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, December 16, 2009

Atlanta Update

It was a quick trip to Atlanta. We flew there on Sunday, spent the day Monday in the Hospital and then flew home Monday evening. After getting up at 6:30 Atlanta time (3:30 at home), we didn't get home until midnight. It made for a very long day. The Atlanta airport had a lot of delays due to weather - fog in particular. Our flight home was delayed by about an hour and we were still missing a lot of the passengers who couldn't make their connection.

Emory University in Atlanta is doing quite a bit of research on familial ALS. They have a number of studies that they are doing. Some of them trying to find other ways to diagnose the disease that are less painful - the current tests are very VERY painful. Some of them doing some testing to see if they can find some kind of indicator that ALS is going to happen, so they can then figure out how to prevent it. Another one that is testing a medication to see if it will help stop the progression of the disease.

This last study is the main reason that we have travelled to Atlanta. The medication is Arimoclomol. They have tested it in mice (where they've simulated the gene mutation that occurs in some familial ALS patients - which Mommy has) and seen good results. The hope is that it will be a cure for the disease or at least dramatically slow the progression. It is designed such that 50% of the participants receive the study medication while the other 50% receives a placebo and is blind so that the patients, doctors, researchers, etc... do not know whether a patient is on the placebo or on Arimoclomol.

We have agreed to participate in the Arimoclomol study and other studies to further the research. We know that it is only through such research that a cure can eventually be found. For our children and other relatives who are at risk for the disease and the hope that a cure will be found, we are willing to participate in the clinical trial. We hope that it will help Mommy, but realize that the likelihood is slim. When researching the various clinical trials, this is the one that seemed to us to have the most promise.

This clinical trial required two trips to Atlanta - one at the beginning of participation and one two months later. This trip was the two month mark. The medication is a pill that is taken 3 times each day for one year. They send a nurse to our home to draw blood and get vitals every month for the first 6 months (except month 2 where we were in Atlanta and it was all done there) and every two months for the last 6 months. At the 12 month mark, a researcher will travel to us to perform more tests.

Our new ALS doc here has actually had a couple of patients that she was able to get on Arimoclomol on a compassionate use exception and had good success. She (the ALS doc) seemed pleased that we had chosen to participate in the study and she is working on becoming another location for the study.

For the most part, Mommy is about the same as she was two months ago. That seems to be really good news. For a very agressive form of the disease, it is good to have limited progression of the disease. Perhaps that means that I'm on the medication and it is working. Obviously we don't know, but we'll continue doing as we've been doing.

The one area that isn't so good has to do with Mommy's breathing. There are several tests that are done to test different aspects of breathing. When it comes to the lung volume, Mommy's tests all seem to be a little above normal. However, when it comes to Mommy's ability to quickly take a breath in the news is not so good. This test was first performed in early November and again last week. It should be at least 60. In November it was 40 and last week it was 32. We will work on getting a breathing machine for at night time just after the first of the year. We are in the process of changing health insurance and the current company requires one provider while the new insurance requires a different provider. We are not really looking forward to it, but wanting to take any reasonable measures to fight this disease with all we've got.

So we'll thank God for the good news and ask for prayers for the breathing issues. We know that God is in control and He has a plan for all of our lives.

While we were in Atlanta, Rebekah ran a fever at school and Grandma had to go pick her up. She didn't feel well the rest of the day, but she seemed to be feeling better on Tuesday. And she had a good day at school today.


Sunday, December 13, 2009

Atlanta Here We Come

one more time....

Mommy and daddy are sitting at our gate in Portland waiting to board a flight to Phoenix and then to Atlanta. It used to be that we'd eye with a bit of jealousy those that got to board the plane early because of special needs. It's not so neat when you actually have to utilize that service. We'd give just about anything to go back to being normal.

Sorry that we haven't updated you in a while. It has been a couple of weeks of ups and downs. Rebekah turned 8 on the 8th. Mommy has had a few appointments; some good and some not so. And it has been COLD - a week of single digit lows and the related issues that go with that.

Pray for a safe trip and for girls that behave for grandma.


Tuesday, December 01, 2009

Forgive Me For I Am Alone...

"Daddy, where's mommy?"

"Daddy, when is mommy coming home?"

"Mommy come back??"

Tonight these were easy questions to answer. "Mommy is at Bible Study and she will come back before you wake up." But soon, oh too soon, the answer to these questions will not be so easy.

I sat with Sarah tonight going through one of her books learning about coins, their values, counting and all. Rebekah counted some with us and played in the playroom some. It was just the three of us after dinner tonight while mommy was out at Bible Study. "Daddy Night" with the girls is a delight for me - but I am scared to death for the time when every night will be daddy night ... every day will be daddy day ... every moment of every day will be nothing but daddy and the girls and our wonderful memories of mommy. I don't want that day to come. I am not ready for that day to come.

The house is now quiet, just the noise of the wood stove cracking and the noisy fan above spinning around and around and around. My brain too is spinning and my tears are falling as I miss mommy oh so much; and this time she is gone for only a couple of hours - this time.

Forgive me, for I am alone...