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.

Thursday, January 28, 2010

Ups, Downs, Ups, Downs...

...repeat as necessary each hour of the day.

The morning started very early and daddy got a lot done in the office. Early morning times before the phones start and other people's emergencies take over his life are wonderful. Pandora provides the inspiration and the piles on the desk provide the work. While doing it this morning a few things came to mind:

We're thankful for:

a clean house, we mean really really clean. Every other Tuesday a wonderful family is paying for house cleaners to come and spend a few hours here.

Food. Good food and lots of it. Our awesome church family has been providing a few meals each week and it is such a huge relief to be able to just throw something in the oven or microwave and not have to fuss over "what's for dinner?"

Our Wednesday morning sweetheart who drops by with a bag of breakfast goodies and fruit every Wednesday morning like clock work. You ARE so wonderful.

Rebekah's bus driver. She has made the bus trips so fun that every night when it comes time to "tell Jesus what we are thankful for" the very first thing Rebekah says is "my school bus." Thank you for helping Rebekah buckle and unbuckle out of her car seat as mommy is not able to get up in the bus anymore and do it.

Clean dishes and laundry. Another wonderful awesome friend came Monday and helped mommy do some dishes and laundry. We can't tell you how much these things make a difference as mommy can still do a lot of things, she just can't do a lot. All of her energy gets used up so easily with just moving from here to there. And all of daddy's is spent dealing with long days in the office and the emotions that entails.

Little girls who, despite being little girls and sisters, listen well and love each other even better.

The co-worker of daddy's (another adoption attorney) who calls at least once a week "for no reason" just to make sure things are okay and give him someone to talk to.

Kleenex. 'Nuff said.

Costco's return policy. So many things have been backing up here that we needed to return and Costco took it all back yesterday, even though we only had receipts for some of it and much time had passed on other items.

Study medicine. Mommy is with us and somewhat able to walk and still do things with us. This was actually not expected back in September when we first found out about her familial ALS. We don't know how much more time she will have but we are SO thankful for every waking (walking) moment.

And yes, that kind of brings us through a cycle. Another good friend has turned us on to It's kind of a "Make-A-Wish" for adults. She sent us the info on it months ago and being in some sort of a self-protecting mode daddy promptly ignored it until today. Today the info was re-sent to us and both mommy and daddy took a lot at it. Unfortunately we probably qualify and that brought daddy to tears as it brought about the thoughts of being without mommy. Not being able to make it through the application daddy printed it out and took it to mommy. The second she saw it she started crying (again.) She told daddy that she too had started into it earlier and couldn't make it through the application because of her tears so she put it away, also putting away the tears that came with it. Even if only for a while - until daddy brought them back with the application.

Mommy can't carry things now. Just trying to walk at all with the cane or walker is difficult and if she has anything in her hand, no matter how light, her balance is way off and she will fall. It became apparent the other evening that while she can stand at the stove (with help) she can't take the pot of water and pasta the two steps over to the sink to drain it. Last night while out we couldn't find a handicapped spot and the related ramp so mommy had to step up a curb. Something we all take for granted like one step up a curb was a problem and daddy had to help. We are about at the point where the office door (two steps) is not going to work anymore. Abilities are slipping away, slowly maybe but definitely slipping away.

It's time for more furniture moving. Mommy still wants to get to a desk to handle medical bills, make calls, etc. and she can't the way things are right now. Mommy also needs to be able to get her wheelchair all the way into the bedroom and daddy's dresser is in the way of that. Some furniture is going to have to go just to open things up. And the bathroom, well, the shower is becoming more and more difficult and it looks like we are going to have to gut that and just tile everything, making an open shower where she can wheel into it. So many changes. Ugh.

And when at the bottom of the cycle we need only think about how with each and every little thing put in front of us there is a way around, over, or under it and back up again we go. God is so true when He says that He will provide and that We will not have something thrust upon us that we are not able to bear. We are thankful to God who has, thus far, brought us to a point of deep love for each other and for two beautiful little ladies who are SO extra special each in their own way. It may not be bedtime, but it is definitely time again to "Tell Jesus what we are thankful for..."


