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, June 25, 2006

Weather is Hot, We are Laying Low

Here's the picture we promised from last weekend's Merry-go-round ride - that is JJ riding next to Rebekah.

The temperature yesterday was nearly 100 F, today was a little hotter and tomorrow even hotter. We are trying to stay cool. NO AC makes it a little difficult, but we are doing what we can.

Yesterday, we broke out the swimsuits, swimmer diapers and the wading pool. The girls really didn't want to do much with the pool, though. Rebekah would get her feet wet, but didn't want to sit in it or anything more. Sarah didn't even really want to get her feet wet. We even got out the bathtub boats, but that didn't get the girls into the pool either.

Instead they wanted to swing and play on the playset and we played some with bubbles. By the time we came in, both girls needed a bath.

Grandma C and Grandpa came out yesterday to see us and play with the girls and bring some fresh lettuce from their garden (always a treat).

Tonight, we headed over to Grandma M's for a little while to enjoy the AC and her company and we picked up dinner on the way, so none of us had to cook. Mommy actually got to rest a little bit - she was pretty tired.

We've made some progress this week with eating and moving toward being off the feeding tube. We've been working on giving Rebekah some higher calorie foods (cheetos, whole milk in her cereal, high fat/calorie salad dressing as dip for veggies or cheetos or whatever). She seems to really like the cheetos (not my favorite) and would eat them all day long if given the chance. Meanwhile, I've been trying to limit how much of those high calorie foods Sarah is getting, since she will eat much more than Rebekah if given the chance.

At the same time, the insurance has agreed to cover the Resource Breeze juice drink on a trial basis. We should have some from our home health company next week. Also, they are going to send some Banana Cream PediaSure. Hopefully, Rebekah will like the taste of that better and be more willing to drink it, too. Meanwhile, she has actually been drinking some of the Vanilla PediaSure the last few days. What a change that has been.

Rebekah had a little bit of a melt down this week during her horse back riding. She just wanted Mommy and wanted down from the horse. I'm not really sure what that was about. Then she wanted Sarah to ride the horse, so Sarah got one lap around the arena. Afterward, Rebekah got back on the horse and made another lap or two, but we finished up early because she just didn't seem to thrilled with it and we didn't want to end on an unhappy note. We'll see what happens. Some days, she is just more of a Mommy's girl than other days.

This week will be another kind of quiet one, hopefully. Hope you all are doing well.


Monday, June 19, 2006

Feeding Evaluation and More...

Today, we had a scheduled appointment at the hospital with a Speech Therapist for a Feeding Evaluation. Due to some earlier cancellations, we were able to go in at 11:30 instead of our 12:30 appointment time. Debbie met us at the hospital and watched Sarah, so Rebekah and I could work with Lisa (the speech therapist) and not have to worry about Sarah. Debbie's kids were really upset that they didn't get to see Sarah because they are still in school. Sorry guys!

Rebekah did really well and we got some good ideas. Lisa was really happy with how much progress Rebekah has made since she last saw her. She often saw Lisa while we were inpatient at the hospital. Her comment was that we are in "transition" phase - transitioning from needing the g-tube to taking all of her nutrition orally. She didn't see anything that led her to believe that she couldn't get to a point of not needing her g-tube. That is all good news.

Generally, we are on the right track and should keep doing what we are doing. We have been putting food in front of her and letting her eat, without a lot of pressure. This seems to be a good approach. Offering her foods that are higher in calories is good. Lisa gave me some ideas of higher calorie foods that she might be willing to eat - Swiss Miss Banana Cream pudding, Cheetos, Gerber Fruit Juice Snacks, Resource Breeze, etc...

Resource Breeze are juice based drinks that have as many calories and nutrition as the pediasure products. But, because they are juice based, Rebekah might drink them. She did seem to like the samples we tried - drinking one completely and some of the other. If we could get her to drink three of those each day, then we might be able to drop the pediasure. Now, to see if we can get insurance to pay for them and get them from our home health company.

