Wednesday, April 23, 2014

Boston Marathon 2014

4/21/14  26.2 miles in 6:09:09.

Physically, Monday’s marathon was the worst I’ve run.  The math was not hard to do:  suboptimal training + lingering virus + poor fuel management during race = 6 hour finish.  However, emotionally there were so many rewards, which, in the end, have far outweighed my disappointing time.  I will start with thanks all around, from the beginning of the marathon to the end.


This is me with Janet, another member of the NF Endurance Team.  Janet was running in honor of a colleague’s son who has NF.  Janet and I met last year at the start of the Boston Marathon when we noticed each other wearing the same shirts!
With Janet before the start of the 2013 Boston Marathon
Like me, Janet was nearly at the finish line on Boylston Street last year when the bombs went off.  She was thankfully unhurt, and was invited to return to the race this year, like all of us who didn’t finish.  This year, Janet made a point to seek me out the day before the race (having to chase me all around Back Bay as my family and I got into Boston later than expected) so that we could take another picture together.   I can’t thank her enough for being part of our team.

Next, thanks to my friend and neighbor, Holly.  Holly is a mother of four whose oldest son is in my son’s class.  She was at the Boston Marathon running for the New England Patriots Charitable Foundation.  Having Holly’s company on the walk to the Common, the interminable bus ride to Hopkinton, the wait at the athletes’ village, and the walk to the start made the day even more special.  Last year I was lonely and nervous at the start.  This year Holly made it fun!

My crazy cousins also have my everlasting gratitude!  When I was little and said my prayers at bedtime, I used to thank God for my mother and father, my sister and brother, and my “dozens of cousins”.  (My mother was the youngest of eight children growing up in South Boston and Dorchester.)   This year my cousin Bob ran the Boston Marathon for the Dana Farber team, and several of his sisters and their families came out cheer for us.  His sister Marie (who ran the Boston Marathon in 2012 in honor of my daughter Jane and the Children’s Tumor Foundation!) is a member of the Greater Framingham Running Club, which helps to maintain the mile markers along the race route.  As a result, I had cousins to greet me at mile markers 1, 2, and 3!
My cousin Marie with arms raised to welcome me!
With all this love, I started the race on a high.  However, by mile 8 I could already tell something was wrong by the feeling in my stomach and my legs.  Eight miles is a typical daily run for me—I wouldn’t normally feel this weak or tired until at least twice that distance.  I started walking through the water stops.  I promised myself if I kept running to the half (mile 13) I would allow myself to walk after that.

I walked from mile 13 to mile 17, but was fading quickly.  Then I noticed a group of spectators with signs reading “NF:  Going the Distance”!  It wasn’t a logo I recognized, but I ran over to let them know I was running for the NF Endurance team.  They asked me how I was doing and I confessed that I didn’t think I could finish.  They sat me down, gave me something to drink, and offered to let me use their phone.  This lovely group included two other NF moms—Michelle and Melissa—who were at the race cheering on their family members who run with Neurofibromatosis Inc. Northeast, another organization supporting research, awareness, and advocacy for NF.  If I hadn’t bonked, I never would have met these wonderful people.  Maybe some things do happen for a reason :)

I called my husband, Todd, to let him know my state, and we puzzled about how we could meet up if I dropped out of the race at mile 17.  It seemed logistically impossible.  I decided I would walk to where I knew another of my cousins was watching the race at mile 20, the bottom of Heartbreak Hill.  I could see how I felt by then, and get a ride home with her if necessary.

At that moment two members of the NFNE team—Jeff and his niece, Hilary—came by.  They offered to walk with me, and despite my protestations that I would hold them back, they waited for me.  I walked with this family for many miles, and surely would not have finished without their help and encouragement.  I am so grateful to have met them!

This leads me next to thanks for Mary.  My cousin Mary is also marathoner and, along with my cousin Marie, had helped me prepare for my first Boston Marathon.   When I found her at mile 20 I felt like I had found a guardian angel.  She told me that I had to decide what I wanted to do, for me.  I wanted to finish, but was worried that by then my family had already been waiting four hours for me.   I was worried the kids would be restless, that they needed to get home so they could get to school the next day.  My decision to carry on solidified when I talked to Todd.  He told me, “Don’t worry about us.  If you want to finish, finish.  We don’t mind waiting.  And Helen wants you to finish.”

