Sunday, September 24, 2017

Running Update:
9/6/2017
Run

5.0 mi
48:52
9/8/2017
Run

3.2 mi
31:27
9/10/2017
Run

18.1 mi
3:08:08
9/12/2017
Swim

2000.0 m

9/13/2017
Run

7.6 mi
1:14:09
9/15/2017
Run

3.2 mi
31:17
9/16/2017
Swim

2100.0 m

9/17/2017
Run

5.0 mi
48:30
9/22/2017
Run

5.0 mi
47:24
9/23/2017
Swim

2000.0 m

9/24/2017
Run

16.0 mi
2:53:50

The Marine Corp Marathon is 4 weeks from today!  Two more weeks of regular training before I start to taper.  I had hoped to run 20 miles today, but I had to stop at 16 miles due to the conditions—it was 85 degrees and humid here.  Also, even though I run marathons to support the research for a cure to NF, traveling to NIH for said research protocols is not always compatible with training for a marathon!  I missed several workouts this week, but I’m hoping to make up for it before I start to taper.
As always, you can donate to our race here:  www.KRath4Jane.com

Jane Update:
Jane and I are back from another trip to the National Institutes of Health.  In the past we’ve often made our trips at the beginning of the week (arrive Sunday, testing on Monday and Tuesday, home Tuesday or Wednesday), but for various reasons this time we arrived mid-week and returned home late on Thursday.  We discovered a benefit of this schedule is that the clinical center is much less busy at the end of the week, so most of our appointments ran on time.  A disadvantage of an end-of-the-week visit is that we didn’t get all our test results until a few days after we got home.  (More on that later.)  The Children’s Inn was similarly empty, which gave us more space to relax, but there were also fewer kids for Jane to play with (and parents for me to socialize with).

Our main testing day was Thursday, and we followed our typical appointment schedule:
8:00am– Vital signs (3 hts, 3 wts) and labs, Pediatric Clinic, 1st floor
8:30am– Photography, Room 1N230, 1st floor
9:00am– EKG, Radiology, 1st floor (or anytime during free time)
9:30am– Eye exam Dr. Bishop, Out Patient Clinic, 10th Floor
                  Lunch Break
11:45am– Unsedated MRI (Face, sinus, ENT), Radiology 1st floor
1:00pm– Physical exam with Andrea, Pediatric Clinic, 1st floor
2:30pm– Family meeting, Pediatric Clinic
3:00pm– Echocardiogram, 5NE, 5th Floor

Photography is always my favorite appointment :)




At our family meeting our team was able to give us some initial results.  Visually, Jane’s tumor seemed to be stable, if not slightly smaller in the area of her tongue.  Our radiologist set several of Jane’s MRI images side-by-side for us to see.  Jane had the most dramatic reduction in the size of her tumor in her first year on selumetinib (the trial drug), but the radiologist thought there was still further improvement even in this past 5 months.  In order for you to understand the images, I’ve added some labels, and would like to explain the views.

The "coronal" view is a cross section of the head cutting it into front and back halves.  (Think of an imaginary plane that cuts through both shoulders.)  


The "axial" view is a cross section of the head cutting it into top and bottom halves.

In the images below: 
- The top row contains coronal views.  The top of the image is the top of Jane's head, the bottom is her chin.
- The bottom row contains axial views.  Imagine Jane is laying on her back.  Her teeth are at the top of the image, her spine at the bottom.
- The first column is of images from February 2014, prior to Jane starting selumetinib.
- The second column is of images from October 2016 (roughly one year ago).
- The third column is of images from this visit.
- In the first column, the red arrows point to tumor (bright white).

However, a few days after we got home our team emailed the quantitative results:



Based on these results, our care team is calling Jane’s tumor stable.  “Stable” is always good, though I confess since we increased Jane’s dose after her MRI in May, I was hoping to see at least a little additional reduction her the tumor volume.  Also, even though I know that “stable” means there was not statistically significant difference in the size of her tumor from last visit, I would rather see a slight dip in the plot rather than a slight rise.  Will wait until March for Jane’s next MRI.

NF Update:
Readers of this blog know that my kids and I are Harry Potter fanatics.  We learned today that the daughter of the actress who plays Hermione Granger in the play, Harry Potter and the Cursed Child in London also has NF1, like Jane.


