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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Monday, October 19, 2009



Atlanta Update and More

We are home from Atlanta. We got home Saturday night and were planning on having the girls spend Saturday night also with Grandma so we could "recoup." But we couldn't not see them so we met them for dinner at their favorite, Red Robin. After seeing us Rebekah HAD to come home with us so she did. Sarah was just fine to stay another night with Grandma so she did. We picked her up after church on Sunday and went to her friend (and husband from this summer's camp)'s Make-A-Wish kickoff party. Go enjoy Mickey Alex! And tell him we said "hi!!!!"

Before talking about the trip let's talk about some wonderful things that have happened. Today Mike, the concrete contractor showed up and formed the front sidewalk out and ordered the concrete for tomorrow. That should be just in time for us to build the ramp this weekend. We are hoping to be able to pick up the promised wheel chair later this week too. This was really a needed boost after a very emotional and tiring weekend.

As those of you who have read the last couple of posts know, we went to Atlanta the end of last week to allow mommy to participate in a medical trial for familial als. They have just recently obtained FDA approval to start testing of a new drug on people. In all of the country they have only been able to come up with 10 people to join the study who have familial als - it is that rare. Basically everyone that we met with (with one exception) was a PhD and not an MD. This is definitely research and not treatment for mommy. Mommy is on the medication but we don't know whether it is the real test drug or a placebo. Don't know if we will ever know.

We got pretty physically tired out from the many hours of flying from Portland to Atlanta, hotel rooms, taxi's etc. The sitting hurt mommy's leg pretty bad and she is in pain like she never has been before. Two days later the pain has not gone away.

The other thing that was difficult from this weekend is facing more detailed information about the disease. While regular als has some wonderful (at least from our perspective now) statistics about life expectancy, familial als is not quite so good. The docs that we are working with, who have seen a lot more familial als than most, pretty much said that life expectancy from first symptoms is 10-14 months with just about no one surviving past the 14 months. We are doing everything we can - which is mainly prayer and hope - to break those odds...

Yesterday we went to Home Depot to buy some handicapped accessibility supplies. Daddy is going to be putting up grab bars by the toilets for mommy and we also bought a shower chair as standing in the shower is getting pretty difficult. Daddy is also going to be installing a handheld shower head to help with showering. While we were at the hotel we were in a handicapped room and it had the entire bathroom tiled and no break going into the shower. There was a shower curtain to help control the water but any excess spray was safe because everything was tiled and sloped back to the shower drain. The thought of having to tear apart our recently remodeled (after the fire) bathroom is daunting but we may just have to do that. Anyone know any good tilers?

And finally for this post, something direct from daddy. Stupid things make me cry. Tonight at dinner mommy told me that I am going to have to take the girls to the Candlelighter's Mt. Hood Snowmobilers party this winter as she just can't walk in the snow and the wheel chair can't do it either. It was difficult thinking about doing something with the girls alone, without mommy, but I was doing okay with it. And then immediately after that we started watching "Little People Big World" (a show about some little people that live just a few miles from us.) During that show they actually went skiing to the same mountain where the snowmobiling party will be - coincidence? Anyway, on the show they were skiing where I used to be a competitive skier and we were talking to the girls about skiing. They both asked me to teach them to ski. And with that it hit me that I might be able to but it would have to be without mommy. She won't be able to ever share that with us and no matter how much we might in the future have fun doing something (like skiing) as father/daughters, we won't be doing it as "a family" as mommy won't be there. We maybe able to be father/daughters, but I don't know how we will ever be a family anymore without mommy. Sarah asked me why I was crying and I could only ignore her question hoping I didn't really have to answer it.

Pray for the emotions, all of ours.

6 Shared:

At Monday, October 19, 2009 10:09:00 PM, Blogger Stephanie Roscoe-AFN Ministries Left a thought...

Praying for you all!!!

 
At Monday, October 19, 2009 10:17:00 PM, Anonymous Anonymous Left a thought...

I'm so sorry you guys. :( What you're going through is completely unimaginable. My heart is heavy for you all. I will be praying.
Kelli

 
At Tuesday, October 20, 2009 5:36:00 AM, Anonymous Anonymous Left a thought...

Prayers continue to shine onto your family. Thinking of you all daily.

Marie

 
At Tuesday, October 20, 2009 8:15:00 AM, Blogger Debbie Left a thought...

Mommy will always "be" with you and a family is what we make it. Take care of yourself, too, and don't hide the tears; the girls need to know that men are sensitive, too.

You are always in my thoughts and prayers.

 
At Tuesday, October 20, 2009 2:10:00 PM, Blogger Sara Left a thought...

It was good to see you all at Alex's Make-A-Wish party. We do think of you often, and consider your family part of ours now.

Our hearts are with you, and we are sending all our love and support your way.

 
At Thursday, October 22, 2009 3:53:00 PM, Blogger Mark Left a thought...

My friend,

Frances will live on. She'll be in Heaven with her Lord and Savior (Who will heal her immediately), in your heart and the hearts of those who love her, and in the beauty of your daughters whose smiles and kisses reflect Frances's beauty and love. You may not see Frances, but you will see her, in everything, the same way you see her now.

MJ

 

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