It was this thought (and maybe the flat soda Mary gave me, too!) that buoyed me on.  I ran up Heartbreak Hill and ran for most of the rest of the race.

Enormous thanks go now to the People of Boston.  Last year I had been amazed by the outpouring of support and cheer from the spectators along the marathon route, but I was doubly so this year.  In addition to cheers and signs and offers of water and food, so many people thanked me for running, for making Boston Strong.  Thanked me!

Because I had fallen so far behind, by the time I reached the final few miles race volunteers were beginning to clean up the streets of water cups and debris, but people we still cheering!  The course was still packed with spectators.  Words can’t express how heartbreakingly bittersweet it was to run the last four-tenths of a mile that I couldn’t last year.  I cried when I saw Boylston Street and all the crowds there—still cheering for every single runner who came by more than six hours after the race started.

Crossing the finish line in the Boston Marathon is something I will never forget, ever.  I don’t think I even realized how much it would mean to me to be able to finish what I started in 2013.

After receiving my medal

I think part of what drove me to finish was demonstrate to my kids how important it is to persevere.  And I couldn’t bear the thought of not crossing the finish line, after all this time and effort, knowing I won’t likely be back in the Boston Marathon again.


Final thanks go to my mother and her sister, Anne, for nervously waiting so long for me while standing on aching feet; and to our good friends Marcia and Neil—my virtual running partner, who stayed to see me finish after running the marathon himself.  The most special thanks go to my husband, Todd, for putting up with my crazy running habit and for carting our kids to distant cities so I can race; and to my children for waiting like angels for so many hours to see their Mom chasing her dreams.
~~~
This experience was a little lesson to me that one really does have to prepare properly for a marathon!
…And that I'm moving out of my house if anyone gets sick before the Hartford Marathon in October ;)


PS.  The photo of Jeff and me has taken on a life of its own.  A friend of mine from CTF saw it on my Facebook page.  She forwarded it to the President of the Children’s Tumor Foundation, who forwarded it to the Director of Neurofibromatosis Inc. Northeast!  It has been labelled “We’re All on the Same Team When It Comes to Ending NF”.

Friday, April 18, 2014

Running Update:
3/29  19.6 miles in 3:25:11
4/2  7.6 miles in 1:12:59
4/4  5.0 miles in 47:16
4/6  15.0 miles in 2:27:01
4/9  3.2 miles in 28:41
4/11  5.0 miles in 45:36
4/13  7.6 miles in 1:11:03
4/16  3.1 miles in 32:59
Done with the taper—only three days until the Boston Marathon!!  I can’t believe how nervous I am, despite this being my sixth marathon and my second in Boston.  I don’t know how I am going to react physically and emotionally to being back in Boston for a marathon.  There is no denying this is going to be an historic event!  I wish I had some profound comments to make—perhaps after the race.  Meanwhile, I bring you a collection of miscellaneous items that haven’t made it into my other posts…

Running-inspired songs from my playlist, volume 3
(To see vol. 2, see my blog entry from 9/2/13.  To see vol. 1, go to my original blog, and read the post from 3/22/13.)

Nonono “Pumpin’ Blood”
Key lyrics:  “It’s your heart.  It’s alive.  It’s pumpin’ blood.”

Matt & Kim “Good Ol’ Fashion Nightmare”
Key lyrics:  “Your left foot in front of right.”

OKGo “This Too Shall Pass”
Key lyrics:  “Better run like hell when you hit the ground.”

NF Update:
We’re about to complete cycle 2 (eight weeks) of AZD6244 and Jane is still tolerating the medication fairly well.  It has done a number on her skin (awful itching, rashes) but nothing more.

At one of Jane’s recent specialist visits:
Intake Nurse:  “Under ‘medications’ you wrote ‘AZD6244 twice a day by mouth’.  Do you know the dose?  We really need to know the dose of her medicines.”
Me (what I am thinking):  Are you kidding me?  I told you it was experimental.  NOBODY knows the dose of this medication.  I could say 140.6 micrograms and it would be meaningless to you.
Me (what I actually say):  “Two tablets.”

Jane Update:
Happy news—Jane turned seven!  We had a celebration at home with family on her birthday, then had fun at a party with friends a few days later.

Jane in the Birthday Girl Throne



Party birthday cake

More birthday wishes at home


