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, April 20, 2010

Surgery Results

Rebekah got to come home a bit earlier than they were expecting, her surgery only lasting about two hours. In addition to the other work they did, they had planned on potentially pulling several of her baby teeth to make room for/encourage her adult teeth to come in and fill in some spacing. So the good news is that she didn't get some teeth pulled.

Unfortunately that is also the really bad news. They didn't pull the baby teeth because they are possibly the only teeth that Rebekah is ever going to have, at least of her own. The adult teeth behind them have no roots attached to them; if they came in now they would die. There is the slightest possibility that they could still grow roots, especially since Rebekah is on growth hormone but the doc really didn't hold open any chance of this actually happening.

We knew there was a chance that the radiation could have some effect on her teeth, but that was so low down on the list of things that could be affected that we were not really worrying about that. In addition to being low on the list, we also only thought there was a possibility of it affecting the left side but in reality it has affected every one of them. Rebekah is different in many ways, why shouldn't she be the only 8 year old we know with dentures?

The doc is going to be consulting with some other colleagues about some choices and then get back to us in a few weeks. We will go from there. Please pray that miracles happen, roots grow and she can actually have real teeth that work and can live.

I do VERY MUCH want to thank those of you who have donated to rebekah's trust. (See By some coincidence, or miracle as we recognize them, a single donor donated a HUGE amount that, combined with the several smaller donations just about covered the potential out of pocket costs of the surgery.

On a different note, A LOT got done on the bathroom remodel today. Here is how it looks after day one:

It really is beautiful. The floor and the wall hung counter top/sink will have the same tile on it.


Surgery Again

Rebekah is at the hospital undergoing oral surgery right now - mainly focussing on her teeth and the problems cause by radiation. Because they are actually doing cutting, breaking, etc. (stuff that causes pain) she is under a deeper anesthetic than she normally is for just scans so we will see how that plays out afterward.

This is the first surgery that daddy couldn't be at the hospital with her. This is the first time since radiation that she has undergone an anesthetic without going to sleep in daddy's arms and then waking up the same. Rebekah did not complain a bit when they put in the IV and she walked to the operating room happily holding the doctors hands.

Thank you Mommy Debbie for being there with mommy, Rebekah and Sarah. Pray for Rebekah to make it though everything just fine. Pray for the skill of the surgeon and anesthesiologist. Pray for mommy and daddy both to also make it through both the surgery, the recovery and then the coming afternoon difficulties at home.


Monday, April 19, 2010

The Blessings Of A Dishwasher (Dead Or Not)

On December 8th 2007 our house burned down and destroyed all of the appliances. Boo.

What a blessing though as we got a new house and new appliances. You know your life is boring when a new dishwasher makes you giddy - let alone a whole new set of appliances. Anyway, on April 28th 2008 we were able to buy the new appliances. Yay.

Jump ahead almost two years. On April 18th 2010, just a day ago, we woke up and the dishes were dirty even though it was supposed to have run the night before. And the lights on the control panel were flashing in an odd manner. It was broke - dead broke. Not quite two years is just not acceptable for an appliance that cost the insurance company A LOT of money. Especially when it comes with a one year warranty. Boo.

"Hey honey - how did we pay for that dishwasher?"
"Oh I don't know, let me go look... We put it on the mastercard."
"You mean the one that doubles the manufacturer's warranty?"
"Yah, that one."
"When did we get it?"
"Let me look, will be two years in 10 days."

A quick phone call to the credit card company and the warranty claim is made and the repair company will be coming out to fix/replace it on Thursday! Gotta love extended warranties. I know Dave Ramsey isn't a fan of them but in this case I have to say how great it was to have purchased the appliances on a credit card! YAY!!!!!

The only bad here - having to do dishes by hand until it gets fixed. Boo.


Sunday, April 18, 2010

A Successful Work Day

Wow we had one good day yesterday! We had around 25 people here and got SO much done. Daddy sat up Friday night typing up a "wish list" of all the things we would want to get done in a perfect world. It was about a full page single spaced type - and it all got done. Okay, everything but fertilizing the lawn and it really wasn't the right weather for that. AND we got lots done that wasn't even on the list. In fact, we got so much done that daddy just received a phone call from a small group of people that wanted to come help as a group and he couldn't come up with anything for them right now!

