Thursday, December 24, 2015

Running Update:
5.0 mi
13.2 mi
7.6 mi
5.1 mi
10.4 mi
5.0 mi
Grand total for 2015:  1005.2 miles!  Hooray!  I will probably get a few more miles in before we head to Canada for the remainder of the holidays, but I was glad to hit the 1000 mile mark by today.  This is my third year in a row to run 1000 miles!  So again I will sing (with apologies to the Proclaimers):

I would run 500 miles
And I would run 500 more
Just to be the Mom who ran 1000 miles
To find an NF Cure!

NF Update:
Our family was honored yesterday to be involved with the Haddam-Killingworth High School Holiday Show and Telethon (  Every year for the past 27 years this local high school has hosted and broadcast the program with a goal of raising money and awareness for a non-profit organization.  This year they chose to benefit and promote the Children’s Tumor Foundation!  The stories of four Connecticut children with NF were included in the show.  As a result, our family was interviewed by two very talented seniors, Jordan and August, who acted as both reporters and camerawomen.  You can see the end product here or at the link above.

Every day from now until January 4th the show is being aired three times a day—8am, 2pm, and 7pm—without interruption.  Our piece starts around the 2 hour mark (shortly after a red-nosed children’s chorus), so if you tune in to the streaming you can see us around 10am, 4pm, and 9pm EST each day.  (After the holidays you will be able to pull up any segment of the show any time.)

I was blown away by the scale, quality, and professionalism of this production.  These students and staff are amazing.  The whole school was involved, from answering phones to operating the cameras to providing on-air entertainment to holding applause signs!  What a great experience for these kids.  Even more impressive was the fact that during the live broadcast the telethon raised over $14,000 for CTF!

Jane Update:
I’ll end with the best image we got from 2015: the graph of Jane’s tumor decrease.  Hopeful for this continued trend in 2016.  Happy Holidays, everyone!

Look at that beautiful downward slope!

Wednesday, December 9, 2015

Another NIH visit on the books.  Here’s the recap:

We checked in to the Children’s Inn at NIH on Sunday afternoon and had quite an evening there.  At dinner we enjoyed the music of the Augmented Eight (former singing group of our friend Ed!)  Later Jane was allowed to "Shop with a Cop"--members of a local police department brought the children through a "store" where they could pick presents for family members and wrap them.  Jane was so proud!  We got to bed early in preparation for a big day of testing.

Jane with the gifts for her family
We started Monday off at Photography.  Jane has pictures taken every 6 months to document any changes in the appearance of her tumor.  I get to snap along with the photo shoot on my phone.

Next was Eye Clinic.  This visit, aside from the MRI, is the longest appointment of the day.  The wait is long, and the check-up itself involves a visual acuity test, a retinal scan, a dilated fundus and a slit lamp exam.  We easily spend two hours there.  Luckily, just as we arrived one of the office staff was starting to decorate the Christmas tree in the waiting room.  Jane gamely asked if she could help, and thus she was happily entertained during our wait.  Upshot of this check-up:  Jane’s eyes are normal.

Making the Ophthalmology Department a brighter place

Next was EKG and then Jane’s cardiac echo.  Both normal!

Waiting for the ultrasound tech
We were thrilled to discover that we arrived at NIH just as its annual Gingerbread House Competition started!  Last year we were so impressed by the creativity of the various NIH departments in the construction of their houses.  We were not disappointed this year, either!  We perused the displays in between appointments.  Some of our favorites:

This was my favorite.  Little gingerbread people running a marathon!

Jane's favorite.  When you pressed the M&M on the control panel, Mario jumped and music played.

Gingerbread Hogwarts

Finally the MRI.  The wonderful news:  JANE STAYED STILL FOR THE WHOLE STUDY!  A half an hour and no need for sedation.  Hooray!  The days of general anesthesia for her MRIs are over.  I think you could probably hear me cheering all the way from Bethesda!  I guess the 18th MRI’s the charm :)  We are all so proud of Jane, and she was proud of herself, too.  We won’t have the results of the MRI for a few days yet, but we couldn’t be happier to have this test behind us, and to have the prospect of a sedation-free future.