While I would never wish NF on anyone, it is always good to learn about others who understand about NF first hand.

Wednesday, September 6, 2017

Running Update:


6/19/2017
Bike
5.9 mi
40:46:00
7/26/2017
Run
5.0 mi
48:31:00
6/20/2017
Run
5.6 mi
51:36:00
7/28/2017
Run
5.0 mi
48:57:00
6/21/2017
Run
5.6 mi
50:53:00
7/30/2017
Swim
500.0 m
6/21/2017
Bike
12.1 mi
7/31/2017
Run
9.2 mi
1:31:33
6/22/2017
Bike
4.2 mi
8/1/2017
Swim
500.0 m
6/23/2017
Run
7.7 mi
1:14:30
8/2/2017
Run
8.7 mi
1:28:59
6/23/2017
Bike
6.9 mi
8/3/2017
Swim
500.0 m
6/25/2017
Run
5.0 mi
47:38:00
8/3/2017
Run
5.1 mi
51:57:00
6/28/2017
Run
5.0 mi
47:27:00
8/5/2017
Run
14.9 mi
2:32:27
6/30/2017
Run
3.3 mi
30:29:00
8/6/2017
Swim
500.0 m
7/2/2017
Run
5.0 mi
48:56:00
8/7/2017
Run
5.1 mi
51:32:00
7/4/2017
Run
5.0 mi
47:16:00
8/9/2017
Run
5.1 mi
54:05:00
7/5/2017
Run
5.0 mi
48:39:00
8/10/2017
Swim
500.0 m
7/7/2017
Run
5.0 mi
45:31:00
8/11/2017
Run
10.3 mi
1:44:28
7/8/2017
Swim
1700.0 m
8/14/2017
Run
3.3 mi
31:10:00
7/9/2017
Run
8.0 mi
1:17:26
8/16/2017
Run
7.2 mi
1:12:36
7/10/2017
Swim
2200.0 m
8/18/2017
Run
5.0 mi
48:48:00
7/12/2017
Run
5.0 mi
50:11:00
8/19/2017
Swim
2000.0 m
7/14/2017
Run
5.0 mi
47:36:00
8/20/2017
Run
12.4 mi
2:09:08
7/15/2017
Swim
2000.0 m
8/22/2017
Swim
2000.0 m
7/16/2017
Run
10.0 mi
1:38:51
8/23/2017
Run
7.6 mi
1:14:46
7/17/2017
Swim
2200.0 m
8/25/2017
Run
5.0 mi
47:23:00
7/20/2017
Run
5.0 mi
48:31:00
8/26/2017
Swim
2100.0 m
7/21/2017
Run
5.0 mi
48:39:00
8/27/2017
Run
16.2 mi
2:41:50
7/22/2017
Swim
2000.0 m
8/30/2017
Run
5.0 mi
47:45:00
7/23/2017
Run
12.3 mi
2:00:05
8/31/2017
Swim
2000.0 m
7/25/2017
Swim
2100.0 m
9/4/2017
Run
13.1 mi
2:05:41


Above is my whole summer’s worth of training!  I haven’t gone so long without posting before—it looks more impressive when you put it all together like this :)

Monday was the 40th annual New Haven Road Race, and its half marathon was my first race of the fall season.  Labor Day in New Haven is typically hot and humid, but this year it was unseasonably cooler and dry.  Despite the perfect weather, the race wasn’t one my faster ones, but I did manage to finish 20th out of 67 in my age group!  Todd is my faithful one-man support crew and race photographer, captured the day:

The medal!

With Diane, another member of the NF Endurance Team (and NF Mom)

At the start on Elm Street

Action shot

Nearing the finish on Temple Street

Done!

With my inspiration, Jane

With the kids <3

Jane (and family) update:
The kids started back to school yesterday!  Helen and Alec are in tenth and eighth grades, so will remain in their same schools, but this year Jane moved up to the middle school for fifth grade!  Everyone seems to like their classes and teachers—we’re looking forward to a good year.

Todd and Helen on the first day of school (for Helen!)

