From: Timko, Terry M
Sent: Saturday, September 17, 2016 1:25 PM
Subject: Maura Update - Sept 15th
Sent: Saturday, September 17, 2016 1:25 PM
Subject: Maura Update - Sept 15th
Dear Friends and Family,
There’s lots of ground to cover this time including a note
from Maura. As a result this update is longer than usual, so please feel
free to just check out the Short Version below. Also sorry I did not get
this out when we got back from NYC this week, but I’ve been crazy busy getting
life back in order with all the medical/insurance, basement flood, work, travel
logistics, back to school, and getting a new and sustainable normal in place
after being gone for the summer.
I’ve been using the metaphor that God is writing our
story. Well I believe we are starting a new more peaceful chapter.
A chapter where we get to spend more time with friends and family who are
sharing this journey with us. One of the things I have learned through
this is that if you are not intentional about staying connected, time, day to
day concerns and desires too easily creates distance between the people we
know, care about and love.
As we’ve go through this I’m also learning a lot about how
we deal with pain, stress and adversity in different ways. While most
have their place, some are more healthy and some not so much. While this
season is hard and painful, it is at the same time redemptive and
beautiful. Hard things are not inherently bad. It is crazy how much
the Lord has grown us and how well we are doing. We see every day as a
blessing and are intentional with our time and energy. As we do so we are
seeing God’s hand as we walk this out. Our journey has touched many
people in so many different ways. Our prayer is that it draws people
closer to Him, that Maura be healed and if not we are given the strength to
walk this out is a way that glorifies Him.
Maura on our way home from
NYC this week with flowers from the lovely people at the Double Tree Chelsea,
who have been so kind to us and a real blessing.
Short Version:
Maura has recovered remarkably well since her trip to the
Hospital. I would say she is back to where she was 10 weeks ago and
continues to improve every day. We received good news from the post
treatment check point in NYC this past week, not great but certainly not bad
either. They are going to let her brain heal another 2 weeks and then
start her on the immunotherapy regiment again as long as she can tolerate it as
it appears to be working. She may also get another round of radiation.
{We joked at the time that there was a dragon in her head which you can see if your imagination lets you on the right of the lower left image. I think her doctor, Dr Antonio Omuro, was amused by this and even more surprised by my comments regarding Zika and potential impact on Glioblastoma, but that is a conversation to be had over a beer sometime - there may be something to it, time will tell}
We have been blown away by the support we have receive from
all of you. It’s sometimes hard for me to receive but Jeff convinced me
to let him set up a GoFundMe for the boys and for misc. expenses because many
people want to help but not everyone can drive or cook. The response is
truly humbling.
Maura’s Note:
Hello Friends & Family,
This weekend marks of 4 months realizing that I
have brain cancer. It's been very aggressive, and
we weren't sure I would even make it these four months. Three
weeks ago, I collapsed at home (radiation and other treatments
created a lot of swelling in my brain). I was brought to
the ER/Neurological ICU at Good Sam and stayed inpatient for 6 days.
My doctors and nurses were not sure that I would survive - I had a
large amount of pressure my brain. So many of you were praying
for me and for those doctors and nurses. I began to heal very
quickly. At first specialists, nurses and therapists agreed I
might be able to return home at some point, but needed inpatient
rehab first. But the Lord was healing me because YOU have been praying!
After 4 days in the ICU, I was walking whole flights of stairs
and all the hallways with very little assistance. I was discharged after
only 6 days and was sent back to HOME, and not to rehab.
Every day I grow stronger, and yesterday, I walked 2+ miles
(Yes - miles!). Our family KNOWS that it is only the presence
of Jesus accomplishing this in me. We still do not know how many
days/weeks/months/years we might enjoy together. However, that is true
for each one of us; we NEVER know. We cherish every day and the people in
our lives (YOU!!!). I have begun a little email, text and phone - very,
very slowly. I would not be able to write an update, but while the
Lord continues to heal me, I'll get there. My husband has been AMAZING
(I already knew that), and every single day with him and my 3 boys is
a blessing. Thank you for praying, loving, driving, and serving our
family. We love you all, and it is a joy to share this journey.
MT
Maura also wanted me share a song has the Load brought to her mind
and resonated with her in this the last week or so. It is The Struggle by
Tenth Avenue North. “It captures the essence of this journey so far
for her, the whole album does. Even though we are struggling we are not
struggling to be free, Jesus has already done it. He is transforming us
through this struggle. We wrestle in the day to day, but it is Him doing it in
us, we are not trying to find meaning or salvation, just transformation to be
more like him”.
