Tuesday, December 24, 2013

Running Update:
Tally for December
12/1  5.0 miles in 43:37
12/4  5.0 miles in 47:29
12/6  4.9 miles in 46:44
12/8  7.6 miles in 1:10:02
12/11  5.0 miles in 45:54
12/13  4.9 miles in 47:36
12/15  7.5 miles in 1:12:45
12/17  4.9 miles in 45:51
12/20  5.0 miles in 46:55
12/24  5.0 miles in 46:69

Tally for 2013
1005.4 miles in 156:19:18!  May still do one more quick run before we head to Canada for the holidays, but otherwise that’s a wrap!

Jane Update:
Jane had a hearing check-up last week and I am happy to report her hearing is stable :)

A sleepy Jane during her hearing test...

...and a happy Jane with her favorite after-testing treat!


NF Update:
Was touched to receive a phone call out of the blue from another NF Mom in California.  She had read about Jane and me in the Children’s Tumor Foundation End of the Year letter, then had looked me up and called me.  She wanted to share her daughter’s experiences with NF (she has very similar tumors to Jane’s) and her experience with the medication Gleevec.  It is contacts like these that make everything that I am doing for the Children’s Tumor Foundation worth it!  It makes living with NF so much more tolerable to know we are not alone.  On that note, I’d like to thank the members of the NF Mom’s Rock! support group for their daily comfort, advice, and encouragement.  Thank you also to the hardworking ladies at the CTF NF Endurance team—you are amazing and your efforts are so appreciated.


Love to everyone!  See you in 2014!

Thursday, November 28, 2013

Running Update:
11/8  5.0 miles in 42:57
11/10  7.6 miles in 1:12:23
11/13  5.0 miles in 45:11
11/16  7.1 miles in 1:03:33
11/18  4.9 miles in 44:47
11/20  5.0 miles in 43:29
11/22  5.0 miles in 45:08
11/24  3.1 miles in 27:54
11/28  5.0 miles in 42:00    
Happy Thanksgiving!  Today I was gently reminded by a friend that I haven’t posted since the beginning of November, so here is the tally.  Less than 50 miles to go to 1000 for 2013.
It was a bright though chilly and windy morning at the Madison Turkey Trot, but I ran a personal best!  Even better, my husband Todd ran today, too, his first road race in many years—and beat me, of course :)

Jane Update:
Jane, Alec, and Helen all got into the act, too, walking the Turkey Trot two-mile Family Fitness Walk with our dear friend, Marcia.  Had to warm up with hot chocolate once we got home.  No pictures from the event as we were all participating!

NF Update:
Jane and I are featured in the Children’s Tumor Foundation holiday letter!

Wednesday, November 6, 2013

Running update:
10/23  5.0 miles in 44:42
10/25  5.0 miles in 43:25
10/27  7.6 miles in 1:07:49
10/30 7.2 miles in 1:05:29
11/2  4.7 miles in 41:58
11/5  5.0 miles in 46:07
Have cut back quite a bit since the marathon, but want to maintain some level of fitness as training for Boston begins again in December!  Am still planning to run the Madison Turkey Trot on Thanksgiving—our family tradition—despite trying to rest an injured shoulder.
Am at 903.1 miles for 2013, hoping to make 1000 by the end of the year!

Jane update:
Just some fun pics of Jane from the last couple of weeks.  Soccer season winding down.  Here’s Jane and her teammates on a particularly blustery fall day:

A triumphant Halloween.  Jane’s math homework that night was to tally her five favorite candies from her haul:


NF update:
Have scheduled our return trip to Indiana University for the beginning of February.  Jane has tolerated Gleevec remarkably well this year—hope it’s doing some good.

Wednesday, October 16, 2013

Running update:                                      
10/12/13  The Hartford Marathon!  26.2 miles in 4:10:00!
It was a gorgeous day in Hartford!  We couldn't have asked for better weather—sunny, breezy, mid-60s.  (Last year it was freezing--28 degrees at the start!)  I had a great run, felt strong.  I faded in the last two miles so didn't set any personal records, but finished faster than I did in Boston.  I was sore for a couple of days, but not as much as I remember from previous races.  (Getting stronger?)





NF update:
The best news of all:  we raised over $17,000 for the Children’s Tumor Foundation this year!  Thank you to everyone who supported us!  With your help we will find a cure for NF!