Jane and Alec before catching their bus


NF Update:

Lots of NF events coming up in the next month and a half.  In two weeks, Jane and I return to NIH for a check-up and her 23rd MRI.  The following weekend is the NF Walk in Putnam, CT [link].  Then, the third weekend in October the whole family will head to DC while I run the Marine Corps Marathon for the Children’s Tumor Foundation.  So, watch this space!  (Meanwhile, you can always donate to our campaign at www.krath4jane.com!)

Saturday, September 2, 2017

Reflections on Wonder by the mother of a 5th grader with neurofibromatosis.

The book Wonder by RJ Palacio was published in 2012.  I bought a copy as soon as it came out, but it has sat on my bedside table, unread, ever since.  Jane read it in her 3rd grade class and loved it.  Alec read it in his 7th grade class this past year.  Many times, I have vowed to read it, but lost courage.  The movie based on the book is to be released later this year, and I know Jane is looking forward to watching it.  I have decided that it is time for me to experience the book for myself.  I will report my findings to you.

However, I’ll start by sharing with you an email I sent to another NF Mom (and language arts teacher) about Wonder back in March 2013:

“By the way, have you read the book Wonder by R.J. Palacio?  It's a young adult book about a 5th grader with a facial deformity that's won all sorts of awards and is supposed to be very uplifting.  I've had a copy on my bedside table for almost a year, but I haven't had the courage to read it.  Many people have recommended it to me, but none of them have a kid with a facial deformity, so I'm not sure I trust their judgment!  Part of me is afraid it will sugar coat the child's experiences; part of me is just afraid it will make me cry.  Just curious if you'd heard of it...”

My friend hadn’t read it yet, so I let the book sit on my bedside table a while longer.

Then, in September 2013, I heard a re-broadcast of this interview with the author on NPR:
“Raquel Jaramillo's debut novel, Wonder, written under the pen name R.J. Palacio, was born out of a rather embarrassing incident. The author was out with her two sons, sitting in front of an ice cream store. Her oldest had just finished fifth grade, and her youngest was still in a stroller. They spotted a girl whose face had been deformed by a medical condition.
"It was just one of those terrible moments when my kids didn't react the way I would've wanted them to react," Jaramillo tells NPR's Steve Inskeep. ‘In order to spare this little girl's feelings, I ended up just kind of running away from the scene.’
She felt terrible about the incident, and replayed it over and over in her mind. That night, she began writing a story about a fifth-grade boy nicknamed Auggie who struggles to feel ordinary with everyone constantly staring at him.”

I listened to the interview on the radio in my car on my way home from work, sobbing, beside myself.

I was angry at the author for running away from the scene.  Even though she felt badly about it afterwards, even though it prompted her to write an uplifting novel for her atonement.  Even though I can completely understand the situation—who hasn’t had a moment of being embarrassed by one’s kids’ behavior (or one’s own)?  Still, that little girl in the ice cream shop could have been my Jane!  I know how the mother of the girl must have felt—it breaks your heart to see others repelled by your child.  You broke my heart that day, too, Ms. Palacio!

I know kids (and adults) notice things that are out-of-the ordinary.  Even my own kids used to look at a person with a prosthetic leg, for example, and point it out to me.  I have tried to teach them to look the person in the eyes and smile.  Or, as NF awareness advocate Reggie Bibbs instructs, “Just Ask”.  (To read about the amazing work of Reggie Bibbs, see his website http://justaskfoundation.org/)
In public, I see stranger’s eyes linger on Jane’s face.  Then they look at me beside her, me noticing them staring, and their eyes flick away.  My request if you are ever in a situation where you are caught staring, however innocently:  don’t look away.  Meet my eyes and smile.

(Jane’s appearance brings her stares and teasing, but also does bring some positive interactions.  For the longest time, I was impressed how people around town warmly greeted our family.  When we go to a local restaurant, the waitress remembers us, no matter how long it’s been since we’d been there last.  The librarian, the dry cleaners, the hair salon—all have amazing memories for our family.  I finally realized that they were recognizing Jane.)

Wonder has won critical acclaim and a number of literary awards.  But still I was skeptical that it could be “uplifting”, as it is so often described.  Uplifting for who?  For an affected child?  Or for those feeling guilty of having treated that child differently?  Sometimes, even the people who you would think would be the most sensitive to another’s differences don’t always get it.  The very same child who recommended Wonder to Jane’s teacher was Jane’s biggest bully in Kindergarten.  (Back when she was only 5 years old Jane told me, “M. doesn’t make fun of me anymore because I told him Santa is watching.”)  And, for goodness sake, a former pediatrician once chided us about Jane’s condition, “At least it’s not cystic fibrosis.”. 

