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.

Friday, August 29, 2008

No Evidence of Disease

We met with the oncologist Wednesday afternoon. Short story, no evidence of cancer! We can breathe again and live another three months. The cysts that were identified in the brain last time (June) are still there and not substantially changed from last time. Last time, it was noted that they were more pronounced than previously. We asked doc about them and did we need to be concerned. He indicated that they are something that needs to be watched, but he isn't particularly concerned about them. In areas that are radiated (which this area was), the body "heals" in different ways. One of those ways can be to form these cysts. So for now, we wait and don't worry.

Doc spoke with the radiation oncologist about Rebekah's radiation treatment and how much radiation Rebekah's brain had received. Doc always thought of the hit to the brain as "scatter" and therefore considered its damage to the brain "minimal". Our impression from the radiation oncologist was that it wasn't insignificant. Anyway, the radiation oncologist wouldn't call it scatter, but rather unavoidable. So Doc is changing his thinking a little about it.

Oncology will be helping us with the insurance appeal on the Tango!, so that is good news. And doc eased our minds about the new medication we wanted to try for Rebekah, so we started that today. We will see how it goes.

We are in the camping trailer at Candlelighters Family Camp. Actually, Family Camp doesn't start until tomorrow morning, but since Mommy and Daddy are on the Camp Committee we were able to come down early and be ready to help first thing in the morning. The girls were both very excited to go to Family Camp. They seem to look forward to it for quite a while. If you don't remember, Candlelighters is a group for families with children with cancer. We have about 300 people who will attend camp this year. That is up from previous years.

Both girls seem to be looking forward to school starting next week. In the last week, we've gotten bus pick up and drop off times and worked out some of the details. We purchased school supplies. We found out that Sarah's class will be Monday, Wednesday and Friday. We were able to get Sarah's speech therapy scheduled on Tuesdays and Thursdays, so that will be good. It won't start back up until the middle of October.

Hope you all enjoy your holiday weekend and can spend it with those you love.


Monday, August 25, 2008

Waiting for Results

We will wait for results until our appointment on Wednesday afternoon. Tumor board will meet on Tuesday morning (they meet twice a month) and we like to wait until after they have met (and discussed the scans) to get the results. We really don't want "preliminary" results, so we wait. Usually, we try to schedule scans for the end of the week before tumor board meets, but this time we had to schedule it on Monday so we have a longer wait than normal.

It is hard to believe that the summer is just about gone. With just a little over a week until school starts back up, there are lots of things to do. We have registered Sarah in preschool, but we don't know yet what the schedule will be for that. If they don't have enough students, they will combine the 3's and 4's and it will meet Monday, Wednesday and Friday. If they do have enough for two classes, the 3's class (which is the one Sarah will be in) will meet Tuesdays and Thursdays. Hopefully, we'll know more this week. Also, we found out there is a parent's meeting at her school Tuesday night, so we want to attend that.

I started looking at both Rebekah and Sarah's shots to see what they needed for school or if they were up to date. They both got behind while Rebekah was in treatment and I've worked on getting them caught up, but thought that Rebekah was missing one series. Sure enough, she doesn't have her Hep A series. As it stands right now, she doesn't need it for school but she will in a few years. It doesn't hurt for her to get it, so I've got her scheduled to get that one on Thursday morning. She'll need the second one in the series after 6 months and then we might actually be able to answer the "are immunizations current?" question yes. We've had to answer it no for more than three years now.

We are still working on the speech device (Tango!). Insurance has said they are denying it (although I haven't seen a denial), so we'll need to be working on an appeal. Meanwhile, she is without it. Ugh! Please continue to pray for this.

We are looking at starting Rebekah on some medication to help with her attention span and impulsivity. It is an ADHD medication and we are hoping that it will help. Before we start her on it, we want to make sure it is safe for her. We have a couple of concerns with it. One is that it can suppress her appetite. This would not be good and may mean that she can't stay on it. The other is that it is not recommended for people with heart problems. Rebekah hasn't shown signs of heart problems, but one of the chemotherapy drugs she had can cause heart problems. She is monitored yearly for that, but we wonder if she shouldn't be monitored more frequently if she is on this medication. The heart related problem is a rare one, but a very serious one - it can cause death. The medication may or may not work, but we feel we should try it, if we can do so safely.


