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, December 16, 2005



Friday Night

Daddy had court today and lots of errands so he did not get back until mid afternoon. Rebekah had therapy appointments (speach, physical, occupational???) all afternoon so I didn't get to see her until dinner time. I went over there at about 4:00 and mommy and I were talking about going to dinner downstairs in the cafeteria - that is our idea of a hot date. Mommy asked "do you want to go downstairs to get something to eat?" and before I could say anything Rebekah started yelling "I DO I DO..." It was cute - she came with us.

Unfortunately the cafeteria was closed (or at least all but the fried food counter) because they were doing a Christmas dinner for the staff in another part of the hospital. Can someone please explain to me why its okay to close the public cafeteria so they can feed the staff???? It worked out though - after I "discussed" the situation with the food service manager we were invited to join the staff meal. It was actually nice. They had a really good jazz band playing and Rebekah and daddy got to dance a little bit. I was a bit embarassed as it seemed everyone in the place was watching us. Oh well.

Rebekah had some throw up problems today and her diaper rash is really really bad. We are using some mud-like ointment with lots of antibiotic/anti yeast stuff in it. Other than that Rebekah was really fun and energetic today. That is why we were thrown for a loop after dinner when the nurse came in and said Rebekah needed blood as her counts were already down. That is kind of scarry to us because I don't think they have ever been down this fast. We are not sure what this will mean for us leaving tomorrow. Only time will tell.

She got to go "Shopping" with the people from make-a-wish. Her physical therapist took her and she got to pick out gifts for her immediate family and then they wrapped them for her. This will be interesting come Christmas morning as I think those are the only gifts that we have right now. Apparently they choices were too much for Rebekah and her therapist had to pick out three things and then ask Rebekah which of them she wanted for each of us. The word that we got was that her only answer was "yah" and she wanted all three...

The prize of the day was a stocking for Rebekah that came fully stocked with toys and fun. The toys and fun all got poured out and the stocking itself, which Rebekah calls "boot" was the enjoyment:

14 Shared:

At Friday, December 16, 2005 9:19:00 PM, Blogger Shelley Left a thought...

I bet she had fun emptying her "boot"...that is such a cute pic of her with the stocking on! Will keep praying

 
At Friday, December 16, 2005 9:57:00 PM, Anonymous Anonymous Left a thought...

That's rich!

There's still a happy little girl in there.

Hang in folks.

cp

 
At Friday, December 16, 2005 11:11:00 PM, Blogger trisha Left a thought...

that is too cute! You can tell she is really enjoying herself with that big stocking! you guys are in my prayers everyday!

 
At Saturday, December 17, 2005 4:38:00 AM, Blogger Alison Left a thought...

What fun!!!

 
At Saturday, December 17, 2005 5:11:00 AM, Blogger Derek Johnson Left a thought...

It is amazing to me to see the sheer will of Rebekah as she enjoys her "boot"! Her inner strength is a light that shines so brightly!

The gifts of family togetherness, and time are the best gifts you have to give one another. I wouldn't worry too much about not having obtained your gifts to give. You already have them. May God continue to bless your family.

From my family to yours, Merry Christmas and Happy New Year!

Derek Johnson

 
At Saturday, December 17, 2005 5:43:00 AM, Blogger CJ Left a thought...

Can I just pipe up with a comment in defense of the cafeteria? I'm guessing that they picked 4:00 because it's one of the slower times in the food service area - to inconvenience the least amount of people.

Please, please give a minute to think about the people who work in your hospital. I know you spend an incredible amount of time there, but they spend a large amount of EVERY DAY there. You get to go home, they are there every day witnessing the pain and suffering of hundreds of people. Don't they deserve an hour or two every year to enjoy a meal together?

 
At Saturday, December 17, 2005 6:15:00 AM, Anonymous Teresa Left a thought...

I am glad there was a wonderful memory made in the midst of disappointments. How precious to envision a daddy/daughter dance.The joys and frustrations of life, I pray for more joys and less frustrations for you all. God bless you with many Christmas blessings for under the tree and upon your lives, enriching you with good memories and a joyous Holy season.

