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.

Sunday, April 20, 2008

Girls are on Antibiotics

Both Rebekah and Sarah are on antibiotics. Rebekah started them on Friday and Sarah today. They have both had a cough for a couple of weeks that just hasn't gone away. Thursday afternoon we got a notice from Rebekah's school saying that there had been some possible cases of whooping cough at school. I didn't really think that what either of the girls had was whooping cough, but it did get me thinking. Friday, Rebekah woke up with diarrhea. I decided to take them both in.

No whooping cough for either of them. Rebekah has a sinus infection - not uncommon for her. So doc started her on antibiotics. Sarah's lungs sounded good and her ears looked good and her nose was running clear. Doc gave me a prescription for Sarah in case she got worse - fever, etc...

Last night, Sarah started in with fevers - nearly 102. Rebekah hasn't had a fever and has pretty much been acting "normal". It doesn't seem like it is getting her down. Sarah, on the other hand, has been pretty emotional and very clingy. She has periodically asked for an icky tummy bin. Tonight was the first time she has actually needed it. As she was walking to bed she got sick and after being in bed for about an hour she was sick again. I'm hoping that she will start to feel better quickly, now that we've started the antibiotics.

Rebekah's diarrhea lasted all day Friday. That made life interesting with a Pediatrician appointment and an eye appointment. We had to take lots of changes of clothes and pullups. But we survived it. I figured it was only going to get worse after starting her on antibiotics, but so far Friday was the only day of it and she has been doing ok since. She is drinking some Dora drinkable yogurt, so that should help.

Saturday, we got to go to OMSI (Oregon Museum of Science and Industry) thanks to Candlelighters. I wasn't sure we would be able to go based on how the girls were doing Friday, but we decided to go anyway and hope for the best. Daddy had an appointment, so he wasn't able to come with us, but we were able to talk Grandma into taking his place. The girls had fun! They got to plant sunflower seeds and each got to bring a tree home. We will have some fun getting those planted and watching them grow.

A couple weeks ago, we planted some seeds (thanks Shawn!) in planter boxes so we can watch them grow. So far we haven't seen any results, but we check on them every day. We bought some hanging baskets and starter plants and we are watching them grow, too. With them being in boxes and baskets, we can watch them at the rental house and take them with us to the "all better house". Sarah says it is the "all better house" and Rebekah says it is now the "two booboo house". Haven't found out what the two booboos are, but it is getting better.

Rebekah's eye appointment went well. She is now seeing at 20/70 in the "bad" eye. She is doing a great job of wearing her glasses and a fair job of wearing the patch. We have one more week of drops and then I think we'll be done with those. Doc decided to wait on updating the eye glass prescription. Her vision is still changing and he thought it would be better to wait. Her next appointment is in two months. Meanwhile, we should be working on wearing the patch for two hours a day - an increase from 1 hour of a day. Little by little, we'll get there.

One day at a time... Thanks for caring for us and praying for us. We appreciate it!


Monday, April 14, 2008

Rebekah's Eye and Sarah's Hair

Time just flies by...

After two weeks of wearing a metal shield over her eye to protect it after surgery, she is now able to be without it. She has been doing a good job of not rubbing it. We got her glasses back while she was still wearing the shield. They have a little correction for the good eye and nothing right now for the bad eye. We have a follow up appointment this Friday and hopefully we'll be able to get a good eye exam and find out what kind of correction she needs and then have to get a new lense for the glasses. It took 2-3 weeks the first time and we hope it won't take so long the second time.

Meanwhile, we are trying to patch the good eye for about an hour a day to exercise the bad eye. She is not a fan of the patching. It is a struggle to get her to keep it on. The patches we have are like big bandaids with sticky all around and a pad over the eye area. She can easily get her fingers underneath it and pull it off. Each day, it has taken at least two patches because she has either been so upset crying that the patch won't stick any more, or she just rips it off and crinkles it up so I can't put it back on. Usually after a little fuss and fight, I can get her to keep in on for a reasonable time. I haven't put the braces back on, but if I have to I will. And trying to keep the glasses on while having the patch on is difficult, too. But, at least we are having some success. We are supposed to start at about an hour a day and work up to two hours, so we're not doing too bad.

