Sunday, June 2, 2019


Running Update:
4/30/2019
Run

3.2 mi
27:42
5/1/2019
Run

8.1 mi
1:18:11
5/3/2019
Run

5.0 mi
48:05
5/5/2019
Run

22.3 mi
3:53:10
5/7/2019
Swim

1500.0 yd

5/8/2019
Run

5.0 mi
48:42
5/10/2019
Swim

1500.0 yd

5/11/2019
Run

13.1 mi
2:09:50
5/15/2019
Run

5.0 mi
47:56
5/17/2019
Run

3.2 mi
29:49
5/19/2019
Run

7.6 mi
1:16:04
5/22/2019
Run

5.0 mi
48:44
5/26/2019
Run

26.2 mi
4:54:02
6/1/2019
Swim

1900.0 yd

6/2/2019
Run

5.0 mi
50:53

The Vermont City Marathon 5/26/19
Another race done for the Children’s Tumor Foundation: the Vermont City Marathon in Burlington, VT was last weekend and was marathon number 15 for me.  You’d think by now that I’d have this thing down pat, but you’d be wrong!  The last few marathons I’ve done I’ve hit the wall around mile 17 and haven’t been able to bounce back.  I’ve finished them all with a combination of walking and running the last third of the race, but I’d like to get past this!  I finished my 20+ mile training runs faster than I ran the actual marathon!  I keep thinking maybe I’m getting to old for this, but then I think about all the marathoners I know who are older than me and realize that I can’t use that argument :)

Sunday dawned cool and overcast and promised to be a good weather for running.  The race was supposed to start at 7am sharp, but with 15 minutes to go, as thousands of runners lined up in the starting area in Battery Park, we heard an announcement that the park was being evacuated due to severe weather!  A rogue thunderstorm blew in and delayed the race for about 45 minutes.  I’d never experienced a race delay like that, and apparently neither had the Vermont City Marathon in all of its 31-year history.  Runners took shelter in several parking structures and nearby hotels until we were given the all-clear.  Talk about getting psyched out!

After arriving at Battery Park for the start
Storm moving in from over Lake Champlain!

Evacuating!

Aaaand back to the start again.
Still waiting for the start, 45 minutes later
Finally at the starting line (right in the middle of the picture!)

Once the race was finally underway, we had sunny skies, maybe a little warmer than would have been ideal, but the course was beautiful as always, looping around picturesque Burlington, and there were plenty of encouraging spectators, despite the stormy start.


Running back down Church Street around mile 9
(The VCM gives participants free race photos!)

Pine and Main, just before mile 10

Up the long hill of Battery Street at mile 15

High five from Alec!

As I mentioned above, I had to alternate walking and running after mile 17, and I was walking around mile 22 when a stranger walking next to me said, “OK, let’s start running again, and we’ll run to the next stop sign.”  We did, and for the next two miles we ran and walked together, encouraging each other to run a little bit farther each time.  It turns out he is the Virginia State Representative to the Road Runners Club of America and is trying to run a marathon in every state!  What a difference it made to run as a team.  It got me through to mile 24, and from there it was all downhill to the finish.  (Thank you, Grattan!)

Mile 24!
Passing the kids at the finish chute

Finish line!


With the kids


Jane and me

Best support team ever!



Thanks to all of you, we’re raised over $7000 so far this year for the Children’s Tumor Foundation!  I’d like to give a special thank you to Jane’s friend and classmate, Will.  Will took it upon himself to set up a lemonade stand last weekend and donated the proceeds to CTF in honor of Jane!  Such a thoughtful and wonderful friend!

Will raised over $400 for CTF!!

NF Update:
As you probably all know by now, May was NF Awareness Month.  For those of you who missed my social media posts, here is the list of facts I shared to help people understand more about this condition.

