Wednesday, March 22, 2017

Running Update:
2/19/2017
Run

13.2 mi
2:10:39
2/22/2017
Run

7.6 mi
1:13:25
2/24/2017
Run

5.0 mi
47:48
2/25/2017
Swim

1600.0 mi

2/26/2017
Run

10.0 mi
1:34:53
2/27/2017
Swim

2400.0 m

3/1/2017
Run

5.0 mi
49:45
3/2/2017
Swim

2200.0 m

3/3/2017
Run

5.0 mi
46:12
3/5/2017
Run

14.0 mi
2:19:38
3/6/2017
Swim

1700.0 mi

3/8/2017
Swim

2100.0 m

3/8/2017
Run

7.6 mi
1:13:39
3/10/2017
Run

5.0 mi
48:05
3/12/2017
Run

9.2 mi
1:28:36
3/13/2017
Swim

2300.0 m

3/15/2017
Run

5.0 mi
48:13
3/19/2017
Run

13.1 mi
1:55:50

We had a great trip to New York City this past weekend for the NYC Half Marathon with the NF Endurance Team of the Children’s Tumor Foundation.  There were over 40 people running the race for the CTF this weekend--I've never been part of a team that big!

Saturday night we had dinner with the team, and I got to meet several people from the foundation who I've known for years through emails and fundraising, but who I've never met in person!  I was honored to meet president of the Children's Tumor Foundation, Dr Annette Bakker, and the director of the NF Endurance team, Emily Crabtree. 

My running partner, Neil, and I at the Expo

With Todd :)

All entrants names are listed on a wall at the Expo.  I found mine!

Requisite pre-race gear check

With Emily Crabtree, Director of the NF Endruance Team, and Dr Annette Bakker, the President and Chief Scientific Officer of the Children's Tumor Foundation

Jane with Mary Vetting, CTF's Stewardship Manager

With Steve Kendra, NF Dad and former NF Endurance Team director, and the one who introduced me to the team all those years ago!

Mary and I with Angela Dumadag, NFE Team Manager and the one responsible for organizing our team's participation in the NYC Half

The program for the evening

Look at that enormous team!

Our dear friends, Neil and Marcia joined us, too, and Neil—my running partner—ran the race.

It was a bitter morning!  Having attending the cold, dark starts of many early morning races, I brought just the right amount of layers this time.  I felt good during the race and afterwards, and initially thought I set a PR, but it turns I was a minute slower than last year.  Oh well!  Still lots of races left this year.

Jane catching sight of me at 54th Street!

I'm in the top, right corner, blue CTF shirt, arms raised :)

#endNF

With Neil after the finish

The bling!

Another race done!

Jane/NF Update:
In my last post, I promised to share the final version of flyer for the NIH Rare Tumor Initiative that featured Jane’s picture.  Here it is.  I think it’s perfect!


Saturday, February 18, 2017

Running Update:
1/27/2017
Run

5.0 mi
46:36
1/29/2017
Run

9.1 mi
1:29:28
1/30/2017
Swim

1500.0 m

2/1/2017
Swim

1200.0 m

2/1/2017
Run

7.6 mi
1:15:15
2/4/2017
Run

13.1 mi
2:11:10
2/6/2017
Swim

2200.0 m

2/8/2017
Swim

2100.0 m

2/8/2017
Run

7.6 mi
1:12:17
2/10/2017
Run

5.0 mi
47:00
2/11/2017
Run

9.1 mi
1:32:57
2/13/2017
Swim

1500.0 m

2/14/2017
Run

3.0 mi
26:00
2/15/2017
Run

5.0 mi
47:47
2/15/2017
Swim

2400.0 m

2/17/2017
Run

5.0 mi
46:44

Just about a month until the NYC Half Marathon—it seems to have come up quickly.  I’ll be running with the NF Endurance Team once again.  I hope some of this snow is gone by then!

This week I gave an interview to the New Haven Register/Shoreline Times in support of a locally-based charitable organization, a virtual running club called Random Tuesday, Inc.  In its first three years, RTI has donated over $800,000 to more than 15 charities by organizing virtual running events designed to promote walking/running and to raise money for charities focused on veterans, youth, literacy, animals, homelessness, the environment and fighting diseases.  In the interview, I extolled the virtues of this wonderful group, and was even able to spread a little awareness about NF :)
Here's the New Haven Register article.