ulations last June?!? Perhaps it may not have changed what we'd have done for the last six months, but at least I would have been mentally prepared for this end result. I had just started to feel secure that maybe Gleevec was actually going to help us--now we have to start all over with something new...
I know there's nothing for anyone to do or say--we have to just keep plugging along like everyone does. I really just needed to vent...
the last six months, but at least I would have been mentally prepared for this end result. I had just started to feel secure that maybe Gleevec was actually going to help us--now we have to start all over with something new...
I know there's nothing for anyone to do or say--we have to just keep plugging along like everyone does. I really just needed to vent...
And finally, a snap-shot of recent Wednesday…

My Day Off, part II
(To see part I, go to my original blog, and read the post from 2/27/13.)
6:15am Rise, dress.
6:30am Wake Jane to take her medication, then tuck her back in to sleep.
6:30am Wake Helen and Alec, prepare breakfasts, make coffee, pack lunches and backpacks, get Helen to bus for 7:30.
7:30am Wake Jane.  Ensure that Alec and Jane are dressed appropriately and fed.
8:15am Get Alec to bus.
8:30am Bring Jane to pediatrician for clinical trial-mandated biweekly check-up.
9:15am Bring Jane or clinical trial-mandated biweekly blood work.
10:00am Check Jane into school.  Meet with Jane’s teacher, principal, reading specialist, and school nurse to update them regarding Jane’s status.
11:00am Remain at school to help out with Reading Centers in Jane’s class.
12:00pm Back at home, inhale lunch.
12:30pm Run 7.1 miles, shower, change.
2:30pm Return e-mails, return calls for work.
3:30pm Pick up kids from school, supervise the start of homework.
4:30pm Bring Alec to swimming lessons.
5:00pm Help Helen make red velvet cup cakes with cream cheese frosting for a school event.  Prepare dinner.
6-6:30pm Dinner.  Must finish dinner by 6:30 so Jane can take her medication on an empty stomach at bedtime.
6:30pm Clean kitchen, supervise more homework, piano practice.
7:30pm Baths for kids, bedtime stories.
8:30pm Tuck kids into bed.
9:00pm Evening computer work:  review test results, prepare charts for office tomorrow.  Update blog.
11:00pm Collapse into bed.


Next post with be after Boston!  I hope to have a good report and lots of pictures :)

Friday, March 28, 2014

Jane/NF Update:
The last month and a half has been a whirlwind—so much has happened since my last post.  Will start with a day-to-day accounting of the first couple of weeks:

At the time of my last post we had just received the final results of Jane’s most recent MRI and learned that her tumor had continued to grow while on Gleevec this past year.
Plot of the volume of Jane’s tumor over time.  (Note:  Every data point represents an MRI.  It doesn’t include the three MRIs Jane had before she started medication for her tumor, nor does it include two more she had while being evaluated for a possible stroke at age 4.)
 As of February 19th the available options were:
  1. Continue Gleevec.  The slope of Jane’s tumor growth appears to flatten a bit in the second six months of the trial, but it was unclear to Jane’s doctors whether this truly indicated a small response, or if it was just within the margin of error of the test.  One option was to stay on Gleevec given that, in some children, Gleevec has taken longer to have an effect.  Jane had so few side effects on Gleevec—it was so nice being on such a medicine this past year...  Guess it was too much to hope for that it would actually help, too :(
  2. Join a pilot study with a new drug called Sutent, a drug currently used for some kidney and stomach cancers.  The side effect profile for this drug seemed onerous.
  3. Join a Phase I trial of a new drug, AZD6244, also known as selumetinib.  We have always preferred not to participate in a Phase I trial unless absolutely necessary.  Phase I is testing to determine what is the highest tolerable dose of a medicine (to determine the “toxic” dose).  Once the tolerable dose is established, a drug can move to Phase II when it is tested to see if it is actually effective.  However, this particular medicine would not likely enter Phase II until later this year.

At that time Todd and I decided to continue Gleevec for another six months in the hope that the previous six months indicated stabilization.  Then we began waiting for insurance approval for Gleevec—since we’d no longer be part of a study we would have to get the medicine through a regular pharmacy.  It costs over $1400 a week.

~ ~ ~