I will confess that a part of me was angry that the author has won acclaim (and fortune!) by writing a story from a point of view she has never experienced, and that she can only imagine.  (I acknowledge, though, how very little I myself can understand the tremendous suffering that minority groups have endured as a result of cultural appropriation.)

After hearing the interview, I put the question of Wonder to more NF Mom friends.  I posted:
Has anyone read Wonder by RJ Palacio? I bought it when it first came out a few years ago, but haven't ever had the courage to read it. The book is about a little boy with a craniofacial deformity. It gets rave reviews. I want to read it, but I'm afraid it will sugarcoat the problem of living with such a deformity. My 6-year-old daughter has a prominent plexiform neurofibroma (PN) on her face, head, and neck.
If you've read it: will it gives hope or disappoint me? (I figure NF Moms have unique right to critique it...)

Here are some of the responses from that wonderful group of women:
~ I have read it & although it was difficult for me to read at times, I have to say that I'm glad I read it. My son has a non-prominent PN on his face (cheek, jaw & ear). It was insightful for me as it is written from a few perspectives. I think you should read it but do it in your own time. Hugs from one PN mom to another!

~ Hi Kristina, to be honest I would only read material you're quite ready for. If you feel that you're not ready to accept what might be then don't read!! My son has a plexiform tumour on his face & neck. It's taken a long time to come to terms with what might or might not happen. Remember everyone's story is different! Love to you x x

~ Another place to check out is the Children's Craniofacial Association. www.ccakids.org . They have information and have been promoting the book. We have been involved with them for many years as my daughter has plexiforms in her face/neck as well. Just a thought.

~ I loved it! No complaints here. Great story.

~ It's a beautiful book! You should read it. The author does a great job helping you understand what the little boy is feeling. It's also interesting to get a glimpse into the family dynamic and the emotions that are felt by each family member and friend.

However, my reluctance continued.                    

Then in December 2015 I learned that Jane herself would be reading the book with her 3rd grade class.  I wrote to the teacher about my concerns.

Dear Ms. W,
Jane happened to mention to me today that you started reading Wonder in class. I bought Wonder when it first came out, but it has sat on my bedside table for two years because I have been afraid to read it! I have many complex emotions regarding it. I understand that many people find it uplifting and inspiring, which is wonderful. I know the basic plot, and I think what scares me is reading about how other children can bully a child with an abnormally shaped face. I am projecting Jane onto Auggie! A slightly more cynical part of me was afraid that it would sugar-coat the experience of a child with an abnormally shaped face. The reason I am writing to you is because I will be very curious to hear Jane's interpretation of Wonder--if it will resonate with her at all, or if the similarity of her condition with Auggie's will go over her head. Would you let me know if you notice? Perhaps it is time for me to read Wonder myself, though I think it will be emotionally charged for me. I don't know if I have the emotional energy right now, given our upcoming trip to NIH! Thank you for listening! Please keep in touch. Much love, K

The teacher encouraged me to read the book.  I started it, read the first page, and then chickened out again.

Another NF Mom friend, whose son has the exact same tumor in the exact same location as Jane and who is taking the exact same trial medication as Jane reassured me that her son also loved the book, and that the story is not so much about Auggie’s appearance as it is about friendships.

Finally, I confided in a dear friend who knows Jane, and who is a teacher as well.  She responded:

Well, I totally TOTALLY understand your reservations, but a very big part of me thinks that Jane could probably run a book group on this book.  Somehow God knew to pack this chickadee with personality and confidence times ten.   I also think this is a good year to read this book and a good way to go about it.  Here's why:

1). It will be in a controlled environment.
2). It's a good age - before things get too clique-y and really all about looks, like in middle school
3). I think this may be a good opportunity for Jane, if she chooses to, to share her story.

All that being said, I don't think Jane should be blindsided - a little heads up about the book might be a good idea.

So, those are my thoughts!  I personally did not really like the book that much.  I don't exactly remember why.  I think I have it on my iPad or Kindle though so I'll give it another read.

