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 28, 2009

Rebekah's Scans Are Stable; Mommy Not So Much ...

Rebekah's scans are stable with nothing remarkable. At least that is what we heard from the nurse. We didn't have a chance to meet with the doc because mommy's got an infection which has really wiped her out and going to an oncology with a fever is not a good idea. We've rescheduled for next week. We spoke briefly with endocrine and they don't think they'll be making any changes to her medications. We will meet with them next week also, but needed to order more meds so wanted a quick update.

Now for the not so good news. Going into the MRI, we had a couple of ideas of what might be going on. One was MS (like Mommy's Mom) - it is livable but disabling. Another was ALS (like Mommy's Dad) - fatal. Third was both MS & ALS and fourth was something else entirely. We really hoped for the something else and that it would be easily treatable and if not that then MS.

Well, Mommy's MRI was clear indicating that she does not have MS. After the neurologist performed some other testing on Mommy's weak leg earlier this week, Daddy asked what she (the neurologist) was seeing on the screen of the device. She stopped and said that it was showing her that Mommy has ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease). What? Did we hear that correctly? Unfortunately, we did hear correctly. She is referring us to an ALS Clinic (the same clinic where Mommy's Dad was treated), so we won't really know much more until after we have that appointment, which hasn't been scheduled yet.

We have known that ALS was a possibility as it runs in Mommy's family. Her dad died of it 10 years ago, her aunt died of it two years ago and many, many other relatives have died from it. It is a disease for which there is no cure. Typical life span after onset of symptoms can be 2 years to 5 years with 50% surviving at least 3 years. In 10% of ALS cases, it runs in families and when it does, it can be very aggressive with much shorter time frames. Mommy's dad died 7 months after his first symptoms (Mommy has been having them for 3.) Each person reacts differently and makes their own choices which can impact the outcome. For more information, you can check out the ALS Association website for more information on the disease.

We don't really know what is going to happen. We just have to take it one step at a time. Meanwhile, we are doing some research and trying to "wrap our arms around" it. It hasn't been an easy week. Mommy has been fighting this infection which has kept her pretty much in bed or on the couch without any ability to really function or process the news. Finally, with antibiotics, pain meds and anti-nausea meds, she is feeling a little better today.

Right now, the girls haven't been told much of anything. They know that Mommy is really sick right now and just needs to get to feeling better. We've been telling them that Mommy's leg is hurting and they need to be careful around it. We probably won't tell them much more, until after we've met with the ALS Clinic and have a better idea of what to expect. Then we'll have to play it by ear as to what to tell and when to do it.

Please continue to keep us in your prayers as we continue down this new path.


Monday, August 17, 2009

Double MRIs

Rebekah has her 3 1/2 year post treatment scans on Thursday. It is hard to believe that it has been that long since we finished treatment! We need to be at the hospital at 7:15am to get the xrays (teeth-panorex and chest) and then report to MRI by 8:15. What is different this time is that Mommy will have an MRI at the same time as Rebekah. Rebekah is very excited about Mommy having an MRI at the same time - as long as Mommy goes 2nd. Once Rebekah is asleep, then Mommy will go into her scan and Mommy should be done before Rebekah and definitely before Rebekah wakes up. Daddy isn't sure what to do with himself while he has two girls in scans. Sarah will spend the night with Grandma M, so we won't have to worry about her at the hospital.

Then the following week, Mommy will have more tests and hopefully have some results from the MRI then as well. We'll follow up with Rebekah's Oncologist on Friday August 28th (as well as a regular visit to the eye doctor) and then with follow up with Endocrine on Tuesday September 1st. This will be the first appointment with Endocrine since we started the Growth Hormones. We will have to see what kind of results we are seeing and how they fall into what is expected.

Scan time always raises the anxiety level. This time, with both Rebekah and Mommy having tests, the level of anxiety seems to be even higher. I don't know who coined the term, but 'scanxiety' does seem to fit.

Meanwhile, we are keeping busy. Camp Agape was a lot of fun! There were lots of things to do. Daddy was able to be there at the beginning and at the end, but had to come home and work in the middle. Getting around was a bit difficult for Mommy, but we tried to make the most of it! We got to spend some time with families that we already knew and got to meet some new families.

Rebekah had an adult tooth that was coming in behind the baby tooth. The baby tooth wasn't very loose, so I took her in to see the dentist. With the radiation Rebekah received, she could have issues with her adult teeth so we want to be diligent in checking out potential problems. The dentist had a look and explained that it wasn't that uncommon, but that she wanted us to work on getting the baby tooth out - wiggle and jiggle it every day and it should come out within a month. So we've been working on it. Finally, this past week Rebekah was wiggling it and got it to come out! Way to go Rebekah!

Rebekah was in summer school last week and continues this week. Sarah will start school the week before Labor Day and Rebekah will start just after Labor Day. So we've been buying school supplies and trying to get everything ready for that. We have moved the girls into their own bedrooms and have been working on giving them their own space. That is finally coming together. Mommy & Daddy spent a lot of time on that this weekend.

This weekend, Sarah got to go to Great Wolf Lodge (a waterpark about 2 hours away from home) with Grandma M, Aunt Molly, Uncle Chuck and Cousin Cole. She had a great time! Rebekah is not fond of the water, so she got to spend some time with Grandma A and then ride on top of the Fire Truck in the local parade and have fun with Mommy (and Daddy - although he was working the event with the Fire Department) at the local festival. Rebekah and Mommy also did some shopping - that girl does love to shop!

This coming weekend is our Church Campout. We are looking forward to that! This one is close to home, so that makes it a little more interesting.

Labor Day weekend is the big Candlelighters Family Camp and we are on the camp committee for it. So we are deep in preparations for that, too.

The summer seems like it has flown by. It is hard to believe that we are in the middle of August already.