This is not to suggest that we don't have ongoing daily needs, but it is a great weight off our shoulders to have the big ticket items done. Ongoing needs include lawn mowing, general house keeping (laundry, dishes, cleaning, etc. ) as well as the most critical need - someone to be with mommy when daddy cannot. She generally cannot go places alone and cannot be alone (without adult help) in the house. Bathing, dressing, toileting, meal making, shopping, etc. all provide hurdles that mommy just can't always overcome alone.

Back to the work day. Everyone that was here yesterday contributed something really awesome. The one thing that stands out the most in my mind right now is Jeremy driving the tractor with a front end loader and tiller. He did the garden with the tiller and then spread an entire unit (7.5 cubic yards) of bark dust using the front end loader. If you have ever run a front end loader you know that it is nothing something you can teach someone to do without a lot of practice. Jeremy was a natural and learned it really REALLY quick! And he had SO much fun doing it.

The main that that we wanted to get done was gut the bathroom and get it ready for rebuilding handicapped accesible. We are tiling wall to wall and just about floor to ceiling on 3 of the 4 walls. Basically it will be one huge shower with a toilet and wall mounted sink that mommy can get under in her wheelchair. We will also have grab bars just about all the way around the permiter. Putting in a wall mounted sink/counter and all the grab bars requires a lot of planning and adding additional support in the walls. THANK YOU SO MUCH TO JIM POWELL FOR HIS PLANNING, ASSISTANCE AND FOR PRETTY MUCH DOING ALL OF THE WORK!

Here is how the bathroom looks right now waiting on the tile guy (brought to us by Jim!) and for Steve Jackson (the contractor building the countertop/sink mount) to come do their magic:

Bitter sweet is that this is part of the house that was completely rebuilt brand new after the fire 2 years ago. Will post pictures of the final product when done. And who knows, maybe even some mid project pics?

Finally I will close with an update on Rebekah. She goes to the hospital Tuesday morning (at 5:30AM!) for oral surgery. As expected, she is having some problems with her teeth cause by the radiation. They are working on cavities, potentially pulling some teeth and trying to seal the others; most of the enamel being damaged. She will be under a full anesthetic at her favorite hospital for all of the work. Thank you to Mommy Debbie for coming and helping as daddy will not be able to be there - needing to be back at the house with the contractors. It will be the first surgery/major event that daddy has not been there for and that is bothering him greatly.


Friday, April 16, 2010

Tomorrow's The Big Day

Tomorrow is the big day around here for some modifications. We are completely tearing out mommy and daddy's bathroom and remodeling it so that mommy can get into it, toilet and shower etc. in her wheelchair. We are tearing out everything to the studs and pretty much putting in tile wall to wall and floor to ceiling turning the whole bathroom into an open shower. We are also putting in a new wall hung sink so mommy can get under it.

While all of that is going on we are hoping to finally get the yard in that was torn out so that we could build a new sidewalk and handicap ramp to the front door, again allowing mommy access. Plus there is lots of weeding and general clean up that needs done.

While all this is going on mommy is going to be working (with help we hope) on cleaning out all of the girls toys, clothing etc. and getting rid of extra stuff. We have been given so much stuff that the girls have enough for 10 kids and its time to thin.

Finally we are closing off the day with a BBQ/Potluck in the afternoon when all the work is done!

If you can join us please do. We'll be here from 9am on. If you need directions or have questions post them here with a way to get back to you and we'll try and answer them throughout the day.


Thursday, April 08, 2010

Things are getting difficult

Over the last few weeks, things have gotten much more difficult for Mommy. Mommy has for a long time said that she had a bad leg and a good leg. Now, it is more like a bad leg and a better leg. She is having more and more difficulty with the right leg (the better leg). The disease is definitely progressing. In addition, her arms are being affected - especially the left arm. It is difficult to raise her left arm over her head and not particularly easy for her to raise the right arm. Tasks like dressing are getting more and more difficult. Kitchen tasks are difficult. It is hard to get items off the top shelves of the refrigerator or dishes or other items out of the upper cabinets. Daddy is having to help her a lot. Even with a grab bar and raised toilet seat, Daddy often has to help Mommy to get up. We have a shower bench, but Mommy can't get up from that without help either. Mommy has noticed changes in her breathing and in her swallowing. While only occasional at this point in time, they are indications of problems which can become very serious.

We need to remodel the bathroom so Mommy can have an easier time using it. The plans are in place to do that the middle of this month. But, it will mean being without a bathroom that Mommy can use without help for several days. While there are two other bathrooms in the house, Mommy will need help.