Jane update:
Jane received a postcard from her principal today!  Had to share it :)



Alec update:
Have to highlight another athlete in the family!  Alec’s soccer team got to play a short game under the lights on the turf of the new playing fields in Madison.  Look at that kick!


Wednesday, October 9, 2013

Running update:
9/25  5.0 miles in 45:43
9/27  5.0 miles in 43:49
9/29  14.8 miles in 2:24:27
10/2  5.0 miles in 45:39
10/5  7.6 miles in 1:11:57
10/9  5.0 miles in 46:39
Last run before the Hartford Marathon!
Hoping for weather like today:  sunny, dry, mid-50s.
This is the bracelet my oldest daughter, Helen, made for me to wear in the marathon.  She said, “I made it with NF colors!”  So proud of her :)



Jane Update:
Jane had her three-month Gleevec check-up and blood work with our hometown pediatrician last week.  The appointment was first thing in the morning, and we had planned to bring Jane straight to school afterwards.  I remembered to bring lidocaine cream to numb her arm prior to the needle stick, but forgot one key item vital to blood drawing success—Puppy!  When Jane was in Kindergarten she had brought her favorite stuffed animal, Puppy, with her to school every day, so I never had to think twice about Jane having him with her.  But now that she’s a “big” first grader, she no longer carries Puppy in her backpack.  On our drive to the lab Jane asked, “Where’s Puppy?!”  When I told her I’d forgotten him, she said, in a small, resigned voice, “It’s OK.  I’ll snuggle with my jacket instead.”  So brave and resilient!




NF Update:
I attended my first Children’s Tumor Foundation fund-raising dinner last week!  I'd never actually been to an NF benefit (or any kind of benefit, for that matter) before--it was wonderful to meet some other families and individuals with NF, and to see so many people supporting our cause!  I was thrilled to meet the president of the Children’ Tumor Foundation, John Risner, too!  He thanked me for my fund-raising efforts :)

Sunday, September 22, 2013

Running update:
9/6  5.0 miles in 43:01
9/8  18.0 miles in 3:00:09
9/11  9.6 miles in 1:32:47
9/13  4.7 miles in 44:17
9/15  10.2 miles in 1:34:24
9/18  7.6 miles in 1:12:45
9/20  3.1 miles in 30:44
9/22  22.2 miles in 3:42:05!  Whew!  It’s time to taper!

Running-inspired songs from my playlist, volume 2:
(To see volume 1, go to my original blog, and read the post from 3/22/13.)

The Killers “Runaways”
Key lyrics:  “Maybe I’ll just run…”

The 1975 “Chocolate”
Key lyrics:  “We're building up speed as we're approaching the hill.” and “No, we’re never gonna quit…”

Biffo Clyro “Black Chandelier”
Key lyrics “We’re always running…”

Daft Punk “Doin’ It Right”
Key lyrics:  “Everybody will be [running].”

Fitz and the Tantrums “The Walker” 
Key lyrics:  “Crazy's what they think about me, ain't gonna stop cause they tell me so, ‘cause 99 miles per hour, baby, is how fast that I like to go.”

Matt & Kim “Cameras”
Key lyrics:  “Don’t forget to breathe now.”

Dan Croll “From Nowhere”
Key lyrics:  “Every now and then I fall a bit behind.”
(Oops!  Not the last one...)

Jane update:
I recently signed Jane up with the NF Registry, a database of individuals with NF that has a goal of better understanding NF as a disorder.  One of the questions asked was “Have you ever suffered from itching?”  Oh my goodness, yes!  Jane is always itching!  I thought it was just dry skin!  I dutifully slather her with moisturizer after every bath, in all seasons, with only marginal effect.  I couldn’t understand why Jane’s brother and sister don't experience the same—I had no idea that itching could be a side effect of NF.  I confess, I was pretty disgruntled to learn of the association.  What, disfiguring tumors aren't bad enough?

NF update:
Some inspiring news regarding the generosity of strangers:  Those who read this blog regularly know I was in our local paper a few weeks ago as "Person of the Week" (link here) and got to talk about NF and my fund raising.  Well, a kindhearted gentleman who I’ve never met saw the article and called me last week saying he wanted to help!  He owns a condominium in the Cayman Islands, and four times a year he donates vacation time there to a different charity for auction.  I was amazed!  It will be part of a silent auction during the Ladybug Annual Benefit Night for the Children’s Tumor Foundation on October 3rd on Long Island.  (If anyone would like to attend and/or bid, more info is here:  http://grow.ctf.org/Ladybug2013)

Will end with a happy photo from our friend Olivia, who spent yesterday afternoon with the kids at the Madison town beach :)
Sisterly love!


