Sunday, December 21, 2014

Running Update:
5.1 mi
5.0 mi
8.0 mi
7.5 mi
7.6 mi
5.0 mi
5.1 mi
7.6 mi

Total for 2014:  1000.2 miles!  Yay!  I may still do a couple of short runs before we head to Canada for holiday celebrations, but I’ve reached my goal for the year. 

So now I can sing (with apologies to the Proclaimers):

But I would run five hundred miles and I would run five hundred more
Just to be the Mom who ran a thousand miles to find an NF Cure!

Jane/NF Update:
As you all know by now, we got good news again from our recent visit to NIH:  Jane’s tumor has decreased in volume another 8% since her last MRI in January!  That makes a total of 24% reduction since starting AZD6244.  Such a wonderful Christmas present!

A recap of Jane’s first nine months in this clinical trial:

10 cycles of experimental chemotherapy
16 blood draws
6 NIH visits
4 echocardiograms
4 dilated eye exams
4 EKGs
+             3 sedated MRIs
24% reduction in tumor volume!!

Jane is now considered a “partial responder” to the medication.  Here is the official note:

May it continue in 2015!

Happy Holidays, everyone.

Tuesday, December 2, 2014

NIH update addendum:
In an unprecedented turn of events, we’re back home in Connecticut this evening!

Our whirlwind day:
We started the day at the NIH hospital at 6:45am when Jane had her IV placed and blood drawn.  She went in for her MRI at about 8:15am and had the easiest induction of anesthesia that she’s ever had—just closed her eyes and went to sleep.  She was back in the recovery room by 10:00am and all seemed smooth sailing. 

However, half an hour later her nurse came in to the room and started asking all sorts of questions:  Had Jane had a fever in the past few days?  A sore throat?  All questions we had answered “no” to several times since arriving at NIH.  I wondered aloud why she was asking us again, and that’s when I learned Jane’s white blood cell count—a measure of infection fighting—was 22, more than double the normal value.  Jane had had the sniffles for a few days beforehand, but otherwise all her exams yesterday were normal.  Despite this, an elevated white blood count qualified Jane as an infection risk, and we were told we could no longer stay at the Children’s Inn, and that we may be sent home! 

By 11am we were meeting with our clinical team.  The good news was that the preliminary reading of Jane’s MRI seems to show that her tumor is smaller again, though we won’t have the final results until next week.  (I want to be excited, but I’ve been misled by preliminary results enough in the past that I am reserving judgment until we have the final.)  The bad news was that the MRI scan showed that Jane had an active sinus infection!  She was to be started on oral antibiotics, but it was confirmed that we couldn’t stay at NIH for fear of affecting other patients...

…which is why an hour and a half later we were on the shuttle to BWI airport!  Poor Jane!  She had just woken up from anesthesia, had a sinus infection brewing, and was made to endure shuttle bus, airplane, and car ride.  She was in rough shape by the time we finally arrived home—there’s a reason you’re not supposed to travel for 24 hours after anesthesia!!

Now that Jane is safely and comfortably sound asleep in her own bed, I’m glad we’re home early.  But I don’t ever want to do that again!  I have always been impressed by Jane's tolerance for discomfort, but today she truly amazed me with her strength and endurance <3

Monday, December 1, 2014

Running Update:
7.5 mi
3.3 mi
5.0 mi
7.5 mi
5.0 mi
5.1 mi
7.6 mi
A belated Happy Thanksgiving to everyone!  We continued our tradition (for the 6th year) of starting the holiday with our dear friends, Neil and Marcia.  Each year they visit the day before Thanksgiving and our children help them prepare a pre-race meal.  Then on Thanksgiving Day we all attend the Madison Turkey Trot!
Chopping kale

Measuring the pasta
Cooking sweet potatoes

After the race it was off to Grandma’s house, where we shared Thanksgiving dinner with my Aunt Anne and my mother (and her fabulous desserts).

50 miles to go to reach 1000 for the year—yikes!