Generally speaking, Rebekah is doing a good job of wearing her glasses. She will take them off at times and I have to tell her she needs to wear them. Some times she will put them back on herself and other times I have to help her. But she is wearing them most of the time. It is hard to push the issue when the really aren't helping much to improve her eye sight. After we get the prescription changed, they should really help her. And they do help to protect the eye, which for Mom and Dad is an important reason to do it.

Sarah has been objecting (and that is an understatement) to having her hair brushed. It is a fight to get it done. So last week, she got a hair cut. Her first full hair cut (and not just the bangs). She was not real happy about going, but she handled it ok. We had it cut to shoulder length and now the curls are gone. It is sad to see them go, but she is a much happier camper now about brushing her hair. It is not without problems, but it doesn't take nearly as long now as it did before.

She came home saying her hair was like her sister's. Since then she's decided that her hair is like Dora's. In any event, she is happy with the haircut and that is what is important. For mom and dad, it is a little bittersweet. Rebekah's curls were taken from her by her cancer. And we had to take Sarah's curls away from her.

I think both girls are looking older...

Rebekah seems to have decided that the BooBoo house is all better. Now she is calling it the "BooBoo Better" house. She has not forgotten that she helped make it better by giving it medicine. The house is starting to come together and we can actually start visualizing being back in it.


Friday, April 04, 2008


...we know that you are all waiting with bated breath, as were we.

We received a phone call from the same doc that last week started things out with "its not good." Only this time he had surprise in his voice and said that multiple docs had looked at yesterday's scans and they can't find what they thought they saw last week. PRAISE GOD.

There are still some areas of concern but from the preliminary reading of the 9 pages of medical jargain that was just faxed to us, it looks like they are ongoing concern areas that have not changed drastically over time and that too is good news. After we get a more thorough reading of these reports we might have some more details.

We can't chalk this up to anything othe than prayer. Thank you all for continuing to lift us up.


Thursday, April 03, 2008

Here We Go Again

Right now we are sitting at a hospital that we have only been to one time before. It is very nice, not stark white but rather quite warm, and the staff is wonderful. Rebekah was just put under and we are in the cafeteria waiting for her to be done, about 2 hours or so. Then the long wait for results...


Tuesday, April 01, 2008

1 Week Eye Follow Up

Rebekah's eye looks like it is healing well. They did a vision test. Rebekah never cooperates real well with them, and today was no exception. But we did get her to semi-cooperate for a while before finally giving up. They showed her vision in the left eye (the one that had the surgery) as 20/100. It might have even tested better if she was willing to cooperate longer. Doc was really impressed with that good of vision this quickly after surgery. One thing it tells us is that her brain IS using that eye - which was a concern leading up to the surgery.

She still wants nothing to do with having the good eye covered with an eye patch. They try to do that for the eye exam. She really hasn't been willing to wear a patch since she started having such difficulty seeing out of the left eye. We will need to start patching the good eye in another week, so we'll have to work on that one - "selling" it to her. Meanwhile, she should continue to wear the shield for a total of two weeks - so until next Monday. If she is being really good about keeping hands away from her eye - not rubbing it and such - then she could have the shield off for some of the time. I think it is probably best to keep it on and keep it protected, but we may give short opportunities while well supervised to have it off. Once the shield is off, we start patching the good eye. Starting at 1 hour per day and moving up to two hours per day. Please pray that she will tolerate it.

We got a new set of drops that are just an anti-inflammatory (and no longer has the anti-biotic in it) for the next few weeks. We'll give it 4 times a day for this week (we were giving the other one every two hours while awake, so this is a decrease) and then next week will be every 3 hours and then every two hours...

Our next appointment is scheduled in two and a half weeks. I explained to doc about the Chest CT results and the upcoming scan and that we didn't know for sure how things would play out, so we might end up rescheduling and not get in quite when we should and that the eye issues may have to play a second seat to the other. One day at a time...

We talked last night about having to get up early and go see the eye doctor. Rebekah wanted to know if she was going to get "sleep booboo medicine" - that is what she calls the anesthesia medicine. Sarah wanted to know if it was a "skip breakfast" day - that is what we (the whole family) have to do when Rebekah has anesthesia. We explained that today would be just a doctor visit but in a few days we would have a skip breakfast/sleep booboo medicine day. And they were fine with that. How many kids do you know who would ask that kind of question when talking about seeing the doctor?

Meanwhile, we wait for the Pet scan. We are on pins and needles. It is difficult to plan anything right now. We hope and pray for the best and yet know it could be the worst. It is a terrible feeling.