Monday, September 2, 2013

Running update:
9/2/13  12.6 miles in 1:59:44
Had our first race of the season today!  It was a very hot and wet 20K New Haven Road Race this morning—amazing how many people still came out to cheer us on.  Thanks to Todd and the kids, my Mom and Aunt Anne for waiting in the rain to see me run past!  I was two minutes slower than last year, but at least I squeaked in under 2 hours…

Me at the start (in the blue CTF shirt, waving)

Me at the finish!


Alec update:

Alec lost another tooth this afternoon!  Tooth Fairy comes tonight :)

Friday, August 30, 2013

Running update:
8/25  18.2 miles in 3:00:02
8/28  7.2 miles in 1:07:00
8/30  7.5 miles in 1:12:55
The 20K New Haven Road Race this weekend!  This is the fifth NHRR that I’m running for the Children’s Tumor Foundation, but I had run it once before twenty-something years ago.  I recently found a picture of myself at that race, at the tender age of 19:



Jane update:
School started this week!  Jane started first grade at a new school, and took the bus for the first time.  All the kids seemed to have a great first day.  We’re looking forward to a wonderful year.





NF update:

At orientation Jane’s new teacher asked me how I wanted to handle inquiries from other children about Jane’s tumor.  I told her I was hopeful it wouldn’t be an issue, but that if another child did ask, Jane may be able answer for herself.  That night I asked Jane what she would say if someone asked why she took medicine.  She said, "For my cheek".  I asked why she took medicine for her cheek.  She said, "Because it's puffy."  I asked if she knew why it was puffy.  She said, "Because I have a boo-boo?"  I asked her if she remembered us talking about NF (which we have done in the past), but she said no.  I told her if someone asked her why her cheek was puffy, she could say, "That's the way it grew."  I told her the reason was because of NF, which is a condition that can make people's cheeks puffy or can cause other bumps.  Later, I asked her again what she might say if someone asked her about her cheek, and she said, "That's the way it grew."

Well, I didn't think the issue would come up again so soon, but when I picked Jane up after the first day of school an older boy (maybe 3rd or 4th grade) asked me (and Jane), "What's wrong with her cheek?"  Jane immediately answered, "That's the way it grew!"  (She's such a good girl!)  Unfortunately the little boy persisted (innocently), "But why did it grow that way?"  I confess I wasn't prepared!  I tell adults about NF all the time, but wasn't entirely sure how to explain it to another child, especially with Jane present.  I said, "Well, she has a condition that made her cheek grow that way."  He accepted this answer, and said, "That's too bad."

(As an aside, during my conversation with Jane the night before, she said, "Maybe I could puff up my other cheek to make it even."  I told her absolutely not!  I told her her cheeks were beautiful as they were, and not ever to believe anything different.)

I think I was spoiled having Jane in the same school for so many years!  I thought I was prepared for this transition, but obviously not.  Still lots to learn.

Saturday, August 24, 2013

Running update:
8/14  7.5 miles in 1:10:14
8/16  7.6 miles in 1:15:10
8/18  10.3 miles in 1:39:36
8/21  7.5 miles in 1:13:44
8/23  5.1 miles in 46:28
Gearing up for my long run tomorrow:  18 miles.  Oof.

NF update: 
This week I was interviewed by our local newspaper as “Person of the Week”!  (Thank you for nominating me, Janet!)  The reporter described Jane’s experience with NF and my fund-raising efforts for the Children’s Tumor Foundation.  Here is the lovely article: The Source August 21, 2013 Person of the Week.

Jane update:
Not long ago I had a dream that I was back in medical school listening to a lecture on neurofibromatosis.  The professor described the potential complications of NF:   neurofibromas, skeletal dysplasias, optic gliomas, scoliosis, learning disabilities, pheochromocytomas, epilepsy.  I turned and found that Jane was sitting next to me, recoiling in horror at his words.  She asked me, “Is that what I have?!?”