Sunday, January 24, 2010

A Smattering Of Things...

... a cute story: We received a phone call from the bus company last week telling us that there will be a change in Rebekah's bus riding schedule next week as they are adding a new student. Rebekah does okay with change as long as she has time to process it before hand (but not so much that she expects it too long before it happens - see the last update about her grow tall medicine!) This morning we started talking to her about it.

Mommy told her that there will be a change next week and a new kiddo on the bus. Rebekah wanted to know who was leaving and couldn't seem to grasp adding a student without taking one away but finally she got it. Told her that she would be on the bus longer as she would be dropped of last rather than first. Mommy said "they will be doing the route backwards." At that point Rebekah looked over her shoulder (like backing up) and said "beep beep backwards beep beep." It was cute.

... a heart warming story: Quiet Sunday morning. Only daddy and Sarah awake. Soft music playing while still dark outside and the woodstove burning. Reading the little mermaid and telling her a story about a little boy named Scott and a little girl named Frances and how they met. "Is that a real story daddy?". "Yes honey, it's a wonderfully real ...story from a long time ago."

The last story came from daddy's face book. He is still toying with a place to post more personal emotional posts and for right now his face book account is where those are going - mainly because mommy doesn't read there. It's tough wanting a place to vent; not wanting to hide things from mommy but also not wanting her to be upset either. This is really scary to open things up this way, but feel free to friend request daddy if you want to read some of those. Find him as "Scott Adams" from "Banks, Oregon" Assuming he keeps up things there you will definitely see a different side of daddy than gets posted to the world at large here!


Thursday, January 21, 2010

An Update..., Finally!

Sorry for not posting in a while. We’ve been very busy. After the trip to Atlanta, it was time to get ready for Christmas (including all the shopping). The girls were home from school, which meant that Mommy had less time to get other things done. Right after getting out of school for Christmas break, Rebekah was very upset that she couldn’t go to school for a “long” time. She wanted a paper chain so that she could take one chain off each day and know how many days were left. She wanted her chain to tell her when she got to go back to school. Not until Christmas, but back to school. Sarah decided it was a good idea, too, so we made one for each of them.

I have to start off with a couple of stories. Sarah came to me today to “tell” me something. She said “You should never tell a crocodile ‘good morning’ but you should tell it ‘good night.’” “Why?” I asked. “Because he might eat you.” “What will happen if you tell him ‘goodnight?’” “Uh, I don’t know. I think maybe he’ll fall asleep.” I’m not sure where the story came from, but I thought it was very cute.

We were sitting in church last week and Sarah was sitting next to Mommy while we were singing. The words of the songs are up on a screen up front and we’ve been working with the girls on looking at the words and singing with us. Sarah asked Mommy what the name of the song was. Mommy said “Knowing you”. Sarah said “How can the first word be Knowing when it starts with a K?” At school, she has been working on letters and their sounds. Mommy was tickled by the question and happy that she is paying attention at school and at church. She is starting to grasp some of the concepts that will be needed for reading. .

Rebekah is beginning to be more independent in her thoughts and actions. She likes being responsible for getting to different places at school (recess, physical activity time, library, lunch, etc…) on her own. She is taking a bigger part in choosing what to take for “weekend news” – kind of show & tell about something that happened over the weekend.

Rebekah is also remembering things from the beginning of the day to the end of the day and asking about them. It is not uncommon for her to ask about something we talked about at breakfast when she gets home from school. I’m happy to see the improvement.

Now for some of the events of the last month… We were very busy over the holidays!

We were invited to a Christmas party at Mommy Debbie’s family’s home. We had a fun time. Thank you Dunham Family!

The girls and mommy got to have a “spa” day at home provided by some business associates. They brought lunch for all of us (including Daddy). The girls (including Mommy) all got pedicures. The little girls got finger nails painted, too. The girls were able to decorate an insulated cup which they got to keep. Mommy got a massage, too. Then we got a little makeup and the girls got some hair pretties. The girls got their pretty Christmas dresses on and we took some pictures. We ended with some hot chocolate. The group brought dinner for us, too! What a special day.

