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.

Sunday, January 28, 2007

It Seems as Though Life Never Slows Down

It has been another very hectic week. It seems like we were running around all week - maybe that is because we were. We spent two afternoons out at Shriner's doing some evaluations. Those went well.

The Speech Therapist at Shriner's was excited to see that we had started to use a speech device with Rebekah. We have a device from Rebekah's school and have been trying to use it periodically. I have to admit that I find it difficult to use, so I haven't been as diligent about it as I should be. The Speech Therapist had some ideas about how to make it better, so hopefully we'll be able to get it working a little better for us. We're also on waiting lists for a couple of other devices which are "dynamic" which should be a bit less frustrating (at least for mom). They may also be able to help us to get funding for another device, once we know what works for Rebekah. I wish we could know today and start moving forward, but it just doesn't work that way. Ugh! We should be able to get some help working with the speech device from Shriner's. We need to get it scheduled and see how it goes.

The Physical Therapist (PT) and Occupational Therapist (OT) were both impressed with how many skills Rebekah does have. As for Physical Therapy, her biggest area of delay has to do with balancing on one foot and the tasks that require that - walking up and down stairs, kicking a ball, stepping over objects, walking on balance beams, etc... Rebekah's Physical Therapy skills are good enough that they really don't have the ability to help her out since there are too many patients who have more severe problems than she does. Occupational Therapy was a bit different. Again, Rebekah's skills are good, but she does have issues with strength especially her left side. Rebekah will be able to get some Occupational Therapy from Shriner's with sessions every other week or so. Part of that will probably include some overlap into Physical Therapy areas, too. We are hoping to coordinate the OT sessions with the Speech (device) sessions.

There is more that will be coming shortly but for now we wanted to at least get you partially filled in on what is happening...


Saturday, January 20, 2007

An Interesting Week

What an interesting week it has been. Monday was a Holiday so there wasn't any school, but Rebekah did have speech therapy. Tuesday morning we were supposed to get a dusting of snow. That dusting turned out to be about 2 inches at our house and 4-6 inches in many areas. That meant a lot of schools were closed, including most of them in the area. Rebekah's school district was closed both Tuesday and Wednesday and ran 2 hours late Thursday. Running 2 hours late brings up more questions. I had been told that with a 2 hours late schedule, her class would be on time but the bus service wanted to verify that too. No speech on Wednesday either, so Tuesday and Wednesday were stay at home days, which was fine with me.

I've discovered that I have to watch for 3 different school districts to see if they are closed in order to determine what Rebekah's (and my) schedule will be. Our home district buses her to school, her school is in another district and her speech therapy is based on a third district. Oh what fun.

To add to the confusion of the week, I (Mommy) broke a tooth Monday night. I called the dentist Tuesday morning and was finally able to get in Thursday morning. I'm going to need a crown and was able to get a temporary fix. I'll have to go back and get the crown done - oh joy! Luckily it wasn't hurting, so I wasn't too worried about waiting a few days. Unfortunately, we had to cancel Rebekah's horseback riding for the week because I couldn't get her there and get to the dentist and Daddy had to work and couldn't get her there either.

We have a friend Jessica who is helping watch the girls a couple of days a week so Mommy can get some things done an try to help Daddy in the office a little. It is great to have the help and hopefully Mommy can be of some good help to Daddy.

Rebekah hasn't been eating real well and hasn't been drinking her juice up. It is frustrating (especially now that we don't have the backup of the g-tube) and so we've been having to push her more to eat. Then, the other night, she threw up on us - and she hadn't really eaten that much. Ugh! She constantly complains that she is full, even when she hasn't eaten anything. She also complains that she needs to go to the potty, even when it hasn't been more than 15 minutes since the last time. If she goes to the potty, she doesn't want to come back to the table. If I don't let her go to the potty, she might have an accident. It is a bit of a catch 22. I wish I knew the magic answer.

Sarah has about 3 teeth coming in all at the same time. It is making her a bit cranky.

We are all still fighting some of the cough that we got around Christmas. It just seems to drag on. Night time seems to be the worst for it.

The middle of December, we got into Shriner's Hospital for an evaluation and were accepted into their program. They deal with orthopedic issues, like Rebekah's need for Physical Therapy (Gross Motor skills like walking and running, kicking a ball or even throwing a ball) and Occupational Therapy (Fine Motor skills like writing, stringing beads, opening containers, putting puzzles together, etc...). The good news is that the doctor didn't see any need for any type of surgery, at least not now. Next week we go in for PT and OT Evaluations as well as a Speech Therapy evaluation (once she was admitted to the program, then they consider providing her Speech Therapy, too). We will have to see what sort of treatment plans they would like to implement for her for each of the areas. There is always more need than they have ability to provide, so we just have to wait and see what they are able to do for her. The good news is that Shriner's doesn't charge patients, so their services are cost effective for us. Since Insurance doesn't like to pay for this type of therapy that is expected to be long term, we need to look at our options.

