My daughter Jane is 5 years old. She was diagnosed with NF1 at age 6 months. The primary manifestation of NF in Jane is a large plexiform neurofibroma on the left side of her face, jaw, and neck. Jane participated in a clinical trial with Pegintron at NIH for over two years, but stopped this past September when her tumor continued to grow. We are about to start another clinical trial, this time with Gleevec through Indiana University.
Jane is an otherwise happy, healthy, effervescent Kindergartener! She enjoys spending time with her big brother and sister and her many friends.
I have been a runner all my life, but joined the NF Endurance team about a year after Jane's diagnosis. Since then I have run in four half- and three full marathons, and in doing so have raised over $50,000 for the Children's Tumor Foundation. I am thrilled and honored to run in the Boston Marathon this year with the NF Endurance team!
|Jane with her brother & sister
Jane at the Indianopolis
Steak'n'Shake after a
long day of testing
at Riley Hospital
Running update: 10.0 miles in 1:32:21. Last run before our trip to Indiana. A bit slow owing to the snow and ice on the road. 19 degrees F. Tried plastic bags over my socks inside my shoes, and my toes did stay warm!
Jane update: Jane has been looking forward to this trip for weeks. I couldn't figure it out, given that she knows these excursions involve doctor's visits and "shots". I finally asked her what she's excited about, and she said, "We'll have a pool in our hotel!" Thank goodness for the small things.
Jane update: Safely in Indianapolis! Made a connection in Chicago and were the last flight to leave before an ice storm cancelled many flights. Whew! Thanks to Grandma Agnes we're staying in a fancy hotel with a pool, instead of our usual family inn. Early bed tonight as we have to be at the hospital by 6:30am.
8:15am - Jane's in her MRI at Riley Children's Hospital. This time didn't have to have an IV placed until after she was asleep, which makes a big difference. She shed a few tears but was a brave girl! Puppy (her loyal stuffed animal) stayed with her and even got an anesthesia mask of his own. Still dark in Indianapolis this morning - we're used to the other end of the time zone! Was pleased to meet Dr. Kent Robertson who runs the Gleevec trial. Have confidence he will take good care of us.
Will lunch at the McDonald's in the hospital (McDonald's! In the hospital!)
10am - At the airport, waiting to board. Long day at the hospital yesterday, spent about 10hrs there. Jane's blood work all good, but will have to wait for the docs to analyze her MRI to know how much change there's been since her last study in Sept. Had her 1st full-body MRI this time (even though she's had over a dozen of her head), and I'd been afraid to learn if there were other tumors lurking. The good news is that they only found one other plexiform neurofibroma, a small one on one of her lumbar nerve roots. Got our Gleevec and the plan for taking it. Will have to have blood drawn weekly the first few weeks - I think I'd rather run a marathon...Speaking of, training starts up again tomorrow!
7pm - Jane took her 1st dose broken in half in a spoonful of applesauce - swallowed it in one gulp on the first try!
Running update: 6.1 mile speed work today, in the form of hill repeats - yuck!
Jane update: survived her 1st 24 hrs. on Gleevec without apparent side effects. Will increase her dose gradually over several weeks up to about four times what she's taking now, so will reserve judgement for the time being.
Running update: easy 5.0 miles today (thank goodness)
Jane update: Day 4 of Gleevec without side effects (thank goodness)
NF update: had coffee this afternoon with good friend Janet Dielman, whose goddaughter also has NF. It was Janet who nominated me for NF Athlete of the Month!
Running update: long run, 10.4 miles (untimed because around mile 4 I stopped to chat with a neighbor I hadn't seen in ages, and forgot to stop my watch--oops.) Almost identical conditions to last week's long run: bright and sunny but cold, 21 degrees F, with fresh ice and snow on the road. Plastic bags over my socks really do work! Credit goes to Mark Remy of Runner's World.
Jane update: when I left for my run Jane was asleep, and returned to find her curled up on the couch, complaining of a headache and a stomachache. Here we go again - Jane had a tough time with nausea a vomiting while on interferon. Will still hold out hope that this is a run-of-the-mill stomach bug. As luck would have it, today is Gleevec-free day. Phew.
