From: Timko, Terry M
Sent: Friday, October 21, 2016 6:51 PM

Subject: Maura Update - Thursday Oct 20th - Character Development

Wow it has been a month since the last update and this one feels a little rushed.

As reported last time we have been in a much needed peaceful period with Maura taking a break from treatment, letting her brain heal before we begin the cancer fight again.  For us this chapter has turned out to be about character development, reconnecting with and getting to know people close to our story better.  We’ve been able to spend quality time with friends and family, process through what’s going on, share our story and gain from others knowledge.  It has been good to be home and be with the boys.

Maura has been really intentional with her limited time and energy spending it with the boys, meeting with and hanging out with many of you, pushing her therapy and getting neurological rest.  We continue to cover her with prayer and worship and hope to have another group worship session in a week or so.

I’ve gone back to work full time which has gone really well but definitely an adjustment with all I have on my plate.  I have to admit that I’m in a pretty dry place spiritually and need to take better care of myself physically.  Sleep is a real issue.  So I am really looking forward to ManCamp this weekend with 2,000 of my closest friends J.  Highly recommend checking out the video and go next time if you can (I hear WomanCamp is awesome too), it is amazing how much healing and transformation can happen in a weekend.  I’m hoping the Lord uses it to refresh me and kick me out of the funk I’ve been in.

Clinically we are 7 weeks out from the ICU and a lot of steroids later Maura’s symptoms have improved a ton.  Language is labored at times and her short and long term memory are still compromised resulting in slow processing.  Without further brain injury from the tumor or swelling her short term and working memory should improve on its own and her language should improve as she works it and the neural pathways re-route.  Some of this may also be related to residual inflammation in her brain.

While the steroids helped reduce the swelling in her head, they have also taken the expected toll.  She is only sleeping 3 to 5 hrs a night and is retaining a lot of water (like 10-15lbs) which has been really limiting her in many ways.  So they started to taper her steroids about 2 weeks ago in preparation for starting treatment next week - 2 weeks earlier than anticipated.  The results are some of her neurological symptoms have started to worsen at times over the past 2 weeks which has been discouraging.

So we are driving to Memorial Slone-Kettering in NYC Sunday/Monday (they don’t want her flying) where she is getting her MRI, blood work and seeing the doctors.  Hopefully we get good news and they start her Therapy Tuesday and we drive home. The we would be back on our every other week to NYC schedule until her symptoms warrant her staying between treatments.

As we start the immunotherapy it should trigger her immune system to attack the cancer which will lead to a return of the swelling and related neurological symptoms.   She should still be OK for a couple months as the symptoms (hopefully) come on more slowly w/o radiation, flying and chemo.  When she can’t tolerate it any longer we’ll take another pause in the treatment.  Then rinse & repeat.  That’s the plan at least.

Our prayer is for good news on Tuesday, for clarity in decisions required, that she can tolerate the treatments and a high percentage of the tumor cells are susceptible to this treatment.    We also ask that you pray for sleep and the side effects of the steroids would diminish quickly now that she is on a low dose of steroids.

That is all I have for now.  Look for another update next week.  As always we love you and thank you so much for your remarkable prayers and support.  God is good.

-Love Terry and Maura