When the article in the Source came out this week my husband Todd read it aloud to the family after dinner.  I cringed inwardly when Todd read my description of NF.  Thankfully, Jane was half-listening, focused instead on her dessert.  The big words didn’t mean anything to her.  Jane knows she has “NF” and that she has to take medicine because of her cheek, but right now that seems to be the extent of her comprehension about her condition.  Hopefully she’ll gradually discover little bits at a time about NF as she gets older, and never be bowled over with all the information at once like she was in my dream.

Tuesday, August 13, 2013

Running update:
Mileage since our return from Canada:
8/5  3.1 miles in 27:43
8/9  7.6 miles in 1:16:32
8/12  15.1 miles in 2:29:18
I’m starting to get in some decent long runs now, and I’m pleased to say I actually negative-split today’s run, meaning I ran the second half faster than the first half!

Jane update: 
I took the kids to Boston with Grandma this weekend to visit our great Aunt Anne.  (As Jane says, “She’s great in two ways!”)  We visited the newly-renovated New England Aquarium, spent a morning in the Boston Public Gardens and rode the swan boats, and visited our favorite haunt, the Museum of Science.







NF update:
I was recently taking care of a newly pregnant patient, a first-time mom who was very anxious, who had many typical questions about what exposures might harm her baby (e.g.  Is it safe to use mouthwash?)  I generally try to answer by describing any available research on the subject or, if no studies are available, explain the mechanism by which something is safe/unsafe (e.g.  It’s not absorbed in significant amounts into the bloodstream and therefore doesn’t cross the placenta to the fetus).  Barring that, I say “we have no evidence” that a particular exposure is harmful if there has been no association to birth defects reported.  This discussion is particularly important in cases of miscarriages which, with rare exception, are not caused by anything to which the mother was exposed.  I make sure to say this to my patients aloud, and tell them that I want them to hear my voice saying it when they wake up a 3am and their emotional brain has taken over their logical brain and they are agonizing over what they should have done to prevent the loss.  (“I shouldn’t have eaten that tuna sandwich!”)  Maternal guilt is a powerful thing.

Now imagine you aren’t dealing with a new pregnancy and worrying about exposures causing potential birth defects—imagine you actually have a child with a genetic defect that will cause her pain and suffering.  You wake up at 3am with your emotional brain overwhelming your logical (physician’s) brain and you wonder if you did one too many fluoroscopies in your first trimester because you couldn’t cancel them because you didn’t want anyone to know you were pregnant yet.  How do you deal with that maternal guilt?  You grasp at the kind, tactful words of Dr. Scott Plotkin at MGH, who reassured this new NF mom that if fluoro caused NF, we’d see much more NF in the children of fluoroscopists than we do.  (But even sometimes at 3am I don’t believe him…)
We just spent a magical two weeks at the Lake of the Woods in Ontario, Canada visiting Todd’s family.  As there’s no connectivity in our area (a good thing!) I’m a bit behind in my blog entries...

Running update:
A total of 58.8 miles in 9:17:57.  Perfect running conditions:  sunny, breezy, dry, hilly.  One difference from running at home is my pre-run habit of strapping on bear bells—a type of Velcro bracelet with a large jingle bell attached, designed to alert any wild animals that I am approaching and thereby prevent any chance encounters with mother bears with cubs.  (Though I have heard these devices referred to as “dinner bells”.)  Another difference is my post-run habit to run directly to the lake, remove shoes and watch, and dive in!

Jane (and her family) update: 
Some of the many wonderful things we did while at the Lake:  Spending time with Grandma and Grandpa.  Seeing and hearing the loons.  Jane catching minnows in her minnow trap.  Alec catching (and releasing) two jack fish in one day.  Jumping off the neighbors’ diving boards.  Kayaking up to the loon’s nest and seeing her big, brown eggs.  Canoeing around the island and to the end of the bay.  Watching a thunderstorm move across the lake.  Seeing Auntie Debbie and Uncle Mike.  Visiting with our cousin Andrea.  Summiting the climbing wall on the neighbor’s dock.  Spending time with Auntie Linda and her family!  Baking cinnamon buns.  Catching crayfish off the dock with bits of hot dogs tied to string.  Alec wakeboarding like a pro!  Everyone kayaking (even Jane).  Swimming to the neighbor’s floating dock.  Swimming in the rain.  Emptying the boats after the rain.  Hiking and gathering wildflowers.  Watching a movie and playing cards indoors on a rainy day.  Swimming in the waves of a storm.  Warming up in front of a fire in the fireplace.  Hiking to the teepee at the top of the hill overlooking the bay (and avoiding poison ivy).  Driving into Kenora to see Husky the Muskie (sculpture), get ice cream at the Dairy Queen, and play in the Canadian Pacific Train Museum.  Taking the boat to and exploring the island of good friends.  More swimming.  Todd wakeboarding.  Helen waterskiing.  More wakeboarding and skiing.  Driving the boat to the Rockeries for ice cream treats!  A catamaran ride on Echo Bay with Linda and family.  Seeing the bald eagles eating fish.  A cookout for dinner.  Eating an entire watermelon on the dock.  After dinner swimming.  Todd’s birthday!  Picking wild blueberries then eating them in Grandma’s pie.  Visiting with neighbors and their children and grandchildren.  Alec’s ride with Linda on a jet ski.  Launching model rockets off the dock.  Bananagrams! 

