Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Friday, August 28, 2009



Rebekah's Scans Are Stable; Mommy Not So Much ...

Rebekah's scans are stable with nothing remarkable. At least that is what we heard from the nurse. We didn't have a chance to meet with the doc because mommy's got an infection which has really wiped her out and going to an oncology with a fever is not a good idea. We've rescheduled for next week. We spoke briefly with endocrine and they don't think they'll be making any changes to her medications. We will meet with them next week also, but needed to order more meds so wanted a quick update.

Now for the not so good news. Going into the MRI, we had a couple of ideas of what might be going on. One was MS (like Mommy's Mom) - it is livable but disabling. Another was ALS (like Mommy's Dad) - fatal. Third was both MS & ALS and fourth was something else entirely. We really hoped for the something else and that it would be easily treatable and if not that then MS.

Well, Mommy's MRI was clear indicating that she does not have MS. After the neurologist performed some other testing on Mommy's weak leg earlier this week, Daddy asked what she (the neurologist) was seeing on the screen of the device. She stopped and said that it was showing her that Mommy has ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease). What? Did we hear that correctly? Unfortunately, we did hear correctly. She is referring us to an ALS Clinic (the same clinic where Mommy's Dad was treated), so we won't really know much more until after we have that appointment, which hasn't been scheduled yet.

We have known that ALS was a possibility as it runs in Mommy's family. Her dad died of it 10 years ago, her aunt died of it two years ago and many, many other relatives have died from it. It is a disease for which there is no cure. Typical life span after onset of symptoms can be 2 years to 5 years with 50% surviving at least 3 years. In 10% of ALS cases, it runs in families and when it does, it can be very aggressive with much shorter time frames. Mommy's dad died 7 months after his first symptoms (Mommy has been having them for 3.) Each person reacts differently and makes their own choices which can impact the outcome. For more information, you can check out the ALS Association website for more information on the disease.

We don't really know what is going to happen. We just have to take it one step at a time. Meanwhile, we are doing some research and trying to "wrap our arms around" it. It hasn't been an easy week. Mommy has been fighting this infection which has kept her pretty much in bed or on the couch without any ability to really function or process the news. Finally, with antibiotics, pain meds and anti-nausea meds, she is feeling a little better today.

Right now, the girls haven't been told much of anything. They know that Mommy is really sick right now and just needs to get to feeling better. We've been telling them that Mommy's leg is hurting and they need to be careful around it. We probably won't tell them much more, until after we've met with the ALS Clinic and have a better idea of what to expect. Then we'll have to play it by ear as to what to tell and when to do it.

Please continue to keep us in your prayers as we continue down this new path.

12 Shared:

At Saturday, August 29, 2009 10:30:00 AM, Blogger Debbie Left a thought...

You know you're in my thoughts...

 
At Saturday, August 29, 2009 12:57:00 PM, Anonymous Marie in Michigan Left a thought...

I stumbled across your blog a few years ago and have it marked to always inform me of updates. I have kept in the loop of Rebekah's progess over these few years and everything else that has happened with your family (i.e. the house fire.) And now this with mommy. I felt convicted to finally write you a little message after reading this today. Please know that your family is in my prayers as much today as they have been over the past three years. I don't know you and live clear over towards the east coast but it feels like I do know you. Again, I will be adding mommy to our prayer list at church. God bless you. You really have become an inspiration to me and I have learned a lot from you.

 
At Saturday, August 29, 2009 2:01:00 PM, Anonymous Anonymous Left a thought...

This comment has been removed by a blog administrator.

 
At Saturday, August 29, 2009 2:31:00 PM, Anonymous Anonymous Left a thought...

What a low blow this is. I feel for you so much. I will continue to pray with hope. I pray Frances will get over this infection quickly and completely and that she'll be part of the % that overcomes this thief of a disease. I like how the person on your links (can't remember her name right now) says she has als but als does not have her. Amen to that. And I pray that for Frances as well.

On the other hand I'm so happy to hear Rebekah's scans were clear. :) Go Rebekah!!

Praying for all of you,
~Kelli Whisenhunt

 
At Sunday, August 30, 2009 8:58:00 AM, Blogger Trwaldo1 Left a thought...

Scott & Francis~
TT told me, I'm sooo sorry. I immediately prayed then contacted Pastor Steve and got you on a pray list...please let me know what we can do, if anything...On a brighter note kind of, a friend of the family just passed from ALS, but he lived with it for 25 years...that gives me lots of hope for Francis, I will be praying daily for you! With lots of Love, Tracey, Russ & the Boys...
PS I'm relieved that Rebekah's scans are clear!

 
At Monday, August 31, 2009 9:15:00 AM, Anonymous Anonymous Left a thought...

I am so sorry to hear this news. Heather called me Saturday and told me. You are both in my prayers.

Aunt Annie

 
At Tuesday, September 01, 2009 9:16:00 AM, Blogger Char Left a thought...

I am continuing to lift your family up in prayer here in NC. Praise God for Rebekah's clear scans.

 
At Wednesday, September 02, 2009 5:57:00 AM, Blogger Bugsy Left a thought...

All of you are in my thoughts. I have had close friends with ALS in the past. Please let me know if there is anything I can do. The Foundation is a wonderful organization and they can help all of you through this difficult time. I have supported them in the past with donations as I find that they really do a great job.

 
At Thursday, September 03, 2009 11:52:00 PM, Blogger Robyn Left a thought...

My heart hurts for your family. I'm not even sure what else to say.

 
At Friday, September 04, 2009 8:37:00 PM, Blogger Ask For the Nations Ministries Left a thought...

I am praying for healing.

 
At Saturday, September 05, 2009 7:24:00 AM, Anonymous Anonymous Left a thought...

I am so stunned by your news that tears are flowing on your behalf. Dearest Father God in heaven, great and powerful healer, I implore you to work your miraculous healing power in this family. Gird them all up with your faith, your strength, and your immeasurable love. I pray wisdom as they seek your face and the wisdom in the answers they are seeking. Abounding Grace, Peace, and Mercy of God I pray for you!
Love, Teresa M.

 
At Tuesday, October 06, 2009 10:41:00 PM, Anonymous Eva Marie Left a thought...

*sigh* Another one of those times I want to just say, "Why, God, Why?!?!" I'm so very sorry. May God give you the strength every day to tackle every challenge you face as a family Hard as it gets, I know He'll never leave you or forsake you - even in the midst of terrible trial - as you keep your eyes on Him.

 

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