While running, tried to formulate a plan-of-attack for Jane's blood work this week. Two and a half years of interferon injections have made Jane very needle-averse. Aside: I am completely in awe of parents with diabetic children. It must take a huge amount of courage to check blood sugars and administer insulin to a small child multiple times a day.
Running update: speed work today, 6.1 miles with hill repeats - nothing compared to what Jane puts up with.
(Somewhat disheartened to see how little my "hills" register on my GPS elevation map.)
Jane update: spent four hours in various doctor's offices today, but the final verdict is just a nasty virus and nothing more. With NF - as with any rare disease, I guess - even simple problems aren't always simple to figure out.
Had the EMLA cream for her skin and the Lucky Charms for a bribe, but Jane did beautifully for her blood draw - just a few tears.
Running update: long run, 10.6 miles. What do you do when it's coming up on a blizzard, school and work are closed, you husband is away, and the Boston Marathon is only 10 weeks off? Hire your good-sport sitter to watch the kids and go for a 10-1/2 mile run in the snow! The crazy part: I wasn't the only runner out there!
Jane update: still haven't restarted the Gleevec as Jane is still not 100%. Hopefully tomorrow?
Reread an encouraging old e-mail from NFE athlete Angela Auzston, whose daughter Kylie also has NF, and has been on Gleevec for 6 months. Angela not only runs marathon, she does Ironmans!
Running update: easy 5.0 miles. New England weather is not conducive to training for a spring marathon! Pouring rain today on top of the 32 inches of snow we got the day before yesterday. Had to tromp through the snow banks to avoid flooded roads in no less than four places. Still beats running on a treadmill!
Jane update: back on track with Gleevec. Jane can now swallow the pill whole!
Running update: tempo run of 7.6 miles in 1:05:50. Was supposed to be a speedwork day, but I hate speedwork!
Jane update: fourth snow day in a row off from school! This means that out of the past three weeks, Jane will have only attended school six days - was out two days for our trip to Indiana, three days while sick, and now four days due to the blizzard. Good think she gets plenty of education from her own life experiences.
Running update: tempo run of 5.0 miles in 42:28. Was supposed to be an easy day, but I felt guilty for not having done speedwork on the 13th....
Jane update: Forgot our dose of Gleevec last night for the first time. Have resolved to keep the bottle on the kitchen table to serve as a reminder.
NF rant: Was preparing copies of Jane's recent test results to our consulting doctors: Dr. Brigitte Widemann, our wonderful pediatric oncologist at NIH, our local pediatric ENT, and an absolutely lovely pediatric neurologist at Yale named Dr. Laura Ment, who is also a runner and who also has a father and sister with NF! I read the report from Jane's full-body MRI for the first time - had previously just relied on Dr. Robertson's sanitized description of it. In the findings it read: "There are multiple neurofibromas seen throughout the chest, abdomen, pelvis, and bilateral upper and lower extremities. The majority of these are either in the subcutaneous tissue or muscle tissue." And the "small" neurofibroma next to her spine - the only other neurofibroma we had been aware of - is almost 2cm! This is exacly why I had never wanted Jane to have a full-body MRI! Believe me, I am very grateful that Jane is lucky enough to have just a single troublesome PNF and that we have a fabulous team of doctors helping us. But I think I would rather have remained blissfully ignorant of all those little tumors, given that there's nothing we can do about them right now except worry!
OK. Have to remember this is why I'm running for the NF Endurance Team.
Running update: Long run, 12.5 mi. in 1:58:04. Bright and sunny but 25 degrees and windy! Things I think about while running range from the mundane to the fantastical, depending on my level of fatigue and/or delirium. Here is a sample, in decreasing order of likelihood of actualization:
1) Plan dinner for tonight
2) Plan dinner for the week.
3) Plan what to write in this blog.
4) Plan time to finish my charts for work.
5) Picture finishing the Boston Marathon.
6) Picture finishing the Boston Marathon in under 4 hours.
7) Picture finishing the Bostom Marathon in time to qualify for the Boston Marathon (under 3:45:00 in my case).
8) Imagine being interviewed about my experience with the NF Endurance team by a local news station. (Oh, wait! I did that in 2010! Here's the cringe-inducing link
9) Imagine being interviewed about my experience with NFE by Diane Rehm on NPR.
