Reformissionary

Molly & Chiari Update - Halloween '08

(I'm trying to write in a Halloween theme, so some terminology may be a bit creepy.  But beyond the fun it's really deadly serious. Molly asked me to put the graphic up to show how things are going.)

It's a scary Halloween for the McCoy family.  It started with a phone call at the stroke of midnight.  It was Dr. Frim.  Yes, we were expecting his late call.  But midnight is very late...scary late.

Dr. Frim was following up his nurse's phone call earlier.  The MRI's of Molly's skull and brains look good.  He can't find anything wrong.  That sounds like all treats, but it's really a trick.  Seeing nothing wrong when Molly has such evil symptoms means she is running out of options.  All Dr. Frim can do create a bloody mess by slicing open the back of her neck and fixing anatomical features to aid spinal fluid flow.  After that, it's a dead end.

Here's the plan.

1. Molly will have a spinal tap to see if her body's response to surgery has increased her spinal fluid pressure.  That could be the cause a lot of her problems.  I think won't reveal anything wrong, but it's still possible and is worth trying.

2. If #1 doesn't work, Molly will get a second opinion from a pediatric neurosurgeon at the University of Wisconsin in Madison (same place where she got the MRI). Dr. Frim respects the doc there and thinks he's a good, nearby option for trying to figure out what's wrong and what to do.  Problem is, Frim is the guy people go to when other options aren't as good.  When you start at the top there are few places to go...BUT DOWN.....MUHAHAHAAAAaaaa!

3. If #2 reveals something, we do what's necessary.  If it doesn't reveal anything, the last gasp will be to have Dr. Frim hack open the back of Molly's neck again and root around looking for anything that is not noticeable on the MRI but still a problem.  It's a re-exploration of the chiari hoping to find something.  He said about 1/2 of the time he finds something that fixes some or all of the problem, which means there's a 50% chance all that will happen is I do laundry for a lot longer.  That gives me the chills.

If the surgery reveals nothing and her symptoms don't get better, Dr. Frim basically said that we are out of options.  That's a frightening, but very real, possibility. We would then start looking at other things that may help symptoms, though those will probably not help all that much.

After the phone call Molly asked me if things might get bad enough where she would have to be in a wheelchair the rest of her life.  All I could do is tell her that I don't know.  This is as down as I've been in the 1 1/2 years we've been dealing with this stuff.  We are setting up spinal tap and second opinion appointments asap.  I'll keep you up to date.

Please pray for coming appointments and possible solutions.  Pray that we would be content with whatever God does.  Pray for opportunities to minister to others through all this.

Friends of Molly McCoy

After Molly's symptoms returned from Chiari I Malformation in July, we learned soon after that she would face a second brain surgery.  It was devastating to us, but the first surgery went so well and helped so much that we anticipated good things.  As you know, things haven't gone very well.  But that isn't the point of this post.

Before the second brain surgery was even scheduled we had some folks at our local elementary school (including the principal, office workers, and teachers) told us that they were planning a benefit for Molly.  Actually I'm not sure the word "benefit" was used, but they wanted to do some sort of fundraiser to help Molly and our family.  This was completely without provocation and without sharing of any family needs by Molly or me or the kids.  

Molly has invested much in the local schools and everyone there loves her.  Among other things she has served in the Parent Teacher Organization, heads up Market Day sales and distribution, has helped in every classroom of every kid in significant ways, and is the queen of giving scrumptious baked good for every single holiday to all the kids' teachers, the principal, the office workers, even the janitors!  Everyone there knows that Molly has no agenda but to love them and appreciate them and bless them and befriend them.  And now many of them have become good friends and chose to bless her right back.

After much work on their part they chose to start a "Friends of Molly McCoy" organization and develop a benefit dinner, which took place on October 23rd.  They initially hoped to get several hundred dollars to help with gas money and hotel and things like that. But this became bigger than anyone expected. 

It started with a few friends at the elementary school.  Then new people joined up to organize and pull off the event, including some church members and other school teachers and workers.  Danny's teacher served food at the dinner.  Elijah's teacher helped organize the whole event and served at it.  Jack's teacher helped serve food and even was going around the school days before with a jug for people to donate money.  Even a teacher of Sarah's who has been very sick with her first pregnancy was there to serve food.  PTO friends served and donated much.  Several moms of other students got involved, including the notorious Woodstock "Mommy Mafia."  Don't ask. 

