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, February 08, 2006



Wednesday Morning

Oliver is heavy on our hearts today. He is having some tests today that will determine the course of his treatment. What they really need is prayers that the tests show he is in Remission. So, please pray for Remission for little Oliver.

I spent some time yesterday trying to see if I could find an ENT on our insurance who could come to Emanuel Thursday while Rebekah is sedated and remove the wax from her left ear. Our Case Manager (with the insurance company) had given me two names of ENTs who work with Pediatrics that are on the plan. I called them both. One is out of the country until the first part of March and the other is not active on the plan until the end of February and is booked anyway. Ugh. Our Oncologist said he would see what he, himself, can do about the wax Thursday during the sedation. So I guess we'll have to wait and see.

We were able to get the Chest Xray done Monday, but Rebekah wouldn't cooperate for the Panorex. We will go in early on Thursday and hope to get the Panorex done first thing, when she will hopefully be more cooperative. If all goes well on Thursday, we will have the Panorex, Echo, EKG, MRI and then a Clinic Appointment. Another long day... Debbie will meet us early in the morning and pick Sarah up and keep her through Friday's test, too. Thanks again to Debbie and her family. At least Thursday night, Debbie's kids will get to see Sarah and get to play. It sounded like they were pretty upset that Debbie was going to have Sarah on Monday and they weren't even going to see her. I can hear the "Mom, can I please please please stay home from school" requests she must have received.

Rebekah is having constipation issues. I gave her a dose of Colace yesterday afternoon. We will keep a watch on that situation. No way of knowing, yet, if it has helped.

She continues to do well with the feeds during the day, but we still are not able to get it all in during the day, and I'm not pushing really hard at it. I'm kind of in a catch 22. Tonight (or tomorrow morning), she can't have any food after 4:30 am because of her sedation at 10:30 am. I don't really want her to be too hungry, so I kind of want her to have some food going into her stomach until close to 4:30. Then Thursday night, food has to be cut off at midnight. It is hard to listen to her ask for food or drink and not be able to give it to her. At the same time, I don't want to push to get all of her requirement in, if that is only going to mean that she throws up. It is always a fine line.

The last two mornings, Rebekah has woken up about 6:00am and not really gone back to sleep. I'm having to go in and check on her (and change her diaper and sheets) and then put her back to bed. Then she keeps wanting more and more things - cold water, owie medicine, lotion (yes we are still doing lotion for the owies on her tummy, legs and cheeks). Mommy is still pretty tired, but it is tough to do anything more than dose when she keeps making noise and requests.

This morning at about 7:00, I was in with Rebekah and could hear her sister moving around. Then it seemed as though the two girls were having a conversation. Sarah would babble and then Rebekah would babble and so on... They had been doing the same thing the night before after I'd put them both to bed. Kind of cute, but not what I wanted at that hour. Sisterly love!

10 Shared:

At Wednesday, February 08, 2006 1:21:00 PM, Blogger mommyguilt Left a thought...

As always, my prayers to you and the whole family, particularly Rebekah. I will keep my prayers going for Oliver also. I pray it is remission that they find.

Christina

 
At Wednesday, February 08, 2006 2:24:00 PM, Anonymous Anonymous Left a thought...

God Bless you all...and thank your dear God EVERY day for that precious little one! *smiles*

 
At Wednesday, February 08, 2006 4:32:00 PM, Blogger Sherpa Left a thought...

that sarah (and rebekah) is such a cutie.

 
At Wednesday, February 08, 2006 6:27:00 PM, Anonymous Molly Left a thought...

I just wanted you to know that you are always in my prayers. I've said a few wishes for Oliver today as well. May you both have good test results ... I'll keep you, as always, in my thoughts & prayers and wishes upon those sparkling stars.
warm strong hugs,

 
At Wednesday, February 08, 2006 7:01:00 PM, Blogger My Kid's Mom Left a thought...

Prayers from Ohio keep on coming your way. . .

 
At Thursday, February 09, 2006 5:25:00 AM, Blogger Danny Sims Left a thought...

And from Texas...

 
At Thursday, February 09, 2006 6:59:00 AM, Anonymous Teresa Left a thought...

Got caught up on the past few days. It is always a blessing to me, to read about the provisions and blessings God has done for you. Thank you God and thank you to the many people who are being a source of help to you.

 
At Thursday, February 09, 2006 8:58:00 AM, Blogger Tammy Left a thought...

I keep thinking about how much Rebekah goes through with all these tests, she is such a trooper. Then I go into my parent mode and wonder how you guys get through the worry and lack of sleep. God has his hand on this very courageous family! God bless you all!

I will pray for Oliver and his family too!

Much love and peace.

 
At Thursday, February 09, 2006 9:07:00 AM, Blogger Mike&Mari Left a thought...

Continuing to pray, and continuing to wait for all the tests to be done, and the results. We pray that all will be fine. I had wax removed from my ear, and that is painful, we pray that it can be done while Rebekah is sedated! We pray for remission for both Rebekah and Oliver! Love to all.

 
At Thursday, February 09, 2006 11:07:00 AM, Blogger Bar Bar A Left a thought...

I am very thankful that Danny Simms reminded me to pray for Rebekah today. I had not stopped by here for awhile but I do think and pray for each of you often. You are a brave and faithful family.

 

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