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, September 26, 2007

Another First...

Sarah rode the bus to her first day of school on Tuesday morning. Rebekah's bus picked up Sarah, too. So both girls had to be up, fed, dressed, hair combed and ready when the bus arrived. This was just before heading out the door.

Sarah had to be fitted into the "new" seat. I'm not sure what she thought of the seat, but she was definitely excited to be on the bus and have her own seat and not have to get back off once Rebekah was fastened in and ready to go.

Here, the bus is heading down the driveway with both of our precious girls. Mommy and Daddy are both standing at the walk to the house watching both our girls head to school. The dawn of a new era...

When Rebekah got off the bus at school, she had to give her sister a kiss. Everyone commented how "loving" Rebekah was towards Sarah.

After dropping everyone else off, the driver took Sarah to her class. Sarah's class lasted an hour and a half and then she came home on the bus, too. She was sooooooo excited to get to ride the bus. She was excited, too, that she got to go to school. When she got home from school, she had to show me what she had done at school. She had made a scarecrow to hang on a door, so she had to put it on her bedroom door.

Tuesdays, Rebekah has just a half day (without the rest of the Kindergarteners) so she came home in time for lunch. She was just as excited that Sarah got to ride the bus as Sarah was. She wouldn't stop talking about Sarah riding the bus and going to school.

So many emotions, so many thoughts, so many first yet to come...


Monday, September 24, 2007

Happy Birthday Sarah

Yesterday was Sarah's 3rd birthday party. Her actual birthday was back on the 17th but she didn't know that. She got her tractor cake just like she wanted.

We had all of her cousins, grandparents and aunts and uncles (short only Uncle Chuck)over for grillin, cake and ice cream. It was absolutely wonderful to have the family together. The kids all played inside, outside and everyone had a good time.

Mommy has spent the last week getting ready. Cleaning the house, making the cake, putting food together, etc. etc. etc. She did an awesome job but is a bit wore out.

Of course there was lots of presents and big sister Rebekah did not miss a chance to get in on the action. Rebekah did have a bit of a hard time dealing with the fact that most of the presents were for her sister and not her. Rebekah kept saying "my birthday, my birthday."

Clearly cousins Michael and Jacob were having a good time:

Who wouldn't have a good time with something that makes LOTS of noise? Those did go home with them didn't they????

And finally, a rare shot of daddy (thanks Uncle Mark) while Sarah and daddy got to make "mi mi" (music) together on more noisemakers.

I don't know why it strikes me as funny or cute but I think it is clear that Sarah has this gift/exchange thing down already. She got a pair of Dora shoes from Grandma A that she absolutely loved but they were just a tad bit on the small side. As Grandma A was leaving Sarah ran and got the box and brought it outside and handed it to Grandma saying "too tight, take 'em back please." Today she already wants the new ones!


Thursday, September 20, 2007

In Loving Memory of Baby Lexie.

No words that I can think of could replace those of a mommy who has just lost her little girl:

"God took my baby home at 6:00 pm this evening. I really don't know what to say, so I won't say much. I want you all to know that she passed away very quickly and peacefully. She took 2 deep breaths and was taken home to be with her grandmas, grandpas, friends, and aunts, uncles, and all the wonder that awaits in glorious Heaven.

My angel is now in Heaven. Wow. I know that she is in peace, but Good Lord, it hurts to know that she won't be snuggled in my arms as we sleep tonight. That's my favorite part of the day. Holding her on me while we slept and well, holding her all the time really. Hee!


Our hearts and prayers are with you Robyn and Chris and we know that Lexie is rejoicing with her family that have gone before her as well as with all the other kiddo angels also there with God.

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking Please see her blog and thank her for its use.



Just A Quick Moment About Some Other Kiddos

Father/Daughter. This is one of my favorite pictures from Family Camp over Labor Day Weekend. Here you see Mark and McKenna and a wondeful "daddy love" moment caught on film. It melted my heart!

