias, optic gliomas, scoliosis, learning disabilities, pheochromocytomas, epilepsy.  I turned and found that Jane was sitting next to me, recoiling in horror at his words.  She asked me, “Is that what I have?!?”

When the article in the Source came out this week my husband Todd read it aloud to the family after dinner.  I cringed inwardly when Todd read my description of NF.  Thankfully, Jane was half-listening, focused instead on her dessert.  The big words didn’t mean anything to her.  Jane knows she has “NF” and that she has to take medicine because of her cheek, but right now that seems to be the extent of her comprehension about her condition.  Hopefully she’ll gradually discover little bits at a time about NF as she gets older, and never be bowled over with all the information at once like she was in my dream.

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