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.

Tuesday, July 31, 2007

Fire Department Picnic

As many of you know, daddy is a long time volunteer of our local fire department. Last night our department had their summer picnic in a local park and the girls got to come eat (which they did very little of) and play on all of the playground equipment. Both girls were very interested in the softball game that was going on:


Monday, July 30, 2007

From The Past To The Present

We could tell you how wonderful the weekend was with lots of kids around, and seeing lots of old friends and meeting new ones but why don't we let the smiles do it for us:
Rebekah in the middle of games with Sarah and mommy in the background.

Rebekah playing with Baby Enrique. She has such a mothering instinct and loved him dearly.

All the kids in the band. Sarah had to learn that even though your sister makes noise when you hit her, she is not a percussion instrument.

Isaac enjoys a homemade, fresh, hot donut that he decorated himself. Mommy and daddy enjoy making donuts for the whole group. This year we made almost 300!

Sarah wears her donut.

Look at that Cheezy Smile. This is what we get when she knows we are taking her picture.

(A quick reminder - you can always get full size blowups by double clicking the picture itself)


Saturday, July 28, 2007

A Quick Look Into The Past

This weekend we are at the Northwest Adoptive Families Association (NAFA) campout. In the middle of this page: is the post from here last year. Hopefully later today we can post some pictures of this year and you can see how things have changed (or how they have stayed the same.)


Thursday, July 26, 2007


...what a week.

Yesterday (Wednesday) Grandma M. was released from the hospital - to a Rehabilitation Center. She fell and broke her leg seriously on Sunday coming home from camping and was ambulanced to the ER. Monday was surgery with one plate and 8 screws put into her leg. Tuesday and Wednesday were hospital recovery and then a trip to the Rehab Center. We are not sure how long she will be there, only time will tell. Mommy and Rebekah got to go see her today and she seemed to be settling in okay.

We were supposed to be off camping today with a wonderful group that has been very supportive of us as a family and daddy's practice as well over the last several years. Northwest Adoptive Families Association. With all that was going on and us not being able to be home or get as much work done the beginning of the week we had to put that off until tomorrow. Today was spent by daddy working in the office and then working on the trailer.

It has been 18 months since Rebekah was in treatment. That means 18 months since living (and working) in the trailer in the hospital. That also means an entire camping season last year with the trailer still being set up like an office. Today we removed most of the remaining office items from the trailer. It is a scarry feeling and quite honestly I am afraid of some sort of jinx that might come with it. Especially since Rebekah's next set of scans are coming up in two weeks.

Anyway, we will be off tomorrow morning for a few days. The weather looks like it should be good and the girls are excited. It should be a good time.


Monday, July 23, 2007

ANOTHER Trip to the Emergency Room

and yet again, it wasn't for our kiddos.

As we were on our way home from church yesterday we received a phone call from Grandma M. The lack of stress in her voice did not go with the urgency of the situation. "I have fallen and broken my leg. I already called 911 and, oh, here comes the fire truck..." We turned around and headed her way immediately. Daddy got on the phone and made sure he knew which ambulance was coming to her (we already knew which fire crew) and knew she was in good hands.

As we got to Grandma M.'s house they had loaded her up and we about to depart. Daddy was given the courtesy by his fellow firefighter/emt's of a scene report including all that was done (and how bad it was...) and they were off. Grandma A came and got the girls and daddy and mommy were off to the hospital as well.

Sparing you the gory details, her leg is broken pretty bad and she will need surgery. They admitted her late last night and after making sure she was safe and sound in her new room (after about 5-6 hours in the ER)mommy and daddy finally got home about 10pm. The girls stayed with Grandma A and I am sure are having a grand time. Today mommy is back to the hospital to be with Grandma M. and figure out all the surgery things.

Another day in the life. Please pray for Grandma M. so she can experience the healing power of prayer.


Friday, July 20, 2007

An All Night Trip To The Emergency Room

but no, it wasn't with either of our kids.

Meet Rachel. Or actually remember her. We stayed with Rachel (and her family) while we were in Ohio on Rebekah's Make-A-Wish trip.

Daddy went to meet them at the airport as they were flying through Portland on their way from Ohio to Hawaii for vacation. As they left Ohio yesterday morning Rachel informed them about a problem with her arm that she was having after doing a back-bend the night before. They kept it as immobile as possible throughout their flights and when they landed last night, about 11pm, daddy took them to their hotel and then continued on with Rachel and her mommy to our beloved Emanuel where Rebekah has spent so much time.

Several hours later Rachel had a cast that can be removed for some minor activity (such as diving?) while she is in Hawaii. We got them back to their hotel room at the airport by about 3:30am - just enough time for an hour or two of sleep before they had to be back to the airport for their trip on.

