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

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!