1 Neurofibromatosis is a set of genetic disorders that causes tumors to grow on nerves throughout the body.
2 Neurofibromatosis can also affect the development of non-nervous tissues such as bones and skin.
3 There are three forms of neurofibromatosis:  NF1, NF2, and schwannomatosis. 
   Each cause tumors to grow on nerve endings in or on the body.
4 About 1 in 3000 people are affected by neurofibromatosis type 1, 1 in 25,000 are affected by NF type 2,
   and about 1 in 40,000 are affected by schwannomatosis.
5 About half of all cases of NF are inherited from a parent who has NF; the other half of cases are
   not inherited but the result of a new or spontaneous mutation.
6 NF1 and NF2 are autosomal dominant genetic disorders.
7 Each child of an affected parent has a 50% chance of inheriting the gene and developing NF.
   The type of NF inherited by the child is always the same as that of the affected parent, although the severity
   of the manifestations may differ from person to person within a family.
8 The severity and physical signs of NF1 can vary widely from person to person. People who have NF1 may
   have very few neurofibromas (tumors) or they may have thousands of them throughout their body.
9 Although most cases (60%) of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness;
   skeletal abnormalities; skin, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities.
10 NF1 has a connection to developmental problems, especially learning disabilities, which are five times
    more common in the NF1 population than in the general population.
11 There are two types of neurofibromas in NF1: dermal neurofibromas and plexiform neurofibromas.
12 Dermal neurofibromas can be cutaneous (on the skin surface) or subcutaneous (under the skin)
    and are lumps that are very typical to NF1. Most are not a medical issue, but can cause pain and itching. 
13 Plexiform neurofibromas are less common, occurring in about 25% of NF patients. They can grow large,
    and can cause problems such as pressure on nerves and organs.
14 NF1 can result in disfigurement in a number of ways. Skin neurofibromas may develop on the face or on
    exposed areas of the arms or legs. The larger and deeper plexiform neurofibromas may grow around the
    eye or eyelid, or affect growth of one side of the face. Scoliosis, or curvature of the spine, can affect appearance
    when it is severe. Rarely, an overgrowth of skin or bone causes enlargement of an arm or leg.
15 Some people with NF1 suffer from a bony defect called tibial dysplasia, in which the leg bones are curved.
16 May 17 is World NF Awareness Day.  The NF gene is found on chromosome 17.
17 Many people with NF1 suffer from frequent headaches, particularly migraine headaches.
18 NF1 can affect the cardiovascular system causing congenital heart defects.  People with NF1 are at
    increased risk of high blood pressure.
19 Café-au-lait spots, the most common sign of NF1, are the flat, pigmented spots on the skin, which are called
    by the French term for coffee (café) with milk (lait) because of their light tan color. In darker-skinned people,
    café-au-lait spots appear darker in color than surrounding skin. People with NF almost always have six or more
    café-au-lait spots.
20 5% of NF1 patients have a bone-related issue called sphenoid wing dysplasia, in which the skull and eye orbit
    bony areas erode away, causing possible craniofacial abnormalities, loss of the eye, and enlargement of the
    eye orbit cavity.
21 About 10% of people with NF1 will develop scoliosis, or a lateral curvature of the spine. In most cases it is mild,
    but more severe cases may require surgery.
22 Approximately 15% of patients with NF1 will develop an optic glioma with the peak age of onset between
    age 3-4 years old. An optic glioma is a tumor of the optic nerve in the brain which controls the vision
23 Most individuals with NF1 will start puberty during the expected age range, but some may experience either
    delayed or early puberty. This is frequently, but not exclusively, associated with optic pathway tumors.
24 Children and adults with NF1 often have a large head circumference, which usually does not indicate any
    significant medical problem.
25 Many people with NF1 are shorter than average, but it does not cause any health concerns. 
26 The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly
    causing deafness and severe balance problems.
27 The tumors in NF are usually noncancerous (benign), but in some cases these tumors become cancerous
    (malignant) tumors.
28 NF related malignancy is estimated to occur in 10% of affected individuals. People with NF are at increased risk
    for MPNST (malignant peripheral nerve sheath tumor), brain tumors, and leukemia, as well as several other
    forms of cancer.
29 NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or
    ethnic distribution. Therefore, NF can appear in any family.
30 Neurofibromatosis affects more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis,
    Duchenne muscular dystrophy, and Huntington's Disease combined.

If you prefer this information in video form, please watch this thorough yet succinct and understandable video about NF from the Childhood Tumour Trust!


 
As we say, Awareness Month may be over, but the fight against NF is year-round.  If you haven’t had a chance, please donate to the Children’s Tumor Foundation here: 


Jane Update:
I am sorry to say that Jane has been dogged by another toenail infection and more rashes this month.  Both are known side effects of her trial medication, selumetinib.  We had to stop selumetinib for a week so she could take antibiotics for her toe, and we started yet another topical skin regimen for this new rash.  She tolerates it all like a trooper and doesn’t let it hold her back for one second, which is good because of all her end-of-schoolyear activities!  This week Jane had her spring band concert (in which she plays the flute) and one of her last few soccer games of the season.

