Wow, I can't believe it is the end of July. I was suppossed to be home by now!! Everything is pretty much the same. My pooping is not slowing down it's staying the same. They took me off my ativan which helps with the nausea. I have been very happy and I talk so mom and dad did not want me back on it. Well the nausea is getting worse so yesterday mom put me back on ativan and I am not to happy and I do not talk so it's hard but I don't like to be nauseated. The doc is ordering another upper and lower scope to see if the gvh is better or worse. It hopefully will happen by Monday so then we will get results and find out what then next plan is. The nurse keeps asking when we can go home the doctors keep saying not yet but we are going to keep bugging them. Have a great day.
Friday, July 25, 2008
Well hope everyone had a good 24th. I got to hang out with dad. He was able to convince me to go outside. We went outside and sat for about ten minutes then I had to use the bathroom so we went back to my room. I then went back outside for forty-five minutes. We just sat under a tree watching the birds and feeling the wind in our faces. After a while I told dad "curse you." He was a little shocked and then I told him that now I would want to come outside every day. Dad said it was fine and Mom and him would take me outside anytime I wanted. Nothing has changed medically and the doctors are still trying to determine what the next step will be. Love, Trent.
Sunday, July 20, 2008
Well it's hard to believe another week has gone by. Tomorrow will be 12 weeks for this stay. Nothing has changed during this week. I have days that are better than others but basically it is still the same. Every day the doctors add a food or two that I can eat. It's exciting but reality is I don't eat more than one bite because my stomach does not feel good. Even though some food has been added I cannot enjoy it or take advantage of it. Mom and dad have been trying to get me to leave my room and take a walk or ride in a wagon but I have not wanted to. It is also hard to be more than a few feet away from the toilet. Thanks for checking on me. Love, Trent.
Thursday, July 17, 2008
Last few days have been crazy. Tuesday they started me on a new med cause my blood is now positive for the epstien bar virius. I will get it once a week for four weeks. Wednesday the results came back from my biopsy of my intestine and I also have the adno virius. I will be on meds Mon, Wed, & Frid we are not sure how long. We are hoping it will slow down the diarrhea but the doc's say it probably won't. The volume of my poop has gone down the last few days which is good. They have put me on a progression diet so I can eat plain bread, potato, rice, cheerios, rice krispies stuff like that. There is only about 10 things I can eat and of course I do not want to eat plain things I want pizza and burgers!!! So every morning I ask if I can eat pizza and burgers and every morning they tell me no I need to start slow. Mom laughs and I make a new plan for the next day. I still sleep most of the day and finally come awake and willing to talk a little about 7:00. Well hope everyone has a fun day.
Sunday, July 13, 2008
Well another week has gone by. It is moving slow but fast. Can hardly believe it has been more than a week since the fourth. Nothing is new. I'm still in the same holding pattern that I've been in. I sleep most of the day with pooping breaks. Lately I'm up all night pooping. My "output" has increased drastically which is not the direction we're supposed to moving. The doctors are going to try another dose of the Remicade today. Nothing has happened with the other two doses so hopefully the third is the charm. Love, Trent.
Sunday, July 6, 2008
1st pic - sitting on my chair next to my bed. I put pillows on my bed so I can rest my head since it is at least a half hour ordeal if not longer.
2nd - my box of cereal that I "smell" because I cannot eat anything.
3rd - where else can you get a funny hat for the holiday other than the hospital. I was able to go into another room to see the fireworks. It was nice but we barely made it back to the room when I said I needed the toilet.
Well nothing much has changed, no better no worse. I still have the same issues and we will try another dose of the Remicade again. My days are pretty boring. I go from sleeping in my bed to sitting on my toilet seat next to my bed. I'm still only really awake in the late afternoon and evening. I WANT TO EAT. Love, Trent.
Wednesday, July 2, 2008
Today is officially 1yr of fighting this leukemia. My life has changed so much, but I have learned so much in the process. It is crazy it's been a year, in some ways it's gone fast and other ways it has been very slow. I thought last year it would be about 6 months in the hospital then I would be out. Well in the last 12 months I have been in the hospital 7 months 3 wks. I can't wait for the day to go home and never return to this hospital!!! My feet are swelling again very bad, they gave me some cool socks to help the swelling but they look funny and I don't want to wear them. Everything is about the same. Hope everyone has a great day.