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.

Wednesday, August 25, 2010

Hospital Day - Rebekah

Changing gears on you here. Daddy and Rebekah are off to the hospital for 4 1/2 year scans. Praying mightily for the wonderful three letters - NED - No Evidence of Disease. We are almost to that miraculous 5 year milestone.

This will be the first time daddy has done this alone and there are A LOT of emotions that are going along with that. All night long all daddy could dream about was trying to figure out how to take mommy, who is almost completely bedridden, to Rebekah's funeral...


Tuesday, August 24, 2010


Please see previous post.

We met with Nancy, our new volunteer coordinator and she is working on lots of slots to fill.

I know a lot of you have been asking/offering to help but when it comes down to those that have put out more than a vague "If I can do anything let me know..." the list is pretty small. Please email us with your contact info so we can get it to Nancy and be blessed by your help.

We are still working on ways, other than the obvious help pay for someone to come in, that those of you from far away can help - please stay tuned.


Sunday, August 22, 2010

Needing Help - Can You Help?

We have reached the next stage. Throughout the summer we have received a lot of "live in" help with Genia, Annie and Frances' mom. Now that summer is over we are loosing a lot of that help. Unfortunately that also comes at a time when Frances is getting worse and needing more.

Right now Frances is in bed 75% of the time and in the wheel chair 25% of the time. Throughout the day she needs medicines, being fed, moved around in bed and just generally having someone keep her company. She also needs some tending to a couple of times a night as well.

The house also needs some caring. Cooking, cleaning, organizing, helping the girls get to school/get home (on and off the bus), meals, etc. Once the girls are home from school they also need some attention.

While I can do some of this, I can't do it all and continue to work. Without work we don't eat or have insurance. Although I do a lot of my work from home, if I need to leave we need at least 2 people to be with Frances (and/or the girls.)

So mainly, we need bodies for part/all of any day or night. It doesn't take any special training although not being afraid of bodily fluids can help - kind of like being a mom! Unfortunately we are not in a financial position to pay for someone to help with these things (there are people out there for $15-20/hour) and because we are trying very hard not to go on need based medicare, we don't qualify for any free in home help.

Starting this week we have a formal care organizer (thank you Nancy) that will be helping to organize all of you that are willing to help. In order to get her up to speed it would be real helpful if you could reply to [scott and frances AT (take out the spaces and use the right symbol)] with who you are, what/when you could help and an email, phone number and home address we can prepare a master list of people that Nancy can call on when we share our needs with her.

And of course, please be praying for us, for help, for finances, etc. Thank you.


Tuesday, August 17, 2010

Home Again - Rough But Worth It.

Yesterday at 6:00pm they did another surgery on mommy to put a catheter straight through her side into her bladder rather than having to go up through her urethra. Although the staff at the hospital was not exactly fond of the idea, we had worked out with them that as long as mommy was stable after the surgery we were leaving last night. And at 9:00pm we did.

By 11:00pm mommy was home and in bed. She is on oxygen and/or a breathing machine all the time, is taking her food and medicine through a feeding tube and is generally happy to be home. It's rough but worth it.

She continues to have a lot of head/neck pain. We believe this is because the muscles in her neck have been affected by the ALS and she just doesn't have the strength to hold it up anymore. Hopefully we can get some answers from PT when we see that therapist here at the house in the near future.

Again, it's rough but worth it.


Sunday, August 15, 2010

My What A Difference...

...a few hours makes.

Last night we were mostly stable, but very poor Frankly daddy expected (because the doctor told him to) to be called back into the hospital as mommy was being transferred to the ICU and having a breathing tube/ventillator put in. That never happened.

4 hours ago we were running down a cardiac scare thinking she might be having some sort of cardiac event. We were also ultra sounding and prepping for the thoracentisis (draining that fluid) that we posted about. That never happened.

And now, well, daddy is laying in mommy's bed typing out this message and mommy is in her wheelchair, off the breathing machine and on just a little bit of oxygen. She is moving herself around and finally making decisions for herself again. If things go the way they have been in a few hours she may even be off the little bit of oxygen that she is on.

There is nothing we can attribute this turn around to except prayer. Don't know why we would be surprised as we have felt His miraculous hand smack us upside the head time and time again. Haven't talked with mommy about it, but daddy (yet again) has a renewed understanding of walking through the valley of death and the promises surrounding that trek. Ever think about the fact that the Bible says we WALK through the valley, not hang out and camp there? That is pretty cool.


Sunday Morning - A Little Bit From Daddy

Afraid to be optomistic and this point but having reason to do so.

Daddy spent the night out in the van on a partially inflated air mattress and Grandma M stayed up all night sitting in a chair next to mommy. Over night she did not have ANY pain medicine and stayed on a different bi-pap machine that is essentially a ventillator but connected to a mask and not to a tube in her neck. They have been able to decrease the supplemental oxygen and her breathing is still shallow but has slowed down closer to a normal rate. This is all very good.