As you read in the last post, daddy was out all of last week for "Ride For A Child" which is a sub-part of Cycle Oregon (a 7 day 2000+ rider bicyle event). Ride For a Child was a group of 37 cyclists and 5 support people that spent the week riding (and supporting) Candlelighters (, a non profit group that supports families with children with cancer. Candlelighters has been a huge blessing to us and daddy wanted to give what we can, time and effort, to try and give back just a little. 8 days and 1250 miles later, we had a spectacular event. Here is Randy (head of Ride For A Child) and Faith, one of the honored kiddos that represented cancer kiddos all around Oregon and SW Washington at the event.

Last night we had another dinner (again, sponsored by Candleighters) at one of our local kiddo hospitals (Dornbecher). While there daddy met two beautiful new families that, unfortunately, have been afflicted. Summer, a 4th grader whose birthday it was yesterday, is three weeks into her ordeal. And Mackenzie, a 4 year old, is 10 days into hers. Daddy was able to spend some social time talking with these families and they were both really REALLY nice folk. Please keep them in your thoughts and prayers as they start their journey.

Rebekah is getting into the routine of kindergarten on top of all of her therapies and other appointments. It is non stop for her, for mommy, and therefore for Sarah and I too. And now Sarah is also getting just a bit of speach therapy along with Rebekah. We are not sure when this whirlwind will end, and we have to keep reminding ourselves that we should be grateful to have the opportunity to do so much.

As we have said before, we hope you all truly realize that your kiddos are special gifts - even on the worst of days. Feel blessed to have them in your arms every day and take a moment today to give an extra hug and hold them a bit longer than you otherwise might for tomorrow they could be gone.


Thursday, September 13, 2007

When it rains, it pours...

What an interesting week it has been. Friday morning, Daddy left with the camping trailer (much to the girls' dismay) to help with Ride For A Child. Ride For A Child is a group of Candlelighters (support group for families with kids with cancer) riders who are participating in Cycle Oregon. Cycle Oregon is a 7 day bicycle tour with 2000 riders. Somewhere around 40 of them are part of Ride For A Child riding in honor of children who have been diagnosed with cancer. He'll be home late Saturday night or early Sunday.

The girls and Mommy have been trying to take it easy although we have had our busy times. Friday night, Grandma M (also known as Grandma BooBoo) called to invite us out for breakfast Saturday with her and her brother and his wife who were stopping by on their way through town (they live about 4 hours away on the other side of the mountains). I told her I wasn't sure if we'd make it and that it would depend on how the girls were doing in the morning. The funny thing is that Daddy was near their house with the tour.

We did make it to breakfast and then afterward the girls played at Grandma's while Mommy and Uncle Chuck went to visit Mommy's Aunt Lucile. She is not doing well. I don't know that she even knew we were there. She was diagnosed two years ago with ALS and it has taken its toll on her.

After that, we headed home for a nap before heading to Grandpa and Grandma C's for dinner. It was a wonderful mean and enjoyable time. The girls had fun playing and getting Grandpa and Grandma time.

Sunday was a stay at home day. I wanted to make sure that Rebekah got enough sleep for a full week of school. As I put the girls to bed Rebekah had a low grade fever. She didn't go to sleep very well. I wasn't sure whether school would be a good thing or not.

Monday morning, she woke up with a low grade fever once again. I debated sending her, but decided to go ahead. About 2pm, the special education teacher called and told me that Rebekah wasn't feeling well. After lunch she went back to class and laid on the floor and said she wanted to go night night. They took her upstairs to the special ed classroom and she had been sleeping off and all since then and she was running a 102 temp. So I headed up to school to pick her up. I managed to get there about 5 minutes before school was letting out so I had to deal with all the extra traffic. But I did manage to find a parking space. We came straight home and I got Rebekah some Motrin and put both girls down for a nap. Rebekah slept for another two hours.

