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, October 24, 2009

Filling In From Yesterday

Thank you for those of you offering your prayers and support. Yesterday was an adventurous day - and around here that can have some different meaning!

We started the day going to the second als clinic in town to try and compare it to the other one, trying to see which was a better fit for us. Both clinics are very very well known and competent so we thought it prudent to make sure we were making the right choice for mommy. Basically it was a chance for us to interview them and get an idea of what they had to offer.

While talking about mommy's limitations, pains, etc. the doctor that we were interviewing said that she didn't think mommy's current pain was the type of pain most als patients experience and in fact she had some concerns. She immediately sent us over to get an ultra sound.

The ultra sound tech finished her leg (and in fact did her other leg too after his findings on the first.) He asked her not to move and told daddy "when that phones right there on the counter rings it will be the doctor wanting to talk to you" and went off to call the doc. The doctor told us that mommy had some pretty serious blood clots in her leg that were in danger of dislodging and causing an embolism. We needed to go directly to the Emergency Room.

In what can only be counted as a small miracle given the over flowing of the emergency rooms in this area with the swine flue, this major metropolitan emergency room was empty and we were seen immediately. Mommy was given in injection of Lovenox which is a pretty powerful blood thinner and we were sent home with 14 more shots to give mommy over the next 7 days. She was also started on oral coumadin (warfarin) which is another thinner. Apparently she will need to be the coumadin for a long time - possibly for life.

While the ER doc was talking to us about Frances he shared about a friend of his that has recently been diagnosed with a disease similar to what mommy has and the doc was pretty distraught about it. We talked with him quite a bit and shared stories as well as some information. The doc had been doing quite a bit of "grasping for straws" research and we talked about some studies going on in Italy. Interestingly enough mommy was familiar with this study not because of her issues but rather because of Rebekah's as the same study is thinking they might have some information relating to Ewing's Sarcoma as well as these neurological diseases. Over all we got some good information but I hope also shared some peace with the doc.

As we write this about mommy's issues we are reminding that we have diverged quite a bit from this blog being totally about kiddos and if that bothers you we are sorry but it is about our lives that some of you find interesting and we enjoy using to share God's love and strength.


Friday, October 23, 2009

An even quicker update ....

Will post more later but we are in the Emergency Room right now with a blood clot. Prayers would be really helpful.


Quick Update

Just a short little update to let you know where things are.

Yesterday morning mommy was up about 20 minutes when she called to daddy in his office and asked him to go get her wheel chair out of the car. So far we have not had to use the wheelchair in the house but only when we were out and about. She has been using her cane and furniture pretty extensively in the house until now. But the pain of being up on her leg has just become too much. We knew it was coming and had planned on moving things around in the house to make room for a wheelchair this weekend, but instead we spent much of yesterday morning working on that.

Today Grandma C is taking Sarah to school and taking care of Rebekah while mommy and daddy head off to a new als center. It is kind of a second opinion, not of the disease but rather to see if the care center we have started with really is the right one for us.

Then this afternoon we are going to the home of a wonderful friend whom we have not yet met that is donating a wheel chair, scooter and electric hospital bed to us. There are no words in the world the express how meaningful that is.

Tomorrow is a work day with a lot of house organizing and work outside including the building of a handicapped ramp for the front door so that mommy can actually get the wheelchair into the house without daddy having it pick it up the steps.

There are a lot of steps needing to be taken much more quickly than we wanted. Continued prayers and support as we work through that is greatly appreciated.


Tuesday, October 20, 2009


Sorry, can't come up with a better label for today.

Rebekah had school today and Sarah was at home. While at home Sarah was complaining of her ear really hurting so mommy and Cathleen took Sarah to the doctor. Doc doesn't see any signs of infection but gave her some numbing drops in case it continues to hurt.

Daddy had to take care of getting Rebekah ready for school this morning as mommy was in too much pain. After taking some pretty serious pain killers mommy was able to get up and do a few things early morning but the pain was back this afternoon and mommy is back in bed. Daddy will take care of dinner and bed time tonight.

The events of the day - CONCRETE!!!!

Here is what it looked like when we were tearing things out:

And now:

The old walk was too narrow, broken and uneven to get a wheel chair up it. Now we could land a small plane on it it seems! This picture is of Mike, the owner of MLM Construction who donated his and his crew's time and materials to make it possible. If you ever need concrete work done in the Portland area please get a hold of Mike. He is a major answer to prayer in so many ways!

And then of course there is the REQUIRED action of handprints in the new concrete. Daddy took the girls out and they picked out a corner right out in the middle of everywhere to put their hands and write their names in the concrete for all the world to see forever:

It has been a rough day but emotionally it is a huge relief to have the concrete done. Thank you all for continually lifting us up!