10) Imagine being interviewed about my experience with NFE by Oprah Winfrey, who announced at the end of the segment that she is donating one million dollars to the Children's Tumor Foundation.
11) Imagine singing lead vocals for the indie band Metric on their single "Breathing Underwater". (Did I just say that out loud?)
12) Imagine cleaning out the basement!
Running update: 7.5 mi tempo run at an 8:31 pace! That's fast for me! I guess training properly does help me get faster!
Jane update: Yesterday Jane had her weekly checkup and blood work, this time accompanied by her big brother and sister. It was much easier for Jane to tolerate the needle stick with Alec and Helen providing distraction and moral support! (Also good for them to see from time to time what Jane has to go through). Then made a trip to the salon for long overdue haircuts. Almost two weeks back on Gleevec and no apparent side effects yet.
Running update: easy 5 miles today.
Jane update: Jane's blood work results look good! Pressing on with Gleevec.
Running update: long run 12.5 miles in 1:57:03. Had a sort of meditative run - took my MP3 player and had the first song on repeat for the first hour ("Midnight City" by M83 - I don't know the lyrics but find it oddly hypnotic). Was supposed to run at an easy pace until the last five miles, and then pick it up to race pace. Made it to the last mile, then had to slow down again :( Topped 100 miles in the past 30 days, though, and hope to stay there until after Boston!
Jane update: Tomorrow we double Jane's dose of Gleevec. No side effects so far - hope that continues to be the case. We spent the afternoon maple sugaring at a local farm! Jane even got to use the drill to tap a tree. Back to school tomorrow after the February break.
Today's update by the hour:
"My Day Off by Kristy"
6:30am - Wake
6:30am-8:15am - The morning rush: dress self; wake and dress three children; prepare breakfast for self and children; pack lunches and backpacks; make coffee; ensure two children catch two different buses; prep third child for morning of doctor's appointments.
8:30am-9:15am - At our pediatrician's for Jane's weekly check-up.
9:45am-10:30am - Had to drive 1/2 hr. into New Haven to have labs drawn at Yale's main campus because today's blood work included some specialized tests for the clinical trial. There wouldn't even have been any tears from Jane at all except that after the phlebotomist had removed the needle from Jane's numbed arm, he realized he had forgotten to fill one vial, and had to stick her again on the non-numbed arm!
11:15am - Back at home, having dropped Jane off at school. Planning to head out for a run.
11:15am-11:30am - Trying to locate a clean pair of running socks. Where do they disappear to?
11:30am - Dressed for a run at the end of the driveway.
11:30am-11:40am - Waiting in the cold rain while my GPS watch is "locating satellites". Didn't think we were that remote...
11:40am-12:55pm - Run: 7.9 miles in 1:11:45 in the pouring and freezing rain. Today's "tempo" run quickly turned to an "easy" one due to the weather conditions! (Excuses, excuses...) The road was flooded in two places so I had to wade ankle-deep through the puddles. Felt like I was running with a gallon of water in each foot, and I swear the wind was against me both ways.
1pm-1:20pm - Defrosting.
1:20pm-2:20pm - Shower, dress, gobble down lunch, and answer a few work emails.
2:20pm - Head out to start the rounds of kids school pick-ups, homework, swimming lessons, dinner, and bedtime routine that will take me through 9pm.
Running update: Speedwork in the form of 6.1 miles with hill repeats.
Jane update: Was notified from our doctors that this week's blood work looks good. Jane continues to tolerate two tablets a day.
Got confirmation today from the Boston Athletic Association of my entry to the Marathon!
Running update: Long run, 12.5 miles in 1:56:49. Did much better with my splits today: run just under 10 minute miles for the first 7.5 miles, then just under 9 minute miles for the last 5. Yay!
Was invited by my wonderful cousin Marie-Leigh to test-run some of the Boston course! She lives not far from Hopkinton. Marie ran the Boston Marathon for the NF Endurance Team in 2012 in honor of Jane! I'd love to see Heartbreak Hill once before the race - hope to get together with Marie this month.
Side note: In case you might think I neglect my other children, here's kudos for my 8 year old son. Alec received a letter from the assistant principal at his school congratulating him on the hard work and progress he's made in reading this year!
