Running Update (the good news):

5/2  5.0 miles in 43:52

5/4  7.5 miles in 1:11:43

(See—I can run fast(er).)

Felt good to get back to running after recuperating from Boston.  One rule of thumb for recovering after a race is to rest one day for every two miles you raced.  I made it ten days but couldn’t resist getting out there on the few sunny, warm, breezy, spring days we’ve had lately.  I’m putting Boston behind me, and to that end I bought a new pair of running shoes.  As Runner’s World editor Mark Remy observes about the smell of new running shoes:  “Smells like…potential.  And formaldehyde or something.  But mostly potential.”

                                                    

It may be appropriate to add a few new songs to my running playlist:

Bleachers “I Wanna Get Better”

Key lyrics:  “I wanna get better.”

Birds of Tokyo “Lanterns”

Key lyrics:  “There is more I could be.”

Jane Update (the bad news):

Jane has been off the study medication for over ten days due to a drug reaction. 

A couple of days after the Boston Marathon Jane developed a severe rash—she was covered head to toe in spots, was scratching her skin off, and couldn't sleep for two nights.  All of our doctors (at home and at NIH) were fairly confident it was from the AZD6244.  NIH gave us a few suggestions (Benadryl, hydrocortisone cream), but nothing worked.  Ultimately, they told us to temporarily stop the AZD6244.  Our awesome hometown pediatrician gave us a prescription-strength antihistamine and strong steroid cream to soothe the itching, allowing us to avoid oral steroids. 

Jane's rash mostly gone now—she’s just got all the scratches left to heal.  But now we’re left to ponder what to do about the study medication.  Dr. Widemann and our other doctors at NIH have been conferencing and brainstorming about how to proceed.  They have not had any other patients with this reaction.  We don’t want to give up on this drug—it has so much potential and we have already invested so much in this trial.  We are allowed a reduction in medication dose and still remain in the study, but if we make too much of a reduction Jane is less likely to benefit from the drug.  It seems like we will reduce the dose by 30% and give Jane an antihistamine to take with it.  The question now is whether we will start that regimen now, or wait until we return to NIH on May 19th.

NF Update:

May is NF Awareness Month!  I will be posting facts about NF on Facebook daily to make you all more “aware” :)

For those of you who haven’t succumbed to Facebook, here is a link to Fact &Statistics about NF on the Children’s Tumor Foundation website.