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.

Tuesday, July 25, 2006

Crazy Days

We have been running ragged. Rebekah has in school 3 days a week for the last 2 weeks as well as this week. In addition to school, we've been doing Speech Therapy and Horse Riding Therapy and trying to work on PT and OT activities at home. Then, we've been working with insurance on additional therapy dollars and understanding what has been approved as well as looking at other possibilities for services such as Shriner's hospital. It seems like taking care of Rebekah and her needs is more than a full time job and I still have Sarah and a house to run in addition to trying to help Daddy out.

We have had another heat spell. Finally, today wasn't so bad - it only got up to about 90 today. We've had 4 days with temperatures higher than 100 degrees. Friday, our thermometer said 112 and Sunday it read 109. Mommy and the girls spent a few nights in the camping trailer, since it has air conditioning. That made it much more comfortable for sleeping, but didn't help Mommy get anything done around the house.

Wednesday (tomorrow), Rebekah has an appointment with a dietician to look at her nutritional requirements and help us get there. Meanwhile, over the last week or so Rebekah has not been eating well at all. I don't know if it is the heat, or if there is something else going on. So, I'm a bit concerned. Wish I had all the answers. She has been drinking the juices and doing pretty well with it. She still isn't getting enough calories.

Rebekah's 6 month MRI is scheduled for next Friday August 4th. Hopefully, we will be able to get her Panorex and Chest Xray done earlier that week. Then we have our clinic appointment the following Tuesday. Please pray for clear scans.

Next Wednesday, Rebekah has an eye appointment to have a look at the issues that her developmental specialist noted. I don't know what that will bring, but we'll take it a day at a time.

In some ways, life seems so normal and then in other ways it seems so NOT normal.


Saturday, July 15, 2006


Think up the captions yourself:


Friday, July 14, 2006

Out In The Trailer

Here we are again at the NAFA (Northwest Adoptive Families Association) campout. NAFA is an organization that daddy works with a lot and who has supported us A LOT during the last year. It was this campout last year that was the only time we got to "camp" in the trailer anywhere but the hospital. And it was this campout last year that we left from, going straight to the hospital Sunday afternoon and starting radiation Monday at 6am. A year ago. Wow, it only seems like yesterday. So much has happened in the last year.

It was a tough decision on what to do this weekend. We have always (4-5 years anyway) come to this campout. But then this weekend we also have a family reunion happening up in Washington that we are missing, Grandma M is camping somewhere else in Washington and wanted us to come, and we had a wedding of a friend to go to. When it came down to it, however, this was going to be play time for the girls and given how much NAFA has supported us it only seemed right. We make homemade donuts every year and they are greatly adored. This year we will make about 200.

We came to camp Thursday evening and Friday daddy had to go take off a couple of hours away to place a newborn baby. Mommy and Rebekah and Sarah got to spend all day at the campground. The rode bikes (with the girls in a trailer), played on the swings, ate junk food, pulled a wagon and generally had a good time. THIS is what girls are supposed to be doing. It's weird to be normal again and we are loving every minute of it right now. Tonight there was a hotdog roast and all the kids were running around playing with other kids. It was neat to see.

Hopefully tomorrow or the next day we will have some pictures. Praise God for good times; life is good; my girls are good; I am happy.


Tuesday, July 11, 2006

A Couple of Pictures

Thank you guys so much for the comments on the Desitin! We are really really glad that you find it so amusing :)

Yes, it is delightful to have our girls acting like normal little ones. But admittedly it is juxtaposed with the ongoing issues. It's weird to have some things be so normal and others so not.

Here are some pictures of the girls playing in their playroom this weekend. The one of Rebekah alone is one of the best examples that we have that shows the current effects of the radiation (one eye larger than the other and the lack of hair on that side). The one of Sarah and Rebekah is so cute - that "wagon" was a gift from the hospital staff at Rebekah's End of Chemo party gets SO much use trying to pull/push each other around.


Sunday, July 09, 2006

One of Those Days

It has been one of those days. It started with Mommy having a headache and lots of things to do today. That meant that Mommy's patience were limited and the girls were testing her patience pretty much all day long. Daddy was planning to get some work done today, but after taking care of a few things outside (which also needed done) just wasn't in the mood to focus on work.