Running update: 7.5 mi speed work in 1:08:09. Was meant to alternate 8 minute hard efforts with 4 minute easy jogs, but it was probably more like 4 minutes hard, 8 minutes easy...
Jane update: Check-up and blood work day. Jane and I both had blood drawn today! (I'm overdue for my annual physical exam.) Jane sat on my lap and had her blood drawn first, and for the first time that I can remember Jane did not cry. She was actually giving instructions to the phlebotomist: "First you have to wipe the spot", "Don't forget to tie the strap around my arm", "Check that you have all the tubes!" When it was my turn she coached me not to look at the needle, when to squeeze the ball, etc. Now no more blood draws for four more weeks!
NF update: Was given the wonderful opportunity to meet with John Heropoulos, senior VP at the Children's Tumor Foundation, and representatives of the Wireless Zone Foundation for Giving in Middletown, CT today. The Wireless Zone is headquartered in CT; their charitable arm has a history of generous donation, particularly to children's organizations. They gave almost $35,000 to CTF today! (Everyone: shop at the Wireless Zone!)
Running update: MORE SNOW! Another 8 inches today! I'll be all set if we get snow on race day, with all this winter running practice. Did a 5.0 mile tempo run in 42:09. It was actually supposed to be an easy 6, but I ran fast because the kids were off from school (again) and I only had a limited window of child care (Thanks, Grandma Agnes!)
Jane update: still doing well, blood work normal. Was supposed to meet today with the principal at the school Jane will attend in the fall to let her know a little about Jane and NF, but school canceled today! Rescheduled for next week.
Running update: Long run 15.1 miles in 2:24:33. Achieved the appropriate negative split again!. Ten minute pace for the first half, 9 minute pace the second. Very exciting (for a runner!) The sun was out today and spring was in the air. Melt, snow, melt!
Jane update: still doing well! Jane and her sister and brother got on their bikes today for the first time this season for a ride in the neighborhood. Tomorrow we start three pills a day.
Running update: Tempo run of 7.6 mi in 1:03:53 (8:27 pace). Getting faster!
Jane update: Met today with the principal of the school Jane will attend in the fall. She was very thoughtful and reassuring. This will be the first time Jane will be in school with a new group of peers and I was uncertain how to prepare her (and myself) for this. She's been with the same group of classmates since she was trhee, and they are all used to her appearance. We get stares from strangers, but thankfully Jane is still young enough to be oblivious. Quite honestly, I myself don't know how to handle this yet! Jane has a spunky personality, and will likely adjust to a new class just fine. (She had told me a little boy in her class called her names - "fat cheeks" - but then she said, "He doesn't call me names anymore because I told him Santa is watching!") I've been told by some people to teach Jane the "tools" to handle it herself - but I am still not sure how to do that! I don't think Jane is fully aware of her condition yet. She does know she has "NF" and that is causes bumps, and that she has a big bump on her cheek and has to see special doctors and take medicines for it - but how much more than that can a five year old really understand? I've also told her that sometimes people stare or make fun because they don't understand something, so we can explain it to them...
I think I had to have the meeting with the principal more for myself than for Jane - I guess what I wanted to avoid is having Jane show up for the first day of school without anyone knowing ahead of time that she might appear "different".
Kristy update: On a lighter note, I had my own physical exam today and learned my resting heart rate is 53! If each of us has an allotted number of heartbeats in our lifetime, think of much much longer I'd live if it were that slow all the time! Too bad I've used up so many extra heartbeats while exercising...
Running update: Easy run of 7.6 mi in 1:07:30 (8:53 pace). Hmm, if felt like I pushed so much harder during my last tempo run on this route, but I was only 3 minutes faster. It does seem to take an enormous amount of effort to make even small differences in overall time. (Will I ever break 4 hours for a marathon?!?)
Learned my bib number today: it will be 25653. Watch for me :)
Jane update: Still managing three Gleevec tablets a day. Jane's been complaining of a headache all week, but I am going to attribute this to the time change for now. We're all a bit more tired and cranky this week from getting up an hour earlier - but it sure is nice to see the sun in the evening.