A few days later I spoke to one of the doctors involved in the Phase I trial of ADZ6244.  Dr. Brigitte Widemann had been Jane’s doctor when she was treated with interferon alpha-2b from 2010-2012 at the National Institutes of Health, and I have continued to consult with her even after we finished that trial because I trust her so!  Dr. Widemann shared with me her preliminary results with ADZ6244:  out of 17 children who have been on the medication until the 1st follow-up MRI (5 months), ALL had a reduction in plexiform neurofibroma tumor volume.  If Jane joined this trial, she would be the final enrollee in Phase I, and as luck would have it, she would start at the same dose as was planned for the upcoming Phase II trial.  In effect, it would be like starting Phase II, but with just a few more blood tests.

The protocol for the Phase I trial would be:
--Baseline visit for echocardiogram (because one of the rarer possible side effects, heart failure), EKG, blood work, eye exam (because of the risk of problems with the cornea and retina!) and MRI.  We could use the MRI data from the study Jane had done in Indiana earlier in the month, as long as we enrolled at NIH within one month of the MRI date.  That gave us until March 3rd to get all the other testing done—less than a week away!
--Return after 4 weeks for blood work.
--Return after 12 weeks for blood work, echo, EKG, eye exam again.
--Return after 20 weeks for above plus MRI.
In between we'd see our own pediatrician for blood work every 2 weeks for the first 3 months, then monthly until 5 months.  OMG.

The next day, February 24th, we decided to go for it.  It meant Jane missing more days of school and me rearranging a full office schedule, but the potential benefit seemed great.  I get chills every time I think about the possibility of Jane’s tumor shrinking—but then I freak out when I remember that she will only be the 24th child to ever take this medicine…  It is terrifying to read the possible side effects, but we are hoping for the best.

Amidst all of this last-minute decision making poor Helen was home sick with a stomach bug, and I had Jane at an ophthalmology appointment—we still didn’t have an answer for her eye turning inward.  The ophthalmologist didn’t have an answer that day, either, and referred us for an appointment with a pediatric neuro-ophthalmologist.  (Can you say super sub-specialist?)

~ ~ ~

Two days later Jane and I were back in Bethesda, MD at the NIH to enroll with Dr. Widemann.

One lovely feature of NIH is the Children’s Inn (www.childrensinn.org), a residence for patients and their families to stay while receiving treatment at NIH.  It has kid-friendly everything:  playrooms, living rooms, a playground, a fireplace, a library, an arts and crafts room, a garden, and a therapy dog.  Each child also has a mailbox into which every night is delivered a special treasure (usually something like stickers, cards, coloring pages, crayons, or small toys).  The previous occupants of our room must not have checked their mailbox regularly, because when Jane opened hers there was at least a week’s worth of treasures inside.  Jane gasped, “They must have really missed me!”
Jane with her loot.

Another benefit of staying at the Children’s Inn is the opportunity to meet other families facing medical challenges.  The first evening we met Asia, a 5 year old girl from Italy whose twin sister had a yet-unidentified severe neuro-degenerative disorder.  Her family was at NIH looking for possible answers.  Asia did not speak any English, but that did not stop her and Jane from becoming fast friends.  She taught us how to say “Buonnanote”.  We also met Ali, another five year old who asked me in broken English what tests Jane was going to have.  He asked, “Will she have CT scan?”—making a whirring sound with his mouth and motioning his arms as if pushing an imaginary gurney into a scanner.  It occurred to me that “CT scan” should not be part of the every-day vocabulary of a five year old.

Jane and I spent nine hours at the hospital our first full day at NIH going from test to test, appointment to appointment.  Despite this she remained bouncy and smiling, reveling in the new kinds of fist-bumps she had learned from various health care workers that day.  That evening back at the Children’s Inn Jane enjoyed a magic show after dinner.
Jane with Asia (light pink), Ali (stripes) and others enjoying a show.


The following day we signed in to the hospital 8:55am and didn’t sign out of the hospital until 8:15pm.  Jane took her first dose of AZD6244 then had blood drawn at 30 mins, 1 hr, 2 hrs, 3 hrs, 5 hrs, 8 hrs, and 12 hrs after the initial dose.  Ugh.  Jane’s first grade class has learned the definition of the word stamina as being able to do something for a long time—they use it in the context of trying to extend the length of time they can read in one sitting.  I told Jane I thought she had more stamina for medical tests than any person I know.

