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.

Monday, August 06, 2007

Have You Ever Had One Of Those...

...days? weeks? months? lives?

Around here it has been one of those. Forgive us (me) if we (I) vent a little.

The last couple of weeks have been an exercise in frustration. It's not that we have been busy, although we have. It's more that everything seems to be catching up to us at the same time and then we have emergencies that come on top of it all and that kind of pushes us over the edge.

Rebekah's side effects continue to get worse. She is constantly crying (not really crying but her eye watering) but still asking for eye drops all the time as her eye feels dry. Her nose is in the same situation and the fluid in her ear is still being somewhat problematic. On top of these she also seems to be getting weaker. Despite all of the physical and occupational therapy her strength is just not growing. Yesterday she could barely pull herself/step up into the van. One time she did it by herself and other times she had to have daddy help her. Then we have the nerological/mental issues and again, she does not seem to be progressing and maybe even regressing a bit. Every now and then you get a glimpse of something new learned and you can see that inside that little radiation damaged brain things are trying to work - and in those times you rejoice greatly.

The summer heat has also been contributing to the build up of issues. Sometimes it is too hot to go outside (not to mention that outside means absolute hands on all the time adult care to keep them safe) but at the same time it is too hot inside to do much of anything. We have one air conditioning company coming back today for a final review and to see what we can do. They have been great and have "included" a lot of services but their price is still just out of what our budget can afford. And that is without any sort of additional air cleaner being added on. We so much want to be able to get some better air to help with Rebekah's sinuses but we may just have to settle with cooler air. This is one where we are taking a leap of faith and spending into reserves but we do have faith that God will make things work out.

And then worst of all, far beyond any of our "piddly" problems there are children dying and suffering all around us. It seems absolutely horrible to complain about that affecting us when obviously it affects those children and their families SO much worse. In fact we should be rejoicing, not complaining, at how great _we_ have things. The last several weeks have seen Janessa (Boey) and Lexie (links for these kiddos at the right) both with major hurdles thrown at them. And they have also seen Frederick going home to hospice care and Chelsea going home to be with Abba Father. Please take a look at a short quote from Lexie's mommy that appeared yesterday:

Just got the results of the MRI. Chris is at work and I can't reach him. Guess I felt the need to tell someone. Anyone. Everyone. It's back. Multiple tumors are appearing all over. I don't know whether to cry or scream because I am so angry. I think I will just do both. My poor baby. My God, why? WWWWHHHHHYYYYY?
Well, I guess I will go cry and scream and cry and scream and try to reach Chris. I posted some new pictures while waiting for the results so check them out please.
Thanks for all the love, prayers, and support while we have been fighting. You all have been Heaven sent. Thank you.
Believing although I am pretty much about as broken as a mommy could be,

Update from Robyn this morning:
Hi. This is a quick update for now. We are meeting with our oncologist at 12:00 to decide on our plans of end of life care with Hospice. Neurosurgery was in a little while ago and the tumor is IN her brain stem and everywhere. It's inoperable although removing it again probably wouldn't have happened even if it was accessible. Will let you all know the details as soon as we know something.
Frederick's memorial is Wednesday so we would like to make it there. My family reunion is Saturday in Pennsylvania, and I would love to take her. Hopefully we will be able to do those things as her time left is probably not long. That's it for now, I guess.
Believing in God's grace and comfort to get us through,

No comments necessary.

Our hearts, our prayers, our lives go out to each other. Please join us in lifting them up. As said, it feels absolutely horrible for us to complain about our minor issues but yet, they are real to us...

Hopefully Grandma M. will be able to come home this week. She is still in the rehab center after severely breaking her leg two weeks ago. Mommy has been visiting her almost daily as well as taking care of her errands, doctor's appointments etc. In order for her to come up we have to build a ramp at her home and we are planning on getting that done this week too! As we didn't post them then, let us close this post that I don't even know how to describe with a couple of pics of the girls from the day that Grandma broke her leg. We had gone to visit her at a campground about an hour and a half from here along the Columbia River. Sandy, very sandy and a bit wet too but the girls had a blast:

One of the reasons that all of this (especially Lexie's scans) is affecting us so much is that Rebekah's every 3 month scans are tomorrow. Praising God for 18 cancer free months and praying for many many more.

2 Shared:

At Monday, August 06, 2007 12:11:00 PM, Blogger Robyn Left a thought...

It's so hard for me to read your blog, but so rewarding. Your lives and the lives of those around you are a continual reminder to live life to it's fullest day by day. Thanks for the perspective!

At Monday, August 06, 2007 11:10:00 PM, Anonymous Anonymous Left a thought...

When I read your blog and I do almost every day I realize just how greatful I should be for all the little problems I have in my life that I sometimes think are so big. God be with you and your dear Rebekah and all the other children that live with this horrable cancer. Leanne from Pa.


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