Running Update:

9/11/2018	Run		3.2 mi	31:36
9/12/2018	Run		7.6 mi	1:16:50
9/14/2018	Run		5.0 mi	47:40
9/15/2018	Swim		1600.0 yd
9/16/2018	Run		10.2 mi	1:46:14
9/18/2018	Run		3.2 mi	30:41
9/19/2018	Run		7.6 mi	1:15:44
9/21/2018	Run		5.0 mi	47:58
9/23/2018	Run		20.5 mi	3:30:47
9/26/2018	Run		3.1 mi	30:35
9/28/2018	Run		5.0 mi	48:56

Less than a month until the Marine Corps Marathon!  I have one more 20+ mile run to go next weekend before I start to taper.  Yay!  As always, you can donate to our campaign here:

www.KRath4Jane.com

NF Update:

This week we finally received the final results of Jane’s MRI from our visit to NIH earlier this month. Unfortunately, her tumor volume showed a little uptick, as you can see in the plot above.  Dr Widemann called it a “very minimal increase by numbers, which is within error of measurement.”  That said, she went on to say, “I think we made the right decision increasing the selumetinib dose.”  I do, too.

For background:  Jane’s dose of selumetinib is based on body surface area, or BSA, a combination of height and weight measured in square meters.  Her height and weight are measured every 6 months at our NIH visits and her dose is adjusted accordingly.  The full dose of selumetinib for Jane would be 50mg/m2/day.  However, ever since Jane had a skin reaction to selumetinib shortly after she started the medication four years ago, she has been on 30% less than a full dose (as was required by the study protocol).  That means her target dose right now is about 35mg/m2/day, which translates to 30mg twice a day, what Jane has been taking since our visit to NIH 3 weeks ago. 

Given that Jane herself is growing so fast, and that it now looks like her tumor is growing again, too, I was nervous about waiting a whole six months to recalculate and/or increase her dose again.  Thankfully, Dr Widemann agrees: “I think it would be absolutely fine to check the BSA again in 3 months at home, especially as JC is undergoing so much change right now. We could then dose adjust depending on BSA.” 

So, we’ll continue 30mg twice a day until the beginning of December and see how much taller Jane is at that point.  I’ll admit, I’m not thrilled to see the increase in Jane’s tumor, however slight, but will try to remember that it does not necessarily mean this will continue.