Lisa also suggested that we not worry about "bad" calories right now. Later, we can work on better food choices as her weight increases and we are not as concerned about weight gain. So, now I can have one set of foods for Rebekah, another for Sarah and yet another for Mommy and Daddy. What joy! And then, there is the appeal factor of food that is on Mommy's plate. You know, the food on Mommy's plate tastes much better than the food on Rebekah's plate (even when it is exactly the same).

While we were gone this weekend, Rebekah did not want her tummy drinks (although I offered them several times each day), but she grazed all day long. I wondered how her weight was doing. After two days of grazing and no tummy drinks, her weight was doing fine. It was still in the range that I consider "good" (37.5 - 38.0 on our scale). That was good news.

Our insurance has maximums for "therapies" which we are rapidly approaching. We are hoping that they will approve more dollars, but not expecting them to. Please pray that the insurance company would approve more dollars. If not, we will need to look at what we can do so that Mommy can work with Rebekah on her therapies with some sort of home program and then meet with the therapists on a monthly basis or something like that. One day at a time...

In addition to the possible changes in therapies, we will be changing her school schedule. We had our annual IEP/IFSP meeting with the school to look at goals for the next year. All in all, it was a good meeting. We will be doing some baseline testing to see where her skills are at currently. The chemo and radiation can have a dramatic effect on her abilities and so we want to know where she stands at this point in time. No testing will be done until July, but at least it is in the works.

Part of the discussion included whether she was in the "best" class for her or if we should consider switching her to another class. We decided that moving her to a class that meets for a shorter period of time each day (1 and a half hours instead of 2 hours) but more days a week (3 instead of 2) might help her. The repetition could help, since she seems to take a long time to process what she is learning. We will try it and have the ability to re-evaluate if necessary. So, she will now be in a class that meets Monday, Tuesday and Thursday mornings. That change, could mean a change to her therapy schedule, if we are able to continue with therapy. We'll deal with that when (and if) the time comes - school doesn't start back up until the second full week in July.


Sunday, June 18, 2006

Happy Father's Day To All

I cannot tell you what a wonderful father's day this is. I am extremely greatful and blessed to have such a wonderful wife and two beautiful children who all delight me daily.

We (Rebekah, mommy and daddy) are at the beach this weekend. That is kind of misleading as we are here working for grandma at a ham radio convention where she is in charge of vendor hospitality. We are not here to go play on the sand (which is just fine with me as I am not a big fan of the sand!) Last night we went out to dinner with a large group of our family and then to the "Boardwalk" of arcades, games etc. Rebekah got to ride on her first merry-go-round. I don't know why exactly but I just broke down in unstoppable tears of joy seeing her go round and round and up and down on that hard plastic pony. It was just a bit of a taste of normalcy in her sweet little life.

After the merry-go-round we walked into an arcade where Rebekah "played" lots of games. What a wonderful age to be able to enjoy the games while sitting in the seat or standing in front of them and just moving the controls while the splash screen plays. MUCH cheaper for daddy and mommy too which is a good thing!

The last two nights have been back to the trailer (in a camp spot Grandma M. got for us down the road) after 10pm. Rebekah tends to break down that late as you can imagine. But once in bed she does go right to sleep. Yesterday morning she was stirring at 6 when daddy gets up. I pulled her into bed with me and in seconds she was out again. I came out to the van to work on the computer (needed the antenna on the van to get internet)and back 2 hours later and she was still sleeping.

Little Sarah is with Grandma A. and we hope they are having a good time.

Look for pictures of the merry-go-round soon - they are still on Grandma M's camera.


Tuesday, June 13, 2006

More of the Same with a Visit from Jeanne and Mary Thrown In

It has been a lot more of the same - school, therapy, play, struggles with bedtime, eating more bites, bolus feeds, not much change on potty training, etc...

