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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Tuesday, February 28, 2006



What a Day!

What a day today has been. It started with lots of potty problems. I woke up about 6 and needed to use “the facilities”. As I was finishing up, power went out, came back on and went right back out, so I found myself in the dark without running water. Ugh! Power stayed out for about 45 minutes, at which point the girls started waking up. When I went to get Rebekah up, she had soaked through in a major way, so I had to change her sheets.

After breakfast, the girls played for a little while in the playroom and then Sarah started to say she wanted to go night night and Rebekah said that she wanted tummy drinks. I put Sarah down in her crib and got Rebekah connected to her nutrition. Not much later, Sarah was fussing and she wasn’t stopping, so I went in to check on her. She had managed to get her pajamas off as well as her diaper and peed on the mattress. So, she got a new diaper, pajamas back on, new sheet and mattress pad and laid back down. She seemed to fall asleep. Rebekah wanted her tummy drinks stopped and wanted to go night night herself, so we took care of that.

When Sarah woke up from her nap, she was making quite a bit of noise. When I went to get her up, she had gotten her pajamas off, diaper off and peed on the mattress. She got a new diaper and then dressed for the day (including a onesie to try to help with the undressing). It sure makes me think that perhaps potty training should start happening quickly!

This afternoon Rebekah, Sarah and Mommy headed into town for a physical therapy evaluation. Rebekah did a pretty good job of cooperating with it. And she remembered so many of the things that were there – like the play kitchen and the balls. She has some foot issues, including tight hamstrings. The physical therapist is thinking that Rebekah could benefit from orthotics for her shoes. She was going to put a little more thought into it and find some resources for us and get back with us. Rebekah’s left side is weaker than her right side, so we will want to work on strengthening her left side. I will say, however, that this was true before cancer. Now that the cancer treatments are complete, we can focus on some of these other needs.

After the evaluation, we headed over to Grandma A’s school and dropped Sarah off with her so Mommy and Rebekah could go to the ENT’s office for an evaluation. The kids had left school for the day and it was almost time for Grandma A to leave as well, so it worked out well. Thanks Grandma A for watching Sarah – it was a great help.

We didn’t have any eminent concerns for the ENT, but wanted to get him involved in Rebekah’s care now, so that he could be monitoring her as well. He really didn’t see anything that needed work now, which was good. He did reiterate some of the “possible” side effects and issues that we may have to deal with such as hearing loss, growth differences between the right and the left side with the need for corrective surgeries, dental issues, etc… In addition, he mentioned several things that were either new or explained as potentially chronic problems such as ear wax buildup (he suggests that we put drops in her ears once or twice a week to avoid a buildup), rhinitis because of the damage to her sinuses (we’re already seeing lots of running nose/sneezing symptoms so we have her on Claritin), drying of the secretions in the nose (especially on the left side) and possible chronic issues with sinus infections.

He talked about how it is difficult to say what Rebekah’s needs will be or to even think about giving any sort of percentage of possibility of any specific side effect. Ewing’s Sarcoma is not very common in the face and not very common for children of Rebekah’s age, so it is not like he has seen many patients in Rebekah’s situation. He has, however, seen patients with chemo and radiation to the face. Some have had very little disfiguration and limited need for correction, while others have had great disfiguration and much need for correction. It is hard to say what Rebekah’s case will be, so we wait and see and deal with her issues. All in all, it seemed like a pretty positive appointment. He doesn’t need to see us again for a year, unless we have issues and want to see him. He would like to see us after Rebekah has her annual Audiology exam and other scans and he wants copies of those reports for his files.

Tomorrow, we have to be up early and head into the hospital for Rebekah’s kidney function test. Her nutrition has to be cut off at 2am, so that means Mommy will have to be up at 2 and then Mommy and Daddy will be up at 6 or so to get ready to go. Should be fun!

4 Shared:

At Wednesday, March 01, 2006 1:45:00 AM, Anonymous Anonymous Left a thought...

Good luck today! Lots of prayers for all of you. ~caron

 
At Wednesday, March 01, 2006 2:41:00 AM, Blogger jel Left a thought...

praying for a good day!
huggs
janice

 
At Wednesday, March 01, 2006 8:48:00 AM, Blogger Drea Left a thought...

Wow what a blog... I was online today looking around the blogging world while my 18 mo old napped... and I saw your link on my friends blog... I decided to check it out.
I had no idea what it was... it just looked interesting.

I was heartbroken by what I saw... I hate to see children suffer w/ sicknesses... but at the same time it really humbled me and convicted me.
I have a healthy boy named Caleb... he has never had any health issues beside a common cold.
The past two weeks he has been fighting off an awful infection in his ears, eyes and sinus area. He has been on Antibiotics for over a week now and he is still sick. Lots of crying... lots of bad tempermental behavior... not eating well... etc...

I have been so frustrated with him though because his illness has been making it hard on me as well. With him not sleeping well and always grabbing on my leg throughout the day as I try to clean things.. or fix dinner... I have been short with him... and unfair I think.

And reading through your blog just made me realize how selfish I have been...
Its not easy when kids are sick... but being Calebs mom I should be patient with him... and be the one person who loves him and comforts him no matter how mean and fiesty he can be.


Any how. I loved your blog... I plan to add its link to my blog ... and I am going to look into ordering some of those bands off the helprebekah site. I might even get our students (my husbands a youth pastor) to read your blog and invest in some as well.

You and your family will be in our prayers..

 
At Wednesday, March 01, 2006 11:51:00 AM, Blogger Dawn Left a thought...

Praying for you guys always!

 

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