NF Update:
Jane and I are back in Bethesda at NIH for Jane’s 2nd restaging.  We arrived yesterday and I was pleasantly surprised that the travel was relatively easy, despite it being the busiest air travel day of the year.

Today we spent 7 hours straight at the Clinical Center—we’re both pretty beat.  Our schedule today:
9am Vital signs and physical exam
10am Photos (to document her tumor’s appearance over time).  I took a few pics while the photographer worked :)

10:30am Eye exam.  I haaaaaaaaate the Eye Clinic (maybe more than Jane does)—having to hold still for so long while instruments take measurements of Jane’s optic nerve and retina;  and waiting, waiting, waiting in between each test.  We spent 2-1/2 hours there today.  Ugh.
1:15pm Pre-op clinic to meet the anesthesiologist who will take care of Jane during her sedated MRI tomorrow.
2:30pm EKG
3pm Echocardiogram

As we were leaving the clinical center after our last test, we noticed a display of gingerbread houses.  Apparently the NIH Clinical Center has a contest every year to see which department can build the best gingerbread house.  They were amazing!  There were several Frozen recreations, and even a scene of a gingerbread man having a CT scan (entered by the Radiology Dept).  Some of our favorites:
Macy's Thanksgiving day parade, in gingerbread

Lace-like frosting detail

"Anatomy of the Gingerbread Man"
Candyland reproduction

This was the show stopper.  Every few seconds a gumball would drop out of the clock tower, roll down the red candy chute, through the house, and land in the box at the front.

Jane held up remarkably well for such a busy day, but she finally crashed at dinner time.  We ate dinner in our room and turned out the lights early.  We had to skip the activities generously offered by the Inn:
--a Holiday Gift Shop, in which each child may “shop” for presents for their family members.  Each child may pick (and then are given) a certain number of gifts which they may then wrap themselves to give to their loved ones.
--Peppermint Bark making!

This trip has been made wonderfully more tolerable by spending time with another NF family at the Inn.  Jaden is 12 and has NF1 just like Jane, with a worrisome plexiform neurofibroma just like Jane.  He is in the same AZD6244 study, and started the trial the same week that Jane started!  As a result, we have often overlapped at NIH during our follow up visits, but this is the first time our trips coincided completely.  Jaden is having the exact same tests on the exact same days, and we bumped into him several times at the clinical center throughout the day today.  Jane is thrilled to have a playmate, but even better, a playmate who is going through exactly what she is going through.

It has been good for me, too, being able to talk face-to-face with another NF parent with a child experiencing similar trials.  It has given me courage and strength.  (Thank you, Pat!)

Hoping for a restful night because we have to be back at the hospital at 6:30 tomorrow morning for Jane’s MRI.  One unfortunate piece of news—the radiologist who usually interprets all of Jane’s scans is away, so we won’t know precisely how much Jane’s tumor has changed until she returns and is able to study the data :(

Jane Update:
On an unrelated note:  Jane finally lost her first tooth!  The tooth fairy did come, and left a glittery dollar bills (hat tip to another NF Mom, who mentioned that the Tooth Fairy does this for a first tooth in her household :)
The following day we discovered that Jane has another wiggly tooth!  When it rains, it pours.

Wednesday, November 12, 2014

Running Update:
5.0 mi
5.0 mi
5.0 mi
5.0 mi
7.3 mi
5.0 mi
5.0 mi
7.6 mi

I’ve been taking in easy since the marathon, but I’m still running.  I’m at 908.6 miles for the year, with a goal of 1000 miles for 2014.  That’s another 91.4 miles in the next 6 weeks—it will be close!  I do have one more race this year, the Madison Turkey Trot on Thanksgiving Day.  Todd and the kids will participate too—it’s become our family tradition.