Longer version:
Maura is doing tons better symptomatically as evidenced by
the unedited note above, ability to have brief meaningful conversations with
friends and family and take on day to day tasks. She is being very
intentional and focused with her rehab which includes pushing herself a little
further everyday in speech, exercise, cognition and occupational tasks.
All still very slow (the note above took 90 minutes) and tiring.
We had good conversations with her doctors in NYC and here
in Cincinnati, and have a good and encouraging path forward. We are ready
for the next plot twist but looking forward to a peaceful and predictable
season for a couple months. We are also hopeful we are on a path that is
closer to 3 years of good quality of life vs. 3 months which is already behind
us.
Worship:
When all this started one of the things I heard was to cover
Maura in worship, that it would be an integral part of this journey. We
have done this live, via CDs and YouTube playlists. She has been so
blessed by this and I have learned a great deal. More on this another
time but I wanted to share this one story. Last Saturday before we headed
to NYC we had some old friends over for worship, to celebrate Maura’s recovery
and seek the Lord for guidance the upcoming week. There was a huge storm
that evening and as we worshiped our basement flooded.
Just like the battle with cancer, we started worshiping as
the storm began. Damage was done but we worshiped through & the Lord
provided through our community - already there to deal with the flood. He
is our provision in the storm. Another thing that struck us about this,
just like the flood is forcing us to clean out our house, discard things we
don’t need and weigh us down, the Lord is leading us to get rid of, prune
things in our life that encumber us for the journey ahead.
“Therefore, since we are surrounded by such a great cloud
of witnesses, let us throw off everything that hinders and the sin that so
easily entangles. And let us run with perseverance the race marked out for us,
2 fixing our eyes on Jesus, the pioneer and perfecter of faith.” Hebrews
12:1-2a
Clinical:
I’ve had a lot of questions here and I’ll lead with a primer
to simplify something rather complex.
Her tumor consists of a variety of different cells w/
different characteristics (markers, growth rates, …). Different
treatments have different efficacy against these different cells types (i.e.
rapidly splitting are more susceptible to radiation). So when the tumor
becomes resistant to a treatment it may mean that most of the cells which are
susceptible to that line of treatment have died off and what remains is less
susceptible or not practicable reachable by the treatment. So the game is to
continue a series of treatments (surgery, radiation, chemo, immuno, …
therapies) to get more and more of the tumor. Unfortunately this tumor
always comes back unless there is a miracle/new medical breakthrough.
The good news is:
1) The radiation appears to have been very
effective on at least 2 of the 3 tumors
2) The immunotherapy (Nivolumab, or Nivo for short)
is likely having an impact on the tumors as well
3) The swelling went down a lot. You can see
from the attached file how much her swelling went down between Aug 24th
at the ER and this past week. Still some swelling but much improved.
4) We learned a lot and confirmed much of what we
already believed.
5) The path forward is clear.
The not great news is the 3rd tumor looked odd.
It could be pseudo-progression and no big deal or she may need another round of
radiation if it is tumor growth. I suspect surgery is also an
option. The other obvious not great news is that Maura does not tolerate
the Nivo very well.
The edema, or swelling, Maura experienced which landed her
in the ER was due to a) radiation initially w/o steroids and b) the Nivo which
turns parts of her immune system “up to 11” to go fight the tumor.
Since the swelling increased after the radiation it is believe the Nivo is the
primary source. We also learned a reasonable percentage of people in the
trial had similar swelling and part of the trial is to learn how to administer
these treatments safely.
Now Maura’s tumors grew very fast between surgery and the
start of treatment 2 weeks later. Therefore one would expect the
radiation would be effective and it appears to have been. So hopefully
the fast growing cells have been dealt with and we are dealing with slower
growing cell types. Given Maura’s tumor’s genetic markers the standard
chemo is expected to have little impact which is why the immunotherapy is so
important. Given her inflammatory response it is believed the Nivo is
having effect on a population of tumor cells. In other cancers (i.e.
lung) it is believed Nivo is mostly effective against cells that express the
PD-L1 protein. Different people’s tumors have varying % of tumor cells
with this protein. If this is the case our hope is that her tumor’s PD-L1
expression is high and hence the Nivo can kill a large population of
cells. As this population of cells is reduced the inflammatory response should
go down.
So they decided to let her brain rest for 2 more weeks and
then start the Nivo again. We are still waiting for a decision as to what
to do with the 3rd tumor. Once the swelling and related
symptoms come back, which they expect will, they want Maura to stay in NYC to
manage her symptoms. This is probably 6 weeks out. They also
believe the flying is exasperating the symptoms.
That is it for now, until next time and thanks again for all
your love, prayers and support.
With Much Love, Terry & Maura