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, March 30, 2011

Need Help This Sunday Please

We need someone to hangout with us Sunday from 8am until 8:30pm so Jenny can have her day off. Hangout, relax, do some homework, watch some TV or ??? Basically we need a second person in case Frances needs something that I can't do by myself. You don't have to be in charge of anything and don't need any special training! We used up all of our regular back up help over spring break and I'm out of options right now.

Can you help all or part, PLEASE???


Tuesday, March 29, 2011

A Series of Lasts...continued...

continued again...

Yesterday daddy and Rebekah went to the eye doctor. As a result of the radiation Rebekah has had one of her lenses and the guts of one eye replaced with plastic. As plastic doesn't grow or change shape over time there was lots of speculation as to what kind of surgeries the future would hold for her in making this eye continue to see.

Almost miraculous Rebekah's prescription has not changed significantly enough to even require new glasses. The doc wrote us a new prescription but stated that we probably didn't need to bother filling it until/unless she needed new glasses. She continues to see between 20/30 and 20/40 out of that eye uncorrected. Quite a difference from the "likely to be blind" that we were "promised" 6 years go.

Rebekah sat through all the testing so well. She listed to instructions and even more importantly she followed them all. When she was done she got a cookie from the cookie jar the doc keeps and she was a very happy little girl. Afterward she and daddy (and a friend of daddy's) went out to eat at Red Robin as her special treat. Such a big girl she is becoming. Our big miracle girl.


Monday, March 21, 2011

A Series of Lasts...continued...

Rebekah is continuing with her 5 year check ups. Today was hearing, tomorrow endocrinology.

When we went into treatment and developed a radiation/chemotherpay plan they had just about assured us Rebekah would be deaf in her left ear and very possibly in both. Todays testing revealed some drastically different results.

Her ear drum rebound test was a little bit dampened on the left side but her hearing tested within normal ranges almost everywhere. Her left ear had one frequency range (8300-10000hz) that she was just below normal limits but almost there. Over all her hearing is "Fine."

Daddy sat in the room with her, trying to be quiet and non-distracting while the ear plugs where in her ears and she was listening to the instructions from the audiologist. Daddy didn't hear them, but apparently they were something like "listen for the birdies and tell me when you hearing the birdies." All that daddy heard in this very quiet room was his little girl sitting in the middle in an adult chair like a big girl saying "I hear it." "I hear it." "I hear it." Each and every one of those "I hear it"s made daddy cry.

When done with the testing Rebekah went over to see the doctor. She sat perfectly still through both an intern and a medical student examining her and then the doctor himself. The doctor explained to daddy that there was a piece of wax stuck to her left ear drum that needs to come out either by softening with drops or by plucking it off now - but it might hurt if we try now. Knowing Rebekah's high tolerance for pain daddy suggested going after it now and he did with barely even a flinch from Rebekah. Guess we now have a reason that her left ear drum might not have been as responsive?!?!?

All in all Rebekah did SO good, making daddy so proud. And those little "I hear it"s will stick with him forever.


Friday, March 11, 2011

Goodbye Gage

6 years ago today there were two little carefree kiddos playing the games that 3 year olds play and learning the things that 3 year olds learn. The world was so new to them and they were just beginning to take it all in.

Within a matter of a few months both of them were attacked with the exact same horrid nasty disease we call cancer; ewings sarcoma to be exact. From that point on both of their families have been through hell on earth. Radiation, chemo, lives shattered, brought back together and then shattered again. Many people told their families that it just wasn't right for kiddos to have to suffer through all of this - and those people were correct.

Yesterday one of those little ones, Rebekah, was declared to be cured and cancer free. Today, the family and friends of the other join together in his memorial service. We don't know why. But what we do know is that IT JUST ISN'T RIGHT.


Thursday, March 10, 2011


Yes, you read that right. 769 posts, and close to a quarter of a million visitors later, we can now happily say something that we honestly were not sure we would ever be able to say.


5 years after our last treatment with no apparent signs of cancer means, according to the doctor we spoke with today, that Rebekah has been cured of cancer.

There are a lot of other issues and a lot of future risks, but for now they seem like nothing.


Tuesday, March 08, 2011

Heading the wrong way...

A little bit frustrated. The only results that are back so far are not exactly good. It may be a fluke and we are going to have to run some more tests but we are not starting out in the right direction.