With no need for a sedated scan on Tuesday, and with blood work done the night before (all normal), Jane and I found ourselves with a free day!  As we rarely get a chance to sightsee in DC, despite our many trips here, we tried to make the most of it.  We slept in and had a leisurely breakfast, then hit the town.  We took the Metro from the Medical Center all the way to L’Enfant Plaza (an adventure for Jane in itself) then spent the morning at the Air and Space Museum.

Flying a plane

Having fun on the Mall

We wandered around the Mall for a bit taking in the sights, but didn’t visit any other landmarks as we wanted to get back in time for a field trip with the Children’s Inn.  The Inn took us by bus to the National Harbor, where we visited an enormous ice display.  The exhibit boasted two million pounds of hand-carved ice sculptures, including five ice slides.  It was a unique, albeit chilly, experience.

As usual, during our visit we met many wonderful and inspiring children and families from distant places with various medical conditions, but we were especially pleased to get to know another NF family during this stay.  T is a little boy from Utah with NF1 who is Jane’s age and who has Jane’s same tumor in a very similar location to hers.  This was his first visit to NIH, and he and his family are hoping to enroll in the same clinical trial as Jane’s.  He had never met another child with NF—I was happy that Jane could be the first!  Jane sat next to him at dinner, shared a seat home with him on the bus, and they became fast friends.  T’s parents and I overheard them explaining to a fellow passenger that they had the same tumor--they pointed to his on his neck and hers on her cheek--but that they were both going to be taking the same medicine to shrink them.  A heartbreaking level of understanding.

Jane and T

Playing "Rock, Paper, Scissors" on the bus

I will update again once we get results from Jane’s MRI later this week.  Meanwhile, we are relieved to be headed home and glad that our next visit is not until March.

When we landed in Hartford I had the following message waiting for me from NIH:
“We don't have the official report just yet, but I'm sure Dr. D will have it soon.  Her tumor is down by 33%!!  Baseline 290mL and current: 193mL. Great news!”


What fantastic news!  And what a great way to enter the holiday season!  We couldn’t ask for a better Christmas present <3 <3 <3

Friday, December 4, 2015

Running Update:
5.0 mi
12.4 mi
5.0 mi
7.6 mi
8.7 mi
5.1 mi
5.0 mi
13.2 mi
7.5 mi
5.1 mi

Up to 959.0 miles for 2015.  Still plugging along…

Jane Update:
We’re having a lovely start to the holiday season!  We celebrated Thanksgiving in our usual fashion:  Wednesday night a home-cooked pasta dinner with our good friends Neil and Marcia, the Madison Turkey Trot Thanksgiving morning, and then Thanksgiving dinner with Grandma Ag and Aunt Anne.  Tomorrow we’re heading in to New York to enjoy Grandma’s Christmas present to our family—tickets to the Radio City Christmas Spectacular!

NF Update:
Jane and I travel to Bethesda again this weekend for a four day, restaging visit.  Here is our itinerary for the first day alone:
8:00am – Photography, Room 1N230, 1st floor
9:00am – Eye clinic, Outpatient clinic, 10th Floor
11:00am – Physical exam with Fellow B, Pediatric clinic, 1st Floor
11:30am – EKG, Radiology, 1st Floor (or during free time)
12:30pm - Lunch
1:00pm – Cardiac Echo, 5NE, 5th Floor
2:00pm – Pre-Anesthesia, Room 2C523, 2nd Floor
3:15pm – Non-sedated MRI (Face, sinus, ENT), Radiology 1st floor
I am exhausted just thinking about it, and I’m not even the one having the testing done!  I am hopeful that Jane will be able to hang on and lay still through the MRI scan—she’s done so well in practice.

If the non-sedated scan is adequate, we’ll have the following morning off from testing, since it is being reserved for a sedated scan only if it is necessary.  If we have the morning free we might even venture into DC to do some sightseeing!