Running update: Long run of 17.8 miles in 2:55:14. Sort of bonked today. Didn't get a negative split. I'll even admit I had to walk up the last hill. I don't think I ate or drank enough before and during my run today - lesson learned! That said, I did feel like I went out at a reasonable pace, and was keeping an eye on my splits with my watch...In the words of my virtual running partner, Neil, regarding the GPS watch: "Sometimes I think it lies."
Yesterday I went on a reconnaissance mission with my fabulous cousins, Marie and Mary, to scope out the Boston Marathon route. Both women have run this marathon before and were kind enough to spend their entire Saturday giving me an instructional tour of the course. They met me in Hopkinton and we drove together through Ashland, Framingham, Natick, Wellesley, Newton and Brookline, all the way to Boston! Along the way they pointed out various landmarks, numerous hills, and points of caution for runners. Mary even showed me the building where my parents had their wedding reception - along the rate route, no less! I got to see Heartbreak Hill firsthand, thereby slightly dispelling some of my angst regarding it. My cousins have invented their own name for the final hill of the marathon, one mile from the finish - they have dubbed it "Soul Destroying Hill" and they warned me to conserve energy appropriately!
Running update: 7.6 mi tempo run in 1:04:50. Sunny and clear - first day of spring!
Jane update: Jane woke up with dry heaves yesterday morning. She is so assustomed to medication-induced nausea and vomiting that she is very matter-of-fact about it. She just gets up from the couch, wanders into the bathroom, throw up into the toilet, flushes, and goes back to the couch without comment. Not something a five year old should be used to! Hope we don't see a lot of this with Gleevec...
Today we stopped by the public library after school to see the display of art created by Jane's kindergarten class! Here is Jane posing by her work inspired by Andy Warhol's Campbell's Soup Cans.
Running update: Easy 4.9 miles in 46:07 - ouch. Very tired today. If it hadn't been for this blog I might have skipped my run altogether. In the end, I decided I would feel worse if I bagged and had to admit it in this entry than if I actually went running. Resolved to get to bed early tonight.
Some running-inspired songs from my playlist:
Florence + the Machine, "The Dog Days Are Over"
Key Lyrics: "Run fast for you mother, fast for your father. Run for your children, for your sister and your brother."
Fun, "Carry On"
Key Lyrics: "Whoa, my head is on fire, but my legs are fine. After all, they are mine."
Youngblood Hawke, "We Come Running"
Key Lyrics: "We come running."
Young the Giant, "My Body"
Key Lyrics: "My body tells me no, but I won't quite, 'cause I want more."
Imagine Dragons "It's Time"
Key Lyrics: "So this is what you mean when you said that you were spent."
(Oops, not that one.)
Running update: Long run 20.1 miles in 3:15:02, 9:42 pace. Only one more long run before the marathon!
Jane update: Started four tablets of Gleevec today. Spent the afternoon at the piano recital for Jane's big brother and sister, Alec and Helen, who played beautifully. Jane is excited to start lessons this summer!
Running update: 7.6 miles in 1:09:16, feeling stiff and sluggish. Note to self: run before a day of spring cleaning, not after.
Helen update: Kudos to my oldest daughter, Helen, who is in 5th grade. Helen just got her report card, and she's made the High Honor Roll for the second trimester in a row! I'm so proud of her!
Running update: 22.8 miles in 3:38:51, a pace of 9:38
Last long run before the marathon! Yahoo!
I've run 50.5 miles in the past week, 142.1 miles for the month of March.
It's taper time!
Jane update: All of us having a wonderful visit with Grandma Janet and Grandpa Bob! They are here for the long holiday weekend all the way from Winnipeg, Manitoba.
Running update: 5 miles in 42:48, 8:35 pace. Had to do a short tempo run today due to limited child card availability since Jane was home sick today - on her 6th birthday!!!
Jane update: It stinks to be sick. It stinks even more to be sick on your birthday. It stinks most to be sick on your birthday for two years in a row! Jane was up all night sick to her stomach, and has been curled up on the couch all day. She did perk up enough to open a few presents at one point. Hoping this is a bug and not the Gleevec - hard to tell except in retrospect.
