Monday, March 31, 2008

March 31 day +135

Well as you can see I have not lost my sense of humor. I put on Dad's sweats and was having fun. I then decided to have the biggest best super atomic wedgie!!!! There is always an exciting moment at my house. I went to clinic today and I am so excited! My kidney levels have gone way down they are down to .9 they have not been that low for a while. My platlets, red blood cells and white blood cell counts have all gone up so that is also good!!! I am totally off of my cyclosporine (a gvh drug) and now am starting to go down and off my steroid again. Two weeks from today I will have another bone marrow asparite to see if the gvh worked. It will and all will be well!!!! I am just trying to have as much fun as possible. Today me and mom did a science experiment and it was totally awesome. It was blue goo and I strongly think every kid should make it, it was so cool and kept me busy for a long time. Ing. are: 1c. corn starch, 1/2 c. water, food coloring, and mixing bowl. Put corn starch in a bowl and slowly pour water in with it, add food coloring. Use hands to squish the water and cornstarch together. Make sure you use your hands it is so awesome to feel and play with. My mom loved how easy it was to clean up. Well enjoy. Let me know how it works.
Love Trent

Thursday, March 27, 2008

March 27th day +131

Well clinic today was boring!! My kidneys levels have gone up again not as high, they are are at 1.4. So they sent me down to get a ultrasound of my kidney's. My kidney's are normal nothing is funny with them so we will see. They are starting to take me off cyclosporine faster to see if that helps my kidneys so Sunday will be my last cyclosporine pill!!!!! My blood pressure is high so I am now taking my blood pressure meds twice a day. Other than that I am having fun playing outside and with my brothers. Easter was fun and I am glad I was able to be home. It has now been 51/2 wks that I have been able to be home it has been awesome!!! The funiest things I have done is playing airsoft guns outside and riding our 4 wheeler I am crazy man on it. Hope everyone has a great week.

Love Trent

Thursday, March 20, 2008

March 20th day +124

Today I went to clinic it was good and bad. They are putting me back on 1.8ml of prednizone. I am throwing up and they don't want the gvh to get so severe they have trouble fixing it so hopefully I won't throw up as much. The bad news is my kidneys are doing horrible. My levels are very high and they are very worried about them. They are going to put me on more fluids at night. Tommorrow they want me to go back in to test the level again, if it is as high or not much lower they will admit me in the hospital. Mom is timing me every 30 min I have to drink something I'm not happy about it but I don't want to go back in the hospital so I am doing it. I hope my kidneys will be better tommorrow I want to be home for Easter!!!!

Love Trent

Tuesday, March 18, 2008

March 18th day +122

The rapid decrease of the steroids is working fast I am starting to feel it. I am not eating very much at all and I am starting to throw up after my meds are taken. I am trying so hard not to throw up cause I hate it but I can't help it. Today I took my meds and 48 min later I ran for the bucket but first threw up on the wall and floor it was like cool green slime running down the wall. (I'm trying to find enjoyment out of this). Anyway not much else is new we colored Easter eggs and painted them it was so fun. Nate tried a boiled egg and he got to the yolk part and made a funny face so I did not try it!! Thanks for everything

Love Trent

Thursday, March 13, 2008

March 13th day +117

My clinic visit was all that I expected it to be. I have 1.5% of my bm cells, .8% of those are leukemia, and 98.5% of the cells are from the donor. With this taper they want the 1.5% destroyed by the gvh so the donor cells can take over and produce good cells! If this does not happen they will go to the 34 yr old donor and ask if he can donate more cells. The Nurse Practitioner feels pretty good about me and what they are trying to do, the Dr. wants to be as aggressive as we can at treating me and hopes for good results. I am not relapsing as he calls it, it's just persistent. I kind of do not want to talk about it with the doctors I just want it all to go away, for me to play and be a normal kid. When I got home I took a long nap and when it got dark we all played flashlight hide n seek in the house it's so fun but kinda scary. Please remember me in your prayers, and thanks for everything.

Love Trent

Wednesday, March 12, 2008

March 12th day +116

Well my taper on my steroid is going well. Mom and Dad are watching me very closely for any sign of gvh. I have been very busy making cookies (I did them almost all my self!), playing pirates, riding my bike outside, everyday I beg to get outside it is so fun, and always playing air soft guns with by brothers we have so much fun. I go to clinic tomorrow for my 100 day consult so we have many questions and hope all will be well. Hope everyone is enjoying this nice weather I sure am!!!
Love Trent

Monday, March 10, 2008

March 10th day +114

Well the doctors called today with the results from the bone marrow aspirate. There is .8% leukemia cells. That means that the leukemia survived the bone marrow preparation and transplant. We are now doing a rapid decrease of my Prednisone(steroid) to try and induce graft v. host disease. If this doesn't start it then we will do a rapid decrease in my Cyclosporine(rejection) to induce it. At this point we need the new bone marrow to attack my body and destroy the leukemia cells. The only thing mom and dad were told today, over the phone, was that there should be no problem. Any prayers are welcome. Love, Trent.

Thursday, March 6, 2008

March 6th, day +110

Today was clinic. I also had my hearing test, chemo and tbi can hurt hearing but mine seemed to be the same so they are not concerned. I also got a bone marrow aspirate. I kept wanting to wake up in the middle of the procedure so they kept giving me more sleeping meds. Well when it was time to wake up I did not want to, so it took a while to come out of it. This bma hurt more than the other ones, they took blood and a biopsy of the bone. It hurt so bad after I had to take meds to feel better. The nurse practitioner said everything looked great and I am doing well. The results will be in some time next week . I am just taking it easy today and being very careful with my hip!! No running or jumping for me today. School is going great, I am slowley getting back into a grove with it. Hope everyone is well.

Love Trent