Monday, October 19, 2009

Atlanta Update and More

We are home from Atlanta. We got home Saturday night and were planning on having the girls spend Saturday night also with Grandma so we could "recoup." But we couldn't not see them so we met them for dinner at their favorite, Red Robin. After seeing us Rebekah HAD to come home with us so she did. Sarah was just fine to stay another night with Grandma so she did. We picked her up after church on Sunday and went to her friend (and husband from this summer's camp)'s Make-A-Wish kickoff party. Go enjoy Mickey Alex! And tell him we said "hi!!!!"

Before talking about the trip let's talk about some wonderful things that have happened. Today Mike, the concrete contractor showed up and formed the front sidewalk out and ordered the concrete for tomorrow. That should be just in time for us to build the ramp this weekend. We are hoping to be able to pick up the promised wheel chair later this week too. This was really a needed boost after a very emotional and tiring weekend.

As those of you who have read the last couple of posts know, we went to Atlanta the end of last week to allow mommy to participate in a medical trial for familial als. They have just recently obtained FDA approval to start testing of a new drug on people. In all of the country they have only been able to come up with 10 people to join the study who have familial als - it is that rare. Basically everyone that we met with (with one exception) was a PhD and not an MD. This is definitely research and not treatment for mommy. Mommy is on the medication but we don't know whether it is the real test drug or a placebo. Don't know if we will ever know.

We got pretty physically tired out from the many hours of flying from Portland to Atlanta, hotel rooms, taxi's etc. The sitting hurt mommy's leg pretty bad and she is in pain like she never has been before. Two days later the pain has not gone away.

The other thing that was difficult from this weekend is facing more detailed information about the disease. While regular als has some wonderful (at least from our perspective now) statistics about life expectancy, familial als is not quite so good. The docs that we are working with, who have seen a lot more familial als than most, pretty much said that life expectancy from first symptoms is 10-14 months with just about no one surviving past the 14 months. We are doing everything we can - which is mainly prayer and hope - to break those odds...

Yesterday we went to Home Depot to buy some handicapped accessibility supplies. Daddy is going to be putting up grab bars by the toilets for mommy and we also bought a shower chair as standing in the shower is getting pretty difficult. Daddy is also going to be installing a handheld shower head to help with showering. While we were at the hotel we were in a handicapped room and it had the entire bathroom tiled and no break going into the shower. There was a shower curtain to help control the water but any excess spray was safe because everything was tiled and sloped back to the shower drain. The thought of having to tear apart our recently remodeled (after the fire) bathroom is daunting but we may just have to do that. Anyone know any good tilers?

And finally for this post, something direct from daddy. Stupid things make me cry. Tonight at dinner mommy told me that I am going to have to take the girls to the Candlelighter's Mt. Hood Snowmobilers party this winter as she just can't walk in the snow and the wheel chair can't do it either. It was difficult thinking about doing something with the girls alone, without mommy, but I was doing okay with it. And then immediately after that we started watching "Little People Big World" (a show about some little people that live just a few miles from us.) During that show they actually went skiing to the same mountain where the snowmobiling party will be - coincidence? Anyway, on the show they were skiing where I used to be a competitive skier and we were talking to the girls about skiing. They both asked me to teach them to ski. And with that it hit me that I might be able to but it would have to be without mommy. She won't be able to ever share that with us and no matter how much we might in the future have fun doing something (like skiing) as father/daughters, we won't be doing it as "a family" as mommy won't be there. We maybe able to be father/daughters, but I don't know how we will ever be a family anymore without mommy. Sarah asked me why I was crying and I could only ignore her question hoping I didn't really have to answer it.

Pray for the emotions, all of ours.


Friday, October 16, 2009

In Atlanta

Thank you Darlene for the prayers - you should have started earlier! It was quite an adventure getting here. We woke up late. Not sure if the alarm never went off or if Mommy shut it off in her sleep. Thankfully, we were only about 10 minutes later leaving home than we had planned. We got onto the flight, backed away from the terminal and stopped. A warning light had come on in the cockpit and they needed to have it checked out. We went back to the gate and the maintenance people looked at it and determined that we would not be able to fly as they wouldn't be able to maintain cabin pressure. So off the plane we went.

Then, we had to wait as they tried to rebook everyone on other flights. With already full flights scheduled and an entire plane full of passengers, it took quite some time. Finally an hour and a half later, they had booked us on another airline to Denver and then back to their airline for the trip from Denver to Atlanta. But we didn't have bording passes or seat assignments. Daddy had to go back out to the ticket counter to try to deal with that while Mommy waited at the gate. Even still, we had to wait for seat assignments because they wanted to move us forward, but couldn't until the passenger in the seat where they wanted to put us had checked in. We went and got some lunch and waited for the time to board. They did finally get us moved forward.

We landed in Atlanta a little before midnight Atlanta time. It should have been around 6:30pm if we had made our original flights. We were transported to the hotel and eventually made it to bed. I tried to remind myself that it wasn't that late West Coast time, so going to bed at 10pm Pacific wasn't bad, but getting up at 6am Eastern was a bit difficult.

