From: Timko, Terry M
Sent: Saturday, December 24, 2016 11:13 AM
Sent: Saturday, December 24, 2016 11:13 AM
Subject: Maura update Dec 24th, 2016
Dear Family and Friends,
It has been 8 weeks since the last update and this is
turning into an unintentional Christmas greeting as I’m finally finding the
time to wrap it up (Ha!) on Christmas Eve. I know this time of year is a
mixed bag for people. For many it is stressful or sad, for others it is a
joyous time with family and others a non-event. Our prayer is that you
would find peace in the chaos, meaning in your activities and interactions and
draw a little closer to God. I think this prayer is good for any time of
year, but I know at least for us in this season, this year, and with teen boys,
it is something I need to remind myself of as well.
I actually intended to send an update after our last trip to
NYC but for a while there the news changed so frequently, what ever I wrote
would quickly become inaccurate. Then I was too busy and spent the time I
had with Maura and the boys and kept on top of work. Thanks to all those
who reached out directly and indirectly with concern. I did not intend to
create distance nor cause alarm with the lack of an update.
As you will read we’re still in a waiting place amidst very
busy lives, but continue to do well, growing personally and spiritually.
As I look back over the past 6 months, this story is as much about how the
journey changes the characters (you and us) as it is about the journey itself.
I am so thankful for how much Maura has recovered.
While we are still dealing with issues like memory and fatigue, and trying to
figure out the new normal around the house with the boys, our schedules and my
work, it is so much better than times in the ER or ICU, just less focused and
more busy. Those who interact with me have probably seen I am very
hopeful but stressed and noticed I’m short (not just in height) and more
hyper-kinetic than normal. Please don’t take this personally.
Clinical Update:
After a 10 week break from treatment and stay in the ICU, we
went back to NYC on Oct 25th for an MRI and to restart immunotherapy.
Because of the continued edema (swelling in her brain) the MRI was inconclusive
with regard to tumor progression. Despite the fact the MRI showed more
swelling than expected and the immunotherapy was the primary cause of the
swelling, we decided to go forward with treatment because we believe it to be
effective. We hoped to get 2-3 more treatments in before having to take
another pause. However, a week after the treatment her symptoms
worsened. We tried to manage them but had to stop again because we did
not want to land her back in the ICU or cause more injury.
So we came up with a new plan, which was to ween her off of
steroids and use another Chemo drug, Avastin, to reduce the inflammation.
Then she would get another “cleaner” MRI Jan 3rd to inform what to do
next. We had been avoiding the Avastin because it kicks us out of the
clinical trial. That said one of our options may be to resume the
immunotherapy outside of the trial w/ or w/o the Avastin. We may do this
here or in Cincinnati or may choose another path.
Since that visit to NYC we have been managing the swelling
to reduce her neurological symptoms and dealing with the side effects of coming
off steroids, the Avastin and her compromised immune system which resulted in a
persistent sinus infection. While all of her neurological symptoms have
improved beyond what was expected, the past 2+ weeks fatigue has really set in
and is amplifying her remaining neurological symptoms. The fatigue may be
related to a) the sinus infection, b) the anti-seizure medication, c) tumor
growth, d) the Avastin, e) all the blood pressure meds she is on because of the
Avastin or f) the fact her body is still adjusting to living life w/o steroids
and likely a combination of several of these.
Reflection:
While our focus seems to be narrowing, we are growing and
learning many things through this cancer journey and just living life with all
of its regular joys and challenges. There is so much I’d like to share as
many of you have shared truth, correction and experience with us over the past
7 months. Unfortunately there is not the space or time now. There are a
few things which have come up repeatedly and warrant touching on. I know
my perspective here may be foreign to many of you and I struggle most days to
keep myself together so this may sound odd.
From the start I had said Worship was an important part of
this journey. Worship is an overloaded term in our current context.
It usually means songs sung at church, or Christian songs on the radio (or
Spotify). When I say worship here I mean songs sung to God, turning our
focus to Him and His truth vs. our natural perspective, and songs sung in
petition or submission – prayers – “change my heart God”. As I have
written here we’ve had people come to Maura and my side to worship with us at
the hospital and our home. We made YouTube and Spotify play lists, and
listened to old CDs on drives to and from Rochester and NYC. Many of
these songs have become anchors and anthems on the journey (see sample below my
signature).
In this season it has been difficult to focus on God in
quiet times or regular rituals as there is very little regular or quiet in our
lives right now. Worship has enabled us to quickly break through, connect
with God, really overcome current fears and snap back to proper
perspective. It is one of the things I am most thankful for and at the
same time don’t do enough of. One of the things we’ve come to realize is
how formative worship has been over the seasons of our lives. God used
the songs we engaged to prepare us for this time and I’m sure future seasons.
Next, I’ve been confronted with the possibility that I have
been trying to redeem an unredeemable situation. Looking for meaning
where there is none. After a lot of prayer and reflection I’ve
reconfirmed my belief that God redeems all things we bring to Him. The
reality is our God and Father has an enemy and as a result we live in a broken
world where things like this and far worse happen – cancer, addiction, war,
poverty, loneliness, … is the nature of the world we live in. It is
equally true that our God and Father loves us, wants a relationship with us and
can and does redeem even most difficult situations, using them for good.
Finally miracles and healing. Even if I had not seen
them happen, I believe in miracles. So many have prayed for a miracle and
I continue to do so as well, medical or otherwise. I don’t know why He
chooses to heal one person and not another, and it is the exception not the
norm. Regardless, all healing here in this life is temporary and there is
a much larger context we are operating in than we realize. This larger
context is where we need to focus and I encourage you in this season to slow
down a little and turn your heart and mind to thinking about that bigger
picture and listen to hear what God may be saying to you personally now.
That is it for now. Have a great break if you get one,
I know I am hoping to. Thanks again for bearing with me and all your
support of Maura, the boys and I. I should get another updated out
shortly after the Jan 3rd. It will probably be brief as it
will either be GREAT news which we’ll want to get out quickly or bad news which
we will have to deal with – I think it will be good, but I really have no idea,
which is part of the journey.
Love, Terry and Maura.
"Nothing I Hold On To"
I lean not on my own under standing
My life is in the hands of the Maker of Heaven
I give it all to You, God
Trusting that You’ll make something beautiful out of me
I will climb this mountain with my hands wide open
There’s nothing I hold onto
https://www.youtube.com/watch?v=gmm8ETk70lg
{If I had to choose one song that symbolized this journey and brought us the most comfort it would be this one. It has been a constant in our lives since Janet brought it to us in the hospital back in May of 2016. I will forever think of this as Maura's anthem as it so clearly represents her approach to cancer and life in general}