A note to my local readers.  If you have ever passed by me in your car while I was running on the back roads of Madison or Guilford and I didn’t acknowledge you—I apologize!  I usually can’t see through the windshield of oncoming cars due to glare.  By the time I can see in the passenger side window and recognize the driver, you’ve already passed and it’s too late to wave.  Unless you have a distinctive car (say, a yellow jeep) or vanity plate (“12 PAWS”), I won’t know it’s you.  I almost didn’t recognize my own mother once until I noticed the familiar license plate!  There are also rare times when I am too exhausted or zoned out to acknowledge anyone.  It’s not that I don’t pay attention to traffic; it’s just that I focus on the car, instead of the driver.  Finally, if you drive by right as I’m belting out a song along with my iPod, even if I do recognize you I’ll pretend not to see you :)

Speaking of iPods, here’s a few more running-related songs on my playlist:

Yeah Yeah Yeahs “Zero”
Key lyrics:  “Can you climb, climb, climb higher?”

Vampire Weekend “Step”
Key lyrics:  “Step…”

Bleachers “Rollercoaster”
Key lyrics:  “Now I’m running and I won’t stop.”

Finally, I want to share a one-minute video from the New York Times that beautifully illustrates what it feels like after finishing a marathon:  After the New York City Marathon.  Quite amusing!

Jane Update:
We had an uneventful overnight trip to NIH in October just for blood work and a physical exam (no scans).  Jane has her monthly local check-up and blood draw tomorrow.  Our next big trip to NIH starts the Sunday after Thanksgiving.  We’ll be there for four days and Jane will have her full complement of testing:   blood work, physical exam, eye exam, EKG, echocardiogram, and MRI.  We’re hoping for at least a “stable” report, though of course would love to see even more reduction in her tumor size.                                                                                                            

NF Update:
It’s not too late to donate to our 2014 campaign!   Every dollar brings us closer to a cure for NF.  If you are looking to give to a worthy charity on #GivingTuesday (yes, that’s a thing now—the day after Cyber Monday), or any other time, for that matter, think of the Children’s Tumor Foundation!  Here’s the link:

Sunday, October 12, 2014

Running Update:
13.5 mi
4.9 mi
5.1 mi
7.6 mi
3.2 mi
26.2 mi

Another Hartford Marathon done!  It was 50 degrees and rained the entire morning, but I managed to finish the Hartford Marathon in 4 hrs 12 minutes.  Not my best time, but at least I have proven to myself that I can still run marathons!  The demons of Boston (and my sub-optimal finish there this spring) have been laid to rest.  Yay!

I’d never run a race in rain before.  Heat and humidity, yes.  Below freezing, yes.  And certainly I’ve trained in the rain before, but had never actually been unfortunate enough to run an entire 4+ hours in it.  The temperature actually would have been ideal for running, but it is remarkable how chilled I got from being wet that whole time.  Curiously, my legs weren’t the problem—it was my arms and hands that were distractingly, painfully cold.  (At least until I hit the wall at mile 24—then it was all about leg pain!)  Lesson learned—I’ll be wearing gloves next time.

My completed training plan (stains and all)
Approaching the finish
Crossing the finish line!
Greeting the girls after receiving my medal

Hartford Marathon 2014
For non-locals, this represents the State Capitol building (left) where the race starts, and the Soldiers and Sailor Memorial Arch in Bushnell Park (right) where the race finishes.

A few words of thanks:  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 putting up with spectating another road race, in the rain this time; and to my husband, Todd, who helped make it all possible <3

I’ll take a break from running for a week or two, but then hope to finish out the year with 1000 miles of running.  I’m at 863.9 for 2014 so far :)

NF Update:
With the marathon over, another fundraising season is coming to a close!  As I write we have $18981 in donations logged on our website for 2014.  I know of at least another $835 yet to be processed (the NFE offices have been closed for renovations), so altogether we’ve raised
for the Children’s Tumor Foundation this year!!  Thank you, everyone!
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:
Back to Bethesda tomorrow!  Jane has been having monthly check-ups and blood work here at home since July, but this month we have to make an appearance at NIH.  Just a quick overnight trip to have blood drawn and to meet with our team of caregivers.  Hopefully uneventful!