Edited to Add: We only found out about this late in the day yesterday and I wanted to discuss it with mommy before putting it up on the blog. Consequently I was forced to post from my phone at the end of the day and didn't include too many details.

So far we don't have any scan results. Hopefully we will on Thursday.

What we do have are some blood results that show that Rebekah's adrenal glands were destroyed more than we thought by the radiation and are not producing enough cortisol. This is also known as the "stress hormone" in that your body produces it during times of stress. A brief summary by the doctor is that it helps all the other cells do what they need to do to fight off bad things. A person with little (or no) cortisol could be in life threatening danger even from a basic sickness/bug. Rebekah will be undergoing some more specific adrenal gland testing over spring break and we'll go from there.


Monday, March 07, 2011

A series of lasts...

Rebekah is in her last MRI. At least we hope it's her last. It's our final 5 year out of treatment followup. It has been a long haul. Hopefully by the end of the month we will be able to call rebekah cancer free.

In a neat weird sort of way her nurse today is the very very first nurse we ever had when we were trying to figure out what that bump was on rebekah's face almost 6 years ago. Sue, the nurse, set the stage for Rebekah to this day feelng happy and excited to come to the hospital despite all she has been through. It's actually wonderful to have her here. We owe her so much. It's calming to daddy in this tough time.

I have only done this one other time alone, without mommy here and that is tough. From the moment Rebekah was diagnosed we knew that we would get through it together. Even though mommy is not here at the hospital with me right now she is still at home in bed and we are still doing it together. Hold on mommy, we can still see Rebekah cancer free together.


Saturday, March 05, 2011

Talk To Your Kids

So that maybe you won't have to suffer the scare this family did today:

So my 6 yr old niece didn't realize mommy and big sis were still in the house and got it in her head she and her little brother were left alone when daddy left with the car. So she decided to take care of the 3 yr old and go find a babysitter - some friends who live several blocks away. When my sister came downstairs, they were gone. Long gone. Empty field with big cliff not far back behind their house. New development with plenty of opportunity to snatch some kids off the street with no-one noticing. She searched and called for almost 1/2 hr before she called me - could not find them. The would be babysitter friends weren't home, but some other neighbors saw them and stayed with them til daddy drove back into the neighborhood and saw them and got them home....

I don't know the answers but these came to mind: Sounds like its time to teach 6 y/o (I have one) a different way to solve this solution. 1. DO NOT GO OUT OF THE HOUSE UNLESS IT IS ON FIRE. 2. lock all the doors. 3. call mommy or daddy's cell phone and if you can't get them: 4. call 911.


Friday, March 04, 2011

Going Home To Jesus

I went home to Jesus last night. Well at least towards Jesus. In a dream. No, I didn't dream about Frances going home to Jesus, I dreamt about me going home. It was a dream, but yet it was more than a dream. It was surreal, powerful and by the truest sense of the word, awesome.

It started out in the dining room with Frances sitting at the table and the girls around her. I needed to leave but I didn't want to. I came and talked with her. I remember being afraid of asking questions in front of the girls but did it anyway. I asked Frances if we had made sufficient plans for her support and that of the girls. I asked her if she was going to be okay without me. And what seemed most important to me is that I wanted to know what she was going to do for the funeral.

Instantly I jumped to outside. It was early morning and the warming sun was out. It was bright yet crisp and just a wiff of fog was at ground level. There were chairs set up in a line in front of a coffin in front of a row a trees; my coffin I assume. I didn't see any of the people there. I guess I don't really know if there were even people there as I had my back to the gathering - it didn't do so at the time but this bothers me now. I was walking away from the scene through the tall, wet grass. I felt like an animal going into the woods to lay down and die.

Before I could lay down I was pulled out of my body. I was flying up through the sky and it was warm and brilliant. The beautiful vibrant colors of the earth disappeared beneath me and then everything was blue, then white. It kept getting more intense. I never saw anything more except brightness but I was saying "Jesus I feel so unworthy to be in your presence." At the same time I was singing "Holy Holy Holy, Holy is the Lord God Almighty" over and over again.

And then it stopped and I was awake, WIDE awake. I looked at the clock and it was 1:30am. I was scared and listened for Frances' next breath on the ventilator afraid it wasn't going to be there, afraid that instead I would be hearing alarms. I went through what I would tell the girls and whether they would go to school today. I felt emotionally and physically drained as if I was recovering from a whole body seizure.

I know what I was thinking and I know what I was feeling. But now I don't know what to think nor what to feel. I am empty.