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.