They came in this morning and took another x-ray of her chest in order to see if it is possible that the positive pressure of the breathing machine may have pushed some of the fluid out of the space between the lungs and the lung walls. We are still waiting on the results of the x-rays and whether or not they are going to do another blood gas level to see where her CO2 levels are. That is going to be the pivotal point to know whether we are getting better or not.

I, daddy, have been posting most of my personal feelings/observations over on facebook but will touch on them a little here. I need more of me (and yes, I realize that is scary to those of you that know me.) I need to be with my little girls who have great grandmas taking care of them but its not the same without mommy and daddy with them. I need another one of me to be taking care of mommy; in fact I think I need two of me here for that as 24/7 is a lot. And then I need another of me to take care of my clients. I have a lot of working backing up from the end of last week and most of it is the kind of work that I cannot just ask someone else to do. And I supposed I finally need another one of me who could just go for a walk, a ride or ??? to try and clear my head. I am severely torn over which one of me to be at any given moment.

Many have asked about helping and I honestly don't know what to say or what to ask. Company can be comforting or intrusive depending on the particular moment. Good friend Shawn brought me a hot breakfast yesterday and I am still crying with joys of thanks as to how wonderful that was - it was so little but SO BIG! I am very much beginning to dislike even going into the cafeteria here. Everything is happening moment by moment so I can't plan anything from any of you yet at any moment there are so many little things that could be helpful and I just can't figure out how to coordinate it all together.

We definitely are not leaving today and, as I said somewhere a few days ago, tomorrow ain't lookin great either. I don't know how long we are going to be here but I could really use some of you who are personally close with Frances to come relieve me and Grandma so I can either get some sleep and/or some work done.

I guess most of all I need some clarity.


Saturday, August 14, 2010

Morning After

Thanks Teresa for the reminder. I guess I hadn't realized that I hadn't put up an update this morning.

The night went pretty well as far as nights in the hospital can go. Mommy continues to have breathing problems; that is our focus now. Either we can ween her off oxygen or we'll have ongoing problems. She needs her breathing machine or her saturations fall into the 70's which is not good. With her breathing machine she was at 96 with lots of oxygen (15lpm) and daddy is actively working on lowering that. We are at 8lpm right now and she is maintaining at 93% or so. Our goal will be in the 90's with no oxygen. Daddy also ordered a meter that will be delivered at home on Monday if Amazon/FedEx work right together.

We JUST spent about 30 minutes suctioning out her mouth, nose and throat as she felt like there was a lot of mucous building up - and she was right. It brought on a lot of pain and she needed the pain killers that she was trying to see how long she could go without. But she is resting peacefully again, hopefully with a slightly more comfortable mouth/nose/throat.

Only time will tell, but daddy's guess is that we are going to be here a while.


Friday, August 13, 2010

Final Friday Update

Mommy finally came back to the room. No ICU which is great. When she got here we had some scare in that she was not breathing very well. Her oxygen saturations were falling into the 70's which is WAY too low. In order to stay in the 90's she needs to have her breathing machine on with supplemental oxygen. This is close to what we were afraid would happen and would actually require her being intubated. But as long as we can maintain her saturations with the mask we are doing okay.

The big downside is that she cannot talk. She feels a bit like she is suffocating in the mask but some anti anxiety meds have taken care of that for now. We have taken the mask off for brief moments to try and let her communicate but she is just too weak to get words out. She is also still, daddy believes, a bit "loopy" and incoherent with some of her words.

She just now (4 hours or so back in the room) was asking daddy some logical questions. She is confused about her surroundings, some of the medical devices that are on her, etc. and was asking questions trying to figure them out. She also just now asked for pain meds for the first time since being out of surgery.

Daddy got a small break (a couple of hours) where he went out to the van to sleep. We have (had?) an air mattress that fills up the wheel chair van pretty good and daddy was going to try and get some sleep in the van. Problem 1 was that it was 95+ degrees outside today. Problem 2 was that the air mattress caught on something sharp and popped :( Daddy did get a few hours though while Grandma M stayed with mommy. Now it is a second full night up with mommy. Daddy is working on 2 hours sleep in the last two days.

THANK you Grandma and Grandpa for bringing in some snacks and Shawn for lunch and other goodies. At least there is something to eat in the room now.


Surgery Is Done

Mommy's surgery is done. They only put in a feeding tube but did NOT have to intubate her PRAISE GOD!!!!!!!!!!! They still have her in the operating room monitoring her breathing but they expect her to be back in her regular room without complications, its just going to take longer than normal to get there.


