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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Sunday, January 29, 2006



First Day Home

It wound up being a pretty good day. It didn't start out so good, however. Rebekah woke up at 7 am and needed a diaper change. While I was changing her, she started throwing up. I had trouble dealing with the vomit and getting the diaper fastened and trying to keep her calm. It was a bit of an ordeal. Luckily, I had disconnected her from her feeding tube before changing her diaper, so I didn't also have to struggle with getting it stopped or worry about getting caught up in the tubes.

After that, she did go back to sleep for quite a while. Sarah, on the other hand, started making noise a little later and she and Mommy got up about 8. We had some breakfast - eggs and toast. She ate an entire egg and a full slice of toast, cut into quarters. She is getting to be such a big girl! After getting her cleaned up from breakfast, I went to take her into the playroom. She got pretty upset and started signing "night night", so I put her back down for a nap. She slept for a couple of hours. Go figure!

This is the first hospital stay in a very long time (since before Radiation started in July) that Rebekah has come home from the hospital eating some bites. It is not much, but she wants to eat and she is swallowing some of it and it is staying down. It is very exciting to us. The one throw up session that we've had so far since we got home is nothing in comparison to what we've come home with in the past several chemo rounds. We still have to take things as they come, but we are hopeful for a better recovery this time.

I am looking forward to the possibility of many things, all the while realizing that it may be a while, yet, before they can happen, but finally feeling like they might actually happen. Things like, Rebekah getting back to school, into regularly scheduled Physical Therapy, Speech Therapy and Occupational Therapy and being able to get out of the house without worrying about every little thing (knowing that Rebekah's counts are sufficient to fight infection). Then there are things that may take months or years, like Rebekah eating and not requiring her G-Tube at all or at least getting her nutrition in during the day, so she doesn't have to be hooked up all night and could actually wear sleepers again, Rebekah and Sarah being potty trained, having Rebekah's central line removed and one day having her G-Tube removed. I know these will take time and there will likely be setbacks, but I can't help look to the future and see some good.

That said, let me explain a little bit about what the doctor told us during our meeting this week. Daddy explained that, despite having made it through "treatment", Rebekah really doesn't have any better chance of survival. We are thankful for each day that we have with her and have to hope for a long life with the realization that it may not come to be. For the next four years, Rebekah will have scans every 3 months to look for recurrences of her Ewings. Then cans will continue annually. After worrying about the Ewing's coming back we have to worry about Leukemia. Because of the chemotherapy drugs that she has received, Rebekah has a higher probability of getting Leukemia. It's not as high as the chance of the Ewings returning, but it is significantly more than the population at large. In addition to this, we have to worry about Melanomas in her face (where she received the radiation).

The radiation has also done damage to the bone structure, vision, hearing and growth of 1/2 of her head/face. We will need to have good relationships with an Opthamologist to deal with vision issues, an audiologisy for hearing issues, a Dentist for teeth (possible replacements) and hygeine because her saliva is not working properly, and an ENT surgeon to help with facial reconstruction in an attempt to try to keep some symetry in her face - in particular keeping her jaw functioning properly so we don't cause permanent damage. We can't say yet how often all of these surgeries are going to have to take place but they will be regularly (too often) until she stops growing as an adult.

All in all, we came out of the meeting with a positive outlook. There was a lot to absorb. We know that we will have a lot of continued care for her and many fear filled days ahead as we approach each round of scans and deal with the side effects of treatment.

Barring any fevers or infections our next scheduled clinic appointment is Thursday. Until then she gets regular medicine and shots and we have to keep Rebekah safe from outside germs as her immune system is compromised.

7 Shared:

At Sunday, January 29, 2006 10:18:00 PM, Anonymous Teresa Left a thought...

I am so glad you are home and on a positive note. God's grace and mercy has been so apparent in your lives. Looking to the future along with you and hoping for God's best.

 
At Sunday, January 29, 2006 10:56:00 PM, Blogger Eva Left a thought...

One step at a time - and God will be with you and strengthening you for each of those steps.

 
At Monday, January 30, 2006 8:28:00 AM, Anonymous Debbie Left a thought...

I'm so glad your first day home went pretty well. Your positive attitude is, once again, inspirational! Our thoughts and prayers are with you daily -- Debbie & Family

 
At Monday, January 30, 2006 9:09:00 AM, Blogger thequeen Left a thought...

prayers always always always.

 
At Monday, January 30, 2006 11:28:00 AM, Blogger Tammy Left a thought...

It sounds so overwelming yet your family remains optimistic. You all are surrounded by Angels and it inspires us all.

God Bless,
Tammy

 
At Monday, January 30, 2006 2:12:00 PM, Anonymous Tammy J. Left a thought...

I am so happy to hear that you are home and that Rebekah is doing better. Sometime's the littlest thing's can mean the most. Cherish the day and remember you are in the heart's of everyone who read's this book and pray's for your family daily. Miracle's do happen, keep the faith !

 
At Monday, January 30, 2006 6:51:00 PM, Blogger Deb Left a thought...

As overwhelming as the meeting with the medical staff may have been --remember that our God is bigger than any circumstance. All of this is a small matter in the eyes of the Lord and HE IS ABLE TO DO EXCEEDINGLY, ABUNDANTLY ABOVE ALL THAT WE CAN ASK OR THINK! I continue to pray and believe for a complete healing for Rebekah --minus all the "side effects" that are supposed to accompany her treatment. One day at a time - one step at a time - the Lord will walk with you through it all.

...praying continually...
...with praise to God that the chemo treatments have ended!
God bless you!
Deb

 

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