Everything they needed in planning the event was donated. The local Lutheran church hosted the event for free.  The food was all donated, including delicious spaghetti from Papa Saverios in Huntley, IL.  The former PTO president had shirts created with Molly's photo printed on it with "Friends of Molly McCoy."  All of the workers at the dinner were given a shirt.  Our worship leader donated his time to play music during the dinner.  People came to set up, tear down, clean up, serve food, prepare dozens and dozens of "take out" orders for those who didn't have time to sit and eat.  The event was advertised in many ways including all schools involved passing out event fliers to all parents and putting fliers up around town.

And what all of these friends of Molly did was bring in hundreds of people at $10 a plate ($5 for kids) and a lot more money than anyone expected!  It was unbelievable.  And there was even a 50/50 raffle that one of the workers won.  She immediately gave her 1/2 back to us. We saw church members there, our soccer team , former coaches from baseball teams, people from Molly's gym, the McHenry County College basketball team (coach is the elementary school gym teacher), and many others from various areas of life.

Today the three key organizers of the benefit from the elementary school came by and gave us a check for well over anything any of us expected.  We are just blown away, and I think they are too.

Add to all this a few other things I don't want to fail to mention.  We have continued to get meals by church and community friends on a regular basis.  Joe Thorn's church provided three big coolers full of frozen meals and a bunch of money for food.  We have also received money prior to and after the surgery from church members, community friends, parents of church members, people we don't really know, and our mechanic.  We've had a couple of teachers pay to have our house cleaned, which is going to happen soon.  Elijah's soccer coach helped organize donations through the soccer league.  They collected much of it from team parents and a paint jug with Molly's name on it.  Again, unbelievable. 

We know we probably missed some things we could mention here.  This isn't so much our "thank you" to those involved, though we say THANK YOU!, and are trying to do that in person and through personal notes.  This post is a public expression of gratitude to God for what He has done.  He has shown his blessing and grace in remarkable ways these last several weeks.  And I want to end by saying that I have learned about how to be invested in a community of people through my wife more than anyone. Thanks for your faithfulness to me, our family, our community, and especially our God.  I love you.

Spurgeon on Suffering, via Piper

John Piper's verbal biographies are wonderful.  I'm listening again to his bio of Spurgeon and just had to throw up a few quotes.  They are rocking me today in the midst of all the stuff our family is going through.  Here's the Piper audio, and the manuscript.

It would be a very sharp and trying experience to me to think that I have an affliction which God never sent me, that the bitter cup was never filled by his hand, that my trials were never measured out by him, nor sent to me by his arrangement of their weight and quantity.

Another...

I dare say the greatest earthly blessing that God can give to any of us is health, with the exception of sickness ... If some men, that I know of could only be favoured with a month of rheumatism, it would, by God's grace mellow them marvelously.

Being Fully Invested as Parents

The High Calling has my new article online, "Are You Fully Invested?"  It's a reflection on Ephesians 5:15-16 and parenting.

Music Monday 10.27.08

I love Cut/Copy yes I do, I love Cut/Copy how about you? Outstanding.

I am fascinated with the new Feist video for "Honey, Honey." I'm watching it again after I put this up.

More Avett Brothers awesomeness...

Can't remember what, if anything, I've posted from Frightened Rabbit. I found some of their stuff online before I became a huge fan of their newest CD. Note the opening lyrics of this song...

Molly Update 10.27.08

Molly had MRI's done Friday night at the University of Wisconsin Hospital in Madison.  From a patient/family point of view it was a spectacular hospital: new, beautiful, comfortable, peaceful.  It's slightly over 1 1/2 hours from our house with no traffic.  So future MRI's will be done in Madison, if at all possible.  We got there early hoping she would get in early, and she did.  We left about an hour earlier than expected.  When has that ever happened?  Plus, Fuddrucker's is on the way and we love the Fudd. 

Despite the good experience with external things, it was a miserable experience for Molly.  They had her head and neck positioned in ways that jacked her up big time.  She had to be taken by wheelchair out of the hospital.  Her nausea had finally started to subside a few days before we went to UW Hospital, but the MRI brought it back.  My Dad and Uncle came to town for several hours on Saturday and Molly was just all messed up.  "Jolts" and terrible balance issues were especially noticeable. She didn't go to church again on Sunday because of nausea and bad balance problems.  She is also having a little swelling near her incision...again.  We are guessing that's because of the  MRI as well. Hope it goes away quickly.

Molly's worst issue has been in thought processing and getting out her thoughts.  She will stop in mid-thought and just not be able to finish what she's trying to say.  It doesn't matter how simple it is.  At any given moment in speaking she will just stop and find saying the next word impossible.  It goes without saying that is very frustrating for her.