Friday Update

Another bad night, in large part caused by a comedy of errors. Well, it's not really a comedy of errors if it's not funny is it?

Right now we are scheduled for some pretty major surgery this afternoon. Mommy needs the surgery but is not up to it so things are risky. It is certain that mommy will need to be intubated. It is not at all certain whether they will be able to extubate (take the tube out) after the surgery. If they can't she will end up in the Intensive Care Unit. They may never be able to take it out and that could result in us having to make a choice to remove the life support or put her on a ventilator permanently.

Decisions have to be made that we are not ready to be making. How could we not be after knowing this was coming? She has just done so much better than was expected that until this last week we have been living in a lull.

If we make it through today (and the next couple of days) it's only because of the great power of prayer. Won't you please join us?


Thursday, August 12, 2010

Updates on Mommy

A quick update. Daddy is home for a few hours and then off to court at 8am and back to mommy at the hospital. He will be there with her tomorrow and we'll have lots of decisions to make about feeding tubes, ventilators, etc.

As daddy cannot post new threads here from his phone, but can comment, please look to the comments on this thread for updates over the next few days.


Tuesday, August 10, 2010

Please Pray

Mommy is not doing well.

She has not been able to breathe sufficiently since Sunday and has been in respiratory distress. Neither she nor daddy have been able to sleep hardly at all for 3 days now and it is wearing both of us out, but mainly mommy.

We don't know whether this is a result of her lung function having diminished to this point, of the head/chest congestion she has right now, or a combination of the two. We are seeing the pulmonologist (breathing doc) tomorrow and there will be discussion about whether mommy wants to go on a ventilator. There will likely also be discussion on the need for a feeding tube as she has not eaten in several days.

We knew we would be here, we just didn't ever want to be. Please pray.


Monday, August 02, 2010

Has it really been...

...this long? we guess it has. To all of you that we saw this weekend for the first time in many years and you knew the date of our last update off the top of your head, thank you for the encouragement and sorry for not posting more.

We have been very busy, and much of that revolves around mommy not doing as well as we would like. She is completely dependent upon those around her for just about everything. She is wheelchair bound and requires a lift in order to get out of the wheelchair to the bed or the potty. She had a catheter put in the end of June so that she could go with the family to take the girls to camp and that has worked very well so we have left it in. Now we only have to get her out of the wheelchair for bms. The waking up or going to bed routines takes about an hour each and sitting her on the potty takes about 30-4o minutes.

More important than what she can't do is what she can. As is expected with her disease, she continues to remain completely alert mentally. She knows everything that is going on around her, can provide direction to the kids and enjoys watching them play. She is able (though barely) to use her right hand to control her wheelchair and to eat and drink - as long as the glass is only 1/2 full and she doesn't have to do any cutting of food. If someone didn't spend time with her and just talked to her for a few minutes she appears to be doing much better than she is. This is in large part do to the pretty extensive pain management that she is on but even that, unfortunately, is not always enough and she is in a lot of pain which she doesn't show at all.

What she is not able to do is the most difficult on all of us emotionally. Yesterday we tried a few hours at the local county fair. Fairs are NOT made for wheelchair use and she was constantly having to work through tight spaces, uneven terrain, people not paying any attention to her, etc. etc. etc. It was like daddy and the girls at the fair with mommy "outside" just watching and not getting to participate in what the girls were doing. It made daddy very sad.

We went camping with NAFA in June and we expected it would be our last time camping as taking her hospital bed, lifts, potties and all of the misc. medical stuff is very difficult. We are going to try it again though in the middle of August. A new church that we have been going to on Saturday nights has a family camp at the beach and we are hoping to try and do that.

As you can imagine daily life (let alone camping or outside activities) is very difficult for daddy to keep up with taking care of mommy, the girls, the house and still try and get some work done. Throughout most of June and July we had a good friend Genia and her brother Chance come down and stay with us which really REALLY helped. Last night Cousins Annie and JJ showed up and are going to be staying on and off through August. There are no words that can tell how much help their being here is. We are trying not to be scared to death about what happens in September, although we do not that those days will take care of themselves. We know this because God has promised it so - Matthew 6:25-34 have been "beat" into our heads over the last couple weeks, coming up again and again by multiple unrelated sources.

Sarah absorbs more and more of what is going on and we think that may have something to do with some small behavioral issues we are having with her. She is turning into a teen ager (at least by behavior) at the age of 5!

Rebekah continues to be blissfully in her own world and is doing as best as she can be expected to in that world. We are concerned about the fact that it appears she will not have any adult teeth but that is our biggest concern right now (which is in and of itself a huge blessing!) She starts extended school year (summer school) classes tomorrow for a few days a week.

Pray for continued strength and support to get day to day activities done, and for daddy's work to continue to be the kind of workload that he can both handle and which pays the bills.