While tending to Jane in the night my brain cycled through the "Bug vs. Drug" question: At first I hope it's just a stomach bug, because I really need to know that we've been able to give Gleevec a chance to work before giving up on it. In spite of my rational self, I can't help but hold out a small hope that maybe this will be the magic bullet that makes Jane's tumor melt away It would kill me to have to let go of a wonder drug if Jane's stomach couldn't handle it. But then I think, if it's a stomach bug, everyone in the house is likely to catch it, and it will mean a week of sleepless nights, power-washing laundry, sanitizing bathrooms, scrambling to find child card for sick kids, and possibly rescheduling patients at my office if I catch it. And I can't afford to catch it, I think to myself - I have to run a marathon in twelve days! But with a jolt I realize how selfish it is to wish that this isn't a bug - wouldn't I gladly suffer gastroenteritis myself a hundred times over so as not to snatch away hopes for a cure for Jane? I perseverate on this all night, as if my hoping and wishing will change the cause of her illness.
At Jane's school the birthday boy or girl gets to pick a gift (like a bookmark or a pencil out of the Birthday Box. Going to bed tonight Jane asked me if she still gets to look in the Birthday Box if she was out sick on her birthday (I told her I thought she probably did).
Running update: 7.5 miles in 1:05:37.
Jane update: Jane has recovered enough to go back to school today, though I had to pick her up early for her most recent check-up and blood work for the Gleevec study. One thing I can say for this study - with the number of times we have to get blood drawn, Jane has become a pro. She no longer resists and doesn't shed a single tear.
For school today Jane wore her new outfit that matches her dolly's
Running update: 7.6 miles in 1:06:57. My thoughts today were all on Boston. Got the latest issue of Runner's World with Kara Goucher and Shalene Flanagan on the cover and was in awe thinking that I will be running on the exact same course
as these elite women (albeit several hours behind them).
In case anyone's wondering, my "after" is a room temperature diet lemon Snapple iced tea.
Just a note of thanks to all of you for the positive feedback I've received about this blog! I am still amazed when I hear that other people are reading it besides my Mom :)
Special thanks to my husband, Todd, for his encouragement, and his patience while I am off on my long runs!
Jane update: Jane and her friends had lots of fun at her birthday party yesterday!
Running update: 5.0 miles in 43:43. Last run before Boston! After my run I took a little walk with my GPS watch around the soccer field at the town campus, just to illustrate the reason I'm running the marathon. Inspired by Payam Rajabi's valentine bike ride.
I wish I didn't have to write this update. By now everyone knows about the tragedy of the 2013 Boston Marathon. Thank you all for all your support and prayers - I am still trying to process it all, like everyone else.
Our family was very fortunate not to be involved in the terrible events of the day. I was less than 1/2 mile from the finish, but far enough away to experience only confusion and not the awful scene itself. My family, thankfully, was watching from mile 23, so were shaken but unharmed. We really didn't understand the devastation until we were out of Boston and able to listen to the news...
It had been such a beautiful day and the citizens of Boston were so gracious and kind to welcome us. The whole city was out to cheer for us! Such spirit! When the race was stopped so many people offered cell phones and water and jackets to us. I am in tears and heartbroken that Boston was made to suffer like this. My thoughts go to all the injured and to families who lost loved ones, and gratitude to the magnificent first responders.
I met so many amazing people along the journey, from the buses at the Common, to the Athlete's Village in Hopkinton, and throughout the race back to Boston. Since I was running in the third wave, many of the others around me were also running for charities. I met more supporters of NF, and learned the catch-phrase "Neurofibromatosis: If you think it's hard to say, try living with it!" One person in particular who befriended me was Robert Crumpton, who was running for the Red Cross, in honor of his mother. He's in the midst of running 50 marathons for charity, one in each state, by the time he turns 50! (Here is his fundraising website
...if there's ever a time to support the Red Cross in Boston, it is now!)
Thank you to the fabulous NF Endurance Team for the very special opportunity to run in Boston. Despite the horrible happenings, it is a day I will cherish. A special thanks to Sarah Coulam, Alissa Marks, and all the wonderful NFE ladies who came to Boston to support CTF and cheer for me! Honestly, the anticipation of seeing them at mile 22 kept me going!
I will start my annual fundraising campaign for CTF this summer for my fall races - the New Haven Road Race in September and the Hartford Marathon in October. Keep your eyes on this site: http://ctf.kintera.org/nfefundraiser2013/krath4jane And I will be back to finish Boston someday!