There was the Fire Department Family Christmas Party, Christmas Eve at Grandpa and Grandma C’s, Christmas morning at home, Christmas lunch at Grandma M’s, Sunday with Grandma A at our house to celebrate Christmas, New Year’s Eve celebration at our house, the girls’ nanny’s wedding rehearsal and wedding and then finally getting the girls back into the school routine. Each of the events was fun and enjoyable.

January has started with a change in health insurance which has a lot of implications for our family. We aren’t even half way through the month and I can’t tell you how many times I’ve had to give out the new insurance information.

Next month - February will be 4 years since the completion of her cancer treatment. Assuming that all goes well with the scans and there is no evidence of disease (NED), then our next scans will be in 6 months and then another set of scans a year from now and then it will be annual tests but no more regularly scheduled MRIs, Chest Xrays and Panorexes. It is kind of exciting and kind of scary at the same time.

We have lots of scans (MRI, Chest XRay and Panorex), tests (heart echo & ekg and audiology-hearing) and doctor appointments (oncology follow up, endocrine follow up, ENT follow up) to schedule for February. And it is a short month. We’ve started the process of trying to get things scheduled. With the change to insurance, we have to look at each piece and make sure that we get appropriate authorizations when needed and determine if the physician is in network or out of network. If a physician is out of network we need to determine if there is another reasonable choice that is in network and should we switch.

One of the things that is different with the new insurance is that they do cover some Growth hormone. Of course they don’t cover the one that Rebekah has been on. So we are working with the Endocrine doctor’s office to try to switch her to one that is covered on the new insurance. We have some time, as we still have some of the old one. We mentioned to Rebekah that we might get some new medicine instead of the one she’s been using and would it be ok if Daddy gave her a shot each night. She says that it is ok if Daddy gives her a shot every day. She’s ready (and I do mean really ready) to “throw” out the “old” one. “It’s old” she says.

“It’s old” seems to be a favorite phrase. It applies to food & beverages when she wants them thrown out. She’s been saying that about her booster seat. She seems to think that she can get a new one by telling us the one we have is old. She doesn’t understand that the one we have is very protective and was bought for her specifically. She will stay in it as long as Mommy & Daddy feel it is the safest place for her. She tells me that some of her toys are “old”, but then wants new ones just like it.

Earlier this month, the home health company brought out a new breathing machine (BiPap) for Mommy. She is supposed to use it at night time. It takes some getting used to. When Mommy takes a breath, it will help force more air into her lungs. The ALS Doctor has suggested it because they think that the earlier breathing therapy is started the better. One of the breathing tests (breathing in) shows a low score, so Mommy qualifies for the breathing machine.

Both Mommy and Daddy have been fighting a cold over the last couple of weeks. That hasn’t made Mommy’s breathing any easier. It is hard to tell if the breathing machine is making Mommy “feel” any better because of the cold.

Mommy’s left leg (the bad one) has been feeling cold. Mommy went to the doc earlier this week to have it looked at. Doc decided that it made sense to do another ultrasound to make sure there were no more problems with blood clots. So we had the ultrasound and there are no signs of blood clots. That is good news. The ones seen in October have disappeared. Mommy continues to take medication to help prevent the blood clots.

The consensus is that the feeling cold is probably related to the ALS and at this point Mommy should wear wool socks to help keep the foot/leg feeling warm. In other words, there isn’t anything they can do about it so it is up to Mommy to try to make it more comfortable. Just one more thing for Mommy to “deal” with.

Mommy has been falling a lot more lately. One day last week, Mommy fell and hit the ground twice. And that was before 8:15 in the morning. It wasn’t the best way to start the day. Lately, she’s been able to catch herself and keep from falling. Usually, she gets more prone to falling later in the day, so starting the day off that way was not a good sign. She’s spent a lot of time sitting and being very careful when walking. She has to keep her cell phone on her at all times, in case she needs to call for help. Adapt, adapt, adapt.

That is really just the tip of the iceberg as to what has been happening in our lives. We’ve been busy. We’ve had lots of decisions to make. Lots of planning to do and just trying to figure out what is best for us right now and what we think will make the most sense for the future.