Monday, August 18, 2008

Off To The Hospital Again

It's early and we are up to head off to the hospital for 3 month scans. Rebekah has a general anesthetic scheduled for 8:30am or so with the need to do some testing before that. After the anesthetic she will have an MRI and a CT scan all while being kept under. Two scans in two different places in the hospital.

We made it back from a family reunion/vacation late yesterday and dropped Sarah off at Grandma A's to stay while Rebekah has her tests today. Will pick her up on the way home from the hospital.

Keep us in prayers for clear scans.


Sunday, August 10, 2008

More Of The Same - And Some Tango Possibilities

You all know that we haven't been updating quite as much as we used to. In some ways that is good as things are staying somewhat "normal." At least as normal as you can be trying to move back into the rebuilt house, unpack, deal with therapies, etc.

The girls have made it through their Extended School Year and have a few weeks off. They spent the last two days with Grandma M, came back home last night and then are off today for two days with Grandma A. Trying hard to get our Grandma fixes in while both Grandmas and the girls are away from school.

Rebekah continues to have some ongoing issues with behavior and speech. It is believed that some of the behavior issues are frustrations with her inability to communicate. We shared with you awhile ago about a wonderful device called the "Tango" from that she was using at school with great success during a trial period. Since May or so we have beeing trying hard to find a way to buy one, with little success. We don't know how much, but it seems there might be a little bit of movement on that front and we wanted to share something with you that, even if it doesn't play out, brought us to tears that someone was caring enough to even try.

Daddy is involved with a great group of people from around the country. These are the same ones that he was treated to a trip to say "Thank You" to in Kentucky a few weeks ago. Completely as a surprise to us one of those guys wrote a letter to blink-twice on our behalf. We found out about it when somehow our email got pasted into a CC of their emails. The best way to try and explain it is to follow the email chain:

Part of our previous post was included in the email that was written to blink-twice:
For the past several months Rebekah has been undergoing a trial/test period to see if this device would work for her. The testing involved whether any communicative device would be helpful, and if so, whether this was the right one. The good news is that right at the end of the trial period she "Got It" and really started to grow and be able to use it, expressing things she can't in other ways.

And that is also the bad news. Now that she is at the end of the trial period they take it away. The local special ed district that is helping so much with Rebekah only has one to share between all the potential needs and it is given by the company as a trial. In order to obtain one for Rebekah we need to buy one - at $7,000.00!

He then added the following:
This little girl has been through a lot and may not make it to an adult. Please find way to help the Adam's family. To make things worst, their home burned down In Dec. 2007 day's be for her birthday. Their house is now rebuilt but the stress it put on the family.

Scott Adam's is a good father who is burden by ton's of medical bill's for his daughter treatment. He helps many other people as a volunteer firefighter and helping other family's cope with cancer. Please he needs this device to help Rebekah.

Any question's feel free to contact me.

Then we got the following back from the sales manager with the company:

From: Josh Witt [mailto:jwitt AT EDITED]
Sent: Friday, August 08, 2008 2:42 PM
To: family AT EDITED
Subject: Blink twice follow up

Hello family,

I wanted to follow up with you on an email I received from a Daniel some time ago. You will find my response below and his email beneath that. I would like to assist in any way I can, but don’t want to be a bother at the same time. If you are still interested in obtaining a Tango please just let me know and I’d be happy to be of assistance.

Take care,
Joshua Witt

Hello family,

I received your email and may be able to help. I have spoken to a
speech pathologist in the Portland area that specializes in AAC that
would like to assist. However, before we begin we need to know what
Rebekah's insurance is. Once we know this we can begin the next step
with the evaluation process.

Take care,
Joshua Witt
Sales Manager
Blink Twice, Inc.
Mobile: edited
Phone: edited
Fax: edited

And then just yesterday we received the following:

Thank you for contacting me. I have a meeting scheduled with my funding department early Monday morning and get back to you with the status. I will follow up with you just as soon as I have a clear understanding of the status of this case.

I hope you have a wonderful weekend!

Take care,
Joshua Witt
Sales Manager
Blink Twice, Inc.

Now obviously this could mean A LOT or it could mean very little. But we are blessed that someone was even thinking enough about us to start that ball rolling and that has even taken the time to consider us.

As always, your prayers would be greatly appreciated.