NF update:  NO NF UPDATE!  WE WERE ON VACATION!












Addendum:

My husband took pictures of the kids and me striking goofy poses while jumping into the lake.  My nephew took one of my pictures and made this great graphic.  Thanks, Bobby!


Friday, July 19, 2013

Running update:
7/19/13  7.4 miles in 1:15:55
SLOW today owing to a heat index over 100.  Ugh!  Makes me look forward to our upcoming trip to Heaven—otherwise known as Echo Bay, the Lake of the Woods, Northern Ontario, Canada—where the weather is currently mid-70s, dry, and sunny!
After seeing all the fun I’ve had in the past few years with training and racing, my husband Todd has started running!  Hockey and cycling have always been his sports, but it turns out he’s a pretty quick runner, too!  His tempo pace is a good minute faster than mine.  He’s hoping to run in our town’s 5 mile Thanksgiving race.  He promised to leave the marathons for me :)

Jane update: 
During the heat wave this week I took the kids out for ice cream one afternoon.  Jane had been feeling fine, but when we arrived at the Cold Stone Creamery, she threw up in the parking lot :(  I’m not sure if it was the Gleevec or the hot weather, but we hurried inside to cool off and get a drink of water.  She asked me, “If my tummy feels better now can I still get ice cream?”  How could I say no?  (She seemed better after that…)

NF update: 
I enlisted the kids' help with fundraising this afternoon.  We folded, stuffed, sealed, stamped, and put return addresses on 270 envelopes in 1-1/2 hours!  They didn't even ask for bribes!  They did it, as Helen said to Jane, "to help find medicine for your cheek!"  (It also helped that they were competing to see who could stuff the most...)

Wednesday, July 17, 2013

Running update:
July to date:
7/3  5.1 miles in 46:10
7/5  5.6 miles in 56:30
7/7  6.0 miles in 1:05:07
7/10  5.0 miles in 47:39
7/13  9.7 miles in 1:35:09
7/15  3.1 miles in 30:58
7/17  4.2 miles in 41:09

The heat and humidity of the past two weeks have really put a dent in my training!  90+ degrees with 90+ percent humidity is just too brutal—I’m running much fewer miles at much slower pace.  Thankfully it’s still early in the training season…

Jane update: 
Just signed Jane up for fall soccer (already!)  Jane started playing soccer for the first time this spring and was so excited to be part of a team.   At the end of the season her coach gave out individualized medals for participation—Jane got hers for being “keenest player”.   (Thanks Coach Mark!)  Before the season started a well-meaning friend had told me she had reservations about Jane playing soccer, for fear of Jane getting hit in the jaw where her tumor is.  I confess, holding her back from any activity has never even occurred to me.   I don’t ever want to tell her that she can’t do something because of NF.  And knowing Jane’s personality, I don’t think she would even take “no” for an answer, anyway :) 
More firsts:  Jane caught her first wave while vacationing in Cape Cod and started piano lessons this summer!

Sunday, June 30, 2013

Running update: 
6/26  5.0 miles in 45:19
6/28  5.0 miles in 47:57
6/30  8.1 miles in 1:12:23—the entire run to Cameras by Matt & Kim on repeat.
Was emotionally and physically exhausted after our trip to IU and alone with the kids on summer vacation, but had to get back to training on the 26th.  Who else do you call when you need a last minute sitter for a few hours so you can go running?  Your Mom!  A nap, a Power Bar, and a cup of coffee, and I was good to go.  (Thanks, Mom!)
I am at 503.0 miles for the year, aiming to run 1000 miles in 2013, so I wanted to get to the 500 mark before July 1st.  Yay!