Our final day at NIH included just a single final blood draw.  Before we headed over to the hospital Todd texted me that our insurance company sent a letter denying coverage of Gleevec after all.  This solidifies for me that we made the right decision to give AZD6244 a try.

~ ~ ~

Back at home, we set up our regimen for taking AZD6244.  We have to keep a meticulous medication diary.  Doses must be taken twice a day on an empty stomach, which is defined as one hour before eating or two hours after eating.  Doses may not be taken less than 10 hours apart.  If we miss more than 15% of the doses we will not be permitted to continue the study.

We’ve settled into the following schedule:
Mornings—I get up at 6:30am and wake Jane to take her medicine.  She swallows two tablets whole with a glass of water, then goes back to sleep.  I wake her up again at 7:30 for breakfast and to get ready for school.
Evenings—we must finish dinner by 6:30pm so that Jane has at least two hours before her 8:30 bedtime when she takes her medicine again.  As if I need any more pressure to get dinner on the table by 6pm!!

We must also document any side effects and their severity—though no one knows exactly what the side effects may be since so few people have ever taken this medicine.  Here is a list of possibilities:

The lists below show the most common and the most serious side effects that researchers know about. There might be other side effects that researchers do not yet know about. If important new side effects are found, the study doctor will discuss these with you. 
Common, some may be serious (in 100 people receiving AZD6244 hydrogen sulfate, more than 20 may have): 
Discomforts causing symptoms 
• Diarrhea 
• Nausea or the urge to vomit 
• Vomiting 
• Swelling of the arms and/or legs 
• Fatigue or tiredness 
• Acne 
• Skin rash with the presence of macules (flat discolored area) and papules (raised bump) 
Risks that may or may not cause symptoms 
• Increased blood level of an enzyme (called CPK) which may indicate muscle damage. 
Occasional, some may be serious (in 100 people receiving AZD6244 hydrogen sulfate, from 4 to 20 may have): 
Discomforts causing symptoms 
• Belly pain 
• Constipation 
• Dry mouth, skin 
• Irritation or sores somewhere in the lining of the mouth, which may cause difficulty swallowing 
• Fever 
• Bruising, bleeding 
• Loss of appetite 
• Dizziness (or sensation of lightheadedness, unsteadiness, giddiness) 
• Headache or head pain 
• Difficulty sleeping or falling asleep 
• Cough 
• Shortness of breath 
• Itching 
• High blood pressure 
• Blurred vision 
Risks that may or may not cause symptoms 
• Lack of enough red blood cells (anemia) which may cause fatigue 
• Increased blood level of a liver enzyme (ALT/SGPT)
• Increased blood level of a liver or bone enzyme (alkaline phosphatase) 
• Increased blood level of a liver enzyme (AST/SGOT) 
• Decreased number of a type of blood cell that helps to clot blood (platelet) that may result in bruising or bleeding 
• Decreased levels of a blood protein called albumin 
• Decreased blood level of magnesium 
Rare and Serious (in 100 people receiving AZD6244 hydrogen sulfate, 3 or fewer may have): 
Discomforts causing symptoms: 
• Infection, especially with dangerously low levels of a type of white blood cell (neutrophils) 
• Decrease in heart's ability to pump blood during the "active" phase of the heartbeat (systole) 
Skin toxicity may arise from exposure to the sun. To help prevent skin effects, cover any exposed body parts with light colored clothes when in the sun and use sunscreen (SPF 30) on all exposed skin. Limit exposure to the sun, especially in the middle of the day when the sun is most intense. 
There might be other side effects that we do not know about yet. These side effects could be dangerous or life threatening. We will be checking you closely to see if any side effects are happening. Side effects of drugs like AZD6244 hydrogen sulfate usually get better if the treatment is stopped, but in some cases they can be serious or long lasting. In the meantime, if you do have side effects, we may recommend medicine or treatments to try to control them and make you comfortable. 

(3/19/14  Just in case you thought we were slacking, add to Jane’s list of tests a 2-1/2 hour neuro-ophthalmology visit back at home—the third eye exam in as many weeks.  Jane hates having her eyes dilated—more than having blood work.  This doc also had no answers, but at least Jane’s eye seems to have improved on its own.)

