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.

Tuesday, November 22, 2005

One of Those Days

Rebekah slept well last night, after she finally went to sleep and really didn't wake at all during the night through all the diaper changes and vitals checks. The machines only beeped once or twice and Mommy was actually able to get a "good hospital" night of sleep, stirring most of the times when the nurse came in, but not having to get up too much.

However, Rebekah woke up at 6:45 and didn't want to go back to sleep. I convinced her that it was still night night time and she was quiet for a little while, but by 7:15 she was throwing up all over everything. I was able to get her cleaned up and cared for without needing the nurse's help (after all, it was shift change time). At that point, there was no chance of going back to sleep. Off we went in the wagon...

She was a crabby little girl most of the morning wanting to go go go and not wanting to be in her room. One minute she wanted to go in the wagon, the next she wanted to pull the wagon and the next she wanted to go in the stroller. Then around 10:30, she fell asleep in her stroller on one of our rounds around the ward. She slept, in the stroller for several hours... and woke up crabby. Uugh!

New friend Jill stopped by (while Rebekah was asleep) and hung out and allowed Mommy to get a shower and relax a little. She scored big by bringing Rebekah a Dora blanket and some other gifts. And she brought some pumpkin bread, too, which is delicious. I'm not sure whether I will share it or not. Her son is doing really well and she commented that she worries about how other mom's will feel about that. I think it is fabulous that her son is doing well. I would much rather see all the kids doing really well than any of them doing poorly. Even if we are having a rough go, I'm happy to see other kids and their families doing well. Anyway, it was great to meet her and get to know her. At the same time, she (and I think all of us with a child that has been diagnosed with cancer) worries about whether it will come back. When (if ever) will that worry come to an end? It is good to be able to sit and talk with someone who has dealt with some of the same issues that we have.

Because Rebekah's throat has continued to have issues, we really wanted to have it looked at. The doctors were considering whether to have an Ear/Nose/Throat doctor or a Gastroenterologist look at it. One doctor suggested one and the other doctor suggested the other. We have been talking with the doctors about it for the last couple of weeks and they had said that we would have something done while we are in the hospital this week (while her counts are good).

When I saw the doctor this morning, I asked about it. She said she was going to call the Gastroenterologist and try to set something up. Since Rebekah had been off her food for a while, let's keep her off them and she'd get back to me within an hour. I didn't hear and didn't hear and finally checked with our nurse to see what she knew. She told me the "orders" had been put in, but she didn't have any timeframe. She did some checking and said that they expected it to be in the afternoon - maybe 2:30.

When they came for her, the case manager was explaining the procedure and it was a "Barium Swallow/Lower GI Follow Through". That wasn't what I had understood, although I hadn't asked all the questions that I should have. I was expecting that they were going to put a scope down her throat to look at it and see what might be wrong. The case manager didn't realize that the oncologist hadn't come back in to talk with me.

We ended up cancelling the procedure, until we had more information. We wanted to make sure that it was the right procedure and we didn't have enough information at that point to know that. Both Scott and I were frustrated and Scott was mad at me for not getting better information. I let him down as well as myself and Rebekah. Too many communication break downs.

After more information (this was a non-invasive procedure and therefore less likely to cause infection than a scope would be), we agreed to the procedure and had the case manager trying to get us back on the schedule, which she was able to do.

Then we had to figure out how to get Rebekah to swallow Barium. We figured the best way, was to give it to her in a syringe and we took a couple of syringes down with us. She drank it up really well (from the syringe), without any complaints. The test did not show any blockages or specific problems. So, we now have an Endoscopy (scope down her throat) scheduled for tomorrow morning at 9:45. Hopefully we will know more after that. We don't know whether they will find anything or not or whether if they find anything if there will be any treatment that can be done. It is more than likely from the Radiation, but we don't know for sure.

Rebekah's throat/swallowing issue reminds us of Josh and the issues he is dealing with. He is scheduled for another "stretching" tomorrow. Maybe we will see him. Please keep him in your prayers, too.

