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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Wednesday, December 14, 2005



Midweek Update - From Daddy

Here we are about ½ way through another full week stay.  What is important is that this is our next to last full week stay – at least as far as planned things go.  

I am sorry that I have been absent from the updates for awhile and the “burden” if you can call it that has fallen on mommy to keep you up to date.  Basically I have been gone to spare you the reader from more negativity.  I have been really upset/depressed/negative about treatment lately.  I think that the accumulative effect this is having on our lives finally caught up to me.  Hopefully this will be a turn around for me.  

Notwithstanding the HUGE pile of files I have in the trailer to work on, I got to spend two meal times and visits with Rebekah and mommy today.  Even though she would not/could not eat, Rebekah wanted to come to the Candlelighters sponsored lunch with mommy and daddy and wanted to have her own plate, sit at the table, etc.  It is the little things like having a lunch provided that really help the parents break up the monogamy of a hospital stay.  It is the BIG things like having Rebekah want to come with us that gives us great joy.  

This evening Grandpa came and walked with Rebekah and the physical therapist.  When I went over for dinner they were out in the halls walking and I had to walk around quite a bit to go find them.  When Rebekah saw me she ran (as best as she can) down the hall to see me.  Grandpa and the therapist had to take some pretty brisk steps to keep her IV Pole and themselves up with her.  Just hearing Rebekah shout “da da” was pretty awesome music to my ears.  Once back in the room Uncle Chuck brought mommy and daddy some Bento Chicken Bowls for dinner – that was nice.  

I was finally able to speak with the head of housekeeping a second time today.  I was floored when he said that he found out where the breakdown was earlier in the week.  In fact I think his exact words were “we dropped the ball.”  It turns out that the dispatcher for housekeeping initially paged the wrong person and then ignored later phone calls because s/he had “already dispatched someone…”  It was SO refreshing to actually here someone take responsibility for something.  We just hope it gets “fixed” so that no one else has to go through this particular problem.  And for those of you who know me you will find it quite surprising that the head of housekeeping actually said to me “I am sorry this happened but honestly I can’t believe you have been so calm about it…I am a father too and I would not have been as calm as you are.”  Frances says its because I didn’t have to stay in the dirty room…

As we get somewhat close to the end of this chapter, this part of our treatment we are more and more conscious of others coming in.  Our hearts break for every new face that we see.  We somehow, someway want those coming after us to have an easier time than us.  We don’t know exactly how to do it but that is what we want.  And while I am on that, please add “Craig” to your prayer list.  Craig is a 12 year old newly diagnosed leukemia patient that we met today.  Our hearts go out.

Finally let me thank ALL of you for spreading the word about Rebekah and for keeping up your visits.  We have even received a few donations at www.HelpRebekah.com which had been basically non existent for several months.  As we think about having to start out of pocket on our medical bills again in January this is greatly appreciated.  

8 Shared:

At Wednesday, December 14, 2005 10:39:00 PM, Blogger LawrenceLim Left a thought...

Dear sister,

I've prayed for Rebekah, and for the family. Please do not hesitate to update us if you need anything okay? The Lord is good and knows what's best to be done. He loves Rebekah mor than we humans do, trust in Him.

Love in Christ,
~Lawrence~

 
At Wednesday, December 14, 2005 11:59:00 PM, Blogger Eva Left a thought...

So glad to hear you're almost done with the long stays.

 
At Thursday, December 15, 2005 3:32:00 AM, Blogger Alison Left a thought...

Glad it was a good day!

 
At Thursday, December 15, 2005 8:18:00 AM, Anonymous Chris Left a thought...

My prayers as always are with your family.

: ) Chris

 
At Thursday, December 15, 2005 8:53:00 AM, Blogger Katie Left a thought...

keeping you in prayers, especially during this treatment and the christmas season

 
At Thursday, December 15, 2005 10:29:00 AM, Blogger mommyguilt Left a thought...

The image of Rebekah running to greet you with everyone tagging along behind to keep up with her is just precious! I bet she was so excited to see you. I am going to do a post on my blog this afternoon linking helprebekah.com and also add to my blogroll. As soon as I figure out the formatting, I plan to put the banner on my website. I hope to bring as many people as I can over to Rebekah's sites.

Our prayers always,
Christina

 
At Thursday, December 15, 2005 5:37:00 PM, Blogger JodiTucker Left a thought...

Lifting up precious Rebekah to God.
Lifting up your whole family to Him, too right now.....Love, Jodi

 
At Thursday, December 15, 2005 6:50:00 PM, Anonymous Teresa Left a thought...

Appreciate the mixed bag of comments and emotions you both have been dealing with this past week. I feel helpless, but also filled with prayers of hope for you all. Praying for more grace, more mercy, more strength for you all.

 

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