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.

Monday, March 31, 2008


Well, its not exactly "immediate" but we will have to deal with it. The PET scan that will hopefully give us some direction is scheduled for Thursday morning. Hopefully that gives enough time for some miraculous healing. Prayers for peace before then please.


Thank You For...

...all your wonderful outpouring of support. We can't tell you how much it has meant to us this weekend. It is still early Monday and we don't know anything more than we did Friday evening.

Thoughts have been pouring through our heads that we thought were gone. We want to share them and at the same time we want to put them out of our heads completely. February had been two years since the end of treatment and we finally had started to breath, letting our guard down a little bit. And now this, trudging up all sorts of things that a parent should never have to go through, let alone multiple times.

Rebekah is doing great and doesn't seem to have any clue or indication as to what might be going on. We hope and pray this can all pass as "some sort of mistake" or miraculous healing yet again.

Please grab on to your little ones and pay just a bit more attention to them today or this evening. For any one of us it could be the last time you ever get to.

As soon as we get any more results, test times or ??? we will let you know.


Friday, March 28, 2008

Not A Good Way... end the week.

In February they were supposed to have done a Head MRI and a Chest CT. They somehow got the orders mixed up and did a Head MRI and a Head CT - both were clear. We finally got the Chest CT made up today.

We were not home for too long when the oncology office started calling. The first time we did not get to the phone and they did not leave a message. Then they called again. Our doc, thankfully, was very much to the point. "We have a problem." he said. He went on. "Multiple 7-9mm 'tumor type' nodules visible in the lymph nodes and lungs."

Before calling us they had already talked with the surgeon. The surgeon won't cut into her without further tests as the areas are so "deep" that it is "going to do severe damage." He wants more confirmation tests on "what and where" he is going after.

Right now they are trying to schedule us for a CT/PET scan "as soon as possible" but it is now after 5:00 on Friday so we are pretty sure we won't hear anything until Monday.

It has definitely been a roller coaster week.


Wednesday, March 26, 2008

Doing Better

After fighting with Mommy, Rebekah finally fell asleep in Mommy's arms around 5pm Monday. Mommy asked Daddy to heat her up some dinner. That (maybe the smell, maybe the moving around a little) woke Rebekah up. She decided Mommy's dinner looked pretty good and she wanted some. She ate half of Mommy's and still wanted more. So, Daddy made us more and she ate a good portion of that, too! I guess after having not eaten all day, she was pretty hungry. By now, she wasn't fighting as much to get her eye patch off, but every now and then she was getting her fingers underneath and trying to pull it off. She needed to be watched carefully. We kept a close eye on her all night and finally (about 11pm) she told Mommy that she wanted to keep her patch on and help the doctor to take it off in the morning. After that, she did really well. Not only that, but SHE wanted to tell the doctor she was going to help and she didn't want Mommy telling him.

She did very well with leaving it alone for the rest of the time until the doctor's appointment. Once there, the nurse went to take it off and Rebekah wanted to help. The nurse (and Mommy - because Rebekah wanted Mommy to do it) did most of the work and Rebekah got to do the last little bit. That seemed to make her happy! She was not at all happy when she was told that she would need to have the shield put back on. After doc examined her, she didn't want the shield (metal cover with a bunch of little holes in it and a cloth around the edges - so that it is soft on the skin) put back on. She kept grabbing at it to pull it off. Not a good sign for being able to keep in on and this time Mommy was by herself with Rebekah.

That is when Doc told us about the "Elbow braces" they have to prevent kids from being able to bend their elbows and get their patches off. Doc was surprised I hadn't heard about them in Recovery the day before. That would have been nice. Anyway, we got a set for Rebekah and put them on her arms. She was not happy about it, but it made the ride home safe. I told her that once we got home, if she promised to keep her hands away from her eye, we could take the arms off and keep them off, but if she kept touching her eye or trying to take her patch off, the arms would need to go back on. Well the little bit of "lack of freedom" has been working. So far, she has done fine with keeping her patch on and not bothering it.

Every two hours (while we are awake), we have to take the patch off and put drops in her eye (anti-biotic/anti-inflamatory). I know she doesn't like having the tape removed, but she does a really good job of holding still and letting me do it. She isn't a big fan of the drops, either, but she is a trooper.

Just a little bit ago, while the patch was off, I covered the good eye and asked how many fingers I was holding up. She did a good job of answering correctly. Then she didn't want me to cover her eye, but she wanted to do it herself. This is big improvement from a week ago when she wouldn't let you cover her "good" eye and would make it very clear that she needed two eyes to see. She had a big smile on her face when she realized she could see with the bad eye. And then she said "me like surgery". Wow, what a statement from a little girl who has just been through all that trauma.

Sister Sarah came home yesterday evening and she's been doing a good job of staying away from Rebekah's eye, too. She wasn't too sure what to make of Rebekah when she first saw her. She wanted to know why Rebekah had a patch on her eye. We explained it to her and she seems to be fine with it (although she keeps asking "why, why, why" just like always). Just a few minutes ago, Sarah came running to Mommy saying "Mommy, we need you. Rebekah's eye patch is coming off". Rebekah was sitting still, arms away from her face. Once side of the patch had slipped out of the tape and the patch was hanging. Mommy put it back on and added another piece of tape to help. They are both being "big girls" about it and helping Mommy.