To the Teleis': We wish you guys the best vacation possible, and even if it was a weird 8 hours or so we are glad to see you here in Oregon!


Thursday, July 19, 2007

Just When You Thought...

We know so many families that get done with treatment and leave. They turn their back on their past and try and get as far away from the "cancer days" as possible. This is also true for families who have lost a child to cancer; they obviously want to put it all behind them. Well let me tell you first hand that you cannot put it all behind you, you cannot forget, and its pretty darn hard to pretend it didn't happen. No matter what happens, no matter how far you try and run from it, no matter how far you think you have distanced yourself from it, if you look over your shoulder there it is. cancer has changed our lives so much and effects our lives so much each day that we really cannot imagine "getting over it".

One of the things that we have a heart for is sharing with and serving other families fighting childhood cancer. And one of the ways we do that is through volunteering for an awesome organization that helped us a lot during our treatment, Candlelighters. Our local chapter of Candlelighters is very strong and provides many many resources and support opportunities to families. One of those opportunities that we have comitted ourselves to is providing meals for inpatient families and their kiddos at the two local pediatric oncology hospitals. Last night was one of those evenings. We have come to be close to quite a few families who continue their struggle. Sometimes it is hard watching, sharing, caring and sometimes we understand those that can't emotionally come to the hospitals or don't want anything to do with other kiddo cancer families; but we couldn't imagine not being able to share a truly empathetic shoulder.

Last night during one of our dinners we met Jenessa and her family. They just returned to a new home built by the ABC show Extreme Makeover (which will air sometime later this fall). We knew about them but never had the opportunity to sit and talk with them - until last night. Jenessa, known to her friends and family as Boey, is an eight year old that had a Sarcoma very similar to Rebekah's, also in her face. Like Rebekah, Boey's cancer seemed to be gone after their first year of treatment. Unlike Rebekah's, however, Boey's cancer relapsed in May of this year and it is in multiple places throughout her body. You can read the details on her site by clicking on her name above.

As we sat and talked with Boey's parents last night we found that we had many MANY things in common - unfortunately. We felt like we were talking with old friends even though we had just met. We also felt like we were right there in this battle again; just when we thought we were over things.

This is rambling and, like I have so many other times, I apologize. But I have told you all of this so you can more fully understand us, and also so you can undertand what led up to sitting here at 3:30am in the morning crying my eyes out. In meeting with new families you learn new cancer related links, stories, videos, etc. And meeting with Boey's family was no different. In last night's conversations we learned about a video project done by someone that included some of our local kiddos in it. And from watching that video I found links to a few more and I will post some of them here. Please be warned before you click on them - you cannot get through any of them with dry eyes.

Pediatric cancer Awareness
Brett's Ride For Rabdo
The Story of Childhood cancer

Just when we thought we were over certain things, something like these videos makes you realize that there is no getting over it as your heart continues to ache and your brain continues to ask "why?" And I, daddy, have to admit that through these tears I can do nothing right now but call out "Abba, Father, Why?"


Monday, July 16, 2007

Catching Up

It's hard to write every day (or every other day even) as we really don't feel like there is that much going on. And then we put together emotional ramblings like these - be warned.

Last week the heat was up to 110 degrees here. Without air conditioning that gets hot, especially in the girls' playroom that gets much of the sun! We think that is contributing to some of the behavioral difficulties both the kids and mommy and daddy have been dealing with. We are working on that and have received several quotes from several different contractors. After the first quote we figured there was something wrong with the company. Then we got another and it was about the same. Talk about sticker shock. We are still trying a few things and have a few avenues we are pursuing but we are not sure how that is going to work out.

Today mommy took Rebekah to speech therapy. When they started therapy some contractors started on the building with jack hammers. It was so loud that it was hurting Rebekah's ears. After being warned by the audiologist and the ENT that she is susceptible to damage from just such loud noises that was just not going to happen. Mommy packed her up and they left. The came back to their aunt and cousins for some play time before going back to the city for physical therapy. It was a good time with the cousins!

Over the weekend we had some really high highs and some very low lows. We got to go to Grandpa and Grandma's for a small family gathering. Aunt TT and the girls cousins were there as were some family friends who have a couple of kiddos just a few years older than Rebekah. Grandpa and Grandma have a huge house with a huge yard and lots of play areas. All of the kids took great advantage of that. Grandpa made some wonderful steaks on the grill and we had fresh berries for dessert. It was spectacular food, friends and family and it was wonderful to get together.

At the same time daddy had some really difficult emotional observations. Rebekah wants SO much to play with the other kids and to be included. She can't keep up with them when they are running and she is left behind. Rebekah was repeatedly trying to ask the other kids (both the older ones and her little cousins who are a year younger than her)to wait for her when they were running around, or "come" to her when they would leave her behind. Mommy and daddy knew what she was saying but no one else did and obviously the kids didn't have any time to pay her any attention no matter how much she tried.