~ ~ ~

3/25/14 Back to NIH!  Our first follow-up visit after nearly completing our first “cycle” (four weeks) of AZD6244.  This is our third trip out of state for Jane’s treatment within two months.  Thankfully it is just an overnight trip, and includes just one full day at the hospital.

The worst side effect of the medication so far is to Jane’s skin.  She’s developed several funky rashes and sensitivity to certain things that have never bothered her skin before—including the numbing medicine we use before blood draws :(  However, if that’s the worst it gets, we’ll take it.

A first this visit:  Jane WATCHED her blood being drawn instead of closing her eyes.  Actually watched the needle go into her arm without flinching.  Don’t know how that makes me feel…

Nota Bene:  If you are ever in need of chocolate milk for a reward but the Au Bon Pain at the NIH Clinical Center only has regular milk, you can ask the nice lady at the counter to give you a shot of chocolate in a separate cup in which to mix your milk :)

Running Update:
Haven’t reported on my training in a long time.  Here are the last two months—much less than it should be, but as much as I could manage.  I have a 22 mile run planned for tomorrow and then I start to taper—Boston is only three weeks away!  For those of you watching, I will be wearing bib #32024 :)

2/1/2014
7.6 mi
1:13:33
(visit to Indiana 2/2-2/4)


2/5/2014
7.6 mi
1:16:31
2/7/2014
5.0 mi
46:38:00
2/9/2014
10.0 mi
1:37:34
2/12/2014
7.6 mi
1:12:18
2/14/2014
7.5 mi
1:10:22
2/16/2014
15.1 mi
2:32:38
2/19/2014
7.5 mi
1:12:52
2/21/2014
5.0 mi
46:40:00
2/23/2014
12.0 mi
2:00:37
(visit to NIH 2/26-3/1)


3/2/2014
5.0 mi
49:18:00
3/5/2014
7.6 mi
1:12:55
3/7/2014
7.6 mi
1:12:20
3/9/2014
12.5 mi
1:59:10
3/12/2014
7.2 mi
1:09:43
3/14/2014
5.0 mi
47:12:00
3/16/2014
18.2 mi
2:59:15
3/19/2014
3.1 mi
27:36:00
3/21/2014
5.0 mi
44:38:00
3/23/2014
12.0 mi
1:57:21
(visit to NIH 3/25-3/26)

Kristy Update:
Just wanted to let you all know that I am sorry if lately I may have been distant, pre-occupied, less social than usual… One might think I should be happy—almost a month with so far manageable side effects.  In truth, I’m terrified.   And weary.

Wednesday, February 19, 2014

Warning:  this one’s going to be a downer.  Sorry.  I’ve toned it down quite a bit, but the bottom line is that this blog is about life with NF, so I’m afraid I have to share this !@#$% roller coaster that we ride.

NF update: 
Sad, frustrated, and really angry all at once.  Just learned from the doctor running Jane's Gleevec trial that her tumor has progressed more than we'd been led to believe.  Last June we were told it was "stable"; the same a few weeks ago. However, just got an email that they (finally!!) calculated the volume of the tumor, and all told it's grown by 25% over the past year--more than the 20% limit for it truly to be considered stable. Why didn't they do the calculations last June?!? Perhaps it may not have changed what we'd have done for the last six months, but at least I would have been mentally prepared for this end result. I had just started to feel secure that maybe Gleevec was actually going to help us--now we may have to start all over with something new...

Running update: 
Can’t even bring myself to post my running log.  I’m back on track training for Boston, but who cares?  The racing, the fundraising—it clearly isn’t enough…

Jane Update:
Happy, beautiful, smart, kind…and mercifully oblivious.

Monday, February 3, 2014

Addendum:
Spent a looong day at the hospital, but worth it to hear the news:  the preliminary reading of Jane’s MRI shows her tumor seems STABLE!  We only have the two-dimensional data right now—it will take some time to calculate the volume of the tumor—but our doctor is confident enough in the results to have us restart the Gleevec.

Now we enter new territory:  the clinical trial from which Jane received Gleevec was only one year long, so we will be continuing the Gleevec off-study, as a regular (albeit off-label) prescription.  Jane has never taken a medication for her tumor that wasn’t part of a clinical trial—there just haven’t been such drugs available.  We will have to go through our insurance company and hope it covers Gleevec.  Our doctor at Riley Hospital has promised to advocate for us.