Grandpa arrived just after we went down for the procedure, but was able to wait until we got back to the room so Rebekah could see him. Grandpa drew her a picture and she appreciated that. Grandma M and Sarah came by for a little while this evening, too. When Grandma got here, she asked if it was "Movie Night". It's pretty sad when Grandma knows that Tuesdays are Movie Nights and there is Popcorn, Candy and Pop - and a movie, too. We have been around here way to much when even Grandma know about "Movie Night".

Rebekah didn't get much nutrition today, since she was off it most of the day in preparation for the procedure and she'll need to be cut off at 3 am for tomorrow's procedure. But she has been gaining weight (Mommy is noticing it when she picks her up) and she's getting enough IV fluids to "maintain" her (and keep her peeing), so a lighter day is ok. We just don't want too many of them.

She is sleeping now and Mommy is going to head to bed soon, too. We are still hoping to go home tomorrow evening. So, please pray that we can go home tomorrow and that Rebekah and the rest of us are feeling well on Thanksgiving so that we can participate in the extended families' activities.

12 Shared:

At Wednesday, November 23, 2005 3:22:00 AM, Blogger Alison Left a thought...

WOW! What a day. We'll be praying that the scope goes well and shows just what it is that is causing the angel so much pain. Praying also for strength and patience for each of you.

At Wednesday, November 23, 2005 5:45:00 AM, Blogger CJ Left a thought...

Frances, you're going through so much right now. You need to be more gentle with yourself. I know that I don't always listen closely enough at the Dr.'s office and I haven't been in nearly as many as you have. The doctors need to be clearer - they deal with this all the time and they need to be reminded that not everyone understands everything.

At Wednesday, November 23, 2005 6:20:00 AM, Blogger Maechell Left a thought...

Coming out of lurkdom to offer a prayer. I have been following your story and root for you when things are good and pray for you when they are challenging. I hope all goes well with the scope. God Bless you and yours.

At Wednesday, November 23, 2005 7:22:00 AM, Anonymous Paul Laroche Left a thought...

Hi Rebekah and family
Just checking in to offer hugs and
support to you all.Always in my thoughts and prayers

At Wednesday, November 23, 2005 7:54:00 AM, Blogger Di Left a thought...

God bless all of you!

At Wednesday, November 23, 2005 9:29:00 AM, Blogger Katie Left a thought...

prayers for answers to the throat issues and for all things to work out for thanksgiving at home with family and friends

At Wednesday, November 23, 2005 9:58:00 AM, Anonymous Teresa Left a thought...

Asking God to continue blessing you for so much to be thankful for. I pray and hope for you to have an uneventful day so you can go home and have a wonderful Thanksgiving with your family tomorrow.

At Wednesday, November 23, 2005 10:29:00 AM, Blogger David Left a thought...

Shalom! may He who brought you this far continue to hold you in His loving arms and absorb your tiredness and your pain into His own self, the body of Christ worldwide. May the angels stand over you as you sleep and the guardians of your soul be mighty in fending off discouragement, despair and depression, the three evil sisters that our enemy sends round from time to time. In Jesus name we command them to be gone! Amen

At Wednesday, November 23, 2005 12:03:00 PM, Anonymous Chris Left a thought...

Hope the scope will bring some answers..

Have a Happy Thanksgiving!!

: ) Chris

At Wednesday, November 23, 2005 12:04:00 PM, Blogger JodiTucker Left a thought...

praying for you....with love from OH, Jodi

At Wednesday, November 23, 2005 1:50:00 PM, Blogger Deb Left a thought...

Hello! I say "ditto" to the comments from cj --Frances, go easy on yourself. I can't even imagine all the stress you're going through --and all the things you have to deal with and remember. I don't know that I could carry myself with as much grace as you have. You are indeed one of the best Moms in the world!
And...I believe that nothing in this world happens by "accident". The steps of the righteous are ordered of the Lord. There was a reason why the test was cancelled and rescheduled --even if it was something as minor as perhaps the technician administering the test was better suited to deal with Rebekah's personality and perhaps that technician was only available during the rescheduled timeslot. We don't always know why things happen the way they do --but God is still on the throne --allow Him to do the "scheduling".

Praying continually that the Lord will give you all that you need for all the days ahead....

In Him,

At Wednesday, November 23, 2005 3:06:00 PM, Blogger Corry Left a thought...

We wish you a very blessed and Happy Thanksgiving!

God's Grace.


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