Sunday, we had cousins Jeanne and Mary over for brunch along with Aunt Tiffany, Jacob and Michael, Grandma A and Grandma M. Jeanne and Mary are retired and live in California and are on their way to Whidbey Island, Washington where they have some property and will spend most of their summer this year. It is always good to see them and I'm glad they were able to come.

Jeanne and Mary brought some gifts for the kids. The girls both got stuffed animals, which they have been dragging back and forth between the playroom and bedroom. If they are sleeping they want their animals in bed and if they are playing then they want their animals in the playroom with them. This morning, Sarah even wanted her stuffed animal to eat breakfast with her. I told her she needed to take it to the playroom and then come eat, because I didn't want it to get dirty from breakfast and then have to be washed.

Grandma A brought out several outfits for both of the girls, including Dora nightgowns for each of them. She had found a sale on clothes and couldn't help herself. The girls wanted to wear their Dora nightgowns to bed that night. In Rebekah's attempts to not go to sleep like a good girl, she decided that she needed a new diaper. She took hers off and got several more out of the drawer and tried to put one on. However, she doesn't have the hang of putting on diapers and she ended up peeing all over the bed, which included her nightgown and her Dora blanket. Boy was she upset when she had to get new jammies and couldn't have her Dora blanket because it needed washed. Tough lessons for a little girl to learn.

Rebekah has been asking for tummy drinks and saying "all done" which I think she means that her tummy is empty (she often uses "all done" to mean empty). I had figured that we needed to wait at least 2 hours between bolus feeds, so that she had time to digest it. But she has been asking for tummy drinks ans saying all done at an hour fifteen or an hour and a half. After a couple of days of that (where she was being pretty consistent), I started to believe that she might have an empty tummy and really did want food (and wasn't just trying to get out of whatever Mommy had asked her to do).

So when she was asking for tummy drinks at bed time and it was an hour and a half or so after her last bolus feed, I checked to see what was left in her tummy (with the G-Tube, I can do that). Low and behold, not a drop was left in her tummy. She probably was hungry. So, I gave her another bolus feed. Now I know that I don't have to wait 2 hours between feeds. That can allow me to get a little more into her and maybe add to her weight a little.

I am still trying hard to encourage her to eat, so I don't want to give her a bolus feed shortly before a meal or a snack. Most often, when she says she is hungry like that, I'll offer her a snack first and then she can have tummy drinks. All in all, I don't like the fact that she needs the tube feeds, but I'm very happy in how much she is eating and how we continue to see improvement so I'm not "down in the dumps" about it.

Bed time continues to be difficult. Last night, they lost "Dora" privileges (as in, no Dora on TV). They threw pillows and blankets and stuffed animals on the floor and they lost those too. I did agree to give them back a pillow each and put them back in pillow cases for them, but they didn't get their blankets or stuffed animals back. Rebekah was ok with having her sheet and regular blanket on her, but Sarah wanted nothing to do with it and laid in bed without any covers on. Maybe, they will start to figure out that throwing things onto the floor is not ok. (And most of it is intentional.)

Rebekah wants so much to be a big girl. Today, she picked out her own clothes. She decided that she wanted a Daddy Fire shirt (dark blue Fire Department shirt in her size), khaki pants and her pink Easter sweater (because she was cold). Quite a combination, but since that is what she wanted to wear that is what she is wearing. Besides, it is a stay at home day, so no one has to see her...


Wednesday, June 07, 2006

Some Good Days

It has been a good few days. Neither of the girls have been requiring pain medications, which is good. Rebekah has been eating and tolerating her feeds. Still not much luck with potty training.

Last night, it was about an hour after bedtime by the time we actually got the girls into bed. Horse back riding, dinner and a bath just took longer than usual. Although it was a later than normal bedtime, they both cooperated very well and went right to sleep. That got me thinking that perhaps I was trying to put them to bed too early. So tonight, I kept them up for an extra hour and they seemed to go right to bed again. Maybe, just maybe, that is the trick to getting them to cooperate with bed time.