Other NF news, we were invited to participate in a fund-raising telethon being run by a local high school!  Every year Haddam-Killingworth High School puts on a Holiday Show and telethon to raise money and awareness for various charities.  This year they have chosen to support the Children’s Tumor Foundation!  They plan to feature several Connecticut children with neurofibromatosis.  This week two seniors from H-K high school came to our house to record and interview Jane, Todd, and me, about daily life with NF.  Check out their progress here (, and watch this space for the broadcast!

Wednesday, November 11, 2015

Running Update:
4.9 mi
5.0 mi
9.1 mi
7.6 mi

Still plugging along.  115.5 miles to go in order to reach 1000 this year
NF Update:
Yesterday the kids had a half day of school, so we visited Todd at work so that Jane could have another practice MRI before her next real MRI at NIH in December.  She hopped right up on the MRI exam table, instructed Todd as to how to arrange the pillows for her head and knees, and allowed herself to be pushed into the scanner without a second thought.  I sat next to her so I could hold her hand, or tap out a rhythm on her foot along with the sounds of the machine, or pass Puppy to her if she wanted to snuggle him.  Once again she stayed still for 30 minutes’ worth of imaging!  Bring it on, NIH—Jane’s ready for a non-sedated scan!!

Some random thoughts on hair…             
Jane's chemotherapy makes her hair thin and brittle—this is why we keep it short (so you don't notice the bald patches as much).  It also has the curious effect of turning her hair blonde.  While this style might suit Jane, and while some people might think having blonde hair is a perk, it is a constant reminder to me of the powerful medications we are putting into her body.  

Don’t get me wrong—I am very grateful that this medicine seems to be keeping her tumor stable, and that it doesn't have some of the awful effects of some of the other chemo she's taken in the past (frequent nausea, vomiting).  But it still makes her itch terribly at times; it affects her taste, and makes her tire more easily.  And I look longingly (perhaps even though she's doesn't seem to) at all the other little girls she knows, with their hair in flowing pony tails.

I am somewhat placated by the fact that I had short hair myself when I was Jane’s age (thanks to Dorothy Hamill).
I feel a pang every time someone compliments her hair, because it's all I can do not to blurt out, "It's because of her chemotherapy!  I wouldn't have it this way if it were up to me!"  But that's not fair to the well-meaning individual.  After all, she does look adorable, and how would anyone else know it’s because of chemo?  These are thoughts I sometimes struggle with.

Jane (and family) Update:
The fall soccer season ended this past weekend with a bang.  All three kids had games, as usual, and then we had a chance to see both the Yale Men’s and Women’s soccer teams play their last home games of the season!  It was a late night, with the Men’s game going into two overtimes (it ended in a tie against Brown), but very exciting.  The kids were even allowed on the field after the game to talk with the players and to get their autographs :)

Readers of this blog may have noticed that Helen has become more camera shy of late, so here are a couple of pictures of Helen in action on the soccer pitch.  She plays defense, and has a remarkable kick!

Sunday, November 1, 2015

Running Update:
7.6 mi
7.6 mi
5.0 mi
9.1 mi
5.0 mi
13.1 mi

Yesterday I ran in the inaugural Madison Half Marathon and had a wonderful experience.  There were over 1000 runners—quite a turnout for a first race!  It was a beautiful day and a great course, starting at Hammonassett State Park, traveling along the Shoreline Greenway Trail, and following the surfside roads in Madison.  I had expected to run without my family there, but my mother surprised me by waiting for me at the finish line.  (Best Mom Ever.)  And I set a personal record!  I always worry after a disappointing race (eg Hartford 2015) that I’m getting too old for racing, but yesterday’s half marathon gave me new hope that I’m not done yet!

Next up:  the Madison Turkey Trot on Thanksgiving, and finishing up 1000 miles (I’m at 857.9) for 2015.

Jane Update:
Happy Halloween!  Just a few pics from our holiday.

