From: Timko, Terry M
Sent: Monday, August 08, 2016 7:35 PM
Subject: Maura Update - One Day More!

It has been another 3 weeks and this living and working in NYC chapter is coming to a close.  It has been amazing, but in the end wore us out and we are looking forward to heading home very soon, starting the next chapter of our journey closer to our friends and family.  Thank you again for all your prayers and support - we are truly blessed by our community.

Short Version:

Today is Maura’s last chemo and Tomorrow at 7AM is her last radiation treatment.  Then hopefully home to CVG around 1PM if Delta fixes their systems and we get everything wrapped up here.  We will be back in NYC for immunotherapy next week and then every other week thereafter.

We had a rough 2 weeks as the treatments have taken a toll on Maura’s brain, with tons of intracranial swelling which landed her in the ER.  We are still doing really well but know the reality of what we are facing – I think the ER visit was a glimpse of what disease progression will look like.  We won’t know the efficacy of any of this, beyond improvement or progression of her symptoms (which are amplified the treatments), until her 1^st follow-up MRI now scheduled for the 13^th of September.  We are both really tiered and worn out but a lot better than a week ago when her MRI was scary.  They have effectively “managed” her symptoms vs abating them with steroids.

Long version:

Maura and I are getting progressively tiered for different reasons and are really looking forward to being home with our boys, resting, recovering and getting caught up.

As they predicted the treatments took their toll on Maura and we ended up in the ER last Monday.  We were very concerned it was disease progression but it turned out to be A LOT of swelling in her brain due to the radiation and hopefully the Immunotherapy.  They normally give steroids with radiation treatment to reduce the inflammation side effects.  However, the immunotherapy should also cause inflammation as it triggers the immune system to attack the tumors and treating the inflammation steroids blunt immune system and the immunotherapy’s effectiveness.  So while they could resolve the symptoms in 72hrs w/ steroids they are only reducing them enough so that it is manageable and safe.

2 weeks ago Josh had his turn visiting him mom in NYC.  They created some great memories and had some good times eating, touring central park by pedicab and catching a Radiohead concert a block away at Madison Square Garden.  Josh, like Ethan 2 weeks before, got to free-range in NYC a ton and meet up with online friends.  I think this was great for both of them.

We are grateful for the 1^st 2-3 weeks symptom free in NYC as I believe they gave us the strength to get through the back ½ of this treatment.

I was talking to our oldest son Daniel over the weekend about his perspective on this journey and how his mom and I were handling it.  He thought we were being overly optimistic, and was worried we were not prepared for what was to come.  There may be a bit of truth in that, especially looking form the outside in, but I tend to write these missives while on peeks vs valleys.  I do think we have a realistic view.  Its ok to be scared, sad, confused, … but you can’t live there – there is no profit in it and we have a God and Father who loves us.  We don’t always get to see the bigger picture and all the redemptive work that is going on all around us.

I know my eyes have been opened in many ways.  My perspective and vision has changed.  I see people struggling, less blessed than us, in relationships fighting, … and have such empathy now.  To some degree I was fat, dumb and happy (that’s a Carlos-ism) striving for my goals.  We are super blessed with a an amazing relationship, wonderful children and a great community.  At the same time I have to confess, the less time I have to pray, worship and generally connect with God the harder this is, the poorer my mood and shorter my patience.  I’ve been getting less time as the weeks go on and the load goes up.  Still not sure what to do about this.

I know everyone on this distribution has a different perspective and is being impacted by our journey in their own way.  I hope walking this out with us is in some way redemptive for you.  Just like I have been intentionally seeking out people who have battled cancer, investing time there, I hope to process through this with many of you over the coming months.  Please email, txt or call me directly if you want to meet, talk, have something to share or just hang out.

Logistics:

It is going to be great to be home where our support system is.  I expect Maura to be slow physically and mentally for the next 2 to 3 weeks so we will still limit visitors.  Please contact me directly if you want to visit and I’ll schedule something that fits her nap schedule.   Maura is still not doing email, phone or social media yet.  Visits need to be limited to ~30 minutes.

Daniel heads back to Rochester Institute of technology next Wednesday.  As many of you know Maura homeschooled our boys and our solution this year, instead of sending them to public school for Josh’s Senior and Ethan’s Junior year, is enrolling them at the University of Cincinnati (Blue Ash) for both high school and college credit, plus some classes at Leaves of Learning homeschool coop.  They start August 22^nd .  Ethan’s swimming is ramping up and we will be picking the care of Maura’s mom back up at the beginning of September – we have hired eldercare through August.

I hope Ethan will be driving by the end of September and Josh by the end of October.  Since Maura can’t drive and I’m working, they are going to get familiar with the bus and may need to rely on our community and Uber for rides to make it all work out. 

I’m sharing all of this because I know we will be terribly busy and probably a bit over whelmed the next month or so.  Remember when I said this was a marathon and not a sprint?  I have to admit this is a bigger journey than I thought when we started.  There are just so many things you don’t know to expect draining time, energy and resources.  So now is the time where we probably will need your help the most (meals, driving, staying with Maura when I can’t, checking on her mom, …) and I need to swallow my pride and ask for help.  I’ll be working with Janet and Jeff (plus his understudy Arnaldo J) on our physical needs.  Maura will have diet limitations. We want to manage things so as not to overwhelm anyone and to even things out overtime until we get settled into the new normal.  Stay tuned especially if you are local (we’ll send a separate email).

OK I’ve managed to ramble on enough again.  Be blessed.

With even more love and grace, Terry & Maura