Running Update:

6/3/2015	5.0 mi	46:12
6/5/2015	5.0 mi	45:00
6/7/2015	7.6 mi	1:11:46

Just maintenance right now.  Training for the Hartford Marathon doesn’t start for another couple of weeks.

Jane Update:

Jane and I return to NIH tomorrow for the next four days for her restaging.  This means lots of testing to make sure she is not having any adverse effects from the study medication, and another MRI to check to status of her tumor.  (I went back and counted recently—this will be Jane’s seventeenth MRI.)

Here is our schedule for the visit:

Wed 6/10	Arrive at NIH
Thu 6/11	9am – Photography, Room 1N230, 2nd Floor 9:30am – EKG, Radiology, 1st Floor 9:45am – Vital Signs (3 Hts & 3 Wts), Pediatric Clinic, 1st Floor 10am – ECHO, 5NE, 5th Floor 11am – Physical Exam, Pediatric Clinic, 1st Floor 12:30pm – Pre-Anesthesia, Room 2C523, 2nd Floor Lunch 2:00pm – Eye Clinic, OP Clinic, 10th Floor
Fri 6/12	7:30am – Labs, 1NW Day Hospital, 1st Floor 8:45am – Sedated MRI, Radiology, 1st Floor 1:30pm – Family Meeting, 1NW Day Hospital
Sat 6/13	Home

Looong days for an 8 year old!  I always hope I’ve packed just the right items in my backpack to keep Jane entertained through these visits.

Speaking of schedules…  Every family’s schedule is hectic this time of year, what with end-of-year projects, recitals, field trips, exams, and final games.  We’re adding in Todd’s busiest few travel weeks for work and our trip to NIH—I’m maxed out!  I decided to post below the email I sent out a few days ago to my Mom, my husband, Todd, and our awesome sitter, just so someday I can reflect back on the craziness of it all (perhaps fondly, perhaps with relief!)

Day 1

[sitter], FYI.  H has tutoring at home as usual.

J does NOT have piano (lessons over for the summer).  Also different this week:  T and A have a soccer game in Meriden (instead of practice), though they will probably still leave home at about the same time,  I anticipate being home about the usual time.

Day 2

J and I leave for Washington about 10am.

Grandma:  will you pick A up from school as usual and then bring him to piano lessons?

Todd:  will you plan on being home in reasonable time so as to relieve Grandma?

H, A, and T:  the cleaners come on Thursday, so remember to put away anything that you don’t want moved.

Day 3

[sitter]: usual pick-ups and then violin lesson for H.  Would you also stay long enough to bring H to soccer practice?

H:  YOU MUST REMEMBER TO BRING YOUR VIOLIN AND MUSIC HOME TODAY.  THIS IS THE LAST LESSON BEFORE YOUR RECITAL.

Todd:  Will you please remind H to bring her violin and music home today.

Grandma: would you bring H home from soccer practice?

Day 4

Todd:  A has a field trip with his class for the school day.  He needs to wear comfortable clothes and sneakers, and he needs to wear BLUE.  He needs to bring water and a bagged lunch without glass bottles.  He should put on sunscreen and bug spray before school (and bring a hat if necessary).

[sitter]:  usual pick-ups for Friday, no afterschool activities.  Maybe froyo?

Grandma:  T will bring the kids over after dinner for sleepover.

Day 5 (weekend)

Todd leaves at 5am

[sitter]:  Can you pick the kids up at my Mom’s this morning?

It will be a long day for you!  J’s and my flight gets into Hartford, which means we won’t be back in Madison until a little over an hour later.  Any activity you think might be fun for you and H and A that morning?  (Or just chill at home…)  On the schedule:  H has a soccer game, so will need to be there about a half-hour early.  J and I will then meet you and A at home in time for us to go to A’s piano recital.  Could you then collect H from her game and bring her home?  We’ll all reconvene at our house after the recital.  Whew!

Day 6 (weekend)

[sitter]:  If you don’t think you will be too worn out from the day before, would you mind coming over for a couple of hours Sunday morning so I could run?

Grandma:  Would you please watch H and J while I bring A to his soccer game in Cheshire?  I would leave with him about an hour before the game and possibly drop the girls off with you at that time.

Day 7

Grandma: will you come over to the house to get J ready for school and on the bus?

Day 8

[sitter]:  regular after school pick-ups.  The only activity is A has soccer practice.  If you can get him there I will ask his coach to bring him home.

Day 9

Grandma:  THIS IS A NEW REQUEST.  I have had to add a surgery in for this morning.  Could you come over to the house to get J ready for school and on the bus this day as well?

FYI:  H’s recital is this evening.

Day 10

Grandma: will you come over to the house to get J ready for school and on the bus?  And once again, could you bring H home from soccer practice?

[sitter]:  like the previous weeks, can you stay long enough to bring H to soccer practice?

Day 11

[sitter]:  I don’t remember if we discussed this—this is the kids’ last day of school and they have an early dismissal.  My last patient is at 11:30am, but I may not make it out in time to pick up A and J.  Are you available early that day?

Day 12 (weekend)

[sitter]:  I also don’t recall if we discussed this weekend!  It turns out Todd doesn’t arrive home until Saturday afternoon, but both H and A are in a soccer tournament in Cheshire this weekend!  I don’t yet have the schedule—I am hoping that they will have games at similar times so that J and I could just go and hang out at the Cheshire soccer fields and watch all the games.  If the schedule ends up with games at wildly different times, would you be available to either watch J and/or give rides to H or A?  Let me know.

OMG.  I have been feeling a bit nauseated just wondering whether we can pull it off…

On a lighter note, Jane had her end-of-year piano recital this weekend :)

Before the performance.

NF Update:

Exciting news regarding Jane’s study medication.  This week at the NF Conference, the largest gathering of the world’s NF experts in neurofibromatosis, Jane’s doctor, Dr. Brigitte Widemann, presented the results of the Phase I trial of AZD6244.  As readers of this blog recall, Jane was one of only 24 children enrolled in the study to test this new, experimental treatment for NF.  For reference, the tumor on Jane’s jaw and neck is called a plexiform neurofibroma, an inoperable type in her case.

Some key information from the text:

“Plexiform neurofibromas exhibit the most rapid growth in young children, and therefore early intervention in children with growing PNs may result in the greatest clinical benefit. Consistent volume decreases of large PNs has not been reported in the past, and today’s announcement indicates a promising future for the development of effective medical therapies for NF1 related PNs.”

"16 of 24 patients treated with the MEK inhibitor selumetinib (AZD6244 hydrogen sulfate) saw a tumor volume decrease of ≥ 20%".

(See the full text of the article here.)

It was very frightening to be one of only 24 patients trying this new drug, but we have been so lucky to be one of the responders!!  I desperately hope it continues to work well!

PS  This is your donation dollars at work!  Thank you thank you thank you!

PPS  You can always donate here www.krath4jane.com :)

Finally, one more light-hearted note:  Todd brought home a souvenir from his MR meeting last week—an actual toy MRI!  What a perfect gift for Jane!