Jane update: 
Jane has finished Kindergarten!  We had her end-of-year celebration before our trip to Indiana, so thought I’d share some photos.  We are so proud!  The event included a display of the children’s paintings based on the works of Picasso, Rothko, O’Keefe, Pollack, Mondrian, Kandinsky, Warhol, and even Damien Hirst (spot paintings only!)  Aren’t her teachers wonderful?
 
 
 
The installation included busts the children made of themselves:
 
 
None of the busts are perfectly symmetric, but I couldn’t help being struck by the shape of Jane’s.  I don’t think it was intentional, but it does make me wonder how she sees herself.  I also often wonder how others see her.  A good friend recently commented to me that she was speaking about Jane with her 8 year old son.  My friend mentioned Jane’s tumor, and her son was puzzled—he hadn’t noticed it.  It seems lots of times children don’t.  Meanwhile, I see adults turn and stare at Jane all the time.  (I don’t blame them—it’s only natural to look twice at something you don’t usually see every day.)  And people often tell me they recognize my “family” when the kids are around town with others, and I’m sure it’s because of Jane—I don’t think they’re otherwise that distinctive.

NF update:
This video was created in honor of Jane and me by Sarah Coulam, the director of the NF Endurance Team.  We are so lucky to have her as our leader!  Sarah's video for Jane

Helen update:
More props to my eldest:  Helen finished 5th grade with high honors in every trimester!
 

Monday, June 24, 2013

Jane update:
While on our way to Riley Children’s Hospital for Jane’s MRI this morning we saw the gorgeous super-moon still in the sky even as the sun was rising.  Jane is such a brave little girl—met six different hospital staff and was examined by two different doctors all within about an hour of waking up.  Her patience reached its limit when she was asked to change into the hospital gown (the nurse relented), but she didn’t shed a tear.

After the test Jane came out of anesthesia more slowly today than usual.  Even three hours after the procedure she still didn’t want to sit up, and when she did she threw up!  Apparently (I learned later) she's been given IV Zofran, an anti-nausea medicine, preventatively in the past, but this anesthesiologist didn't give it :(  We’ve heard that back at home Yale has an MRI simulator for kids to practice lying still in so they don’t have to go to sleep for studies.  Usually it’s for older kids, but we might have to look into it for Jane—this anesthesia thing is a drag.

In the end, relatively good news!  Jane's tumor has "only" grown 10% since last visit, so it is actually considered "stable".  We’ve been told Gleevec can take as little as 4 months or as long as 8-12 months to take effect, so we can still be hopeful.  I am actually quite pleased--I was convinced we were going to find the tumor had grown more than 20%, in which case we would not longer have qualified for the study.  (Seems crazy that we consider it "good" even though the tumor grew...)  As it is, we'll continue Gleevec for now, and return to Indianapolis again in 6 months.

Back at the hotel this evening we celebrated.  Jane played a bit with her new stuffed animal, a kitty we named Marshmallow.  Even before the trip she had told me she wanted a kitty stuffed animal from the gift shop after her MRI :)  We bought little presents for her brother and sister today, too.  Had a swim in the hotel pool then treated ourselves to the Steak 'n Shake, Indianapolis!  Jane was one hungry little girl—she devoured her dinner and proclaimed, “This is a good meal!” 


Sunday, June 23, 2013

Running update:
6/16  5.0 miles in 44:30
6/21  5.0 miles in 43.53
That’s it--just 10 miles in one week.  It’s the first time I’ve missed a planned run all year...  Had also planned to write about three posts in the past week, but managed just this one.  End-of-school activities, a traveling husband, and an unusually busy office just crushed me this week.

People ask me how I manage to work and take care of the kids and train.  Most of the time I answer that the training is my therapy and that it is a labor of love for Jane.  But honestly, sometimes I am overwhelmed, and just so tired.  I wish I could have the serenity of my friend Angela Auzston, another NF mother I’ve met through the NF Endurance Team.  Her words of wisdom:  “All I can do... is the best I can.  I do every work out I possibly can and I no longer beat myself up inside if I have to miss one because I am busy being a wife or a mother.  Life happens.”   (See Angela’s blog about her daughter and training for an Ironman here:  www.auzston.blogspot.com.)