Concert-ready



Perfect throw in sequence :)







Monday, April 29, 2019


Running Update:
3/19/2019
Swim

1500.0 yd

3/20/2019
Run

5.0 mi
49:21
3/22/2019
Run

5.0 mi
48:24
3/23/2019
Swim

2100.0 yd

3/24/2019
Run

16.1 mi
2:43:33
3/26/2019
Swim

2100.0 yd

3/27/2019
Run

7.3 mi
1:13:05
3/29/2019
Run

5.0 mi
49:40
3/30/2019
Swim

2150.0 yd

3/31/2019
Run

10.2 mi
1:43:16
4/2/2019
Swim

2100.0 yd

4/3/2019
Run

6.0 mi
51:12
4/5/2019
Run

5.0 mi
47:36
4/7/2019
Run

18.0 mi
3:01:44
4/8/2019
Swim

1500.0 yd

4/9/2019
Run

3.2 mi
28:13
4/10/2019
Run

5.0 mi
47:41
4/12/2019
Swim

2100.0 yd

4/13/2019
Run

10.2 mi
1:45:27
4/14/2019
Swim

1500.0 yd

4/16/2019
Run

4.8 mi
44:59
4/18/2019
Run

4.6 mi
44:02
4/19/2019
Run

4.4 mi
42:28
4/23/2019
Run

2.1 mi
20:31
4/24/2019
Run

20.1 mi
3:41:07
4/27/2019
Run

5.0 mi
48:00
4/28/2019
Run

5.0 mi
47:45

Less than a month until the Vermont City Marathon.  I’ll be running 26 miles on May 26!  I have one more 20+ mile training run this weekend, then I start to taper.  It’s nice to have the spring weather arriving in time for my long runs.  You can always donate to our campaign at www.KRath4Jane.com


NF Update:
Some exciting news this month regarding Jane’s study medication, selumetinib.  One year after being granted orphan drug status, the US FDA has granted Breakthrough Therapy Designation for selumetinib to treat pediatric patients with NF1 and plexiform neurofibromas.  This means that selumetinib is put on a “fast track” for approval, and it guarantees more intensive help from the FDA to meet that goal.  Here are some of the social media posts about the announcement, including one from the National Cancer Institute featuring Jane’s medical team, and one from the Children’s Tumor Foundation featuring Jane herself!

Jane's medical team at NIH NCI Pediatric Oncology
A picture of Jane's friend, Travis, who is in the same clinical trial!

Our own Jane is featured in the CTF

In other NF news, the Atlantic has produced short documentary about NF celebrity Adam Pearson and his identical twin brother, Neil.  Although they share the same DNA, their appearances are vastly different; each suffers from neurofibromatosis, but the condition has affected them in divergent ways. They tell their story in this deeply moving 11-minute video.


At one point in the video, Adam’s mother comments that when Adam was a small child, before he was diagnosed with NF, “I noticed something, when he would eat sometimes that side of his face used to redden up and I took him to the doctors and they said, ‘No its fine, it’s a blocked saliva gland.’”  This struck a chord with me because it is exactly what we noticed about Jane when she was just six months old, and we got the exact same response from a doctor.


Jane (and family) Update:
April was a busy month for Jane and our family.  First of all, Jane turned 12!

Opening presents at home

Birthday ice cream with friends

Then our family spent our April break in Iceland, a first time visiting this country for all of us.  With volcanoes and glaciers side by side, it truly is the Land of Fire and Ice!

Rainbow over Reykjavik as seen from the tower of Hallgrimskirkja

Hiking Thingvellir National Park

Gullfoss waterfall

Basalt columns at Reynisfjara

The black sand beach of Reynisfjara

Skogarfoss waterfall

Hiking the Fimmvorduhals trail

Rejkjadalur hot springs hike

Finally, Helen attended her high school Junior Prom this past weekend.  The rain held off just long enough for us to get some great photos of her and her friends <3

#spacebuns #glitterroots

Our beautiful daughter <3

With best friends

Having fun!