 
At Saturday, December 17, 2005 6:58:00 AM, Blogger Deb Left a thought...

What a great photo of Rebekah with her leg in the "boot"!!

Our family is travelling to Ohio today to celebrate an early Christmas with Ken and Lori and all the rest of our family. We are thinking of you and praying for you --wishing you could enjoy a "normal" Christmas together...

...knowing that despite the inconveniences of things like having the cafeteria closed to visitors....the Lord ALWAYS takes care of you! I hope the "staff" meal was delicious!

Don't stop leaning on the Lord - He is sovreign - He knows all - He sees all - and I believe He has a special blessing in store for you this Christmas season!

...Always praying!
Deb

 
At Saturday, December 17, 2005 7:51:00 AM, Blogger Rebekah Christine Left a thought...

Even though we don't comment much, I will because I don't want the wrong perception to be made.

CJ - you are so right about how much the staff that run the hospital deserve. They are pretty much all awesome and we take every opportunity to tell them so. Although rarely, we also try to politely suggest when they are not living up to par.

The cafeteria being closed at 5:30 (when we finally go around to going over there) was more "in the dinner hour" but the timing wasn't the issue - it was that they closed and didn't bother to give anybody advanced notice, post signs or anything. I don't want to take anything away from what the staff deserve but the cafeteria shouldn't have to close down on the patients and families to give the staff what they deserve.

But the ultimate thing (to me at least) is that the manager was totally awesome and took care of any inconvenience in a really cool way after being made aware of the issue. THAT IS WHAT REALLY MADE US HAPPY!

Scott (Rebekah's Daddy)

 
At Saturday, December 17, 2005 4:36:00 PM, Blogger Jayleigh Left a thought...

Ohh the "boot" pic... what a precious, precious little girl.

Praying that the counts are up, and that mommy and daddy get the rest they so need. God bless you all.

 
At Saturday, December 17, 2005 6:09:00 PM, Blogger JodiTucker Left a thought...

So neat to see photos of Rebekah via this blog!! She is precious!
Please post some of Sarah when you are able, too. Thanking God for children whether they are 1,4, 16, 18 or 21 (or whatever)...love,Jodi

 
At Sunday, December 18, 2005 5:01:00 PM, Blogger My Kid's Mom Left a thought...

Scott: I can understand why you'd be frustrated with the kitchen being closed without any kind of advanced warning. It's not like you guys could just get in your car and go to Wendy's instead. Until you "live" in a hospital for days/weeks on end like you have (and like I have with my daughter's hospitalizations), you just can't fathom what it's like when something unexpected like that happens. It may not sound like a big deal to others, but hey, you guys have been dealing with a LOT over the past several months - and coping skills are stretched to the max. Whenever I've read your posts on your interactions with the staff - you alwasy seem to be respectful even when upset. I don't think you were begrudging the staff a nice dinner, just questioning why advanced notice wasn't given or alternate arrangements weren't made. Sounds reasonable to me!!! Also - probably 95% of the staff DO get to home to healthy families when their shits end; and when you get to go home, you are bringing home an ill child along with you, so you never get a break!

Take care and have a VERY nice Christmas. I will keep all of you in my thoughts and prayers. Please say a quick prayer for my daughter, too, who is having outpatient surgery on Tuesday - nothing major, she'll be back home that evening, but we just want it to go smoothly for her. Thanks, guys!

 
At Sunday, December 18, 2005 5:04:00 PM, Blogger My Kid's Mom Left a thought...

Oh, so sorry - I meant to type "shift" and it came out sh___!
Can you tell I'm exhausted???
Oh well. . . Kinda like your "monogamy" and "monotony" blunder, huh??

 
At Sunday, December 18, 2005 5:13:00 PM, Anonymous Anonymous Left a thought...

Praying you all stay healthy and cozy in your home during this wonderful snow storm!! Caron

 

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