The anesthesia really knocked Jane down pretty hard today.  She came out of anesthesia at about 10 o’clock this morning, but wasn’t really able to open her eyes and sit up until 3 o’clock this afternoon. We managed to make it back to our hotel where she rested for another couple of hours.  She was determined to have her after-hospital treat at the Indianapolis Steak N Shake, so against my better judgment, we went there for dinner.  Jane did perk up enough to charm the manager into giving her a shake on the house, but I ended up carrying her back to our room when she ran out of energy.  She had a warm bath and brushed her teeth, but was disappointed afterward that “I can still feel the hospital feeling”.  A good night’s sleep should fix that.

We still don’t have an explanation as to why Jane’s eye muscle isn’t working properly, but at least we know it’s not because of progression of her tumor or a vascular issue (which can be the case in NF).  For now we will just have to assume it was some combination of NF and the viral illness Jane had, and hope it continues to get better as she recovers.


Thank you to everyone for the good thoughts, vibes, wishes, prayers, luck, and love—it all helped me get through these last few days!
Currently at Riley Children’s Hospital in Indianapolis waiting for Jane to come out of her MRI (2-1/2 hours!) so finally have a chance to catch up with the blog.  Going to change up my usual report order…

Jane Update:
Good riddance to January!  Jane had a rough month, sick with one virus after another—she missed seven days of school in January alone!  On top of that she developed a lazy eye on her right side (a cranial nerve VI palsy) and has been seeing double for the past two weeks.  This happened once before, about two years ago, when she had a prolonged illness.  She had an extensive work-up at the time, including multiple MRIs and a night in the ICU.  What the doctors ended up deciding (as I understood it, though they weren't completely sure) was that her tumor is close enough to the nerves that control her eye muscles that they can sometimes be a little weaker, particularly if she is worn out or ill.  The double vision has made it hard for Jane to read, which wasn’t an issue two years ago.  The eye doctor suggested temporarily patching the eye to prevent her from seeing double.  Jane didn’t like the feel of the patch, so instead uses her hand or even Puppy to cover her eye.  As adaptable as she is, I have noticed Jane has been more irritable this past week.  It sucks to have double vision!  Hoping that this will resolve on its own as Jane gets stronger again.  I guess the MRI today will tell us if there are any other new developments to worry about…

Running Update:
1/15  4.5 miles in 39:13
1/17  5.7 miles in 51:14
1/19  10.0 miles in 1:38:24
1/26  5.0 miles in 48:33
1/29 7.6 miles in 1:13:22
2/1  7.6 miles in 1:13:33
Lost a whole week of training while sidelined with a respiratory virus (courtesy of Jane), and even once I started running again had to take it easy.  Found myself feeling pretty down for several reasons—largely due to Jane’s eye problem and what it might mean, but also from anxiety in anticipation of our trip to Indiana University, from the frustration of falling behind in training (the Boston Marathon is only 11 weeks away!), and probably in some part due to not having my usual mental therapy in the form of running!  Had to get a pep talk from Sarah Coulam (director of the NF Endurance Team), watch “Pep Talk” by Kid President multiple times, and depend on you all for you messages of love and support!  During my last run I listened to OK Go’s This Too Shall Pass (“You can’t keep lettin’ it get you down…”) on repeat for 7 miles.  I am sorry to say none of it has worked to perk me up for very long…only good MRI results can do that :(

NF Update:

The good news for NF to come out of the Constable Family this week is from Todd:  he and a colleague have developed a method for increasing the speed of MRI studies (see Yale News), which may mean that little kids like Jane won’t have to be sedated for long MRI tests anymore.  Thank you, Daddy!

Sunday, January 12, 2014

Running Update:
1/5  5.0 miles in 46:43
1/12  7.6 miles in 1:11:20
Happy New Year!  Our 2014 got off to a bit of a rough start with travel mishaps, snowstorms, and a stomach bug that ran through the house, but hopefully now we’re back on track :)
I’m two weeks late, but finally getting into training for Boston again.  I’ve printed out my training schedule—that makes it official.


Jane (and family) update:

Had another wonderful trip to Canada and the Lake of the Woods over the holidays.  It was one of our colder visits:  -34 degrees Celsius on New Year’s Day!
















NF Update:

Three weeks until we return to Indiana University for another MRI.  Hoping, as always, for a report of “stable”.