We had breakfast at the hotel and then took a taxi to the hospital. We have met with the doc here and he has done some testing. Doc here agrees with the diagnosis - which really isn't any surprise. We have a full day of tests and procedues and are really just getting started. Then we need to be back tomorrow morning for a little bit more before heading home. Both of us are tired and fighting colds, but we're hanging in.


Wednesday, October 14, 2009

Off to Atlanta

We've been getting ready for our first trip to Atlanta. Mommy and Daddy will fly out tomorrow morning. We'll be travelling all day with one connection. The sitting with legs down and little room to shift positions will make it rough on Mommy. We've borrowed (indefinitely) a manual wheelchair. We'll take it with us so Mommy won't have to walk too much as well as the cane for when she is walking. It will make for interesting travels.

The girls will be with Grandma M, so they will be well taken care of.

Our friend Genia was here this past week to help out. We harvested quite a bit from the garden including 5 huge pumpkins. And we left two more pumpkins that weren't quite ripe in the garden. Mommy hopes to be able to work with the girls on making some pumpkin pie or pumpkin bread from one of the pumpkins and maybe even roasting some pumpkin seeds. We've been too busy the last few days, so it hasn't happened yet. It was great to see Genia and her help was tremendous. Thanks Genia!


Saturday, October 03, 2009

Highs and Lows

It has been an interesting week with some big emotional and physical hits. But then those have been countered with some wonderful blessings bestowed upon us from above.

On Tuesday mommy and daddy went to the als clinic. We met lots of of new therapists and doc came and did an exam to find the current state of mommy's disease. The result of the day was that doc has prescribed a controlled pain medicine for her. It is a highly addictive medicine although he basically said "at this point we don't worry about that." Doc also wants her in leg braces when she is up and walking and in an electric wheel chair most of the time to conserve energy. One of the hardest emotional hits was his closing comment that she needs to spend the energy she has left only doing the things that she likes to do.

As we are dealing with the emotional issues we also have to deal with the financial. The leg braces run close to $1,000. The cost of an electric wheel chair is in the 25-30 thousand dollar range. Our insurance only covers $5,000 a year on these types of devices. Obviously we don't have any funds to cover the difference let alone a difference so great. Here is where God comes in. After sharing with daddy's sister the situation she shared with her pastor. The email exchange from her looked something like this:

"You two know that God works in amazing ways! I was talking to my pastor about your appointment on the 29th & how you will need a motorized wheelchair. He listened quietly & then asked if you have ordered one. I said no not yet. He smiled & began to tell me that his close friend just passed & that his wife still has all of his medical equipment- a fancy motorized wheelchair with a fancy lift seat as well as comm. Devices & other medical equipment. He is sure that the owner will help you with these needs and is going to speak to her!
Praise God!

And a later email:

"I just heard from my pastor- all is a go- "she" [we want so much to give you her name but she has not authorized that and until we have permission we want to respect her privacy] has the wheelchair another possible skooter, the hospital type bed & some type of augment comm device! We are to let them know when you'd like them! Praise God!
He does provide for ALL of our needs!

If the significance of this has not hit you hard as to how GREAT God is, please go back and read the paragraph above about how much these things cost and how insurance was basically not going to cover it! Only a true and caring God can answer prayers in this way.

This presented another problem as there is no access to our house for a wheelchair. There are steps leading up to the front door (which can and will be dealt with by building a ramp) but the existing sidewalk was too narrow, uneven and craked. Here is where yet again God shines. Daddy called Mike, a friend who does concrete work to ask for some advice on what to do and more importantly how to do it. After giving a little bit of direction on the phone daddy fearfully asked "how much will this cost?" The answer came "Do you trust me? Then I will have my guys come out next week some time and prep in the morning and have the concrete ordered for the afternoon. It will be taken care of." Oh my what another wonderful blessing. If you ever need a great concrete and general contractor in the Portland, Oregon area please let us know - We'll tell you all about this wonderful man!

Today daddy and friend Steve are going to spend the day tearing out what is there and leveling the ground to make it ready for the new sidewalk next week. We are going to be doing that with a new to us tractor that Grandpa made possible just this week and with the use of a Bobcat and other equipment donated by another good friend - thank you Grandpa and Doug! To top that off just yesterday another contract friend that helped us out splitting wood last weekend stopped by and just happened to mention that they have a jackhammer they bought for another job and have only used once and is sitting in their shop just up the road available for use - thank you to the Herbs! And to show how God works way ahead of time on things, another friend called us out of the blue this last summer and asked if we needed gravel. He delivered more gravel than we need and we have had extra sitting in a pile since then. That "extra" is going to be right about the amount we need to lay down under the new sidewalk - thank you Johnny! Yes, God does work through other people.

Again, if you have any question as to the ability of God to meet the needs of his people, please go back and read this post again. Our God IS An Awesome God!