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.

Tuesday, September 05, 2006

A Lot To Digest

This last weekend, the events and all of the ongoing emotions definitely deserves an update. Not sure how long this will get so bear with us.

We left Friday morning for Camp Harlow. Actually we left Friday morning for some friends that live about 45 minutes from Camp Harlow. We had not seen Ed and Pat in a long time and they treated us to a spot in front of their gorgeous brand new home, dinner Friday night and Saturday morning breakfast. Most importantly, they treated the girls to the gift of being the very first kids to play in their newly finished bonus room. The girls were really enjoying the attention that Pat and mommy were giving them while Ed and daddy hung out and talked guy stuff – just like real people!

Saturday morning we were up and out to Camp Harlow, arriving at about 11:30am. Camp Harlow is a Christian Summer Camp that this year along served 3400 grade school -- high school age kids to days/weeks of enjoyment and hearing about God’s blessings. It was a beautiful camp with lots of things to do. At the end of their season, Camp Harlow invites Candlelighters (a group that helps families with children with cancer) families to come close out the camp with them. There were horses, pool, ropes, go karts, bumper boats, putt putt golf, etc. Meals are served family style in the cafeteria. Most of the families stay in cabins and they have a few hookups for RVs that we took advantage of.

The girls were a little young to participate in most of the camp however they were delighted to meet many new friends (it was our first year at this camp and we went only knowing about 4 people that were there.) Rebekah would grab the hand of whoever was around at any time. She would pull them around and show them everything she had learned (like where the best leaves were, the pretty flowers were, the swings were, etc). Most of the time was spent walking around or riding in their trailer behind mommy or daddy’s bike. They tried the pool (with life jackets) but were very VERY afraid. I just can’t begin to tell you how wonderful it was seeing Rebekah just having fun. At one point there was a teen age girl who was getting her feeds through a tube just like Rebekah does. Rebekah ran across the cafeteria and right up to her, saying “Tube Tube Tube” and pointing to the feeding tube the girl was using. Then Rebekah pulled up her shirt and showed off her feeding tube too. It was really cute to see her “relate” to someone.

Mommy and daddy had some really big emotional ups and downs. One of the biggest things for us were the memories that the campground brought back. Mommy and daddy used to be pretty heavily involved with a ministry that worked with inner-city youths, taking them into the “woods” for camping during the summer and many of the areas of this camp (especially the rope courses) made us long for those days. And then there were some real lows, necessary lows but low none-the-less. We spent quite a bit of time talking with other families. It is amazing how much you appreciate being able to talk to someone about the things you have been through when they too have been through the same things. No matter how much others want to try and understand you just can’t have the same conversation about your first night in the hospital with someone who has never been there as you can with someone who has. And right now, as we having some discomfort with how things are progressing, it was very valuable to share with some families who have “been there.”

And I guess that brings us to where we stand. We are still waiting on our meeting with the doctors this Friday. We have not heard anything more about who will be there so mommy put a call into the clinic today – no response. Mommy is very “at peace” about our situation and not knowing what is showing up in Rebekah. Daddy is another story. He is very scared, having major flash backs about the trailer in the hospital parking lot, treatments, Rebekah in pain, Sarah having to go away to someone else’s’ home, etc. We still have not been able to sit and talk with someone about the scans that were done almost a month ago now.

Mommy and daddy are having lots of discussions about the need for some comfort in Rebekah’s current situation and it is becoming clear that we need a second opinion from a Ewing Sarcoma center. As we learn more and more about this dreaded disease we are (or at least daddy is) scared that maybe we did not do the right things. We have learned that even though we were told that every place in the country followed the same treatment protocols that maybe that isn’t true. We were told that there was nowhere else that could have provided better treatment and maybe that isn’t true. With the possibility of something coming back right now we are wondering “What if…”

Daddy has been away from the computer, away from the research and to an extent (and much to his heart’s dismay) away from anything cancer related. He is trying to go back to doing some of the things that we used to do before all of this and that in and of itself doesn’t feel right. In many ways he is afraid to get back to plan things like we used to for fear of something blowing up just as soon as we try and be normal again. Mommy has been doing lots of extensive research and being involved in a national support group. We have learned that the closest specialty center is indeed in Seattle (even though we specifically asked about this earlier…). It may be that we need to be trying to set up a trip to Seattle for a complete review of Rebekah’s situation and that scares us not only because of the cost but also because of the unknowns of whether daddy could go (being away from the office when he is the only source of income/insurance right now) or whether it means separation. We can rationalize each and every individual component of how things are right now but we don’t know what we don’t know and THAT is scary right now.

I guess that is about it for now as there is a lot to chew on here. Praise God for all he has brought us through and for the joys that were lavished upon us this last weekend (and every day with our beautiful girls). And pray for the strength to get through some of these little things as they affect us daily.

9 Shared:

At Tuesday, September 05, 2006 8:41:00 PM, Anonymous Elaine Spidal Left a thought...

What a blessing it was to meet you all this weekend at Camp Harlow. Our weekend, too, is difficult to put into words and I'm still trying to process it all. I want to find the right words but I guess all I can say is that it truly was a blessing getting to spend time with your precious family...You have our prayers, support and friendship...from now on!!!! Hope to see you soon!!!! With Love, Elaine, Glen, Jeremy and Josiah

At Tuesday, September 05, 2006 10:44:00 PM, Blogger Kathy Left a thought...

If you are looking for a second opinion, you might consider St. Jude.

My son's brain tumor is a supratentorial PNET, of the same family of tumors as Ewing's.

We chose St. Jude as our place of treatment after careful research of many different options. It might not be the same for Ewings, but they do free second opinions if you gather all the scans on CD, reports, etc. and mail to them.

There is some information here.

For us, St. Jude has been a godsend. I wish you luck.

At Wednesday, September 06, 2006 3:01:00 AM, Anonymous Tammy Left a thought...

Perhaps a second opinion is just what you need. The world of cancer research has grown so large and their are so many new treatments and treatment centers available now. I pray that and your family find the answers you are looking for and that God blesses everyday you have with the girls !

At Wednesday, September 06, 2006 3:01:00 AM, Blogger Alison Left a thought...

I am so thankful that you got to connect with people that understand. It sounds like the girls had a wonderful time.

I will be praying as you await the meeting on friday that you will both feel peace.

At Wednesday, September 06, 2006 4:24:00 PM, Anonymous Anonymous Left a thought...

I sought the Lord, and he answered me; he delivered me from all my fears.—Psalm 34:4

God answers prayer. It’s not always the way we imagine nor does it come when we think it should. Nonetheless, God does answer prayer. James 5:13-16 reads, “Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore, confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective."

At Wednesday, September 06, 2006 8:51:00 PM, Blogger thequeen Left a thought...

How wonderful that you went to the camp and had such a great time playing! Always praying and sending positive energy!

At Wednesday, September 06, 2006 9:22:00 PM, Anonymous Anonymous Left a thought...

Don't be discourged and don't second guess yourselves, however, a second opinion is never a bad idea. I'm continuing to trust God with you that our prayers will be answered. Leanne in Pa.

At Thursday, September 07, 2006 4:48:00 AM, Blogger Julie Q Left a thought...

I have to agree, don't second guess yourselves, but I would seek a second opinion as well.

I continue to keep you all in my thoughts and prayers.

At Friday, September 08, 2006 12:01:00 PM, Blogger Katie Left a thought...

prayers for a peace that transcends all understanding that will guard your heart and your mind


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