From: Timko, Terry M

Sent: Tuesday, May 24, 2016 12:17 PM
Subject: Tuesday AM Update

First let me say that we so appreciate all your prayers and support.  The peace that has fallen over us and even Maura’s room is tangible – the nurses and staff come in and mention how different her room feels and want to hang out to avoid the “full moon craziness out there” – we are on the neuro/surgical floor.

It is hard to comprehend but we are doing better every day.  I’m starting to feel bad that we are feeling so good, while so many of you are feeling bad for us. Yes it is unpleasant, at times stressful and a bit of sleep deprivation, but we are closer to each other than we have ever been and this experience is drawing us closer to our God. He is writing a new story for us - what could be better than that, no matter what the ending may be.  That said we firmly believe this is the beginning of a new and long story, not an ending.
{This is true, not in the way I had thought or hoped at the time, but Maura's, yours and my stories are not over. Maura is now part of the great cloud of witnesses interceding on our behalf and we start a new chapter, hopefully learning from and gaining perspective from the last one}

We have had more visitors than expected, but have been blessed by you all, despite meds or exhaustion.

As you heard from Ginger’s post, the Vineyard Central worship team came to visit Sunday

I can honestly say that was the most meaningful Worship I can remember.  Empowering presence of the Holy Spirit.

Yesterday some of my men’s group came by to pray for us and worship with us.  Again, powerful and empowering.

Medical Update:

The bottom line is they still don’t know the source of the lesions/masses in her head. At this point, the tests are mostly a game of probabilities and we may be heading toward a brain biopsy to get a definitive answer.

We received initial results from yesterday’s Spinal Tap (Lumbar Puncture), which included at least 5 tests, and everything is normal so far: no sign of inflammation or cancer cells in the cytology, which one would expect given the location of the legions, but this is not definitive – again a game of probabilities.  The fungal culture tests and MS test (Oligoclonal bands test) are yet to come, and it could take a while to find results from those.

We have the PET scan at 3:15 today which can 1) rule against cancer/infection and point towards MS or 2) rule out MS and point to Cancer/Infection.  3) It can also identify locations of cancer elsewhere in her body which the CT and MRIs have missed and that would be easier to biopsy.  It is possible we will get the PET scan results late today but my bet is tomorrow.  Cancer and infection will light up on the PET scan and should give them more detail about the nature - but again probabilities.

If the PET and remaining lumbar puncture test results do not lead to a definitive diagnosis/course of action or other source to biopsy, next step is the brain biopsy.

Some of you have been asking about the size and location or the masses/lesions:

1) Left temporal (speech center) 1.5x1.8x1.6cm – largest; causing the obvious symptoms

2) Right Frontal (executive function) 11mm

3) Paramedian (too complex to define – basically between 2 hemispheres) 13mmx7mm

Per my email yesterday, they could not do the PET scan here (Good Sam) till Saturday, so we are being discharged to do the PET scan as Outpatient at Jewish Hospital with neurology office follow-up tomorrow.  So, we will be in our own bed tonight.

For those of you on this distribution list that are my HPE colleagues, our Accolade benefit has been just awesome.  If you don’t use it, you really should.  They really help navigate the health benefits system.  Very helpful.

Thank you to all that have reached out to Jeff Holland to offer to help drive, bring food, … the response has been impressive and crazy fast – like 10 minutes to get volunteers to drive our boys in 3 different directions. Twice.  You people are an amazing community!  We are CRAZY blessed by all of you!

Terry