Blonde Ginny Weasley

At the bus stop with our neighbors.  Have you ever seen such adorably scary costumes?

Ready for Trick or Treating

Jane with her brother, Professor Severus Snape (who is purposely acting the part)

NF Update:
Jane’s blood work and check-up at NIH were all good this month.  We’re planning one more practice MRI at home in about a week in preparation for December’s (hopefully) non-sedated MRI.

An exciting development at the Children’s Tumor Foundation this week:  Bobby Gill was selected for the cover of Runner’s World magazine for the month of November!  Gill is one of the founders of Cupid’s Undie Run, a huge fund-raising event that benefits CTF in which participants run about a mile, in their underwear, in February!  Since it started in 2010, Cupid’s Undie Run has spread to over three dozen cities in the US and abroad, and has raised over 8 million dollars.  See the story behind the cover here, or visit

Of course, if you would like to donate to the Children’s Tumor Foundation, you can always do so through our fund raising site :)

Sunday, October 11, 2015

Running Update:
18.2 mi
5.0 mi
9.2 mi
5.0 mi
26.2 mi
Another Hartford Marathon in the books!  Yesterday was an absolutely gorgeous fall day in Connecticut.  It was sunny, breezy, temperatures in the 50s—a perfect day for running!  I didn’t finish in the time that I’d hoped, but I did feel strong for most of the race.  I was sidelined for several minutes with a leg cramp at mile 24, and had to wait for it to pass before I could continue on.  Cursed electrolytes!  Will just have to try again next year.
Before the start, with my running partner, Neil

Crossing Founders Bridge at mile 6
Nearing the finish

My Mom and Aunt Anne cheering me on at the finish!
Crossing the finish line

With space blanet and medal

A few words of thanks to the usual team members:  to Neil, my virtual running partner, who qualified for Boston again yesterday; his wife, Marcia, who is our one-woman marathon support crew; my mother and aunt, who are my tireless cheerleaders; my kids, for spectating yet another road race; and to my husband, Todd, who helped make it all possible <3

Next up: the inaugural Madison Half Marathon on Halloween (assuming I’m recovered by then).  I always think it’s fun idea to participate the first time a race is run.  Then one has the potential, if one is dedicated, to be lauded in some distant future for having run all of the annual versions of that particular race.  (For example, there were three individuals at yesterday’s marathon who’ve run all 22 Hartford Marathons.  Wouldn’t it be cool to be able to claim that?)

NF Update:
With the marathon over, another fundraising season is coming to a close.  As I write we’ve raised
for the Children’s Tumor Foundation this year!  Thank you, everyone for your generous support!

PS  It’s never too late to donate!  I’d love to see us top $20,000 this year!  Here’s the link:

Jane Update:

Because NF never takes a break, we never take a break—Jane and I head back to Bethesda tomorrow for an overnight stay.  Jane will have a physical exam and blood drawn, and we’ll meet with our team of caregivers.  Hopefully it will be an uneventful trip.  Our next restaging visit (with MRI) won’t be until December.

Saturday, September 26, 2015

Running Update:
20.6 mi
7.6 mi
5.0 mi
Two weeks until the Hartford Marathon—yikes!  I hope to run 18 miles tomorrow, then will officially start to taper.

Jane Update:
Today was the 3rd annual Connecticut NF Walk in Putnam, CT.  What a beautiful day!  Thank you to Rhianna Curotto, the president of the CT chapter of the Children's Tumor Foundation, for making it happen.  It is wonderful to get together with so many other people who have NF themselves, or whose loved ones have NF.  Helen and Alec were very supportive big siblings, and Jane had a blast meeting new friends, re-meeting a few old ones, having her face painted, taking pictures in the photo booth, and leading the walk carrying the Children’s Tumor Foundation banner.  I met in person another NF Mom who I’ve known for some time only online—what a thrill!  Her three year old is taking the same experimental medication that Jane took when she was three.  It feels good to be able to talk to someone who is in such a similar position.