On the positive side her energy levels have been increasing and her nausea is subsiding again 3 days after the MRI.  She's up more during the day.  She's sleeping a little better at night, not just laying there wide awake.  But still not quite right on the sleeping front.

Today we UPS'd the MRI CD to Dr. Frim.  They should get it tomorrow and hopefully will look at it right away. More likely it will be by the end of the week.  I'll let you know when we know what he sees.  Please pray he will see nothing bad, OR that he would find keys to an Escalade in there.

I have to add one more thing, a teaser. In a couple of days I'm going to explain how some people have responded to Molly and our family in this ordeal.  Some amazing things have happened through our church and in our community.  Be looking for that.

Cubs & Sounds

My 5 year old, Daniel, colored a picture for kindergarten.  He was supposed to write a sentence about the picture.  Here's what he wrote...
Now at first glance it appears that Danny says "The Cubs are not in the World Series" followed by crying "Wah wah wah wahhhhhh."  But When I asked him about what he wrote he made that sound like on a game show when you pick the door with the goat behind it.  Like this.  Hilarious!  I'm not even sure where he came up with that.  But he sure does understand the Cubs!

Molly Update and Lots-o-Links 10.22.08

Quick update on Molly.  She is finishing up her third round of steroids tomorrow, so we hope that will have a good result.  But as of today she has had more numbness/tingling in her legs than ever before.  Her balance issues are dramatic.  She is sleeping a little better, but not nearly enough yet.  It's still very worrisome around here, but God is our refuge (we read and prayed Ps 52 with our kids this morning).

Links...

Kung-Fu Election.  "Huck-uh-beeee!"

Good Wendell Berry website that I wasn't aware of until a few weeks ago.  New Wendell Berry Poetry.  New Billy Collins poetry.  Poems for autumn.

JD Greear - Multi-Site vs Church Planting.  Bill Streger - Great Questions for Pastors. Jonathan Dodson - Redefining Evangelism.

Questions to ask before confronting.  Powlison on Friendship Counseling.

BibleArc.  Tom Schreiner taught me this at SBTS.  Could be a cool resource site. We'll see.

I have this ESV Study Bible.  Haven't used it enough to say too awful much (though I like what I've seen), but I do really dig the online version that is available for those who buy a hard copy.  Place for notes, highlighting text in different colors, and the full content of the study Bible.  I will use the online resource several times a week.  You should get one!  Westminster is a great place to buy books, especially ESV Bibles.

A Holy Longing: Beauty and the Gospel.

Total Church Conference audio is up.

LEAD for the City Streaming

LEAD for the City conference is streaming video with chat.  Loving it, via the Planting Channel.

Tuesday, October 21
9:15 AM - 10:00 AM: Darrin Patrick on “Gospel Centered Repentance”
10:45 AM - 11:30 AM: Eric Mason on “Hybrid Leaders”
1:45 PM - 3:00 PM: Dr. Bryan Chapell on “Christ-Centered Preaching”

Wednesday, October 22
9:15 AM - 10:00 AM: Randy Nabors on “City Leaders”
1:45 PM - 2:30 PM: Matt Carter on “Broken Leaders”
4:45 PM - 5:30 PM: Jonathan McIntosh on “Missional Leaders”

Music Monday 10.20.08

Ray LaMontagne is so good. Just picked up his new CD this week, though I haven't heard it yet. I remember when I got his first CD and I didn't know anyone who knew him. Awesome. Check out his new stuff at MySpace. Here's a video from Ray on Conan (yeah, I know it doesn't fit, whatever)...

New Shearwater EP, The Snow Leopard (iTunes, Amazon). Get it. Get everything from Shearwater. Please.

Jens Lekman singing "Black Cab" while in a Black Cab Session. Really wonderful.

And to give you a bit of an oldie, here's Midnight Oil with "Beds are Burning." Lead singer Peter Garrett is now an Australian politician. Sometimes politics and music can just suck eggs. Other times, like with Midnight Oil, it can be great...

Quick Update on Molly 10.16.08

Home from Molly's appointment.  It was about 9 hours of life for one appointment.  Wowwy.  No time to explain, so here's the dealio right quick.

Picked up the kids and headed out.  Stopped along the way to get some food.  Got to the University of Chicago Hospital on time.  Waiting room for 10 minutes, patient room for 1 1/2 hours (with 4 kids in there) before seeing Dr. Frim. 

