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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Monday, November 03, 2008



Leg Pain, Eye Trouble, Scans, Caitlin

We have had an interesting couple of weeks. Two weeks ago, Sarah started to complain about her legs hurting. For about a week, some time during the day she would stop, scream in pain and refuse to go on. Some days it was morning and others it was afternoon. She didn't complain at school and her only complaints were to mom. A few minutes after her complaint, she was acting fine and running around like normal. At first, I thought maybe she was suffering from "growing pains", but after searching online her symptoms didn't match the typical growing pains symptoms. Other possibilities that came to mind were bone tumor, bone marrow issues like leukemia or lymphoma, juvenile rheumatoid arthritis, etc...

After a week of complaints, we decided that she needed to be seen by the doctor and since her doc wasn't available scheduled her with another pediatrician in the office. This was a week ago Friday. The physical exam was "normal" which is a good thing. We were given the option of running some additional tests - bloodwork and/or xrays of the legs. We decided that it made sense to do both. We got the bloodwork back the same day and it all looked fine. We had to wait until Monday for results of the xrays and they looked fine as well. So it is hard to know what was going on. The good news, though, is that she hasn't complained since Saturday the 25th. It seems that whatever was causing the problems may have resolved itself. At least that is what we are thinking right now. If the symptoms return, we'll have to look at further testing.

Mommy is on an email list of people affected by Ewing's Sarcoma. When she posted some of the details about Sarah's complaints, several people wrote back saying that those symptoms were similar to their child/grandchild who had a tumor on their spine. So that is something we will have to think about, too.

At the same time, Rebekah's left eye (the one that had the cataract surgery back in March) was getting red, irritated, having more discharge, and then became tender. When it started getting red, we started using more drops and gel. That didn't solve the issues. We called the doc and basically got the keep an eye on it, keep up with the drops & gel and call back if it gets worse. Well it got worse, so I called last Tuesday to schedule an appointment. Her doc wasn't in on Tuesday, but we were able to get her fit in on Wednesday.

About 2pm Tuesday, we got a call from one of the technicians asking more questions. She checked with one of the other docs and decided that Rebekah should be seen Tuesday and not wait until the next day. So I picked Rebekah up early from school and we headed into the eye doctor with Sarah in tow. Doc didn't find any "serious" problems, but the eye was definitely dry. She didn't see any infection, but gave a prescription for an antibiotic eye drop just in case (4 times per day for 1 week). And suggested that we put eye drops in the eye every 2 hours with gel at night and even before heading off to school. So we've been doing that and it does seem to be improving.

Rebekah will probably have to deal with dry eye issues for the rest of her life. She often has severe issues. The gland that produces tears for the left eye has been damaged and probably doesn't produce the tears that it should. The tear duct on the left eye that should carry tears away is constricted and leads to nowhere because the ducting has been destroyed by the radiation she received. This means that tears often run down Rebekah's cheek. She looks like she's crying, but it is the only way that her eye has to get rid of the tears.

November is Scan month. We have Rebekah's MRI Scheduled for Veteran's Day - Tuesday the 11th. Doc has been pushing to move away from doing Chest CT's every time and we have agreed to do a Chest Xray instead of the CT this time. So some time, we need to get her in for a Chest Xray and the Panorex (picture of teeth). We might take her in early on the 11th and try to get them done then.

Meanwhile, it means that anxiety is a little higher than normal. Some of Mommy's Ewing's friends call it scanxiety. In reality, what is is and no amount of worry will change it. So, please pray for us as we wait. It doesn't help to be dealing with eye issues and leg pains in the meanwhile...

Last, but certainly not least, please pray for Caitlin and her family. Caitlin is a 4 year old little girl who was just diagnosed with Leukemia (ALL). While we don't know her family personally, Caitlin attends preschool at the church where Mommy & Daddy were married and that we still consider a home church. While we don't attend there regularly, we do keep in touch and receive prayer chain emails. Our prayers go out to her and her family. This is never an easy road.

3 Shared:

At Friday, November 07, 2008 12:47:00 AM, Blogger Deb Left a thought...

....praying with you as you anticipate the upcoming scans.

...praying for NO scanxiety!

...praying and rebuking that thought about the spinal tumor!

...will rejoice at the good report when it comes!

 
At Sunday, November 09, 2008 8:45:00 AM, Anonymous Anonymous Left a thought...

Agreeing with you for confidence and trust from God that will cause all anxiety to flee and perfect peace to take its place. I ask God's angels to take charge about your home to keep it a place of refuge and demons will have to flee. Blessings of His grace and mercy to continue to abound for you all! Love,
Teresa Mathia

 
At Friday, November 14, 2008 7:06:00 PM, Anonymous Darlene Left a thought...

We continue to pray for you. In Christian's words, "Dear God, please keep the cancer away from Rebekah". Perfect peace comes from focusing our minds on God. May He grant it to you daily!

 

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