The shield needs to stay on until at least next Tuesday (our next appointment). And the drops are supposed to be for 10 days. Part of the healing process will include re-training the eye, so we'll need to patch the "good" eye again and make the bad eye do all the work. Pray that Rebekah will handle the patching and her brain can be re-trained to use the eye.

Thanks for the prayers, they have been helping. We know there is still a long road ahead for this process.


Monday, March 24, 2008

In Surgery Again

Rebekah is currently under anesthetic having her lens, cataract and what else? removed in her left eye from the radiation damage. This is a "new" hospital for us as we have only been here one time before and that was not a fun experience. This time was not perfect but much better. It is clear that this hospital is less "family friendly" and more set up like a typical surgery unit than we are used to. But we have some really good docs today and they were willing to do things out of the norm.

Update 3:55pm. We are home. And it has been very difficult. Kind of as a continuation of the above: The doc came out and talked to us about the surgery. What was done was not what he told us he was going to do but there were physical reasons for his choices and we can live with that. He told us the nurses would be out to get us very soon as it would be best if we were there with Rebekah when she woke up. 45 minutes later the nurses came out to get us - telling us Rebekah was "asking" for us. "Asking" was a complete understatement. We could hear her screaming from hundreds of feet and many rooms away. So much for being there with her when she woke up.

In large part because of the above, and also in part because of the big eye patch taped on her face, Rebekah has been severely traumatized. For 2 hours now she has been screaming at the top of her lungs, flailing and pinching/biting anyone that tries to hold her. She has to be in our arms constantly or she will rip her eye patch off. This goes on until she is worn out and she goes to sleep for a couple of minutes and then wakes up with it starting all over again. All she can say is "off" and "two eyes."

Mommy had to ride home in the back seat with her and keep a hold of her hands. Any free chance she gets she will go straight for the patch and tape on her face. It looks like mommy will not be leaving the couch for the next x hours... She is in the other room right now telling Rebekah "do not bite mommy, honey..." Obviously things are a bit hectic.

We were going to try and pick up the van (the windshield cracked on it last Friday) on the way home from the hospital but that couldn't happen as daddy had to stay driving and mommy had to hold Rebekah. Now the dealership is giving us grief over some of the repairs. Ugh.

Prayers and patience would be great about now.


Tuesday, March 18, 2008

Eye Surgery Next Week

Sorry, it has been so long since we updated... We've been busy. We (mommy and daddy) were able to get away for a few days thanks to our wonderful friends the Dunhams. Once again, they gave us their house in Sunriver for the long weekend and if that wasn't wonderful enough, they watched the girls for us while so we could get away just the two of us. It was very nice. We were able to visit with some friends/clients and just plain relax. Early in the week, we weren't sure if we were going to be able to go - too many things just trying to fall apart around us and we decided that we needed the break. Thank you, thank you, thank you to the Dunhams for making it happen. We are blessed to count you as friends!

Last week, we had Rebekah's appointment with the eye surgeon. He basically told us that she couldn't see anything out of her left eye because of the cataract. He had us look through some lenses to get an idea of what Rebekah's vision is in that eye. I couldn't see a thing. Then, he started into the details of the surgery... It is clear that she needs the surgery and so we scheduled it for as early as possible - the middle of April, but they were going to put us on a list to fill a cancellation. They called yesterday and asked if we can do it next Monday. That makes it the first day of Spring Break, which is really a good time. We weren't planning on going away as there is too much to do at the "booboo" house and just plain too much to do period. And this way, we can get her recovered a little bit before sending her back to school. It makes for a whirlwind to get ready for it, rescheduling other appointments and getting in to see the pediatrician to get "clearance" for the surgery, etc...

Thursday of this week, I'll have to take Rebekah out of school early to visit the Pediatrician. Monday of next week is the surgery. Tuesday a followup appointment. Wednesday, probably a stay home day. Thursday, speech therapy (if we don't decide to cancel) and then her hearing test. And Friday of next week is the Chest CT, so that we can know if her lungs are looking good. The following Monday back to school and Tuesday another followup (1 week) appointment for the eye surgery.

After the Surgery, Rebekah will need to wear eye glasses to correct her eye. We ordered glasses last week to see if she was going to cooperate with wearing them, but they won't be here until probably sometime next week. Then we'll probably need to send them back with a "new" prescription. The surgery removes her lens (cataracts are a clouding of the lens) and replaces it with a plastic lens that is what they expect her to need as an adult (age 12 and above). In the interim, she will need glasses to "correct" her vision. Long term, she will likely need bifocals or reading glasses.

Because her brain hasn't been able to use the "bad" eye for a while now, there is a possibility that she won't be able to re-train the brain to use the eye. Please pray for the surgery and for the recovery, especially that she will be able to re-train the brain. Also, because the eye has received a lot of radiation, it may not heal "normally". Please be diligent in praying that it will heal properly and there won't be any major complications.


Monday, March 03, 2008

Rebekah saw the Dermatologist

I was able to get an appointment last week with the dermatologist and get Rebekah in. He is NOT worried about what he sees. He says we should keep an eye on it and if it starts showing any of the warning signs then call him back and schedule an appointment. Otherwise, have her come back in two years. He took some photos of it, so they will have it well recorded and can keep a watch on it. That was good news.

We still need to get the CT scheduled. Next week, we have our appointment with the eye surgeon so we'll know more about the surgery after that.

There are just way too many things keeping us busy. Keep the prayers coming. We need to keep sane through all of this.