From: Timko, Terry M
Sent: Thursday, June 02, 2016 12:17 PM
Subject: Maura Update June 2nd ~around noon :)
Sent: Thursday, June 02, 2016 12:17 PM
Subject: Maura Update June 2nd ~around noon :)
I’ve been using the metaphor here of God writing another
chapter in our story. While we were hoping this would be a short and
upbeat chapter, it is turning out to be longer one. We are still in great
spirits, know that we are in His hands, have a tremendous community supporting
us (that would be you) and are confident this will have a positive outcome.
There has not been an update for several days because there
was no new news. I even started back to work because I’m not so good at
sitting around. I’m going to make up for the lack of updates with a
longer post today. Don’t feel compelled to read the whole thing.
The Short Version:
They still don’t know what it is and we are most likely
heading to the Mayo Clinic for a brain biopsy next week or the following.
For those of you that wanted pics (I have DVDs full) here is
one of the masses:
The longer version:
We met with the Neurologist yesterday and learned the final
spinal tap (lumbar puncture) tests for MS and cultures came back
negative. As I said before we are playing a game of probabilities here
and these tests are not definitive (i.e. 15% of people w/ MS test negative on
the spinal tap test). We spent a good 45 minutes w/ the neurologist reviewing
all the what ifs, questions and the various options. He reviewed several
obscure inflammatory processes (i.e. Neurosarcoidosis) this could be as well as
infections and cancers. His sense is still that we are dealing with
cancer.
The net is they don’t know what these masses in her head
are. They are relatively recent (i.e. weeks not months) and are related
given how they react to contrast on the scans. There are 2 options, 1) a
series of semi diagnostic treatments (i.e. treat as cancer w/ chemo or as
inflammatory process w/ steroids, …) but that is risky and inclusive so option
2) is a brain biopsy which is the course of action we are likely choosing
baring an unexpected finding from a) the 18 blood tests they did yesterday or
b) the doctor who did her sinus surgery in December with whom we are meeting
tomorrow AM. The PET scan lit up in the area of her surgery which is
likely nothing but the neurologist wants the ENT to take a look.
So where are in the process of referrals to Mayo and
Cleveland Clinics, with a backup referral to Mayfield here in town.
Packaging up all of her medical records and imaging now to send off now to all
3 for review. This may be 1 or 2 trips and we may not have the procedure
done for 2 to 3 weeks. That said we could have the biopsy next week based
on what the team of doctors think of her imaging and history.
Many of you have been saying not knowing is the hardest
thing. We really did not think so, but are starting to feel it and to be
honest my head is all over the place, I want to fix things, manage things, … I
want to be in control but one of the things this is teaching us is we are not
always in control especially when we most want to be. So we will walk
this out in faith, eager to see the narrative unfold. God is good.
We are shifting from sprint mode to 5k to marathon pace,
planning on continuing on with life with interruptions. So we will likely
continue the couples thing (you know who you are), swimming, cookouts, … summer
with a little more focus on what is important vs fleeting.
Finally, I heard the following song recently and it has
taken on additional meaning so I thought I would share it:
"Whatever Pleases You"
When we hear your voice
When you call us out
To the unknown, uncertain
We will call to mind
Your ageless faithfulness
To your people, your creation
We will look to you
The author of our lives
Whatever pleases you will be our
path
Trading what we have for what will
last
We will seek your face and not your
hands
Whatever pleases you will be our
path
{When we cannot see just where the road will lead.
We are
empty, we are broken.
When the enemy is strong and there seems nowhere to run.
We will trust you. You are with us.
This is another song that became one of our anchors, there are several versions out there, including the ManCamp version but this what we listened too. We were led early on to let go of the things we thought were important and focus on the eternal, to seek God's character (His face) and not what He could do for us (His hands) and Robbie says so clearly here obedience over sacrifice}
p.s. There has also been much irony over the past couple
weeks. One I’ll share with you is Neurosarcoidosis is commonly known as Brain Fog.
One of Maura and my favorite movies is Joe
vs. the Volcano w/ Tom Hanks & Meg Ryan (if you have not seen it you
should). The movie is about people who get caught up in the mundane of
life until Joe learns he has a “Brain Cloud” and trades the mundane life for
one of adventure and meaning. Since the beginning Maura and I have been
joking that she had a brain cloud. Now it turns out it is kind of a real
thing.
BTW the movie has a happy ending J
Terry