As I mentioned before, Jane has since read the book and loved it (though I still am not sure if she identifies with Auggie himself).  She’s even read the sequels, Auggie and Me and 365 Days of Wonder.  Incidentally, I asked Alec if the book made him think of Jane.  He said, "Not at all.  Jane has lots of friends."

So now it’s my turn to find out.
~~~

CAUTION:  SPOILERS AHEAD!

I did it.  I’ve read the book twice now, I’ve visited author’s website, I read several reviews.  I let it all percolate in my brain over the summer (which is why I haven't posted in so long).  Here are my thoughts:

What it got right
1 The looks.
The book frequently and accurately describes other people’s reactions to seeing someone with a different appearance.  Stares and averted eyes are obvious to us.  Auggie reports, “I noticed Julian staring at me out of the corner of his eye.  This is something I see people do a lot with me.  They think I don’t know they’re staring, but I can tell from the way their heads are tilted.”  In fact, on the very first page of the book, he laments, “I would wish that I could walk down the street without people seeing me and then doing that look-away thing.”

My favorite passage regarding this phenomenon comes early on in the story.  Auggie, a big Star Wars fan, says, “I’m not saying they were doing any of these things in a mean way...  Like, it’s okay, I know I’m weird looking, take a look, I don’t bite.  Hey, the truth is, if a Wookiee started going to the school all of a sudden, I’d be curious, I’d probably stare a bit! And if I was walking with Jack or Summer, I’d probably whisper to them: Hey, there’s the Wookiee. And if the Wookiee caught me saying that, he’d know I wasn’t trying to be mean. I was just pointing out the fact that he’s a Wookiee.”

This is exactly what I described before I read the book!  Meet my eyes and smile.  "Just Ask".

2 The fear of infection.
When Jane was asked in an interview what one thing she’d like people to know about NF, she immediately replied, “It’s not contagious.”  She also brought this up in the Persuasive Essay she wrote in school last year.  Clearly this is on a ten-year-old’s mind.

Auggie tells us, “I noticed not too long ago that even though people were getting used to me, no one would actually touch me.”  He learns that his classmates are playing a “game”, as his friend Summer explains: “Anyone who accidentally touches August has only thirty seconds to wash their hands or find hand sanitizer before they catch the Plague.”

This is where awareness and education are helpful, to combat this kind of hurtful misinformation.  This is why I try to teach as many people about NF as I can.

For the most part, I think ignorant people act this way out of fear for their own health, but I do wonder sometimes if they are also being a bit judgmental.  I imagine some onlookers thinking, “If you took care of yourself, this wouldn’t have happened.”  I’ve had concerned strangers suggest that I should have eaten organic during my pregnancy with Jane.  Jane’s concern that people know “it’s not contagious” may be her way of expressing that “it’s not my fault.” 

3 The characters.
The characters are all well written, believable and sincere (although perhaps a little more mature than most fifth graders I know…)  Each chapter is narrated by a different child in Auggie’s world: first Auggie himself; then his sister, Via; his friends, Summer and Jack; and others.  Auggie’s parents and teachers—who do not speak for themselves but through the children’s narrations—do everything right to support Auggie.

4 The importance of kindness.
The tagline of the book is “Choose Kind”.  The principal of Auggie’s school lectures, “Always try to be a little kinder than is necessary.”  The obvious reason is Auggie and the unkindness he has suffered because of his appearance, but we learn that other children in the story have hardships that are not as pronounced as Auggie’s face:  a dead parent, neglectful parents, poverty.  The lesson is to always be kind, because one may never know the burdens others carry.  This is as important to learn, not just for fifth-graders, but for all of us.


What it lacks
1 The main character’s social and medical future.
The books ends at fifth grade graduation, where Auggie has won an award for his courage, kindness, and character.  Everyone is happy.  Everyone learned a lesson from knowing Auggie.

That’s where the book ends, but that’s not the end of Auggie’s story.

In a few years, in the real world, he’ll attend a new high school.  Then a new college.  Then he’ll have a career with new colleagues.  And there will always be new stares, new prejudices, new bullies.

The book only briefly touches on this future, in one exchange between Auggie and his mother:
“Mom? Am I always going to have to worry about jerks like that?” I asked. “Like when I grow up, is it always going to be like this?”
