Family Health Update

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Ugh.  Important news...

1. Molly's surgery has been postponed.  When? Dunno.  They wanted to cancel until we talked with the main neurosurgeon at the University of Chicago, Dr. Frim.

2. We are meeting with Dr. Frim tomorrow (Thursday).  We just found out Tuesday, the same day (I think) we had the surgery cancelled.  Why did they cancel the surgery with Yamini when the Frim meeting would happen so soon?  No honking idea.  Are they planning on Frim doing the surgery?  Are they unsure of something they haven't explained to us yet?  Are they just trying to make us MORE frustrated?  Dunno.  But our appointment is at 3pm tomorrow and we are about to find out.

3. Dr. Frim's nurse told us he is one of the slowest doctors, so that we may not leave our 3pm appointment until like 8pm.  Say what?  Yep.  So that means we leave at noon tomorrow and will arrive home maybe past 10pm or so.  Fortunately one of our babysitters isn't working tomorrow and can help all day.  Nice.

4. We are still going to Mayo Clinic on the 2nd of July.  We will take the kids to my family in Pontiac, IL on Saturday, come back to Woodstock so I can preach on Sunday, and then head up to Mayo.  We will be there, according to their information, for 2-4 days.  So if it lasts more than 2 days we will be stuck there over the 4th of July and have to wait until the 5th for more tests, meetings, or whatever they require. 

Dsc_001220070627_2 5. Just when you thought our family has had enough, the hits just keep on coming.  Elijah busted his head open today.  Just when I sat down to start doing a whole pile of work, I got a call and had to rush home.  It seems the dresser in our room jumped in front of him when he was being chased around our bed by his brothers.  So the next three hours were spent at the Emergency Room looking for some staples to get that scalp back together.  Seven staples later he was just fine.  And let me just say that I didn't see one tear from my six year old, even as I held him tight and the doctor treated him like a paper product.  After a good initial cry when it first happened, he was pretty tough and even found time to root on the Cubbies.

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Music Monday 6.25.07

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InnocenceThree words: The Innocence Mission. 

The Innocence Mission is Karen and Don Peris and Mike Bitts.  Karen is the vocalist, and her voice is like something out of a dream.  It's lovely and broken and hopeful.  Their musical style is a delicate and simple folk. 

I picked up their newest, We Walked in Song, after falling in love with Sufjan's live cover of "The Lakes of Canada" (though that isn't on their newest album).  We Walked is amazing with songs like "The Brotherhood of Man" and "Into Brooklyn, Early in the Morning."  (Paste and Pitchfork Reviews)

From "Colors of the World"...

Blue could be a winter coat
or the sea, Lake Maureen, a window
or a downpour on my street.
This bit of yellow could be a leaf
or a beam of light, a girl in a taxi.

And I think of you in the colors of the world.
And I did meet you in the brotherhood of man
when I was traveling a long way from my home
and you are a friend of mine.

Black is the piano you play at school in the lobby,
looking out at the gray and orange,
green grass on your feet.

And I think of you in the colors of the world.
And I did meet you in the brotherhood of man
when I was traveling a long way from my home
and you are a friend of mine.

My second purchase was Now the Day is Over.  This is an album of lullabies, highlighted by several notable and beloved songs like "Over the Rainbow" and "Edelweiss."  Lovely stuff handled gently, with a continued sense of fragility and gentleness.  Hard to believe these songs, which I would never look for on CD, are done this well. (Paste Review)

The third album I found was Birds of My Neighborhood, which is very new to me and just starting to get time in my rotation.  It contains "The Lakes of Canada," which is a beautiful song.  Through a listen or two, it's just as wonderful as the others. (Pitchfork Review)

Go over to The Innocence Mission's MySpace to hear more.

Surgery Scheduled

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We are planning on going for a 2nd opinion at Mayo Clinic on July 2nd, but we also have surgery scheduled at the University of Chicago at the first possible opportunity: July 13th, a Friday.  Yes, Friday the 13th.  Awesome.  Enjoy this (for mature audiences only)...