I came to a bit of a startling revelation this week. When Rebekah was at her lowest weight during treatment (August 2005), she weighed what Sarah weighs now. At that time, Rebekah had lost about 6 pounds dropping from 35 pounds down to 29 pounds. Rebekah was 3 years 8 months old. Sarah is now 2 years 4 months and weighs about 29 pounds. What a contrast! It brings back many of the memories of Rebekah looking so frail - really just skin and bones. What a frightening time that was for us. While 2006 brought only a pound or two of weight gain, the last 4 months of 2005 saw a weight gain of nearly 10 pounds (the 6 she had lost plus a few more). There is a lot to be thankful for. Perspective is a wonderful thing.

Last Friday night, Grandpa and Grandma C watched both girls overnight, so Mommy and Daddy were able to go out with some friends of ours (Mark and Monica) and have some adult conversation and company. It was a great night out.


Tuesday, January 09, 2007

What a Way to Start the Day

The girls woke up about 7:10 this morning - nothing unusual. We went into the bathroom to use the potty. Both girls got their jammies off - Sarah first and she climbed up on the potty. When Rebekah took her sleeper off, I heard a bit of a thud (more than the zipper hitting the floor and looked over to see her G-Tube laying on the floor.

I had no idea when the G-Tube came out - but it was sometime in the last 12 hours. After an hour or so, it starts to heal and we wouldn't be able to get it back in. So I wonder, will we be able to get it back in or has it been too long? I called Daddy for help. One on the potty, one who needs a tube put back in and only one Mommy - not to mention the fact that the lubricant we need to use to try to get it back in is in the car (so we always have it with us).

To make a long story short, it was too late. We weren't going to be able to get it back in. Over the last month, we really haven't been using it. We got approval for 4 juice boxes a day (which Rebekah will drink most days) and haven't needed the extra boost of the pediasure. We were looking at having it taken out within the next month or so, so we don't really need to have it put back it. We just need to know if there are any risks that we need to be concerned about. Does she need to be seen or can we go about life as normal and can she eat and drink, etc...

So we needed to put a call into the doc to find out what to do, but which doc do we call - Pediatrician, Oncologist, or Surgeon? None of their offices will be open, so we'll be relying on Answering service and the on-call doc. We opt for the Surgeon's office and waited for the return call. Meanwhile, no breakfast or drink or anything into her stomach - we needed to confirm with the doctor that it was ok. Eventually, we hear that we don't need to be worried - it may seep for a day or so, but she can go about life as normal. Whew!

We now have a little girl with no foreign objects in her body - no central line and no g-tube. What a change from a year ago! One more step toward life getting back to normal.

She has been gaining a little weight, eating a little more and doing a good job of drinking her 4 juice boxes a day and sometime even a little milk or some other drink. It has been good to see.

Rebekah is doing really well with the potty training. She's wearing underwear during the day and even wanted it for a couple of the nights. She's had a few accidents, but I suppose that is to be expected. I think Sarah could care less about potty training right now, although she is very clear that she wants pullups on and not diapers.

Sarah seems to be teething and turning into a monster at different times during the day. For the most part, some teething tablets seem to make a difference. Oh the joys of parenthood.

Please continue to pray for Gage and his family. They have completed another round of chemo and are waiting for his counts to rise and praying for remission so that they can move forward with the transplant.

Also, please pray for Rachel - she is a 6 year old girl that has been battling Ewing's Sarcoma for several years now. Her cancer is growing and they are having to make more tough decisions on treatment and the options are getting smaller and rougher.


Thursday, January 04, 2007

The BIG Announcement...

WHO: Rebekah, Dora, us, and hopefully many of you!!!!

WHAT/WHERE: Make-a-Wish has confirmed plans and is going to send Rebekah (the rest of the family gets to come too) to Ohio's King's Island Amusement Park to get to meet Dora and be a special guest in the park.

But even more important than that, while we are in Ohio we are going to be having a get-together/party of some sort for as many of our frequent visitors to the blog as possible. Rebekah will actually enjoy meeting you all more than she will the amusement park, but Dora is going to be hard to beat. We had tried to work with Make-a-Wish to sponsor travel and several gatherings in different places throughout the country to meet you but that just didn't fit into their picture so they are doing the amusement park and we are on our own for the party. One of our frequent visiting friends has agreed to help "host" the party. We were hoping to have some more details worked out before putting this out, but they will be forthcoming.

WHEN: We are flying to Columbus, Ohio on May 21st (2007) and returning on May 31st (2007). We are expecting that most of the first week will be at the amusement park and the party will be either Saturday the 26th or Sunday the 27th (Memorial Day is the 27th). The final couple days we will probably be in Northern Ohio until having to return back to Columbus to fly out.

As said, Rebekah LOVES people and it would be huge to meet as many of you as possible. Look at your calendars and if you think we might be able to see you while we are there (especially if you can come to a party on Saturday or Sunday) would you let us know that you are interested; you don't have to locked in but we would love an idea of whether it will be 3 or 30 people. Send notes to "family AT" replacing the AT and spaces with @.

Sorry, it is not that mommy was pregnant - although we were a bit surprised how many of you (including our own immediate family) thought that was it. We have put some thought into this and it would be really hard to have another one after all of this but we'll save some of those thoughts for another post sometime.