Actually we saw a resident first, then Dr. Frim.  Lots of questions and a balance test, which Molly flunked big time.  Frim seemed a bit perplexed.  The three residents following his lead seemed bored, but they still laughed at my jokes so I think I made their night. :)

Dr. Frim thinks Molly is still struggling with some kind of chemical meningitis as a reaction to the foreign body (tube) he put in.  So yet another round of steroids is starting tomorrow and will last for the next 7 days.  Near the end of that other anti-inflammatories will begin. 

Dr. Frim changed Molly's nausea meds since that is a huge issue right now.  He feels quite sure it's directly tube related and will get better in the near future.  Also he is throwing a new insomnia medication at Molly hoping it will help her difficulty with sleep.  Her current one is helping a little, but not enough.  Still very tired.  Hope that will change now.  Of course Walgreens ran out (there's a sermon illustration there, don't miss it).  So I have to run to Wal-Mart in the morning to fill that prescription.

In the next couple of days we will be traveling to Madison, Wisconsin for another battery of MRI's.  Hopefully these will show if the spinal fluid flow is better, if there's swelling, etc.  Dr. Frim said Madison has good facilities there for the special MRI's Molly needs.  Wish we knew that last time around.  It will save a bunch of time and money to use Madison.  Plus Fuddruckers is on the way.  Woohoo! 

I asked Dr. Frim about what he thinks will happen at this point and he is still feeling that when some of the above issues are resolved a bit we will see improvement.  That remains to be seen, but let's pray to that end.  Because of the steroids we are still probably at least another couple of weeks away from knowing if the surgery was a success.  I'll update if/when something changes.

Thanks for the many encouraging notes on the blog, Facebook, Twitter, email, etc.  Appreciate all of you and your prayers so much as we struggle through this stuff.  God is proving His faithfulness again and again to us.

Headed to University of Chicago Hospital

Just wanted to give a heads up and ask for your prayers.  I talked with Dr. Frim's nurse this morning and they want Molly in their office late this afternoon.  Things with Molly are still very bad.  She essentially has all of her symptoms from before the surgery plus terrible nausea, increasing numbness, and more.  She is bedridden most of the time with short bursts of up time. 

We really need the Molly's neurosurgeon to figure out what's going on.  We need some answers and a bit of hope.  Please pray.

Molly Update 10.14.08

Sorry not to update you all more, but not much has changed.  Molly is laying down most of the day because sitting or standing makes her dizzy/nauseous. She doesn't seem to be getting better from the surgery, or at least she has hit a sticking point.  A few days ago we heard from the doctor and it seems that they are growing a bit more concerned with Molly's recovery...or lack of. 

Maybe one day soon Molly will wake up and feel much better, but as of today she has all her Chiari symptoms plus some symptoms the surgery, is not sleeping much (at one point slept 2 hours in 2 days), and is emotionally drained.

We assume we will be making a trip to the city this week for a meeting with Dr. Frim to try to figure out what's going on.  Should know today, we think.  It's going to be a miserable trip if Molly continues to feel nauseous even when stationary.  We may need a barf bag donation drive.

Needless to say we are growing more and more frustrated and concerned.  Last year was a breeze compared to this. We see no light at the end of the tunnel.  It feels like things won't get better.  But we also know every rose has its thorn (yeah, I just did that...though I really mean every thorn has its rose).  Honestly, God is really teaching us a lot through this stuff.  It's provided chances to teach our kids things that would be harder to grasp if it weren't for Molly's problems.  Their uncoached prayers have really encouraged us.  And we know that through all of this God is working good (Romans 8:28 has been a family devotion passage recently).

Thanks for your continued prayers.

I want to say one more thing.  Some folks at our local elementary school (Mary Endres) decided before the surgery to have a spaghetti dinner to help Molly and our family.  They are planning food for 300 people!  Molly has been very (!) active in our local elementary school since we moved to Woodstock.  And now all the work she has put in and the relationships she has made are resulting in a great blessing during a difficult time.  We love our local schools, teachers, and workers.  We are very thankful for them.

Music Monday 10.13.08

Need some fall tunes? I put up an iTunes iMix: Reformissionary's Autumn.

Check out The Pitchfork 500, coming soon.

Want to pay what you want for the new The Mountain Goats EP, including the option of free? I thought so. One catch. It's called Satanic Messiah and the recommended price is $6.66. They are also limiting the vinal copy releases to 666. For some Christians that's a deal breaker. But you will be missing four very lovely tracks.

The Avett Brothers with their official vid for "Murder in the City."  Love this song...

