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.

Saturday, November 22, 2008

Enjoying a Break At Sunriver

Once again we have been very specially treated to a short trip away to an elegant vacation home in a little resort called Sunriver, about 4 hours from our house. Daddy had to come over here for a court hearing and we checked to see if this home was again available and sure enough it was.

Mommy Debbie and Daddy Brian (titles earned and adorned by taking care of Sarah for so many long months while Rebekah was in the hospital) have this beautiful home that they have repeatedly been willing to share with us. We try and do a little bit of cleaning up, working around the place, etc. to help "pay" for our keep but nothing could even approach the value of the gift of family time and relaxation that they have given to us. There is a picture of them together here and when the girls go by it they say what we are thinking: THANK YOU MOMMY DEBBIE AND DADDY BRIAN.

One of the "retreat" things they have here are lots and LOTS of bicycles. They even have one small one with training wheels on it so we took the opportunity to see how the girls would do with it. They have tried tricycles and big wheels before, but where we live there is very little pavement so practicing doesn't work too well.

Here is what we ended up with for Sarah (sorry for video from the cell phone, that is all we had):

Of course this is a very proud day for Mommy and Daddy to have their little girl on a bicycle on her own. Admittedly it is bittersweet as Rebekah could not do it. We worked with her for a long time today and she just doesn't have the coordination or strength to be able to peddle. This is true no matter how much we practiced with her, tried to do her feet with her/for her to help her to learn etc. We still have some high hopes that with a lot of therapy it might be something she can learn and we know that this is just one of those times that Rebekah is sharing with us that she is not going to be like "all other kids."

She really DOES like playing on the bikes/trikes, however. Even though it is too small for her she loved being on the tricycle and walking it around with her feet on the ground. And of course, anytime there are two "vehicles" in close proximity to each other there is going to be a crash:

And finally, you know it had to be coming... Yes, there was one really "good" crash for the day (can you tell Daddy is writing this post?):

But don't worry, Sarah came up the better for it and laughs when she watches this. Daddy would not let her quit right after this happened - got to get back on that "horse" or you never will.

While we were over here we also had some more conversations with the Tango people but the details of that will have to wait - but please keep this lifted up in prayer!


Sunday, November 16, 2008

Good News!

This past week has been full of good news. We found out Sunday evening (while looking at Saturday's mail) that insurance is going to help pay for the Tango - Rebekah's speech device. They will pay somewhere between $4,000 and $5,000 for the device. The device costs just over $7,000, so we'll need to figure out how to pay for the other $2,000-3,000. We're looking at our options.

Rebekah had her scans on Tuesday. We called clinic Wednesday for preliminary results and spoke with the nurse. She read and then faxed the radiology reports. The short story is that there are no signs of cancer, but there is continued (and even worsened) evidence of sinusitis. We will follow up with the Oncologist Thanksgiving week after tumor board has met to look at the scans, so we'll know more then.

Rebekah saw the eye doctor Thursday. Her eye is looking better. Doc did not see signs of dry eye, like we had two weeks ago. We are speculating that the issues of two weeks ago are probably related to dry eye. We need to continue to use gel and drops, but not as much as we have been. Mostly for symptoms.

Doc wanted to know if Rebekah was complaining about her eye - did she feel something was wrong. At least at the worst of it, she did complain and was rubbing it like it was bothering her. Doc said it was difficult to know, after radiation, how much feeling she might have. So the good news here, is that she seems to at least have some feeling.

Sarah has not had any screaming leg pains in more than two weeks now. I'm still waiting for it to come back, but thankful that it hasn't yet.

Rebekah was invited to one of her classmate's birthday party Friday night. It was a bowling party. Rebekah went and had some fun socializing with her friends, but she didn't want to stay for much of it. It was good to see the kids interacting with her. We met Grandma C at the Bowling alley before the party and sent Sarah home with her. When Rebekah was done with the party, Mommy & Rebekah headed to Grandma C & Grandpa's and the girls got to spend the night. They had lots of fun.


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.