Preparing for May: we start NF Awareness Month with a return trip to NIH and finish it with a marathon

Running Update

4/5/2017	Run		5.0 mi	46:43
4/8/2017	Run		7.5 mi	1:13:51
4/15/2017	Run		10.0 mi	1:36:44
4/16/2017	Run		3.3 mi	29:12
4/17/2017	Swim		1800.0 m
4/19/2017	Run		7.5 mi	1:10:21
4/20/2017	Swim		2000.0 m
4/21/2017	Run		5.0 mi	47:27
4/22/2017	Run		20.6 mi	3:25:49
4/24/2017	Swim		2000.0 m
4/25/2017	Run		3.1 mi	28:23

Just over a month until the Vermont City Marathon in Burlington over Memorial Day weekend!  I’ve been on track with my training this season—hoping it pays off.  I’ve never run this race before.  The route overlooks Lake Champlain and the Adirondack Mountains, so the scenery should be beautiful, but I’m nervous about the hills.  The VCM’s equivalent of Boston’s “Heartbreak Hill” is a climb up Battery Street at mile 15, their so-called “Assault on Battery”.  Yikes!

Jane Update

A follow-up to my last post about the fundraiser at Jane’s elementary school last month:

Jane and her schoolmates ended up raising $407.05 for the Children’s Tumor Foundation!  The President of CTF wrote a personal thank you note to the school, and included a picture of herself in a crazy hat :)

Next up for Jane: her upcoming 6-month check-up at NIH.

I’ll note that this is provided there is no government shutdown this weekend, which has become a concern before our check-ups more often in recent years.  So far, our lawmakers have always seemed to get their act together in time, but I'm nervous this time around with the new and unpredictable administration.  The National Institutes of Health is a government-funded institution, so some services may be on hold if the government is not funded.  In the past, we’ve been told that appointments would only be cancelled for new patients, but we can never be sure.

(If our visit is postponed, I may still go down to DC anyway, just to raise heck with the politicians responsible!!)

Here is the itinerary for our visit.  “PreCycle41” indicates that we’re about to start Jane’s forty-first 28-day cycle of medication.

Sun 4/30

Arrival day for PreCycle41 visit

Staying at the Children’s Inn

Mon 5/01

8:30am– Vital signs (3 hts, 3 wts) and Labs, Pediatric Clinic, 1st Floor

9:00am-11:00am– Eye exam with Dr. Bishop, Out Patient Clinic, 10th Floor

             Lunch Break

11:30am– EKG, Radiology, 1st Floor (or anytime during free time)

12:00pm– Physical exam with Andrea [our nurse practitioner], Pediatric Clinic, 1st Floor

1:00pm– Cardiac Echo, 5NE, 5th Floor

* will need Ativan prior *

3:00pm– Unsedated MRI (Face, sinus, ENT), Radiology, 1st floor

Tue 5/02

10:00am– Meet with Trish [our research nurse], Pediatric Clinic

10:30am– Photography, Room 1N230, 1st floor

11:00am– Family meeting, Pediatric clinic

On Tuesday afternoon, we’ve added something special to our schedule.  We were invited by our Congressman, Representative Joe Courtney, to meet with him in his Washington office!  As I posted last month, I had written to all my representatives in Washington about the proposed NIH budget cuts and about and Jane's history at NIH.  Congressman Courtney’s assistant wrote back that he would like to meet us to learn more about our experience.  So exciting!  We will bring a copy of the New England Journal of Medicine article that reported on the success of the NIH trial in which Jane is participating, and will also give him a t-shirt from the Children’s Tumor Foundation (“I Know a Fighter”).

After our meeting, we’ve planned to take a tour of the Capitol Building.  (Readers of this blog will remember that we visited the White House last spring during one of our visits to the area.)

NF Update

As I mentioned above, May is NF Awareness Month!  It's a time for members of the NF community to drive awareness, educate those around them, and raise support for research that will lead to effective treatments for neurofibromatosis.  We celebrate NF Awareness Month and World NF Awareness Day (May 17th) to put NF in the national (and international) limelight and to foster hope in the NF community.

Two particularly exciting components of NF Awareness Month are:

• "Shine a Light on NF" a grassroots initiative that brings NF awareness into the community by lighting up buildings, bridges and monuments in blue and green.  In 2016, the NF community secured 146 landmarks across the country and around the world!  To see a list of participating locations, click here: http://www.ctf.org/get-involved/shine-a-light
• Proclamations from governors, mayors, and city councils from across the country recognizing NF Awareness Month and World NF Awareness Day.  Last year, upon a request from Jane and me (with the help of NF Northeast), Governor Dannel Malloy declared May 2016 Neurofibromatosis Awareness Month in the State of Connecticut!

Every year during the month of May I post a fact about NF every day on social media.  I'll share the list next month here, too!