My NF Superhero

Holding the sign with another Fighter

Jane and I with one of the organizers, Sarah

With painted face

Jane with her NF Walk buddies

Jane's favorite activity at the event--the photobooth!

I overheard one little boy, who’d come to support a friend, asking his mother, “What’s a tumor?”  His mother said, “It’s an abnormal growth,” and I volunteered, “It’s a kind of bump.”  I quietly asked Jane, who was walking beside me, how she would feel about showing him her “bump”.  Without hesitation she presented her cheek to him, and said, “This is what a tumor is.”  He smiled and thanked her for explaining :)

NF Update:
Jane and I return to NIH for blood work and a check-up two weeks from now, right after the Hartford Marathon.  If you haven’t already donated this year to our fund-raising campaign to End NF, PLEASE DO SO!!  Here is the link:  

Wednesday, September 16, 2015

Blog Post 9/16/15:  the Harry Potter version.

Jane (and Family) Update:
The kids had an unusual four-day school break this week (even though school just started), so we took advantage of low fares and headed to Orlando, Florida to visit the Wizarding World of Harry Potter!  All three kids—and I, of course—are Harry Potter crazy, and we’d never been to Florida together, so it seemed like a perfect occasion to travel there.

The excitement started as we were getting off the plane in Florida and the PILOT RECOGNIZED JANE!! His daughter goes to Jane's school! He let us see the cockpit!

Once at Universal Orlando we had the time of our lives.  We explored the shops in Diagon Alley and Knockturn Alley, entered Gringott’s Bank, rode the Hogwarts Express, and visited Hogsmeade and Hogwarts castle.

Wands at the ready

Boarding the Hogwarts Express

Jane considering Beauxbatons over Hogwarts

Randomly bumped into my cousin, Anne, in Olivander's wand shop!

If you are not Harry Potter crazy, you may choose to skip this next story:

Several times we attended a small performance at Olivander’s in which one of the “Wand-Keepers” re-enacted the scene in the shop when Harry purchased his first wand, except a child from the audience was selected to participate in Harry’s place.  During one of the shows BOTH Alec and Jane were selected to have a wand “choose” them.

Alec went first.  The Wand-Keeper (a witch, by the way) gave him a wand—willow, with a dragon heartstring core—and asked him to levitate some wand boxes.  However, when Alec commanded, “Wingardium Leviosa!” a stack of boxes fell from the shelf!  Then Jane was given a wand to try—holly, with a dragon heartstring core—and she was asked to lighten the room.  When Jane shouted, “Lumos!” she started a lightning storm!  The Wand-Keeper then had an inspiration (“I wonder…”), and switched the wands.  Both wands shone and a magic wind blew, and we knew then they had been given the right wands...

The wand keeper went on to say that having been chosen by a holly wand indicated that Alec would make a good leader, and that a willow wand indicated that Jane would be valued for her friendship and cooperation.  Finally, she announced the fact that the dragon heartstring in each of their wands came from the same dragon meant that they would always be loyal to each other.

Of course, I ate it all up :)

Jane's wand misbehaving

NF Update:
We Braved the Escape from Gringott's ride one morning. The porter at the entrance appeared to have a classic trigeminal plexiform neurofibroma, so I stopped to talk to her. I told her my daughter has NF, and she said that she did, too! She said hello to Jane, and then she let us go to the front of the line :)

Running Update:
9.1 mi
2.7 mi
3.3 mi
3.2 mi
3.3 mi

Yes, I ran while we were in Florida.  I didn’t want to get behind by too many miles, since the Hartford Marathon is less than a month away.  Plus I had to burn off some of that Pumpkin Juice and Butterbeer!  We had downtime each afternoon after spending the morning in the park, so the kids cooled off in the pool while I ran.  I was afraid to run on the city streets (I found the presence of sidewalks inconsistent) and jogging isn’t allowed in the park, so I limited myself to a three mile loop around the hotel complex.  It was quite lovely, through gardens and along a man-made river, and with little, tiny lizards scattering from my path as I ran—I don’t see that in Connecticut.