Molly McCoy: Chiari

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My wife, Molly McCoy, has been diagnosed with Chiari I Malformation.  This page will include links to all of my posts about my wife and Chiari, as well as information about how you can donate a brain to her.

Posts, in the order I wrote them...

Please Pray for My Wife
Visit to the Neurologist
Coming Neurosurgery Meeting
Weekend Update About the Chiari Challenged
Molly's Email Address
Video of Chiari Surgery
Consulation Coming Tomorrow
Consultation and Confusion
The Chiari Call

The Chiari Call

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Uch_0053691Dr. Yamini called today, and yeah, that's him on the right.  Really like him so far. 

He has agreed to do the surgery.  He consulted with a handful of other neurosurgeons and Molly's neurologist and pretty much everyone agreed that surgery is at least recommended.  Problem is that they are only giving Molly a 50/50 chance that the surgery will help her.  Actually, Yamini thinks the odds are better than that.  But the general consensus is that they aren't extremely confident in good results, meaning that there is a chance Molly could have surgery and still be suffering some, most, or all of her symptoms.

Yamini said that Chiari surgery is only absolutely necessary when the symptoms include 1. problems swallowing, 2. drop attacks (sudden spontaneous falls followed by quick recovery), or 3. syrinx (cyst on spinal column).  In these cases an operation is crucial and urgent.  Molly doesn't have these.  Now that's a good thing because these things are bad, but it makes surgery seem more optional. 

Yamini's greatest concern, and ours as well, is Molly's struggles with balance and walking.  He feels these can be serious enough to warrant surgery, which is why they have agreed to do it.

But the odds of a favorable outcome feel too low, and concern us.  So we are considering a 2nd opinion from Mayo.  We still have an appointment on July 2nd and may keep it.  We can even keep it and have the surgery at the University of Chicago with Dr. Yamini if their opinion matches the other doctors since Dr. Yamini would probably not do the surgery until at least July 6th, and maybe even the 13th. 

So now we are praying and trying to decide what to do.  I think we are leaning toward Mayo.  When your wife is about to have her brains opened up, you just want to be as sure as possible that you are taking necessary risks based on the best opinions.

Geez, this is tough.  Thanks for your continued prayers for Molly.

Drop_box_molly On a more positive note, you may have noticed the "brain donation" button on the top right of the blog.  Please pray about donating your brain, or the brain of a loved one. 

We figured since Molly's brain is just to big that we might get a smaller one donated to us.  If you have the ability to donate a brain, please do so asap. 

When you click the above link you will find a map of all the drop boxes around the country for brain donations, such as this one (though the actual drop boxes may vary in color).

Thanks for considering this.

The Simple Way, 7 Alarm Fire

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Please pray for The Simple Way community is Philadelphia (Shane Claiborne and the rest) who are suffering from a fire that leaves several families homeless as well as possession-less.  Read more at TheSimpleWay.org.  More...

This morning, a 7-alarm fire consumed an abandoned warehouse in ourKensington neighborhood in Philadelphia. The Simple Way Community Center at 3200 Potter Street was destroyed as well as at least eight of our neighbors’ homes. Over 100 people were evacuated from their homes, and 400 families are currently without power. Despite this developing tragedy, we are incredibly thankful to share that all of our community members and every one of our neighbors is safely out of harm’s way.

This fire will forever change the fabric of our community. Eight families are currently homeless, and in many cases have lost their vehicles as well as their homes. One of our neighbors, the Mahaias Family, lost their three cars as well as the equipment one family member uses for her massage therapy business. Teenager Brian Mahaias is devastated not because he has lost his belongings, but because he fears that this fire will force him to move away from this neighborhood that is his family as well as his home.

The Simple Way has lost a community center that was home to our Yes! And… afterschool program, community arts center, and Cottage Printworks t-shirt micro-business as well as to two of our community members. Community members Shane Claiborne and Jesce Walz have lost all of their belongings, Yes! And…’s after school studio and library were ruined, and community member Justin Donner’s Cottage Printworks equipment and t-shirts were destroyed.

