Tuesday, April 28, 2020

Running Update

7.6 mi

5.0 mi

9.4 mi

7.6 mi

5.2 mi

9.1 mi

5.0 mi

7.6 mi

9.1 mi

5.0 mi

Still running while staying safe during this pandemic.  I’m registered for the New Haven Half-Marathon on Labor Day and the New York City Marathon on November 1st, but there’s some skepticism in the running community that any of the big fall races will go on as planned.  (Dumb Runner author Mark Remy puts it this way:  “Adorable Child Still Believes in Tooth Fairy, Unicorns, 2020 Fall Marathons”)  For now I’m just enjoying my runs and holding off on training until the summer.

NF Update
This big news this month, of course, was FDA approval of selumetinib, the study drug Jane has been taking for the past six years!  We are thrilled, especially after all Jane has been through to get to this point.  We got a lot of news and social media coverage, starting with this announcement from the Children’sTumor Foundation:  www.ctf.org/first-drug-approved-for-nf.  It featured a video of Jane and me and our comments about the approval

Our picture even made it onto Cancer.gov!

Selumetinib’s brand name will be Koselugo (pronounced co-sell-you-go), manufactured by AstraZeneca (www.koselugo.com). As my friend Simon Vukelj at the Children’s Tumor Foundation told me, “You'll recognize the 'selu' from 'selumetinib' in 'koselugo'.”

You might say that there’s been a “selu-bration” in the NF community this month :)

The words that meant the most to me were from another NF Mom:  I am so grateful to all who made this bold and courageous decision to enroll their child in the clinical trial for selumetinib; the kind of choice that a parent should never have to make, but that they are grateful to have available when there is nothing else. 

We also received this letter from our team at NIH.

Jane Update
Jane is staying healthy, busy enough with distance learning from her school but enjoying extra time for reading and watching movies and taking walks with the family.  So far her local MRI is still scheduled for mid-May—we’re hopeful it will go as planned.

Keep an eye out for lots more pictures of Jane during the month of May--NF Awareness Month!


Finally, I’d like to dedicate this blog post to Jane’s Grandpa Bob, who passed away this month.  Today would have been his 91 st birthday.  He was a true gentleman-- kind, considerate, and unassuming.  Our lives won’t be the same without him.  He could always be heard whistling happily, and I won’t ever be able to listen to this song without thinking of him.

Three generations of Robert Constable

Friday, April 3, 2020

Running Update:

7.6 mi

5.0 mi

7.6 mi

5.0 mi

10.2 mi

7.5 mi

5.0 mi

5.0 mi

Just before my last post the NYC Half Marathon had been canceled due to COVID-19.  Not surprisingly, the Vermont City Marathon scheduled for May has now also been canceled :(
So as of this moment, I don’t have any races planned until the New Haven Road Race on Labor Day.  I’ll continue to train, and if the pandemic abates sooner than expected, maybe I’ll find a summer race to register for.  But for now, I’m just going to maintain my miles.

In other pandemic/running news, it turns out that Dr Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease, is an avid runner.  (As if we needed a reason to love him more!)  At age 79 he still runs 3.5 miles a day, even when working 19-hour days during the current coronavirus pandemic!  Read about his running here.

NF Update:
More good news regarding selumetinib, Jane’s study medication.  Phase II of the NIH clinical trial of selumetinib for plexiform neurofibromas was published in the New England Journal of Medicine on March 18.

Jane started on the drug in Phase I, the results of which were published in the NEJM back on 12/29/16.  I wrote about it here: nfemom.blogspot.com/2017/01/.

When the National Cancer Institutes tweeted about it, they used a picture of Jane and me!

The Director of NIH, Dr Francis Collins, wrote an article reflecting on the study.  In it he gives some background about NF and describes his personal connection to NF patients:

Jane Update:
As anticipated, our 6-month return visit to NIH this week was canceled due to COVID-19.  This is the email we received from our team last week:

Our team has reviewed J in detail during our NF Clinic this morning, as our study sponsor said that our team could decide which evaluations would be necessary to complete, either at home or NIH and either now or in the future, for J to continue on MEK/Selumetinib.  Based on that, J does NOT need to come to NIH for any evaluations.  J’s next visit to NIH will be for her pre-cycle 83 visit.  I’m including a list of each evaluation that J would have had completed below, with our thoughts on each:
  • H&P with Anne: We will do this “virtually” over FaceTime through our phones.
  • Vital Signs: Not necessary at this time and will be deferred
  • Measurements (Height, Weight, & Body Surface Area): Not necessary at this time and will be deferred
  • Labs: Not necessary at this time and will be deferred
  • Urine: Not necessary at this time and will be deferred
  • MRI: We would recommend having an MRI done at home, when it is safe to do so, given the current COVID-19 restrictions.  Our first priority would be a clinical MRI of J’s abdomen, and if J was going in for the abdominal MRI, to also get a face/sinus/ENT MRI (what we use for the MEK re-staging), since we did reduce her dose of MEK in October.
  • Echocardiogram: Not necessary at this time and will be deferred
  • Eye Exam: Not necessary at this time and will be deferred
  • EKG: Not necessary at this time and will be deferred
  • Additional Consults:
    • ENT: Not necessary at this time and will be deferred
    • Dermatology: Continue management with dermatologist at home.
    • Neurosurgery: Depending on when the MRI will take place, would determine when we proceed with the Neurosurgery consult.

As of this moment Jane is scheduled for her MRI at home in mid-May, the first available date since all non-urgent medical appointments in our area are on hold until after April 30.  It might be that this date will get pushed back as well depending on what happens with the pandemic, but we’ll take one day at a time.

A FaceTime visit with Anne, the Nurse Practitioner on our team.

In happier news, we celebrated Jane’s 13th birthday this week!  We joked that she is now a “quaran-teen”.  She won’t be able to celebrate with her friends in person, but we had a family celebration and I even managed to procure an ice cream cake, Jane’s favorite.

Singing for Jane!

Thirteen presents for a thirteen-year-old!

Lego Orthanc!  More exciting than the books :)