The girls saw the dentist last week. Rebekah has 3 cavities in her permanent molars. The 4th one of the molars isn't in all the way. The dentist believes that the cavities are the result of the enamel not being very strong because of the radiation Rebekah received during her cancer treatment. They are working with insurance to try to get it covered under medical insurance as we do not have dental insurance. Meanwhile, the dental office has found an organization that helps pay for dental work for children with cerebral palsy. They may pick up whatever portion of the bill that insurance doesn't cover. Please pray that medical insurance will approve it and that this organization will help pick up the remainder. As you can imagine, funds are tight. Rebekah's trust has very little money in it. If you are interested in helping financially, you can visit and click on the donate button on the right hand side of the screen. Any money received there can be used for Rebekah's medical bills. We would appreciate it.

We really enjoyed the garden we had last year. It was our first year of ever having one. We overdid it on a lot of the veggies, but we learned a lot in the process. Daddy got the ground ready and helped on and off throughout the growing season. Grandma C & Grandpa helped with the planting. Mommy did a lot of the work with the garden - help planting, rototilling, harvesting, etc... This year, Mommy can't really help plant or harvest, so we are trying to decide what to do.

Mommy can't do much and Daddy is overloaded having to do his normal work plus help Mommy plus do many of the things Mommy usually does. As time goes on, Mommy can do less and needs more help. There are only so many hours in the day and only so much energy.

After meeting with the Occupational Therapist and Physical Therapist last week, several things became clear. We need the bathroom remodel discussed above. Mommy needs to have an adult (capable of lifting) with her at all times. Mommy needs to have a hospital bed so that she can raise the head and raise the feet to get comfortable and to help get in and out of the bed. The bed came last night. The girls are sharing a bedroom again and Mommy & Daddy's bed has moved into what was Rebekah's room for Daddy. We need to get bunk beds for the girls and then move dressers around.

In general, it means that we can no longer "get by" without having a lot more help. It really hits hard. Mommy spent much of the meetings with the therapists in tears. We are working on putting together a formal group to help with all these tasks. If you want to be included, please let us know.

The front yard is a mess. It got torn up pretty bad when we put the new sidewalk in. It was going to need to be replanted. Since it wasn't very level, Daddy has been working on trying to get it ready to plant and to get it level. The weather hasn't exactly cooperated with that. So we need some decent weather and Daddy needs time and the ability to get it done.

The medication trial that Mommy is on has been trying to get approval to increase the dose of medication. While I hoped the medicine I got this month would be at the higher dose, they didn't have approval yet and sent the old dose of medication. So I don't know if they get approval if they will send out higher dose medicine before the next batch I'm supposed to receive in two months. I have hope that the higher dose might help stop symptoms from getting worse (or at least make it happen more slowly). The dream world would be that it actually makes things better. But I suspect that is a pipe dream.

We signed the girls up for a week long cancer camp for cancer kids and one sibling this summer. The girls have not been to this one of the camps before. Sarah is just now old enough and we didn't figure Rebekah would handle it well on her own. It is a sleepaway camp without parents. They seem to be excited to go. That will be in late June.

We are trying to do some things with the girls and for the girls, so that they can have some fun times and some lasting memories. It is hard, sometimes, to figure out what is right and what are the best choices.

Our friend Genia from Alaska is planning to come down and spend part of the summer with us to help out. She'll be bringing her little brother and her dog with her. We enjoy having her with us and look forward to having the extra help. She very much wants to know what to expect. We often wish we knew what the future would be like. We just don't know how this disease will affect Mommy. It affects each person differently and so we just have to take it a day at a time.

We had a friend drop by last weekend with a chest full of frozen meals that she had prepared for us. That was a delight! Thanks Robyn! Your thoughtfulness is truly appreciated.

Sarah last week set her stuffies and horses up in a row and started to teach them. She starts off "Today class, ... we are ... here ... to learn ... about God." "What are you going to teach them about God?" I asked. She asked me if I would help her and I told her that she could do it. "What do you know about God, Sarah?" "He sent Jesus to save us." she said. "OK. What else?" "Jesus died on the cross for us." "Good, Sarah! What else do you know about Jesus?" "Um, I don't know." Long Pause. "Oh yeah, he rose again on Easter." "You are so right, Sarah. See you do know a lot about God and Jesus." It was really neat to see her wanting to tell about God & Jesus.

Thank you all for continuing to check in on us, pray for us and encourage us. We appreciate it! I know there is more to tell. I just can't think of it right now.