When the kids were indoors they were running up and down stairs and rough housing. Generally just being kids and having a great time at it. Again Rebekah wanted to be involved and tried really hard to do what they were doing. But because of Rebekah's balance (or lack thereof) and fragility she couldn't handle being bumped, pushed or generally deal with the rough housing. She was knocked down and getting hurt. Once things started back outside again Rebekah still wanted to go play outside like the other kids and we took her out, but even with adult supervision the steps, gravel, concrete slopes of the yard etc. that were nothing to the other kids proved to be too much and she fell down and cut up her knee and elbow pretty bad and then spent the rest of the night screaming and crying in mommy's arms.

It's really hard for a daddy to sit back and watch his little girl, who should be so much more advanced than she is, want to play with other kids and not be able to keep up; trying to tell them she wants to play with them just to have them run away from her having fun doing all the things kiddos do without her; and to want to be accepted by the other kids but being repeatedly ignored as she tried to be like them and try to communicate with them and them not understand her. Adults are willing and able to try and understand her despite her difficulties and Rebekah likes communicating with them. But kids are who she would really like to play and communicate with and they just don't have the ability or attention span to deal with her. It's not their fault in any way at all, but it is still painful to Rebekah and very painful for mommy and daddy to watch.

By the end of the evening we were so blessed and uplifted to be with our friends and family and yet so emotionally drained and hurt watching Rebekah's inability to be "normal." And then, as if that were not enough, daddy got back to the computer and checked into one of the groups he belongs to and there was a conversation going on in which someone made the comment that someone else was "so stupid they should be wearing the colored helmet and riding the short bus." They had no way of knowing about Rebekah or how hurtful such a comment could be... Especially after the day that we had, daddy was particularly sensitive. We sometimes just don't know how what we are saying is going to affect other people but maybe we should think about it a bit. And adding to the pain is the fact that you really can't share parental feeling like this with just anyone so they sit and build up; it's not like you can pick up the phone and call the few friends you still have left after this whole ordeal and say "let me tell you how much it hurts to watch my daughter not being able to be 'normal'." I guess thats why you all get it here.

Thank you for letting us vent. Please pray for strength (and cooler weather) to make it through the rougher times!


Tuesday, July 10, 2007

Balance Issues

I finally got a chance to talk to Rebekah's ENT late last week. I called him again on Thursday (since I hadn't heard from him in over a week) and he called me back shortly. He didn't have Rebekah's chart in front of him. There are many things that can cause balance issues - fluid on the ears or some brain based issues. He thought (although he couldn't be sure) that Rebekah's reports indicated some possible brain issues that might be the reason for the balance problems. I really didn't want to hear that. He wanted to see her latest two MRIs so that he can look for other possible causes for the balance issues before we make any decisions about what to do. So, I called Emanuel and had them send him a copy of the latest two MRIs. They should have gone out Friday, so hopefully we'll hear from him soon. Meanwhile, we wait... And try to do it patiently... There is likely no simple solution. I hate that!

I'm trying to push hard on potty training. It has been difficult. They are both pretty hit or miss. I wish it were a much easier process. We just have to take things one day at a time.

Right now, we are having a heat wave - our thermometer at home said 110 today. Very hot and very miserable. Tomorrow is expected to be about the same. Ugh! The weekend with temperatures in the 80s sounds pretty good right now.

Thanks for checking in.


Thursday, July 05, 2007

Happy Birthday Mommy...

Yesterday was July 4th where our entire county celebrates mommy's birthday. We had a small gathering at our place which the girls absolutely love. Anytime that people will come play with them makes them very happy!

The weather was beautiful (thought a tad bit hot at 93 degrees but there was a slight breeze some of the time) and we spent most of they day outside. There was food, fun and lots of playtime. The kiddos got to ride the tractor, the electric Dora quad, and cousin JJ even got to ride the little motorcycle.

Here is friend Mark driving his daughter Kathryn and Sarah around in the wagon:

Late in the day mommy, cousin Ann and JJ took off towards the beach to go on a helicopter trip that Ann had won as a prize and they took mommy along. What a wonderful birthday present!

In case you are wondering, mommy is 29 again.

Rebekah's emotional extremes seem to be getting a bit worse and we are not sure what's up with that. It's something we are going to have to keep an eye on and maybe check with the neropshychologist on. And then again it could just be normal kiddoitis. Around here we are not sure what is normal.

We also want to thank a group of daddy's friends who got together and made a wonderful donation to Rebekah's trust! It is getting lower and the prospect of future surgeries and neropshyc stuff that is not covered is daunting! People continue to be great and somehow we are always able to have the ends meet. What a praise.

Finally, early this morning daddy spent some time with a one year old and family that could use your prayers today, please.