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.

Friday, September 11, 2009

Friday Updates

Hope you all have had a good week.

This week has been a lot of whirl wind running around trying to figure out our future. We still are not sure when we are going to be telling the girls. We have an appointment at the ALS clinic in a couple of weeks and at that clinic we expect that they will have a lot of support staff that help with all of the end of life as well as medical issue type things. In addition we are meeting with Rebekah's behavioral psychologist next week and will talk with him. Between all of that we are hoping to get a grasp on the best way to share with them what will be happening in the all too near future.

In addition mommy has spent a lot of time looking at different medical trials that could be helpful. Unfortunately there are not any that offer real promise to us in our situation. We have decided on a trial in Georgia that focusses on familial ALS. She has made it through the pre-screening and they will be sending someone for blood and a physical exam. After that we will have to travel to Georgia (Atlanta) up to two times. It may not be something that can help us right now but hopefully, just hopefully it will help come up with something that will help others, including maybe even our girls or nephew.

It has been an emotional week as we start to have lots of conversations that no family ever wants to have. Thank you again very much for your continued thoughts and prayers as we know that is the only way that we are able to get through this.

6 Shared:

At Friday, September 11, 2009 8:17:00 AM, Anonymous Anonymous Left a thought...

You have our prayers and support. I ask God to reveal Himself to you in a new a fresh way. I Pray for healing for you all. Wisdom and the God's approptiate path for your feet to take.
Teresa M.

At Friday, September 11, 2009 8:26:00 AM, Blogger John Left a thought...

Our thoughts and prayers are with your family as you go through this trial. We pray for God's blessings on your time together.
Diana Short

At Friday, September 11, 2009 11:40:00 AM, Anonymous Anonymous Left a thought...

Scott & Frances - My heart continues to hurt for you and I am keeping you all, including Grandma M. and the rest of your family in my prayers. May God's grace surround you and hold you close as you continue on this journey.

Aunt Annie

At Friday, September 11, 2009 3:31:00 PM, Blogger Melenie Left a thought...

Scott and Francis-My heart just breaks for all of you as you walk through this trial. While I know that God has a plan, I have to wonder what it is and what good will come of this. We will pray for strength and healing of bodies and hearts...and of course, the peace that passes all understanding. You both give so much of yourselves to others in their time of need...God will bless you through this I know...Please let us know if there is anything we can

At Sunday, September 13, 2009 9:56:00 AM, Blogger Debbie Left a thought...

We are always here for you and you are always in our thoughts.

At Sunday, September 13, 2009 10:11:00 AM, Blogger Di Left a thought...

I just want to say I have followed your blog for a couple of years. I can't believe this new turn of events. All my prayers are going your way and I know there has to be a golden gate up in Heaven with your families name on it. God bless you all.


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