Friday, September 26, 2014

Running Update:
7.6 mi
7.6 mi
20.4 mi
7.5 mi
5.0 mi

     The Hartford Marathon is two weeks from tomorrow!  Did my longest run of the season last weekend, so I’m in taper mode now (though still have 14 miles to run this weekend…)

     Hartford will be marathon #7 for me.  At this point in training usually I do find a little bit of dread creeping in to my psyche.  Marathons hurt!  And recently that got my Ob-Gyn brain thinking:  running a marathon is not unlike childbirth.  Months of preparation, physical challenges, dietary restrictions and other deprivations leading up to a single life-changing event.  (Not to mention the similarities in the post-event recovery:  sore muscles, abrasions in unpleasant places, days before you can walk normally…)
     Like giving birth, running a marathon seems worse the second (and every subsequent) time around because you know what’s coming.  In preparing for your first marathon (or childbirth) you are blissfully ignorant.  Yes, you have done your homework and heard the horror stories, but you still lack first-hand knowledge of the mental and physical anguish involved.  Then, just like after the birth of a child, you are on an emotional high after the first marathon, and somehow, after the physical hurts have healed, the memory of the pain fades and you only remember the triumphant end result.  And in a few months you’ve forgotten all about the misery and sign up for another one.
     For your second (and every subsequent) marathon (birth), you do well through the first few months of preparation.  The event itself seems distant.  As the last few weeks of training (or to the last few weeks before your due date) approach it suddenly hits you—you have to run an actual marathon (push an actual baby out) again.  You think, “Oh yeah.  Dang!  I forgot about that part.  Why did I sign up for this?” 
     And just like birthing babies, with every year you age marathoning  gets harder and harder.  “AMA”, the abbreviation of the obstetrician’s euphemistic “advanced maternal age”, could easily stand for “advanced marathon age”.
     Food for thought!

Jane/NF Update:
     Busy week for Jane.  She had her monthly check up with pediatrician (normal), monthly blood work (mostly normal), and 6-month hearing test at Yale (mostly normal).  We return to NIH in two weeks (two days after the marathon!) for a quick visit—just physical exam and blood work.  It won’t be until our next big trip to NIH in December that Jane will have an eye exam, EKG, echocardiogram, and MRI.

Sunday, September 14, 2014

Running Update:
9.1 mi
5.0 mi
15.0 mi
Less than a month until the Hartford Marathon!  I’ve got a 22 mile training run planned for next weekend and then I get to taper.

Jane and NF Update:
Yesterday was the 2nd Annual NF Walk in Putnam, CT!  It was the first official NF event we’ve attended as a family.  Todd and the kids always attend my running races, but usually I am the only person at these events fund raising for the Children’s Tumor Foundation.   The NF Walk was attended only by people supporting the Children’s Tumor Foundation!  At first Jane seemed a little self-conscious.  I don’t think she knew what to expect (nor did I, for that matter…), but shortly after we arrived the walk’s organizer, Rhianna Curotto, gave Jane a NF Hero cape and streamers, and she was off!

Face painting

Showing off her butterfly

By the Quinebaug River

Aunt Anne came all the way from Boston to walk with us!

Aunt Anne and Grandma Ag

The walk was an out-and-back stroll along the Quinebaug River, and our family walked in the middle of the pack.  When we reached the turn-around point, Jane noticed that the parade was being led by three kids holding a CTF banner.  She asked, “How come they get to be up front?”  I told her there was no particular reason, that she could walk up front if she wanted.  Before I knew it she had gone up to the trio and asked if she could help carry the banner, too!

After the walk we enjoyed a cookout and raffle.  Jane spent the rest of the event dressing up in the photo booth and taking pictures with her new friends.

Dressing up for photos

Each person at the walk who has neurofibromatosis was given a medal.  Jane was happy to accept hers.

Jane won a basket of crafting items, including a small photo album.  That night, after we were home, she put all her photo strips in the album and carefully labelled them “NF Walk 9-13-14”.  She pointed to the pictures and said, “This girl had the tumor, too.”  I think, in her own way, Jane was very happy to finally have met other children affected by NF.