Daddy set the sprinkler up to water the grass. He was very careful to make sure that it wasn't getting into the window when he got it set up. Well, something changed and it started spraying into the window and got all over Mommy and Daddy's bed soaking bedding, the floor and all the stuff on the headboard. Ugh! Not a pretty sight. Neither Mommy or Daddy were happy campers.

Mommy's family came out this evening to celebrate Mommy's and Grandma M's birthdays. It was a great meal (thanks Uncle Chuck and Aunt Molly) and enjoyable visit. Grandma M helped get the girls into bed and then headed home.

They were still making noise a few minutes later, so Daddy went in to check on them. Rebekah was sitting up in her bed and Sarah was dashing accross the room to climb back into her bed. The wipe container was empty on the floor and wipes were everywhere (Mommy had filled it up earlier in the day) and Rebekah's bed was quite wet from the wipes. It is hard to get a clear picture of what happened, but both Rebekah and Sarah said that it was Sarah who had gotten the wipes out and made the mess. Daddy had told Rebekah to ignore whatever Sarah did and go to sleep. We had to modify that to explain that she could tell Sarah NO and call for Mommy or Daddy to HELP. We got Rebekah's fitted sheet changed, the wipes put up on the shelf above the changing table and both girls back into bed.

A few minutes later, we were hearing more noise from their bedroom and checked in on them. Rebekah was laying on the changing table (dresser) without pj bottoms or diaper covered neck to toes in desetin with a tube of desetin in her hands. The baby dolls that the girls had gone to bed with were covered in desetin as well as all the bedding, two of the three dressers, the floor and Sarah's hands and pjs. Daddy put Rebekah in the bath while Mommy worked on cleaning up the mess. The girls got new sheets and no blankets. Rebekah got pjs that will probably be a little difficult for her to get herself out of. Everything left on the shelf came down (and out of the room) as well as the stack of blankets on Sarah's dresser. Now Mommy has laundry to work on tonight. Desetin can stain pretty easily, so they need to be cleaned quickly. Unfortunately, there are several loads of desetin soaked laundry to do.

Sorry that it has been so long since we posted. We have been keeping pretty busy.

We took a long weekend (over the 4th) and went camping at the beach with friends Pat and Steve and their friends Mark and Roxanne. We had a good time. Steve did some fabulous cooking and we had mostly group meals which was great. We missed camping with Mom's family, but it sounds like they had a great time, too!

We continue to encourage Rebekah to eat. We got our "trial" box of juices and took them with us camping. After using several of them and having Rebekah wanting juice and asking for juice, we discovered that they were expired. Oops! Called the home health company only to find out that they don't have any more (they had gotten the box they sent from another branch) and the product is on manufacturer back order. Ugh! She will drink the banana cream pediasure periodically, but it takes a lot of encouragement from us to get her to drink it.

This week, we had an appointment with a Developmental Specialist - Dr. Raddish - one Rebekah had seen before her cancer diagnosis. All in all, it was a good meeting. I had been debating whether to continue to use this specialist or start using one at Emanuel (where Rebekah's cancer treatments were and follow ups are). I had seen one of Emanuel's specialists and was debating in my mind. After the appointment this week, I'm inclined to stay with the specialist she has seen before. She is much more proactive and really seems to be looking at the broad picture for Rebekah.

Dr. Raddish is a bit concerned about Rebekah's diet and some deficiencies in it - especially iron. So we need to put her on a vitamin supplement and hopefully get her in to see a dietician so that we can look at her diet and make adjustments as necessary.

Dr. Raddish had some thoughts about Speech Therapy and will contact our Speech Therapist to discuss them. Meanwhile, she also suggested that we investigate some other options for "free" speech services through Shriner's Hospital and Scottish Rite. In addition, we may look at adaptive assistance (having a device that Rebekah can use to "speak" for her). There is some thought that Rebekah's mind knows what she wants to say, but she can't tell her mouth how to say it. The adaptive device could help her so that she doesn't get frustrated with not being able to say what she wants. So, we'll investigate those options.

I know there is probably more to tell, but I don't know what right now.