We (the special ed teacher and I) decided that Rebekah would stay home Tuesday (which is not a regular Kindergarten day but a half day of "extra" help) and see how she was doing in the evening before deciding about Wednesday. So Tuesday, we all (Mommy and the girls that is) stayed home and had an easy day. Rebekah woke up fever free and had a good day. When I put her to bed, she was running a low grade fever again. I called the special ed teacher (like she had asked me to do) and we decided to see how she slept and how she seemed in the morning and consider sending her even if it was only for a half day.

Wednesday, she woke up and seemed fine. I sent her to school with a lunch (just in case). I called the special ed teacher and let her know that I had sent Rebekah to school. She said they would keep an eye on Rebekah and call me around 11 to see how she was doing and whether they thought she could stay or should come home. Well she made it through the day. Sarah and Mommy ran a few errands close to home, so that we weren't too far from home if we got a call to come and get Rebekah.

Again, Wednesday night when I put her to bed she had a low grade fever. Once again, I had to decide in the morning whether it would be wise to send her or not. She seemed fine this morning, so off she went to school. And again, she made it through the day.

Daddy called Wednesday morning not feeling well at all (and that is quite an understatement). He needed to be in Court that morning so he had taken a break from Ride For A Child and had some friends covering for him on the ride. By noon time, he was feeling a little better. He still isn't back to normal, but seems to be feeling better a little at a time.

Today seemed to have been a bit interesting at school. They had a fire drill and Rebekah did fine with the drill. When they came back in, she bonked one of the other kids in her class and that set off a nose bleed. So she went down to the office until they could get it stopped, which took about 10 minutes. She was saying she was hungry before it was lunch time, so they made the decision to keep her from PE and eat lunch early instead.

When Rebekah came home from school today, she wanted to eat. When I fixed her something to eat, it wasn't the "way" she wanted it so she threw herself on the floor and started her nose bleeding again. After getting the bleeding to stop (at least mostly), I put her down for a nap. She fought the nap, but definitely needed it and did eventually fall asleep.

Meanwhile, Sarah seems to be a little "off". She may be coming down with something. Today, while Rebekah was at school, Sarah and Mommy did some shopping. We saw a tractor cake pan and she has now decided that she wants a tractor cake for her birthday. Mind you, she has been telling me for two months or so that she wanted a Dora birthday cake. I told her that I wasn't going to buy the tractor pan today and that if she still wants a tractor cake in a few days I would consider buying it. We'll see how that works out. Tonight, she was telling me again that she wanted a tractor birthday cake. The other thing she wanted was Mickey Mouse plates. Her birthday is next week and we'll have a party the following weekend, so we'll have to see what she really wants.

We have a meeting scheduled with Sarah's new school for next Thursday. It sounds like she will be in class Tuesday mornings for an hour and a half. We'll know more details once we've had the meeting, but I expect she'll start soon. And, on top of that, Sarah will be starting speech therapy with Rebekah's therapist next week. It will make for very long days. After we pick Rebekah up from school on Monday and Wednesday, we will head to downtown portland for therapy for Rebekah and then Sarah. We will be done at 5pm and have an hour drive home (possibly more with traffic). Rebekah will be one tired puppy by the end of the day without a nap other than possibly a short one in the car.

I've been fighting a little something and I'm not sure if it is just allergies or actually a cold. So that has been fun.

Katie called this week and has strep throat, so she wasn't able to come at all this week.

Grandma M's house alarm went off this week and we got a phone call from the alarm company saying they were sending the police. That was Monday while everything else was happening. It was about the time that she should be getting home (she could have been home or it might take another hour), so I didn't know if she was home yet or not, but she wasn't answering the home phone, her cell phone, or her work number. Finally, a little more than an hour later, I did reach her at home. When she arrived the police were still there. Nothing was out of place. It appeared that the alarm that faulted had a battery that went from ok to dead quickly.

We've all been missing Daddy. The first several days he was gone, the girls would ask me several times a day if Daddy was coming home. I told them it would be a bunch of days before he would be home and that he was helping people. They talk about Daddy every day and they know he is in the camping trailer and helping people. Daddy has been calling at least once a day to check in. It has been an emotional week for him, being away from us and being plunged into the cancer world once again. Each cancer family has their own story and he has been meeting a few this week.

