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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Saturday, January 28, 2006



We are Home

We have made it home. When Rebekah woke up this morning, at 6:00 am, she wanted Daddy, ChiChi, Grandma and ByeBye. I explained to her that she needed to finish her night night so that we could see Daddy and go home and see ChiChi and Grandma. It took a little while, but she did fall back asleep and slept in until 9am or so. Once she was up, she wanted Daddy, ChiChi, Grandma and ByeBye again. She got a new diaper, changed into her "normal" clothes (and out of the hospital jammies) and wanted disconnected from her pole. The fluid bag was just about empty and we had met the time requirement, so the nurse disconnected her so that she could be free and not have to worry about keeping the pole with her. Thanks Nurse Molly!

Mommy continued to work on packing things up and getting us ready to go. Rebekah, grabbed the phone and started dialing and calling out for Daddy. Mommy dialed Daddy for her so she could talk to her Daddy and did she ever talk. A little later, Daddy came over to the room and the three of us took most of the things down to the van. We were ready to go and waiting to see Doc to discharge us.

Rebekah passed her "Patrick" balloon to another young child, who would probably enjoy it. Doc took Rebekah into the boy's room to give him the balloon. According to Doc, she did a "great" job. (And we noticed that she didn't come out of the room with the balloon, so that was good.) We got out of the hospital late morning.

The last couple of days have been pretty busy. Grandma M came Thursday night after work and stayed with Rebekah through the night and the next day. Thursday night, Mommy and Daddy were able to go out to dinner with friends Bob and Ellen. It was nice to get to sit down with them and enjoy some time with together.

During the day, Thursday, we had a visit from Rebekah's Chemo Pal and Rebekah had time with Physical Therapy and Speech Therapy and got to bake some cupcakes with Melissa of Child Life. She had a hectic day, and didn't take a nap until 5:30pm or so. She had so many visitors that she never wanted to calm down for a nap. When she got tired (while she was cleaning up after baking), she told Melissa she wanted Daddy and they headed back to the room. Mommy laid her down on the bed and she settled right down to sleep. She woke up pretty cranky, just before Grandma got there.

Friday, we continued to have many visits. One of them was a visit from Addie and her parents. Addie was in the hospital for a followup appointment on her heart surgery 7 months ago. They brought a balloon for Rebekah and visited for a little while before going to their appointment. It was nice to see them and glad to see Addie looking good. Later in the day, Rebekah's Chemo Pal (Meena) came and brought a baby doll for Rebekah. Meena asked her what the baby's name was and she said Addie. Baby Addie likes Giraffe's - she has one on her clothes, a stuffed one and one on her blankie.

Her End of Chemo party was good - visitors included Grandma M, Grandma A, Aunt TT, Uncle Mark, Cousin Jacob, Cousin Michael, Uncle Chuck, Aunt Molly, Cousin Cole, Debbie (who watches Sarah for us while we're in the hospital) and some of her kids - Halley, Kelsey, Drew and Kelsey's friend Tiara in addition to Melissa of Child Life who threw the party for us, some nurses and some Clinic staff members. Grandpa and Grandma C were out of town, but called to extend their wishes. Rebekah wanted some of the pizza and cupcakes and ate bites of both. It was great to see her wanting to eat and taking some bites.

It was hard to celebrate while we knew that another family was suffering from their loss. Please pray for Nikolette's family.

Rebekah has a really bad diaper rash - thanks to the soft stools and the chemo. We are keeping it covered and trying to keep her clean. With her counts dropping, she will have less ability to heal on her own, so the rash is likely to stick around for a while.

Last night was the first night (this hospital stay) that Rebekah did not throw up. She didn't get quite as much nutrition, but everything stayed down. That is improvement. It is always a little bit of a guessing game as to how to get Rebekah enough nutrition in each day and what portion should be "with fiber" and what portion should be "without fiber" and how diluted should it be and what rate for how long and then when does it need to be shut off because she's going to get sick if it isn't. It isn't any fun, but we seem to be getting better at it (maybe).

3 Shared:

At Saturday, January 28, 2006 5:56:00 PM, Anonymous Anonymous Left a thought...

Glad you made it home, :)
as all ways you all are in my prayers, and esp. my prayers go out to Nikolette's Family
huggs
janice

 
At Sunday, January 29, 2006 11:19:00 AM, Blogger Deb Left a thought...

Somewhere in the book of Psalms (I think it's Psalm 139) there is a passage that says this: (Deb's paraphrased version)..."How precious are Your thoughts toward me, Oh God. How great is the sum of them? If I were to count them, they would outnumber the grains of sand."

As many people who read Rebekah's Page --and as many thoughts and prayers that we pray for you daily --is nothing at all compared to how much the Lord cares for Rebekah and for you. His thoughts toward us OUTNUMBER the grains of sand! How awesome is our God?! He cares for us so much - and will provide for our every need.

In addition for my prayers for Rebekah's healing, I'm also praying daily that you are reminded just how much the Lord loves you and cares for you --that He will manifest Himself in a new and special way each day.

May He surround You with His love and presence,
Deb

 
At Sunday, January 29, 2006 12:26:00 PM, Anonymous Anonymous Left a thought...

So glad you're all home again.
We're all over our colds now so as soon as Rebekah's counts rebound from this chemo, how about some pinochle?
Wyla

 

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