From: Timko, Terry M
Sent: Monday, June 27, 2016 9:48 AM
Subject: Maura Update - Monday June 27th

Hello again friends and family,

This story is starting to become an adventure novel, with unexpected twists and lots of suspense.  I came to this conclusion after a most crazy week, with the plan and prognosis changing by the day, some days by the hour.  So I’ve been meaning to write to you for the past several days but to be honest was a bit overwhelmed as to how to communicate so much to so many.  So I’m just going to bang it out.

Tuesday we ended up in NYC at Memorial Sloan Kettering (MSK – link link) for treatment and an unexpected vacation as we are still here.   This time together has given us time to reflect on how blessed our lives have been and are.  We’ve explored what matters to us, where we have invested our time and resources, and how this journey is changing and reaffirming both our family and our community.  We have 3 amazing children, an extraordinary relationship, a great community of friends, no regrets with regard to how we live our lives and most of all a God and Father who cares for us and shows up every day in small and large ways. Lots of Hope.  I don’t know how we could go through this w/o these truths.

{side note, we thought about our lives and could not come up with any regrets other than we always wanted to live in NYC but never had the chance. lol! we spent the next 3 months in NYC living like locals initially at the DoubleTree in Chelsea - the nicest staff of any hotel I have ever been to and that is a lot - and later at the Hope Lodge a couple blocks north}

So we are still doing remarkable well mentally and emotionally and I must say better spiritually and relationally.  But I’d be dishonest if I said this was wasn’t extremely hard, at times scary, and that we don’t miss our children and community terribly in this time.

We still don’t know if we have 3 months or 3 years and are living each day with intention.

The run down:

Maura was accepted into a Stage 3 Nivolumeb immunotherapy clinical trial (link 2, link 3) at MSK.  What this means is we will be here for the next 6-7 weeks (home some weekends while she is able) and she will have to return to NYC every 2 weeks as long as the treatment is effective for her or its approved by the FDA.  They were going to start her treatment July 5th but her MRI Thursday showed all 3 tumors grew faster than expected so they are taking a more aggressive approach.  She started immunotherapy Friday, Chemo (Temodar) today and radiation tomorrow.

The travel and being away from home is a hardship financially, but more importantly physically and emotionally.  Maura misses her children and friends - our support system is Cincinnati based. Plus we are not looking forward to being sick away from home and traveling.  I’ve done a quick worst case travel cost model in excel using my FF miles and it came to about $35K for the next 12 months not including medical costs.  That plus Maura not working and us having to outsource a lot of things we would normally do will add up, but not insurmountable.

Several people have offered frequent flyer miles and hotel points.  We would appreciate this and I’ll find someone to coordinate (qualified volunteers contact me directly).  We are hoping to get into the American Cancer Society Hope Lodge which is subsidized housing for cancer patients undergoing treatment away from home.  This is the best option and I’ll know this week if we get in.

The detail for those who are interested:

While everyone responds to these treatments differently they are setting the expectation that she will feel OK the 1st 2 weeks, tiered the 2nd and poor the 3th. The way this treatment works is there will be a battle going on in her brain between her newly over activated immune system and the tumors.  This means swelling in her brain and it will be difficulty to tell the difference between disease progression and the swelling.  Swelling is good, as it means the treatment is working.  It also means her symptoms (language, cognition, memory) will get worse before they can get better.  If the treatment is effective she her symptoms should improve over where they are now in 8 to 10 weeks and we will enter maintenance and whack-a-mole mode, attaching new tumors as they pop up.  If the treatments are not effective then we are in the 3 month range as her tumor growth is fast.  The doctors believe she will respond to the radiation because fast growing tumors respond better than slow ones.  Additionally there is a possibility that her previously diagnosed immune system deficiency (IGG Sub-class 4) is the reason for the fast growth.  This may also mean that she will respond better than average to the immunotherapy because Nivolumeb is humanized IGG4.  But we are at the limits of human knowledge at this point.

 

There is hope in these new immunotherapy trials and nearly everyone has told me she should get to a major cancer center as they have much more experience and better outcomes.  Again we are blessed that they took her and she is getting the best care.  That said our hope really comes from the Lord.  As I’ve stated before I believe God can heal her miraculously or through modern medicine.  That is still our prayer and we are up for this fight.  I know many of you are confident of her healing and restoration.  I greatly appreciate your support, especially Josh – you are an encouragement to your mother.

We are planning on Josh and Ethan each visiting her here for a week.  I wish Daniel could make it as well.

OK that is enough rambling for this update.

Terry