Friday, August 28, 2009

I don't expect you to know what to say, because I don't know what to say.
This really and truly has been the hardest week of my life.
All of the prepping in the world can't prepare you for days that we've had.
I am sad. I'm angry. I'm heartbroken. I'm frustrated. Confused. hurting.
But I'm holding onto Hope. Rest assured, God's got me firmly in His grip, and I am kept.

Just a recap:
Monday, JD experienced the worst pain he'd had in his spine, as he tried to lay on the bed that night.
Tuesday, Mom called his oncologist and she scheduled a spinal MRI for the next morning. But also told us that she really really believed that he was relapsing...
Wednesday, MRI first thing in the morning. Dr. Goodman didn't have to say a word for us to know the results. She was wearing it in her eyes, on her shoulders. But she did say a word, lots of them, and our hearts broke then and there. The cancer has spread down his spinal cord. There's tumor near his tailbone, 'highlighting' in another spot.
I can barely stand to type those words.
Thursday, we took Cate to her cardiologist appointment to see if there was something that could be causing her lack of growth. The dr asked why were there, and I gave him the three reasons- her not growing, having a murmur, and my heart history. After explaining the conditions I have, he flipped over her EKG and said nonchalantly, "She has Long QT Syndrome, too." What!? I'm not sure it's really even registered in my brain yet. That, or I'm just numb. Some genetic testing is in the works, to determine which gene the mutation is on, so we can determine the best course of treatment. And in the mean time, and probably for the rest of her life, she's taking a beta blocker 3x/day, every 8 hours.
I have Long QT Syndrome- I was born with it as well, but was asymptomatic until I was a teenager. I ended up having to have a defibrillator implanted when I was 19 because of the severity of my condition. I can't stomach researching right now, can't look at what it may mean for her, as far as activities go. I just can't go there right now... Believe me, I am MORE than aware that there are much, much, much worse things, but this was something I had prayed and prayed that my children wouldn't have.
So now, it's Friday.
A new day?
I hope.


  1. I couldn't sleep last night and I believe the Lord kept me up to intercede for you, Cate, and JD.

  2. Kristen, you and your family have been and are in my prayers. I'm currently studying the book of Job and you just keep coming to mind when I read it. It's hard to understand why God's children have to endure so much pain, stress, heartache. But we just don't know what's going on in God's courts. He's in control and while we struggle to grasp that and probably never will fully grasp it, we know we are His children and in His hands. I will continue to pray for you and yours.

  3. just wanted you to know that this entire situation is being kept in constant prayer. i won't pretend to understand what you're going through at all, but i will tell you my heart was breaking last night as i discovered all the news: jd's as well as cate's. kristen, if you need anything at all, please don't hesitate to call. that's not an empty you, friend.

  4. thanks for the update. And thanks for letting me/us/your adoring fans be part of this to pray.

  5. I lost my 22 year old daughter to undiagnosed Long QT Syndrome. I would be glad to help you on this journey. No one should do this alone. I've been studying all about LQTS for almost 12 years now.

    You can join an excellent group called Parent Heart Watch that are trying to protect your from sudden cardiac arrest.

    You can go to our web site at:

    If you would like to join just contact them. You can also contact me through them. Just send them your contact information and tell them to forward it to the "Long QT Lady"

    Long QT Syndrome is a very treatable condition.

    Make sure you are taking your child to a pediatric EP who has taken care of LQTS families before and is familiar with it.

    I have the LQT-2 gene, and my husband and two living children ages 32 and 30 have the LQT-6 gene.

    It's good you are getting the genetic testing as that can tailor the treatment that they choose.

    Please feel free to contact me through Parent Heart Watch. I just didn't want to post my E-mail address on a blog.

    Hugs and Blessings to You and Your Family,

  6. Praying,constantly. For everything. Praying for a better weekend full of peace and rest.

  7. Sure was great to spend time with my beautiful daughter, precious Cate and Corban too. Sorry Jordan was sick and we couldn't spend time with him today. I hope he's better tomorrow! - and it stays contained to him! :) I love you and I cannot tell you how lucky I am to have such a wonderful daughter. Just like Uncle Randy said to you - I too am proud of you! God is watching over our family and He is in control! Sweet dreams..... Mom

  8. Praying for enough grace for each moment. Thinking of you! Prayers, Bridget

  9. I'm so glad that I randomly decided to check your blog today! I had no idea what all was going on with you guys! I will add JD and Cate to my prayer list! I'm so sorry that this had to happen to your family. Hugs!


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