NF Update:
February 28th is worldwide Rare Diseases Day (http://www.rarediseaseday.org/).  The National Institutes of Health, where Jane gets her care, celebrates this with a day-long symposium  (https://ncats.nih.gov/rdd).  This year Jane will be featured on a flyer for the National Cancer Institute’s Rare Tumor Initiative, a program founded by Jane’s neuro-oncologist, Dr Brigitte Widemann.  We can’t wait to see how it turns out!  We’ll be sure to share it with you.  It will likely feature one of the following gems of Jane at age 3:







Jane Update:
Jane was pleased to learn that she recently inspired a grown up.  A good friend of ours was scheduled for an MRI, and, being claustrophobic, was dreading the event.   She wasn’t allowed to have any sedation for the scan, so didn’t think she could go through with it.  However, she told us that she thought to herself, “If Jane can do this, I can do this!” and thus was able to tolerate the MRI!

Helen Update:

Finally, a quick mention of Jane’s big sister, Helen, who after 2-1/2 years had her braces off last week!

Wednesday, January 25, 2017

Running Update:
1/4/2017
Run

5.0 mi
48:29
1/6/2017
Run

5.0 mi
47:50
1/8/2017
Run

5.0 mi
48:44
1/9/2017
Swim

1450.0 m

1/11/2017
Run

5.0 mi
47:10
1/13/2017
Run

5.0 mi
47:46
1/14/2017
Swim

1200.0 m

1/15/2017
Run

7.5 mi
1:16:04
1/16/2017
Swim

1700.0 m

1/18/2017
Swim

1750.0 m

1/18/2017
Run

5.0 mi
49:23
1/20/2017
Run

5.0 mi
47:59
1/22/2017
Run

7.5 mi
1:14:23
1/23/2017
Swim

1600.0 m

1/25/2017
Run

7.6 mi
1:14:23

Current events have taken precedence (!) to my blogging lately, but I’m back with an update today, since NF isn’t going away anytime soon.  I’ve slowly started preparing for my spring races.  You’ll notice I’ve added swimming to my training!  I joined a Master’s Swim group this fall in the hope of improving my running performance.  We’ll see.

Here is my official 2017 race schedule to support the Children’s Tumor Foundation:

NYC Half Marathon—Sunday, March 19th
Vermont City Marathon—Sunday, May 28th
New Haven Road Race Half Marathon—Monday, September 4th
Marine Corps Marathon—Sunday, October 29th


As always, our official fund raising site is www.KRath4Jane.com and it has been updated to reflect the 2017 events.

NF Update:
The New England Journal of Medicine (NEJM) is one of the oldest and most prestigious peer-reviewed medical journals.  Last month this journal published the results of phase I of the clinical trial in which Jane is participating.  Jane was “Patient 24”, and you can actually see the plot of her tumor volume in the article.  How amazing is that??

The day the article came out I showed Jane a copy of the journal.  I told her the NEJM is a famous medical journal that I read (I have a subscription, so she has seen the journal before around our house).  I showed her the cover, which lists the articles, and I pointed out the article with “neurofibromatosis” in the title.  I told her it was an article about her medicine, written by her doctors, and that it included information about her!  She plunked right down at the kitchen table and began to read through it. 


The full article is available only to subscribers, but you can see the abstract here.
Or look for it in the library:  N Engl J Med 2016; 375:2550-256.

I pointed out that the article summarized the results of the first 24 children to take her medicine.  She asked, “Where does it say about the 24 children?” so I showed her the results section of the abstract.  She read “A total of 24 children (median age, 10.9 years; range, 3.0 to 18.5)…”  I told her that meant the average age to the kids was about 11 years, that the youngest child was 3 and the oldest was 18-1/2.  She flipped to Table 1 and started to read it line by line, following with her finger. 

The New England Journal of Medicine ©2017

The quotes are Jane’s as she read it through:

“Number of patients…24”

“Median age…10.9”

“13 boys and 11 girls.  That’s interesting—there were more boys than girls.”

“Number of patients who had previous medical interventions…19” I said that means the number of kids who had taken other medicines for their tumors before this one.  “I’m one of them.”

“Number of previous medical interventions for treatment of plexiform neurofibroma…41.  That means 19 kids had 41 different medicines.  How many medicines did I have?”  I told her first she had shots (Pegintron), then she had the medicine from Indiana (Gleevec).  “So, I had two.”  She noted that that was the same as the median number of previous medical interventions per patient (2).

“Number of previous debulking surgeries…”  I told her that meant how many children had had surgery for their tumor.  “Not me.”