We are thankful that we are able to help each other during this time of need, and we will continue to keep your informed about today’s events.

We have established funds to support the families who have lost their homes, the Yes! And… afterschool program, and the Simple Way community.

A fund to support the families has been established through a partner organization, EAPE. Tax-deductible donations can be made at https://www.tonycampolo.org/online_donation.php. Please make sure to put “Kensington Families Fund” in the memo section.

Donations to the Rebuilding Fund can be made via PayPal to contribute@awip.us.

-The Simple Way Community

9 Marks Blog: Church Matters

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9 Marks, the very helpful ministry of Mark Dever and Matt Schmucker from Capitol Hill Baptist in DC, now has a blog. Check out Mark Dever’s introductory post.  From a 9 Marks email...

Ourintended audience, as with most of 9Marks material, is pastors, church leaders, and seminarians. At the same time, we hope that all Christians become more interested in church matters, because we believe the local church is the focal point of God’s plan for displaying his glory to the nations. That includes all of us who profess faith in Christ.

Blog contributors will consist of Mark Dever, Matt Schmucker, Jonathan Leeman, and the 9Marks lead writers, as well as several like-minded pastors and occasional guests. For the time being, we thought we’d try opening the blog to public comments. Hopefully it can be used as a place of honest inquiry and discussion regarding pastoring and leading local church life.

The Clintanos

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Johnny_sack_cigaretteThis is a funny spoof on The Sopranos ending by Hillary and Bill Clinton for Hillary's campaign.  It's a set up to announce her campaign song. I wouldn't vote for Hillary if she were a close relative or the only candidate, but I still like the idea for this video.  Oh, and don't miss the "Johnny Sack" cameo.

Music Monday 6.18.07

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I haven't felt very musical today, but that won't stop me from posting this Music Monday.

First I want to mention the movie Once (trailer).  Man, I want to see this so bad.  It stars Glen Hansard of The Frames, and has received a great response from both critics and fans.  The movie is supposedly thick with music, good music, "10 quietly brilliant songs, each built around piano, acoustic guitar, violin, cello and the two headliners' soft, sweet voices" (via).  What I've heard sounds great (hear the central song, "Falling Slowly," on their website, hear more at Once MySpace).  Here's where you can pick up the soundtrack.

With all my wife's issues, this song has been in my head.  Here are three different versions of "Fix You."

Consultation & Confusion

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I wish I could say all went well today and the next step is clear.  It wasn't all roses and the way forward isn't clear yet. 

The neurosurgeon, Dr. Yamini, seemed like a great guy.  Lacking the quirkiness of so many doctors, he was friendly, laughed at my jokes, seemed genuinely concerned, and responded with wisdom to the situation at hand (as best we can tell).

I'll try to stay within the nutshell.  He agreed she has Chiari I Malformation (knew he would), but didn't feel we should schedule surgery just yet.  Not because Molly might get better, but because of at least a couple of things...

1. There is no evidence on the MRI films of any major effects from the Chiari, though the Chiari itself is evident.  Often Chiari sufferers have developed one or more cysts in the spinal cord called a "syrinx."  At the least there are often spots on the chord that show problems occurring in and around the spinal column.  Molly's spinal chord is "pristine" according to Dr. Yamini, meaning it looks just fine and has absolutely no noticeable effects from the cerebellum pressing on the spinal column.

Because of the lack of noticeable trauma on her spine, Dr. Yamini is curious about whether or not the symptoms are coming from the Chiari Malformation or something else.

2. Molly's symptoms don't seem to match what Dr. Yamini has seen many Chiari patients.  Often people experiencing dramatic Chiari symptoms have had some lesser symptoms long before.  Things like chronic, bad headaches.  Molly's symptoms just started a month ago, and she went from very healthy and feeling good to awful symptoms. 

