Thur. 5/1 - update

It's been 2 months today! As I walk through the halls of the 3rd floor, I see old patients gone and rooms empty and then new ones who have come to take their place. We are still here. With envy we watch as others load up wagons and carts full of their belongings, balloons and gifts and head home. Oh God! When will it be our turn? The 3rd floor has become our new home. We have had every nurse possible and they all know our story and have come to really care for Caed. We love them all and can't say thanks enough for everything they are doing for him. One nurse told us yesterday that they have had babies here for months at a time, but little babies don't know any different. They also have long term chemo patients, but they are here for a few weeks and then go home for a few (and that cycle continues for the duration of their treatment). However, she said Caed was their first child this age who has had to be here THIS long and not get to go home. It has been so incredibly hard on him. He just doesn't understand why everything was fine in his world one day and then completely turned upside down the next. We have a big 8x10 picture hanging at the foot of Caed's bed of he and his little friend Reid. They are decked out in their Celina orange, wearing helmets twice their size and holding a football. I'm sure they had quite a game going on. It's so hard to look at it and see Caed "before"...a vibrant, full-of-energy little 4 yr. old boy. I'm starting to forget the "old Caed." For some reason one image of the "pre-sickness Caed" keeps playing over and over in my head. Caed's highlight of the week was Thurs. nights when the Sr. guys (or "teenagers" as he liked to call them) would come over for Bible Study. Before they got started, they would always have a game of "living room baseball" or sword fights or Seth ramming Caed's head into the wall (ha! we'll never let you live that one down) However, these memories give us hope of days to come. Lord willing, he will be back with his friends again playing, laughing, making messes, knocking baseballs through the window, and just being a kid! Oh God! Hear our cry...make it SOON!!!

Our main prayer right now is for Caed's stomach. His intestines seem to be doing ok at this point. The dr. told us tonight that IF he had to go to Nebraska for a transplant, it would be a multiple organ one. (sm. bowel and stomach!) She stressed over and over that they were going to try everything possible before that becomes a real option. He has been in lots of pain again today. However we are seeing a pattern that is all too familiar (from days past). Cry in pain...throw up....calm...and the cycle continues all day. His stomach was twisted up with the bowels from the beginning. It is now an abnormal shape. Instead of dumping into the sm. intestine like it should, it goes up and around and forms some pretty tough angles. That is one reason for all the vomiting and also one reason the dr. had such a tough time trying to reinsert the J-tube yesterday. The last 2 days his G-tube (stomach) has been closed. This evening they have inserted a tube coming from it and are draining it continually. (again to give him some relief) We also saw tonight for the first time in 2 days a smile and some "life." He still isn't talking, but is getting very good at sign language (primarily pointing...ha!) Bridget, you would be so proud! Not sure when they will start the feedings into the stomach. We are pretty nervous about it because he is having trouble even keeping water down. Please pray for this in particular. I don't understand why God keeps closing the doors to all these treatment plans, BUT we know He has Caed in His hands and IS IN CONTROL! Lord, help us to trust You daily and remember that YOU see the big picture!

For I know the plans I have for you, declares the LORD, plans to prosper you and not harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I WILL LISTEN TO YOU. You will seek me and find me when you seek me with all your heart. (Jeremiah 29 : 11-13)