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.

Comments

[Joe Thorn]

We love you and are praying for you guys.

[Noel]

Praying for you guys.

[Len Flack]

Praying for your family.

[Account Deleted]

Wishing I were closer to help with the laundry. I don't cook, so couldn't help with meals much, but cleaning... that I can do. Since I'm not there, I will pray for you here.

[68guns]

Continue to pray for you!

[Joe Lee]

Praying for you, Molly, your children, the docs, and your church...

[Stephanie]

I will continue to pray for Molly and your family.

[Marcus Goodyear]

We love you guys, and we're praying for you.

[Aaron]

Wow, Steve and Molly, thank you again for sharing with us. I am amazed by your faith in the midst of this, and that greatly encourages mine. As Piper has said before, it's not on the primrose path of sunshine that we meet God the most, but it's on the dark road, the hard road, where we meet him most, go deepest with him, enjoy him and see more of him. And it's faith in that road that brings great glory to our great God.

Steve, I don't say that glibly, but as one who has seen and experienced firsthand suffering in the last two years. It is my prayer for you that the Lord will continue to meet you and sustain you. I pray that the Lord will give you the answers you are praying for with Molly and all her hardships right now. I pray that the Lord will heal her, that he will take away her pain and frustration. That more than anything he will fill you all with more hope and faith, that he will bring you closer in to him, that you will see his great love and power.

I've never met you guys, but my wife and I love ya'll and have been praying for ya'll. We look forward to hearing a great report soon.

Sincerely,

Aaron and Holly Mayfield

[Jay Risner]

I appreciate your sense of humor through this. That would not be possible if God were not on His throne.

I'll remember you both often.

[Heath Lloyd]

Dear Steve & Molly: I know you guys do not know me from Adam's house cat (whoever that is) but I read your blog regularly. I came initially for the Keller resources and have stuck around. I am a pastor in NC, with a wife and young children. You guys are certainly in my prayers. I pray that you will know the peace that passes understanding, that Jesus will be very near to you. May He watchover and keep you, my brother and sister.

[J]

Praying for you all.

[Kevin Behringer]

Steve:

Your whole family is in my thoughts and prayers.

Your mention of Madison stuck out to me and I wanted to offer something. I'm not sure if you have friends or family in the Madison area, but my wife and I live in Whitewater...about 45 minutes away. If it comes to that, and you need anything, be it a place to stay or someone nearby to help with anything, please feel free to ask. [email protected]

Kevin

[Jason Morrison]

I am praying for your family.

[Pete Williamson]

so sorry to hear the news...praying for you guys.