Jane update:
I started writing my first blog with a post about our first trip to Riley Hospital in Indianapolis in January, and now we’re back here again for follow-up.  We’ve had a smooth trip so far and hoping for a good night’s sleep tonight as we have to be at the hospital for Jane’s MRI at 6:30 tomorrow morning.  I’m anxious to see if Gleevec has had any effect on Jane’s tumor, but I’m afraid I’ll be disappointed…
Once again, Jane has been looking forward to this trip for weeks.  She’s been telling people that we’ll be in Indiana for two days:  "One for the MRI and one for the pool!"  Thank goodness she finds these trips fun, and doesn’t dread them (like I do).


Consummate traveller Jane
at the start of our trip

Jane during our connection at O'Hare
(admiring the walkway between terminals)


And finally, checking in (a mobile phone-quality clip).
This is what makes doing anything with Jane so much fun--her endless enthusiasm!

Friday, June 14, 2013

Running update:
6/12  5.0 miles in 43:21 (fast today!)
6/14  9.0 miles in 1:21:47  Wasn’t scheduled for a long run until Sunday, but it was perfect day for running (sunny, dry, breezy, 60s) and I couldn’t help myself!

Jane update: 
The first words Jane uttered to me upon awakening were "I one a skunk."
(To which I am supposed to reply, "I two a skunk."  Then we alternate:   "I three a skunk",  "I four a skunk", until I finally reach "I eight a skunk" and she squeals, "What? You ate a skunk?!")
 
Got the good news this week that Jane’s most recent blood work was normal.  She’d had her (now monthly) check-up and blood work last week, and was so cooperative.  No tears, so patient.  When I dropped her off at school afterwards a classmate asked, "Jane, where were you?" and she tossed off, "Oh, I was having blood work."  Not something a typical six year old is used to...  Jane regularly sees a pediatrician, a neurologist, a neuro-oncologist, an ophthalmologist, and an otolaryngologist.  Also not typical!

Got an awesome little wind-up toy boat as a reward from the phlebotomist for being so good.  Jane showed it to the others in the waiting room (all elderly) who admired it appropriately. We told them if they cooperate they might get a toy reward, too :)

Sunday, June 9, 2013

Running update:
6/8  7.5 miles in 1:11:36
6/9  5.0 miles in 45:47
The curse (if there ever was one) is broken!  Forced myself to go out slow and didn’t allow myself to look at my watch, but finished both runs this weekend.
According to my training plan I am due to officially start training again June 23rd as that date marks 16 week until the Hartford Marathon.  However, Jane and I fly to Indiana for her check-up on that exact date, so I thought I’d get a bit of a head start and record a few runs now.  Here’s my brand-new running schedule!
For the time being I am using a training plan from the NYC marathon, though I had to shift some of the work-outs around to fit my schedule.   May hybridize it with a training plan from Runner’s World written by Amby Burfoot (Boston Marathon winner from 1968 who was running this year’s Boston for the 45th anniversary of his win and who was right behind me in the race!!  http://www.runnersworld.com/races/amby-burfoot-so-close-yet-so-far )

Jane update:  It’s been 4-1/2 months on Gleevec and Jane seems to be tolerating it well.  She has only gotten sick to her stomach about once a month, which is much better than the once a week she was experiencing towards the end of her interferon treatment.  The last time she was sick happened to be the day of a field trip to visit her new school for the fall!  She woke up feeling fine, but started to complain that her stomach hurt while we were driving to school.  When we got to school, Jane promptly ran to the bathroom to throw up.  The downside to her infrequent sickness this time around is that when she does get sick, despite bouncing back quickly, her school is more inclined to think it’s a stomach bug than a medication side-effect, and sends her home.  It was a bummer to miss the orientation at Jeffrey Elementary School with her classmates, but Jane does know the school a bit already through her big sister and brother.  Jane had to come with me to my office briefly while I scrambled to find child care.  Here’s the makeshift bed we rigged:

NF update:  My running gear had started to take over my closet, and I finally had the opportunity to clear it out a few days ago.  I discovered that I owned no less than ten different NF Endurance Team/Children’s Tumor Foundation running shirts!  Not surprising, I suppose, since I’m about to start training for my fifth half and fifth full marathon for NFE/CTF.  Here’s the lot of them (fronts and backs):

Helen update:  Have to put in a plug for my oldest daughter—she was chosen as her fifth grade team’s student of the month!  I’m so proud.