The first part of the week, we had temperatures in the 90s. The air conditioning has been very nice... We're still working out some of the bugs, but it is certainly better than we had before. Now we're going to have highs in the 60s and 70s.

Lately, the girls have been playing "going to the beach". "The beach" is in the girls bedroom and they will take their "beach ball" and their sunglasses, etc... and play in there. Some days, they will take naps in their "beach chairs" aka their beds. Now the bedroom has also become the "upstairs playroom at Grandma's house". Too funny!

Like I said, when it rains, it pours...


Thursday, September 06, 2007

The First Week of School...

Tuesday was a "meet and greet" day for Kindergarteners at school. So we had our time slot and went with a few other students to meet Rebekah's teacher. She found her chair and her cubby where she can put her backpack, lunch bag and coat. Her cubby not only has her name but a squirrel as well. She got to put her school supplies away (into the bins with all the other kids' supplies) and got to listen to a story and color/glue a picture. Dad and Mom had already met her teacher in the spring at our IEP meeting. We, did, however get to meet one of the speech therapists as well as the two aides that Rebekah will have - one in the morning and one in the afternoon. So that was good. Then we met with the Special Education teacher and saw where her office is. Rebekah seemed to be "at home" at school.

Wednesday, Mommy and Sarah took Rebekah to school. We walked with her (and her AM aide) into the classroom. Sarah carried (or really she drug) Rebekah's backpack into the class while Rebekah brought her lunch bag. I asked Rebekah if she remembered where her cubby was and she slowly headed in that direction. Meanwhile, Sarah saw the cubby's and headed for them and started looking for Rebekah's name. I believe they are in alphabetical order and she started at the A's. Anyway, she walked all along (3/4 of the way) until she found Rebekah's name and put the backpack away. Just about then, Rebekah got there and put her lunch bag away. Mommy snapped a few pictures and then Sarah and Mommy headed out. Sarah broke down and didn't want to leave. It just about ripped Mommy's heart out listening to Sarah. Rebekah, on the other hand, seemed to do just fine.
Rebekah (at home) showing off her Hello Kitty lunch bag.

Rebekah and Sarah after getting out of the car at school.

Rebekah in her classroom (reaching for her nametag).

While Rebekah was in class, Mommy and Sarah ran a bunch of errands since Mommy didn't want to just sit at home and wait and think too much about Rebekah's first day. We made it home in time for Sarah to get a little bit of a nap before we needed to go pick Rebekah up from school. We picked her up and it sounded like the day went well... She did a good job of listening and paying attention and doing what the teacher asked. She was starting to get tired by the end of the day. She didn't eat much lunch - there were too many other things to watch and pay attention to, etc...

After school we went to speech therapy. We didn't have any idea how she would do with that. She ate some in the car on the way and took a short nap (10 minutes or so), so she wasn't totally hungry or totally exhausted. She did decent during speech. Could have been better and could have been a lot worse. We will have to see how it goes, but we may be able to keep going.

Thursday, today, Rebekah rode the bus to and from school. Rebekah has a different bus driver than she has had before, but someone we know (so that makes us feel a little better) and now she has a few other kids on the bus with her. Before, she was always on the bus by herself. She was excited to ride the bus. She fell asleep on the way home. Once she made it home, we headed into the bathroom. She noticed the bandaid on Sarah's knee and was telling Mommy that she needed a bandaid on the booboo on her knee too. I thought she was "being imaginative" until she took her pants off and I saw the booboo on her knee. So, after her potty break, with a great amount of "tired" tears we put a bandaid and medicine on her booboo and she got some tylenol to help with any pain.

Then it was time for both girls to take a nap. They were both very sensitive (crying at any little thing) and clearly tired. After a few "I need water", "I need a baby doll" needs met, they both fell asleep and took a good nap. That is a good thing since neither of them seem to have slept enough last night. Bedtime has been rough, too. We have to figure out how to get enough sleep - when do they need to go to bed and when/if they get a nap. Time will tell...

