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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Thursday, June 26, 2008



Scan Results, Eye Glasses and Big Girls!

The very short story is that there does not appear to be any recurrence of the cancer. For that we are thankful. As always there are some questions that we don't have the answers to. When you scan a kiddo this often, there are bound to be changes. Some are expected and some spark questions. The questions may mean another scan or they may mean wait and see.

The good news is that the spots in the lungs and lymph nodes that were seen in March and then not seen on the Pet/CT done a week later “are no longer seen.” Also, there are no signs of cancer in the mandible (jaw) where the tumor was originally located. The blood counts all look good. These are all good things!

Now for things that are “stable” – enlarged lymph node in the right neck, mucosal thickening in the paranasal sinuses, opacification of the left mastoids.

Now to the questions - according to the radiology report, there is a linear collection of cysts in the left temporal lobe (of the brain). These have grown in size and are “significantly more prominent than they were in February”. The February radiology reports indicate that they were similar to previous scans. “The etiology and nature of these cysts is not known.” The thought is that these are from the radiation, so doc is suggesting a wait and see approach. The next scans will be in August.

Also noted on the radiology reports, “there is some atrophy of the left parotid gland” and “there is also some atrophy of the left submandibular gland.” These are both salivary glands. We knew that they would likely be damaged by the radiation and that saliva production might be reduced. So this is not unexpected news.

Now what? We breathe a little sigh of relief and we wait for the next round of scans. We pray that the cysts are indeed nothing to be concerned about. And we love our girls and enjoy every day with them.

Both Rebekah and Sarah have been wearing big girl underwear most days, although they are still in pullups at night. We are having some days without any accidents. Both girls had been accident free for 4 days, so we took them to Dairy Queen for ice cream treats to celebrate. Yesterday was not a good day for Sarah, so today she wore a pullup. She did really good at keeping it dry and clean, until the end of the day. Rebekah had an accident today while playing outside, but she has been really good otherwise.

Rebekah started summer school this week and has been able to go to school in big girl underwear and keep them dry at school. What a big girl she is!

Last Friday Rebekah had a follow up with the eye surgeon. He is pleased with the results he is seeing. Rebekah is seeing at 20/50 in the left eye (compared to 20/100 just after surgery and not being able to see before the surgery). He gave us a prescription for eye glasses. Her left eye will have a bifocal and the right eye will have no correction. They will also have transitions lenses so that they will darken when she goes outside. That will help to protect her eyes from the sun as well. And we continue to patch the right eye every day for about two hours. She is not a fan of that - always saying "eye patch later". But once it is on, she will often soon forget about it.

We weren't sure how well she would take to wearing glasses, but they have become part of who she is. Now we are working on getting new glasses for her with the new prescription.

We still have lots of boxes that need unpacked and dealt with. Little by little things are coming together. It just doesn’t seem like it is happening quickly enough. Hopefully we can get a lot done between now and next weekend when we are having a gathering at our house.

7 Shared:

At Friday, June 27, 2008 8:12:00 AM, Blogger Debbie Left a thought...

Such good news! I will let my kids know; they've been waiting to hear. Hugs to Rebekah and Sarah from all of us!

 
At Friday, June 27, 2008 8:55:00 AM, Anonymous aunt annie Left a thought...

So glad to her the good news about Rebekah. Hugs to you all.

 
At Friday, June 27, 2008 6:17:00 PM, OpenID eva-marie Left a thought...

So glad to hear it appears to have been a false alarm.

 
At Monday, June 30, 2008 10:27:00 PM, Blogger Deb Left a thought...

I shared Rebekah's story with a coworker this evening. She was blown away by God's goodness!

Rebekah --touching lives - again - those whom she probably will never meet this side of heaven!

I'm thrilled to hear the good news and as always, am praying for you daily! Those cysts...nothing that God can't handle!!

 
At Tuesday, July 01, 2008 8:34:00 PM, Blogger Donetta Left a thought...

such good news. They grow up so fast. before you know it they will be all day dry. Everyone told me to rest that they will be in big girl pants before college. :)

 
At Tuesday, July 29, 2008 2:44:00 PM, Blogger Robyn Left a thought...

It's not like you to go more than a month without blogging, I'm just checking in from the blog world. Please give us an update when you get the chance!

 
At Tuesday, July 29, 2008 9:13:00 PM, Anonymous Darlene Left a thought...

We continue to pray for Rebekah's increased vision strength. We hope you're more settled in at home and enjoying the summer.

 

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