Monday night, however was NOT a good bedtime. They did not want to go to sleep. And then Rebekah pulled Sarah's hair and pulled a clump out. She got some severe talking to about that. I wasn't sure (and to some extent, I'm still not sure) if they will be able to continue to share a room. If Rebekah continues to be "rough" with Sarah and they pester each other at bed time, then they will need to be separated. We will have to see how it continues.

Rebekah seems to be figuring out our routine. Today, she was pretty sure that it was a school day. In addition, she knew she would need her backpack and we would go bye bye. Next Monday will be her last day of school until July and then there will be 2 and a half weeks of school and then another few weeks off before the regular year starts the last week of August. It will be a sad time for Rebekah, especially if she is truly learning the routine. I'm sure that we will find other ways to occupy our time!

Part of our night time routine includes saying prayers. Well, the girls have determined that they need to kneel in front of Sarah's bed for prayers. We had been sitting on one of the beds. Also, Rebekah has started saying the prayers for us. It is mostly unintelligible to me, but she has figured out that she needs to end with Amen. It is really rather cute to watch. And they certainly make sure that we get our prayers said.

She is using more and more words. Today, she actually strung two words together without any prompting. I can't remember what it was she said, but it impressed me. During her horse riding therapy, she was getting out some S and F sounds. F's are completely new and S's we haven't heard in a while. It is always good to see some progress.


Monday, June 05, 2006

cancer Survivor's Day

UPDATE: Here are the girls at the water fountain, one of Rebekah's favorite places in the hospital. She can find it from ANYWHERE on the hospital grounds! Don't know what that face is on Rebekah????

Wow, 77,000 visitors in just over a year. You all continue to bless us abundantly and even though we don't post every day are are still inspired by your faithfulness.

Yesterday, Sunday, was cancer Survivor's Day. The hospital has an annual afternoon with booths, entertainment, food etc. Last year it was just after diagnosis and we were in for treatment. We remember because Rebekah won youngest survivor and the Polaroid that we took straight out to the trailer sitting in the parking lot stayed there for the last year.

Again, Rebekah was the youngest Survivor there with friend Warren a close second. Rebekah had the choice of gifts from a fully loaded Wagon and she choose a basketball saying "Ball ball ball ball" over and over again. She had to have it opened and started to roll it around all over the hospital. It was kind of a chagrin to some of the older kiddos who came behind her, especially the boys, and had their choice barbies and other baby dolls... oops.

We had gotten to the hospital a little early and went upstairs to visit the nurses. It was nice to see Betsy, Elizabeth, Tory, Lisa and some others that we don't know as well. Rebekah walked all around dragging Sarah by the hand and pointing to different things. She was very much showing Sarah around; it was cute.

One question that got asked a lot by the nurses and even by some of the other Survivor's downstairs was "what is it like coming back here?". There is no way that we can put the true feeling into words but can only say that it is weird. In some ways we feel like we are comming "home". We don't WANT to be there but it is comfortable. We obviously don't want to STAY there but yet when we are there that is what seems right. We have spent so much of our life there in the last year that we just feel like we should be there. Daddy says it is like coming back to work after a long vacation and mommy says it is like going to grandma's house or a second home even though this one is not good. It must have some effect on us because it has even gotten daddy back in a posting mood.


Saturday, June 03, 2006

Here's What is Going On...

Life is continuing at what seems like the speed of light. Any time we go into town, Rebekah talks about school. She's going to be disappointed the middle of this month when she will be on break from school for several weeks. Meanwhile, we continue with Speech Therapy, Physical Therapy, Occupational Therapy and Horse Riding Therapy. She enjoys them all! And she is making improvements, even if only a little bit.