While Rebekah was at class, I took Sarah for her evaluation for special education. As far as Sarah was concerned, she was going to school and that made her happy. She did a good job of cooperating with the testing. Her biggest issue seemed to be her understandability. First, they looked at her articulation (her ability to make the different sounds). Then we moved on to her expressive language (vocabulary, sentence structure, plurals, "ing" on words, etc...) and her receptive language (her ability to understand what is being said). By the end, she was starting to get tired and only partially cooperating.

When her scores were calculated, her articulation was pretty poor - 1st percentile (99% of kids her age score better than she does). She definitely needs some help there. We didn't get to a cap on the expressive or receptive language. In order to find the cap, she has to get five questions in a row wrong. She was scoring in the 4 1/2 year old range and still only missing one or two here and there. That put her well above the curve - above average (or at least at the very top end of average) so we called it good. She was getting tired and she didn't need "help" in those areas.

So, to make the long story short, Sarah qualifies for special education for the articulation. The regional ESD office (where we did the testing) will send information over to the appropriate school and they will contact us to set up a meeting. Once that meeting has taken place, she will be able to start classes. Meanwhile, we wait and try to do so patiently. She will be at a different location than Rebekah - one that is closer to home, so I don't know the staff or the schedule.

They tested her hearing, again, and the left ear passed just fine but the right ear was questionable. Last time we had the same results, so we need to get her hearing tested. It may be nothing or she could have a hearing problem, so we need to have it tested. The ESD office has an Audiology department and we'll see what it will take to get in with them - they tend to run 6-8 weeks out. I may also check with insurance and see how and if they would pay for a screening. One more thing to add to my to do list.

Taking Sarah to do her evaluation, reminded me so much of when I was there with Rebekah. I was pregnant with Sarah at the time... It has been a while. Lots of emotions go along with that. Our family has been through so much since then... The evaluation team wanted to make sure that I knew that I could ask questions whenever and that I was part of the "team", etc... I told them that it wasn't a problem - I would speak up when needed.

Rebekah continues to be excited about school, so that is good. She is off until Monday (no classes on Fridays), so hopefully we can get her (as well as Sarah) caught up on sleep. Tonight was another rough bedtime. I have to imagine that many parents are going through similar things this week.

Please pray for all the kids with cancer. There are so many issues and concerns. They could all use some prayer.

Baby Lexie is home on hospice. Her parents are going through so much right now.

McKenna has finished her radiation treatment and is now back home. She will have more chemo. It wasn't an easy decision for her parents to make and they continue to pray that it is the right choice. When it comes to cancer treatment and decisions - they are never easy. Mommy got to meet McKenna and her family at Candlelighter's Family Camp last weekend. Daddy had met them a while back at the hospital. It was great to spend a little time with them!

Gage has some GVHD (graft vs. host disease) after his transplant and because of his immune system can't be around large crowds (like school). His parents are trying to keep him "busy" and entertained. I can only imagine what kind of challenge that must be. A couple of weeks ago, Mommy talked with Gage's mom on the phone and that was good to touch base.

Josh is starting his 2nd grade year with two big sisters away at college this year. He and his parents and two sisters (the ones not in college) were at Candlelighter's Family Camp. It was good to chat with them and catch up a little. Josh's mom has started her own blog, so check it out if you're interested.

Josiah's Grandpa died of cancer this week. That has to hit very hard. We met Josiah and his family last year at Candlelighter's camp. They weren't able to make it to camp this year. While we missed them, we were thinking of them - knowing that Grandpa wasn't doing very well.

Boey has been struggling with her chemo treatments. It has been rough for her family. They love their new home - thanks to Extreme Home Makeover.

Check out all the kiddo links on the right to see what is going on in all their lives. And please think of the families who lost kids this past year and have the new milestone of "first - first day of school" without their kiddo.