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.
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Saturday, March 11, 2006



Not The End Of The cancer Experience...

Caution – long and difficult.  Please read in conjunction with the previous post about Sunriver to understand the “ying and the yang” of life right now.

“The end of treatment is to be celebrated for a childhood cancer patient, but it is not the end of the cancer experience.  In fact, many effects do not appear until long after treatment has ended.”  Taken from Educating the Child with cancer by Nancy Keen and the Candlelighters Childhood cancer Foundation.

This quote is a summary of where I have been this past week.  On top of all of the research from many sources, we were at a seminar/support meeting on Wednesday evening regarding the developmental issues your child will face as they grow up post-cancer.  The seminar itself was not exactly on point for us but it was one more piece in the information I have been trying to absorb this week.  

Obviously I take a particular interest in the legal side of things including what accommodations are required, what protections exist under Federal and State laws etc.  That part is not hard for me to understand.  What is more difficult, however, is learning the practical side of what Rebekah is facing in the next 15 years or so.  This whole process has to be taken one step at a time.  There is no way we could have absorbed these long term effects at the beginning of our treatment.  There is no way we could have absorbed them during the radiation.  And there is no way that we wanted to squelch our joy at the end of Rebekah’s treatment.  

Even though would could not have dealt with it before now, it is extremely frustrating that we did not know and were never really told anything more than “She could have some developmental issues.”  Nor were we told that it is something we should look into; that is what makes me really angry.  Given the drugs Rebekah has received and her radiation dosages to her head, the research out there tells us that “could” is not really the appropriate word.  “Will” is much more appropriate.

As any parent would, we have been and still are focused on Rebekah’s survival.  As we look toward the long term we had been thinking about the scans, the long term survivability rates and the surgeries that she is up against.  It is only now that we are having to add to this the cognitive and developmental delays and the special needs that are imminent.  There are some very promising programs and therapies out there to help with some of these issues but they are most definitely not covered by insurance.  And even more so, the time necessary to have her partake in these is immense.  I do not know how to describe feelings right now except to say that I feel “hit” all over again.

Because of Rebekah’s CP and other neurological issues pre-cancer we had just began familiarizing ourselves with the Special Education services that are out there.  We have been very lucky to have a great Educational Service District and had not run into any difficulties in our brief start with them.  What I am learning now, however, is that our introduction to them was just that, an introduction to an entire “educational career” of needs and accommodations.  

No, we have not lost hope.  We serve an awesome God who has miraculously carried us this far.  But we are starting to feel like the rug has been taken out from under our feet again.  I am really really glad to have had this weekend away to absorb this.  It was unplanned (by us) but very much needed.  I cannot believe that we had even started to question the ability to return to “normal.”

6 Shared:

At Sunday, March 12, 2006 3:12:00 PM, Blogger Eva Left a thought...

You already know this, but let me just re-emphasize - God has not brought you this far just to tell you, "Well, you're on your own now." He is with you every step of the way. Just as you look back now in amazement at how you made it through such a difficult year, so you will also - year after year - look back and see how God has carried you and provided for you and gotten you through. You will never be alone. And He will always give you the strength for whatever He asks you to do. As I've heard said many times, God does not call the equipped, He equips the called - and He has called you for whatever reason to be mommy and daddy of a child that will endure so much more than most parents will ever be able to fathom - but He will equip you and use you every step of the way. He will turn what the devil could have used to destroy you to make you stronger, and use you in the midst of trials to lift up His name and minister to others who do not yet know Him. You're journey may seem difficult - but you'll never have to go it alone.

 
At Sunday, March 12, 2006 4:42:00 PM, Blogger JodiTucker Left a thought...

Gee, Eva said the exact same words that I was going to post. What a coincidence! Seriously, she has words of wisdom.

 
At Monday, March 13, 2006 5:18:00 AM, Blogger Danny Sims Left a thought...

This is why God has brought you to this point: Now you are able to stand against the schemes of the enemy in a different way, more ready and with more depth to your insight. Had this battle come first you might not have been able to stand. And we're all praying for you in new ways, also with more depth and more commitment.

I hope this makes some sense...

 
At Monday, March 13, 2006 6:01:00 AM, Anonymous Teresa M. Left a thought...

Amen to the previous posts. Your journey to glorify the Lord will do just that. Put the Holy Spirit in the drivers seat as you have always done before and watch the impossible become possible and obstacles before you will get behind you. Be aware and informed, but continue to seek answers with not your carnal mind but with the mind of Christ. Have a great day today and I hope the refreshing of the weekend stays with you all.

 
At Monday, March 13, 2006 9:31:00 PM, Blogger Darlene Left a thought...

Sometimes when I play cards I have a partner sitting accross from me who waits for a signal of some kind. Laying a heart would show him I am strong in hearts etc. Most of the time, I don't reveal my hand or my strategy, because one--there isn't a need for my partner to know when I'm confident that I have every hand. And two--revealing my hand would tip others off and change the course of the game.

I was reminded of this in so many ways. God sees how every hand will play out--every step is part of his plan. If He would have revealed this to you before, things wouldn't have unfolded as they did.

I usually win--God always wins.

 
At Tuesday, March 14, 2006 11:03:00 AM, Blogger My Kid's Mom Left a thought...

We only absorb what our minds are capable of absorbing when in the crisis mode - IF you had had all of this info at the beginning of the journey, think of the despair you have faced. You are in a far better place now to be able to absorb it, ponder it, and then make an action plan accordingly. You can do this, of that I am sure. Just continue leaning on God and family and friends all the way!

 

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