She continues to eat fairly well. When we started the G-Tube feeds (August 2005), she required 5-6 cans each day. At the end of her treatment (February 2006), she still needed 5-6 cans each day. As she eats more, we've slowly dropped the volume of the g-tube feeds. These days, 3 cans a day seems to keep her weight pretty constant. It shows that she is eating much more today than she was in February. I am frustrated that she still needs the g-tube feeds, but at the same time I have to remind myself that it takes time and we are seeing improvement. For that, I am thankful. We still have a long way to go. One day at a time...

As much as I would like it, I don't expect that we will ever get to a point where we don't have some reminders of the cancer she had and the treatment she has endured.

Most of Rebekah's feeds lately have been bolus feeds without any dilution. And other than a couple of times where she threw up a very small amount (not more than a mouthfull), she has been tolerating it pretty well.

Bedtime continues to be difficult with both girls in the same room, but we are managing. I haven't had to remove Sarah from the room in a couple of weeks. But, bedtime can be pretty stressful with both girls getting out of bed and pulling clothes out of their drawers and pestering each other.

Potty training isn't going anywhere right now. Rebekah doesn't want to sit on the potty and some of the time wants a diaper instead of a pull up. One day at a time...

Aunt TT and the boys came over yesterday for a while and that was great fun. The kids enjoyed playing and Mommy and TT got a chance to talk. All of the kids ate like horses at lunch. I thought I had made well more than they would eat and they pretty much ate everything and wanted more. That was exciting.

Sarah has some teeth trying to come in, so she has been a bit on the cranky side. I've been giving her teething tablets and that seems to help a bit.

I've cut back on Rebekah's "owie" medicine (Tylenol & Motrin) and not just giving it to her every time she asks for it. Often, when I tell her "we're not doing owie medicine right now" she goes back to playing contentedly. So, I'm guessing that she doesn't really need it. Now, if she asks for it several times in a row and gets really upset when I say no, that is probably another story and she'll get a dose. Sometimes, she gets the H20 medicine (water in a syringe) and that seems to satisfy her. She still gets her claritin daily and septra (antibiotic) 3 days a week.

Both girls have taken to eating cereal in the morning. And they both want Mommy's cereal not cherios or life cereal or something similar, but Mommy's with different textures and maybe fruits and nuts. And they both want milk in their cereal and spoons, although Sarah is fond of eating her soggy cereal with her hand instead of the spoon. I'm not sure which of them has better control with the spoon, although they have both improved. Also, both girls will drink from a big girl cup (regular cup with a little bit of liquid in the bottom) and do a pretty good job. Sometimes they actually keep their shirts dry.

There are so many ways that Rebekah's and Sarah's developmental ages are equivalent. I expect that Sarah will, before too long, surpass Rebekah. In many ways that will be a sad time (really, it already is), knowing that there are nearly 3 years difference in their ages. I hope, however, that Rebekah will be challenged by her sister at that point and that it will help to encourage her growth in ways that therapy and school cannot. All we can do, is wait and see and take each day as it comes.

We had a chance last night to go out to eat with some friends (Mark and Monica and their girls Katherine and Grace). That was a nice change of pace. The girls got along well and it was enjoyable to have some social time with friends, which seems to be pretty rare for us. While we sat in the restaurant, there was another family with a small child that was sitting near us. A couple of times during dinner, the child was making "happy" noises and Rebekah was saying baby and looking around. As they were leaving, they stopped and asked us if we were related to Scott's mom. They knew Scott's mom and had been praying for us for quite some time and wanted to say hello and see how Rebekah was doing. Once again, we are reminded how so many people who we have never even met have been praying for us and thinking about us.

Sarah seems to be be becoming more of a Dora girl than Rebekah - as hard as that is to imagine. Sarah always wants to watch Dora, Rebekah sometimes would rather watch something else. The other day, one of the two Dora blankets was in the wash. When it came time for bed, I went to put the clean Dora blanket on Rebekah and Sarah really started to object. Rebekah told me that Sarah could have it. What a sweet sister.