She didn’t answer right away, but took my plate and glass and put them in the sink and rinsed them with water.
“There are always going to be jerks in the world, Auggie,” she said, looking at me. “But I really believe, and Daddy really believes, that there are more good people on this earth than bad people, and the good people watch out for each other and take care of each other.”

The story never addresses the fact that Auggie will never be cured of his medical condition.  He may need more surgeries in the future.  His hearing may fail completely.  We only follow Auggie during a short year of his life.

2 Reality.
Bullies don’t always switch schools (as happens to Auggie’s main tormentor).  The different child doesn’t always get a medal.  At one point, Via’s boyfriend reassures us that “the Universe takes care of all its birds…”  This, of course, is simply not always true. 

But the story does realistically portray that bad things can happen, even when the adults do everything right.

I disliked the ending of the story the first time I read it.  I thought it was overly saccharine and unrealistic, particularly the awards ceremony.  However, it grew on me the second time around.  This review from the New YorkTimes by Maria Russo helped:

Stories about unusual children who long to fit in can be particularly wrenching. At their core lurks a kind of loneliness that stirs primal fears of abandonment and isolation. But Palacio gives Auggie a counterweight to his problems: He has the kind of warm and loving family many “normal” children lack. […] It also helps that the Pullmans’ world — they live in a town house in “the hippie-stroller capital of Upper Manhattan” — is the privileged, educated upper-middle class, that hotbed of parents who hover and micromanage the lives of their perfectly fine children. It’s somehow weirdly satisfying to see what happens when something actually alarming enters this zone of needless anxiety. Palacio carves a wise and refreshing path, suggesting that while even a kid like August has to be set free to experience the struggles of life, the right type of closeness between parents and children is a transformative force for good.
But it’s Auggie and the rest of the children who are the real heart of “Wonder,” and Palacio captures the voices of girls and boys, fifth graders and teenagers, with equal skill, switching narrators every few chapters to include Auggie’s friends and his teenage sister, Via, who wrestles with her resentment, guilt and concern. “We circle around him like he’s still the baby he used to be,” she observes ruefully. And we see the vicious politics of fifth-grade popularity played out as the class bully targets Auggie and starts a campaign to shun him, culminating in an overnight school trip that turns scary and shuffles the social deck in ways no one could have imagined.

What I like about this review its reference to the “zone of needless anxiety”.  It is perhaps a valuable role for Auggie (and Jane)—to help others put their “problems” into perspective.  Is this what Auggie is saying in the last few lines of the book?

“I wasn’t even sure why I was getting this medal, really.
No, that’s not true.  I knew why.
It’s like people you see sometimes, and you can’t imagine what it would be like to be that person, whether it’s somebody in a wheelchair or somebody who can’t talk.  Only, I know that I’m that person to other people, maybe to every single person in that whole auditorium.
To me, though, I’m just me.  An ordinary kid.
But hey, if they want to give me a medal for being me, that’s okay. I’ll take it. I didn’t destroy the Death Star or anything like that, but I did just get through fifth grade. And that’s not easy, even if you’re not me.”
~~~

I was prepared to dislike Wonder, but in the end, I am glad I read the book, and glad that it exists.
It is a compelling fictional story, grounded in many realistic experiences, which emphasizes the importance of kindness. Maybe it does give others at least a glimpse into how it feels to appear unusual.

I was a little disappointed, though I’m not sure I can explain why.  Perhaps I had built it up too much in my mind.  Perhaps I had hoped too much that it would be thoroughly realistic.  The fact that so many had praised it, I thought it had the answers.  (Maybe it just doesn't have the answers for me.)
I had to keep reminding myself that it is, after all, a children’s book.  It is entertainment.

Perhaps I am a bit jealous.  After ten years of doctor's visits, MRIs, blood tests, experimental medicines, worry, uncertainty, advocacy, running, fund raising, and writing, I haven’t reached nearly as many people with my message and RJ Palacio has with hers.

With that thought, if you haven't already, please make a donation to the Children's Tumor Foundation.

P.S.  Here is the trailer for the movie version of Wonder, for those who are interested.  I have to admit, they’ve put together a brilliant cast <3