I'll be honest with you. As Molly continues to not get better after brain surgery, we have been struggling with emotion and motivation. So, I offer you the best thing I can think of to get motivated. Awesome...

And if you can't get enough of Marky Mark, I offer you this video which had me in stitches this week and I'm still not sure why...

Tim Keller: Divine Impulses

As found at WashingtonPost.com. Thanks for the emailer who sent it...

Molly & Chiari Update 10.8.08

Hey all.  Here's a brief Molly & Chiari update.  If you don't know what I'm talking about, read this.

Molly had surgery 1 1/2 weeks ago (Friday, 9.26...so 12 days post-op).  Her first two days in the hospital were unbelievably good.  She had energy, recovered quickly, and was happy.  So they sent her home.  Her last several days at home have been just miserable.  She lies down most of the time but isn't getting much sleep.  If she tries to stand up and do anything, or sit up and read or watch TV or whatever, she feels terribly nauseous and has to lie back down.  That makes her one very frustrated woman.  Add to that she has numbness in her feet and hands, regular headaches, and other symptoms of Chiari.  She also has some swelling near the incision.  Maybe the worst thing is that Molly has a strong appetite for foods that are difficult for me to find. :)

Molly and I have both talked to Dr. Frim's nurse a time or two, and have kept them abreast of how Molly is doing.  The accepted explanation is that when you put a foreign body into a human body stuff like this is how you feel for a while.  I told you while still at the hospital that this is what they thought would happen after she stopped taking steroids. 

Yesterday Molly woke up with some painful spots on her torso.  It's as if she feels like she has several bruises on her upper torso and arms.  Weird.  A call to the nurse led to Molly going to our local family doctor to seek a blood test to check for infection.  Our family doctor wanted to meet with Molly to check on her himself and gave us the "ok" on the incision (doesn't look infected from the incision point) and her vital signs.  He sent her to get a blood test and the results will be sent to Dr. Frim.

Dr. Frim called in another short round of steroids, including an initial big dose.  Molly took the big dose last night and will be taking more the next 2-3 days.  This morning she is feeling great!  Happy, chatty (too chatty), energized.  We know it's probably short lived once she stops taking them again, but it should help her recover a bit faster and at least feel better for a day or two.  I should also add that her torso pain is gone as of this morning. 

This has been a really difficult time for us.  We are all exhausted and concerned about whether or not Chiari symptoms will go away.  At least Molly's energy today gives me a chance to do some work on my church.  It's been very difficult to find time for that lately. For some context, here's my post 12 days post-op from last year's surgery.  Things were much, much better last time around. 

We appreciate all of you and your prayers for Molly.  Please keep praying.

Music Monday 10.6.08

I hope to get in a few more album/song reviews in the weeks ahead, but I've just been too busy with work and Molly stuff to get to anything of real substance for Music Monday's. That said, here are some great songs. This is a nice cover of "John Wayne Gacy, Jr." (Sufjan)...

Dang! Cut Copy with "Lights & Music" live on Jimmy Neutron's show. Crank it up, stand up, and dance along!...

I have no CD's or downloads from Marissa Nadler, but that may change soon. Great song...

Marissa Nadler - Famous Blue Raincoat from Greg Eggebeen on Vimeo.

I really like the Fleet Foxes, as my Music Monday posts have shown. Here they are with more glorious harmonies...

This one is for my wife who needs some post-brain surgery inspiration as she struggles with symptoms and recovery...

Phriday is for Photos 10.3.08

Two photos at the University of Chicago. The first is one of the beautiful old buildings covered in ivy. The second is the parking garage at the hospital.

Lots-o-Links 10.2.08

Molly Update: Molly has been really worn out, feeling sick to her stomach, and has been in bed most of the time after returning from surgery.  Because of that she has been very frustrated and wants to feel better.  I'm just trying to remind her to take it slow and realize this is a long term healing thing.

Mark Devine has mentioned me in his new book. The chapter is found here. 

Jonathan Dodson: Why Evangelism Methods Must Change, Tools for the Missional Church, & Church Planting Manuals Reviewed.

Ahh, the growing Covenant Theological Seminary Worldwide Classroom.  What a great resource.

Justin Taylor: From John Piper's new book, Spectacular Sins, What To Do, and What Not To Do, With Evil.

Mark Driscoll is releasing the book Porn-Again Christian online for free.  It will be released progressively over the next several months. 

Josh Harris' Preaching Notes series: Mark Driscoll.

Ahh, the baseball playoffs are here.  Love it.  Love baseball.  Inspiration...