Dr. Yamini was also concerned for Molly's unbelievable balance problems, and wasn't exactly sure her symptoms would be this dramatic when the Chiari hasn't produced noticeable effects on the spine.

Because there is no trauma and the symptoms are not quite aligning like typical Chiari, Dr. Yamini is questioning whether there might be a different problem causing Molly's symptoms.  He said he assumes that Chiari is still the heinous culprit (see this at minute 3:40), but he isn't confident enough to perform such a dangerous surgery without ruling out some other possibilities.

Next Steps

Dr. Yamini will be consulting with his two colleagues at the University of Chicago, Dr. Curry and Dr. Frim.  All have performed a number of Chiari decompression surgeries; Dr. Frim has performed the most.  He will also talk with our neurologist. We are waiting for a phone call sometime this week (hopefully early this week).

Our Thoughts

We are exhausted and frustrated.  It took nearly 3 hours to get to the hospital this morning (rush hour + a 4 car pile-up = Steve yelling at cars). 

We feel both better and worse about things.  We feel better because we like the neurosurgeon and are thankful for his advice, cautiousness and candor.  We also feel better because we had assumed this surgery was a near-emergency situation.  He says it isn't, and we believe him.  We are thankful that we have a chance to make sure we don't do this surgery on too little info and regret the pain, suffering, and risks later. 

We feel worse because we felt this was a cut-and-dry situation.  "It's Chiari, it's not treatable by pain meds, so we plan to operate and make things better."  Now we feel a like we are being re-enveloped in mystery.  "Is this really the Chiari?  Or could it be something else?  And if/when she has surgery, will it really be the solution or will major symptoms remain?"

We hate the "worse" part of this.  It was a long, difficult drive home as we thought through the situation and wondered how long Molly would keep suffering like this.  I think Molly is more depressed about things now.  But in the end I think we are ready for whatever comes and look forward to doing whatever is necessary. 

Oh, and the best part of the day was eating at P.F. Changs on the way home.  Orange Peel Shrimp, baby!

Consultation Coming Tomorrow

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Dsc_00301Tomorrow (Monday the 18th) is Molly's consultation with Dr. Yamini at the University of Chicago.  It's at 11am. A little nervous, but mostly thankful it's finally here.  I'm probably most anxious about driving into the city and making it on time.

Molly has had a good week, considering.  She had about 2 good days where she regained her balance and lost some of her weakness problems.  She was having more headaches and other symptoms instead, but the most serious symptoms were not so bad and for that I'm very thankful.  Then it turned bad again, at least at times.  Laying down for another MRI really was painful on Wednesday and made the rest of the day miserable.  Sitting for a 2 hour movie was fine on Friday night, but when she got up it was a nightmare.  She could barely walk out of the building, and only did with a lot of help.

By the way, my back issues seem much better the last 4 days.  Still some stuff going on, but nothing big at all.  Working on posture while on my laptop and sleeping in the right positions has helped.

Please pray that Dr. Yamini will take Molly on the right course of treatment, which we assume will be surgery.  And pray that we will continue to trust that God is teaching us to trust Him more during difficult times.

Phriday is for Photos 6.15.07

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Four on the Floor

The first is my lovely wife's feet at the pool.  Dangit, even when her face is out of focus she rocks my world!  The second is a favorite of my kids from last summer with their feet firmly planted on the bean.  I'm thinking of them a lot as Father's Day approaches, and as their mother is suffering right now.  Check out the rest of my photography, especially this delicious photo of my family, which I had forgotten about until a couple of days ago.

Salt and Light

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God intends us to penetrate the world.  Christian salt has no business to remain snugly in elegant little ecclesiastical salt cellars; our place is to be rubbed into the secular community, as salt is rubbed into meat, to stop it going bad.  And when society does go bad, we Christians tend to throw up our hands in pious horror and reproach the non-Christian world; but should we not rather reproach ourselves?  One can hardly blame unsalted meat for going bad.  It cannot do anything else.  The real question to ask is: Where is the salt?

John Stott in The Message of the Sermon on the Mount, p 65.