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, February 24, 2007



The Testing and Waiting Continues...

Friday, we finished the tests and now we wait until Wednesday for our follow up appointment. Tumor Board meets Tuesday morning and will discuss the scans and we really don't like to get "preliminary" reports. We tend to prefer to wait until they've met and had a chance to look at the scans and determine what they see. Tuesday didn't work real well for us, so we went for Wednesday afternoon.

This morning was Rebekah's last dose of antibiotic. Sarah still has a few more days to go. Rebekah seems to be doing better. I'm not so sure about Sarah. She definitely still needs the cough medicine or as she calls it "cough booboo medicine". This morning as they were sitting on the potties, Sarah started coughing and gagging and threw up some mucus. It wasn't much, but my guess is that she needed to get it out of her throat. After that, she was hungry for breakfast and has been fine since.

Yesterday, Grandma C came out and watched Sarah while Mommy took Rebekah to the hospital for more tests.

First we went to Audiology. Rebekah did a good job of "participating" in the exam. The first thing that she did was a test with a probe in the left ear that produced tones and monitored for response. After the left ear, she did the same test on the right ear. Both ears tested within the normal range. Then, we headed into the sound booth to do more testing. Rebekah didn't do real well with the tones. She was supposed to put a stick in the bucket when she heard the tone, but she didn't seem to understand what she was supposed to do. We switched to voice and she did great with that. Then she put headphones on and did more of the same. This time the audiologist could test each ear separately. She did really well.

Her results were even better than last year. Although, I will say that last year was tough because she really wouldn't cooperate. Last year, she had so much wax in her ear that they had to try to remove it before they could even try to get accurate results and they ended up doing the "probe in the ear" test while she was under anesthesia last year. Part of the reason for better results this year is due to not being under anesthesia and part of it is Rebekah's growth.

The audiologist wanted to caution us that because of the chemotherapy drugs that Rebekah was given, her ears are more succeptible to damage from loud noises such as from a jackhammer, chainsaw or similar - even a hair blow dryer. So we need to be careful about such exposures and keep her ears protected from such things.

After the hearing test, we took a quick tour through the ward where we spent most of our time looking for nurses we knew to say hi. The wards are now locked and you have to use the intercom to get in. What a change! Anyway, we saw a couple of nurses we recognized but never had us and didn't see any of our regulars. I don't know if it was just one of those days, or if there has been a lot of staff change in the year since we've been inpatient. It is amazing to think that we've actually had a year without a hospital stay! Woohoo!

Then we headed downstairs to check in for the rest of the tests. I thought we were scheduled for an Echo, an EKG and a Panorex. They only had us scheduled for Echo. The Panorex machine is down until mid-March because they are renovating the room and we weren't due for an EKG (which is what I thought orignally, but someone said we were scheduled for one). While Mommy was checking us in, Rebekah was making friends with a 4 month old baby. He would drop his toy (which he never really had a good grasp on) and she would pick it back up and give it to him. It was really pretty cute to watch. After getting checked in, we headed up to the second floor to wait for the Echo.

The Echo Tech came down and got us. Rebekah was being very helpful until it was time to lay flat on the bed. Then she didn't want anything to do with it. We tried a few things and finally, Mommy laid down with her and she cooperated mostly - as long as she got to help with the probe. She didn't like having the gel on her and would get a cloth and wipe it off often. The Echo Tech said he didn't see anything that jumped out at him as a problem, but the cardiologist would look at it. I figure that is still pretty good news, at least better than the Tech being concerned.

We headed downstairs to get a berry smoothie, since she had done so well. After all, she cooperated and they were able to get the tests done. As we were leaving, she said she needed to go potty. We hadn't been able to get a urine sample the day before, so we headed up to clinic to use their potty and get them a sample. Rebekah did a great job of waiting until we were ready and then providing the sample.

She is really funny. The plastic catch that is put in the toilet to catch the urine is called a hat. I don't know why, but that is what it is called. Rebekah pats her head to say "hat" whether she is talking about the type she wears on her head or the type that goes in the potty. If she sees to potty hat, she starts patting her head to say hat. She remembers that is what they are called (even though she only uses them once a quarter). She really does remember a lot.

Rebekah's hair is getting longer (the hair that she has anyway). She really needs a haircut, but I haven't figured out what to do and so I haven't done anything. One more thing for the "to do" list.

Well, the girls are waking up from their nap, so I better post this before they get too noisy and I never get it posted.

2 Shared:

At Sunday, February 25, 2007 8:09:00 AM, Anonymous Teresa M. Left a thought...

Good Morning, and I mean Good. Great is our God that all we have is good. To see the Glory of all that He has done for Rebekah is a testimony of answered prayer. I believe that the witnessing of His power at work within Rebekah and in your family will continue to manifest itself. Glory Hallelujah!!
What an exciting Easter Season I claim for you all.

 
At Sunday, February 25, 2007 6:37:00 PM, Blogger My Kid's Mom Left a thought...

Prayers abound for good results. A year has passed since you found out she was cancer free??? Wow!

God is good.

 

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