“Predominant target location of plexiform neurofibroma.  Face…4.  That’s me!”  She went on to read that one patient had a head and neck tumor, 6 had a neck and chest tumor, 4 had a truncal tumor, 8 had a truncal and extremity tumor, and 1 had a whole-body tumor.  I commented that it didn’t seem to be enough patients, but she quickly added them up and said, “Yup.  It adds up to 24.”

“Progression status.  What’s that?”  I said that “progressive” was another name for “growing”, and that her tumor was growing when we started this trial.  “Mine was ‘nonprogressive’ before, when I took the shots.  It was not growing and not shrinking.”  I said she was correct—the interferon had kept her tumor stable for about a year before it became “progressive” again.

“Documented plexiform neurofibroma-related complication at baseline.”  I told her it was complications, or problems, caused by the tumor before starting the medicine.  “Oh!” she lamented, “One child had vision loss!”  Then, “What’s ‘motor dysfunction’?”   I told her it meant difficulty moving, for example, moving arms or legs.  We noted that her friend, Travis, who has a PN in his leg, has motor dysfunction from his tumor.  I pointed out, however, that Travis was not in this particular paper, because he was not in the original group of 24 children.  “Will there be another article in the magazine after the next 24 children?”  I told her probably.  She then started counting by 24: an article after 48 children, then after 72 children, then after 96 children… :)

“Pain…13.  I don’t have any pain.”

“Disfigurement.  Well, I have some, I think.  What does ‘disfigurement’ mean?”  I said it’s when something changes shape, like her cheek changed shape a bit because of her tumor.  She agreed.

With Table 1 done, she turned right to Table 2.

The New England Journal of Medicine ©2017 

“Dose-limiting toxic effects of selumetinib.”  I told her that meant side effects that were so bad that the child had to stop the medicine.  “I had to stop it once.”

I explained what elevated creatine kinase, cellulitis, urticaria, decreased left ventricular ejection fraction, and mucositis were.  Then she read, “Rash…1 patient.  That’s me!  Maybe people will read this and wonder who was the child who got the rash!”  Then she puzzled, “It says ‘Grade 3’, but I was in grade 1 when it happened.”  I explained that “Grade 3” was referring to the severity of the rash, not her school grade :)

Figure 2. The New England Journal of Medicine ©2017

Figure 2A: “Which one am I?” Number 24.  She got a ruler and drew a line from her bar to the y-axis labeled “Percent Change in Tumor Volume” and proclaimed, “It’s halfway between -30 and -40, so it’s about -35.”  I told her she was correct: the maximum decrease in her tumor volume was measured at 33%.

Figure 2C: “Which one am I?”  I pointed it out—hers is the black plot in the middle graph of Figure 2C (25mg/m2)—and described the various sections: pre-medicine, Pegintron, Gleevec, selumetinib. 

“I feel bad for patient 3 and patient 8.  Their tumors kept growing.”  She said, “Mine grew a tiny bit,” pointing to a brief plateau in her tumor volume after 18 months on the trial.  At first Jane thought that must correspond to the month she was off the medication.  “How long does it take for the medicine to kick in again?”  I told her I didn’t know.  She answered herself confidently: “Probably a week.  So, that’s one month plus one week…  Would that cause it to grow?”  I told her the more likely reason for the plateau was that it was around this time that she went from sedated to non-sedated scans, which would affect the way the tumor was measured.

Figure 3. The New England Journal of Medicine ©2017

Figure 3: “Does it say my name?  Does it have my picture?”  I explained that medical journals don’t use patients’ names or pictures of their faces in order to maintain the patients’ privacy.  “What if the tumor is on your face?”  She answered herself, “They could just cover part of it, like this.”  She covered her eyes and forehead with her hands.  I agreed, and said the journals often use a black bar to cover a patient’s eyes.

I confess seeing the study in print in a prominent medical publication has caused me mixed emotions: on the one hand, I am thrilled that we got a chance to participate in the study and that it’s had such good results.  I’m also tickled that Jane is “published” in the NEJM!  On the other hand, it reminds me that Jane was one of only 24 “guinea pigs” for the study, and that she has a unique enough medical condition to warrant a report in the NEJM.

I have allowed myself to envision, maybe 10-15 years from now, Jane and the other 23 kids reuniting at NIH to celebrate when selumetinib finally gets FDA approval and becomes the standard-of-care for plexiform neurofibromas.  Maybe she’ll be starting medical school at that point :)