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, January 25, 2008



Emotional Times

It seems like we are being pulled in so many directions... We're working with the insurance company, salvage company, contractor, roofing, electrical, plumbing, hvac, carpet, etc... And that is just for the house. It is mind boggling...

And, on top of that, we have to care for the girls. February is proving to be a busy month for Rebekah. Friday the 1st we see the eye doctor who will probably refer us to a surgeon for cataract surgery. So we'll probably have a surgeon appointment and maybe even a surgery scheduled... Friday the eighth we see the Orthopedic doctor at Shriner's for an annual followup. Friday the 15th are the quarterly cancer scans (MRI and Chest CT) and somewhere around there we need to get her panorex done. Tuesday the 19th Rebekah has an annual followup with the ENT. Friday the 22nd we'll do a heart echo and EKG to look for damage from the chemotherapy (we do one or both of these every February). And Tuesday the 26th, we'll meet with Oncology for the results of all the testing. Then in March, Rebekah will get into Audiology for a hearing test (another annual test). Just trying to get things scheduled and not have to take Rebekah out of class is a chore in itself. All of that is on top of school 4 days a week and Speech therapy twice a week.

In early January, we took Rebekah in for a Neuro Psychological exam. Yesterday, we spoke with the doctor to get the results... It isn't pretty... She scores very low for her age in most areas, although she was at age level for comprehension if she could point and didn't have to use her verbal skills. Between the low scores and her inability to sit at task for very long, the doctor suggested a diagnosis of mental retardation. While the "label" stings a bit (at least for us parents), it could open doors for resources that are only available to people with a mental retardation. He suggested that we focus on the behavior issues (inability to sit at task and such) and that we should find a behaviorist that specializes in mental retardation and work with them.

It has been a very emotional couple of months and I'm just not seeing an end in sight. At the same time, I look at the issues that Gage and his family are dealing with and I know that my troubles are few in comparison. Last night, as I was feeling sorry for myself, I looked at the most recent posts on the Ewing's Sarcoma list that I'm a part of and there are a few families who posted yesterday that they are dealing with recurrence and running out of options. It reminded me that we have a lot to be thankful for. That doesn't make our life easy, but it does help us to remember to put it into perspective. It also tends to make the nerves just a little more tense as we approach scan time. Ugh! Please pray that Rebekah's scans come out clear.

Thanks for keeping us in your prayers and Gage's family, too! Not to mention the other families that we care about.

5 Shared:

At Saturday, January 26, 2008 11:08:00 AM, Blogger Debbie Left a thought...

Just letting you know we're always here.

 
At Sunday, January 27, 2008 1:44:00 PM, Blogger Donetta Left a thought...

Our you dear soul. I hear the agony and pain and yet see the faith and courage that upholds you. Dear sweet Lady hold fast to your courage. It is a joy and a privilege to have your precious Rebekah. What seams a bad future is often that brings the most beauty and glory to her maker. perfection is found in the love that you have for her and for each other. I am so sorry of the trials and sufferings you are enduring. I hope comfort for you in the midst of this battle.

 
At Sunday, January 27, 2008 4:40:00 PM, Blogger Sarah Left a thought...

Prayers all around.

 
At Monday, January 28, 2008 5:40:00 PM, Blogger My Kid's Mom Left a thought...

As always, prayers being said on your behalf. My sister's daughter is mentally retarded as well as "behaviorally challenged" - and it can be very, very exhausting as parents to face these daunting challenges. You also have the physical issues to deal with, too - so you have a triple whammy. But, you will have access to many services (as you noted), and you may be amazed at the progress Rebekah will make once she is able to utilize them!

 
At Saturday, February 02, 2008 7:32:00 AM, Anonymous Teresa M. Left a thought...

It is one of those moments where,after reading your blog,all I can do is cry along with you and cry out to God for you. I don't want to be cliche' nor pat and yet those same words of comfort are all I have for you. God is with you, he has all the strength you need to get through these trials and he will carry you all through when you are too tired to go on. I love you all and you are in our prayers.

 

Post a Comment


Thank you from Rebekah...

Back to Rebekahs home page...