Wednesday, May 28, 2008

May 28th day +22

Things took a turn for the worst on Sunday night. Dad was with me and I told the nurse I did not feel very good. All night the nurse battled me being septic but manageable. Low blood pressure, temp of 104, oxygen levels fell and my heart rate was to high. They shoved 5 bags of bolus in me and gave me a dose of gram negative antibiotics. Eventually things turned around and I felt better. Monday night I went down again but not as bad, I only had to get 2 bags of bolus (which is fluids they run very quickly to get my blood pressure up). By yesterday I felt a little better. My fever broke Monday but today Wed. I got another one. I actually talked to mom and played play station yesterday, only a little but it was more than laying there with my eyes closed. Today I am not feeling very good at all they upped my morphine cause I have major diarrhea and stomach pains. I have started to throw up again and feel lowsy. Hopefully I will feel better soon. Hope all is well with everyone.

Love Trent

Sunday, May 25, 2008

May 25th - +19

Well the last two days have not been that fun. Graft v. Host disease can manifest itself in the skin, liver, or gut. Well I have all three. The GvH in my small intestine is the worse classification there is. If that were not enough I now also have pancreatitis so they won't let me eat or drink anything. My day consists of pain, throwing up, and running to the bathroom. Sleep is not that easy. They have now started me on steroids to try and get the Graft v. Host under control now. Hopefully it will start making me feel better soon. Love, Trent.

Friday, May 23, 2008

May 23rd day +17

Today has been rough I have thrown up so much. My liver enzymes keep going up, and they did a scope on my stomach, and intestines. The doc who did it is pretty sure it's graft vs. host, tomorrow they will hopefully be able to tell us how bad it is. My Grandma, Grandpa, Aunt, Uncles, and cousins from Oregon came to visit this weekend. I am so excited to have them here but I feel sad I feel so yucky. Please continue to pray for me.

Love Trent

Thursday, May 22, 2008

May 22nd day +16

It's been a rough 2 days! My white count is holding steady but no anc yet. I have been fevering most of the day today. My liver test show that my liver enzymes are six times what they should be which means there is infection or it's graft vs host. If my liver enzymes go higher more than likely they will do a biopsy of my liver. I am not very excited if they do that. Hope all goes well.

Love Trent

Wednesday, May 21, 2008

May 21st day +15

Today my Aunt, Grandma & Grandpa are going to hang out with me. I am so excited!! Yesterday was not a very good day at all. I woke up at 1:00 am to the chills, tremors and fevers. They think it is from some medicine I am getting. So I slept till 11:00 am, I did not feel good. My stomach is starting to hurt and I am feeling very nauseous. It took about 4 hrs to get my pills down. Me and mom just hung out and read Harry Potter. I started getting a fever again about 4:00 it was at 39.5c. So I got Tylenol and after a few min I was up and playing like myself. Hopefully today I will feel better today. Have a great day.

Love Trent

Saturday, May 17, 2008

May 17th - day +11

Photo 1- I got a kid archeaology set that I had to chisel the rock away to find pirate treasure.
Photo 2 - With the problem with my dressing they had me wear the stretching stuff to hold
it on. I call it my chain mail(armor) for my sword fights.
Photo 3 - My nurse Irish holding the bag of lymphocytes from the donor before they gave it
me. It was surprising how small the bag was. It took the donor at least six hours to
donate that little bit.
Well I'm still not acting like I'm sick. We play all day, stay up late, and sleep in. We have heard the word "home" used a couple of times lately. I cannot go home yet but we're getting closer. My potassium levels keep sliding and the doctors don't know why, so I've been getting potassium through my IV. Now they gave me a HUGE pill to take. The nurse wants me to try and take the pill so there will not be any issues when they decide to let me go home. Thank you. Love, Trent.

Thursday, May 15, 2008

May 15th day +9

All is well at this stinkin hospital. My white count is at 300 today. They say my neutraphils will be going up in the next couple of days (neutraphils is what makes my white blood cells). So my anc which makes up all my neutraphils will hopefully start showing up, and I can go home!!! I had a dressing change and my skin underneath was raw and peeling so in a 24 hour period I had to get 3 dressing changes so my skin would heal and be ok. It hurt so bad but is looking and feeling very good. I am so excited for the new chronicals of Narnia. I read all of the books, they were so good. I have some of the Narnia action figures. I play with them a lot. They are so much fun. I got a prince caspien, a sword, and peter's shield but it was plastic. It was a rip-off but I still have fun with it. Me and my Dad were sword fighting and my Dad cut my arm off. He ended up winning but I didn't give up until he cut my head off. Of course we were just playing it was fun!!!


Sunday, May 11, 2008

May 11th day + 5

HAPPY MOTHER'S DAY to all you wonderful mother's. Hope your day is fun and peaceful!!

Love Trent

Saturday, May 10, 2008

May 10th - day +4

Well they start my day count over again with the lymphocyte infusion. I made it to day +170 before but now I have to start over. Last night I was bouncing off the walls. Dad and I were throwing the football around until about midnight. I've been drinking a lot so that I can be unhooked during the day. Today I needed blood and platelets so I've been sleeping due to the Benadryl they give me before the transfusions. No signs of graft vs. host right now. The doctors came in this morning and said that they heard they need to tell me I'm sick because I'm not acting like it. I having fun playing with my Narnia toys and trying to not be bored. I should have a couple more weeks before they let me go home. Thanks for the prayers. Love, Trent.

Tuesday, May 6, 2008

May 6th day +170

Today was a great day. I had a party and that is always fun!! I got the stem cell infusion today and it went great. Just like the bone marrow transplant, it was easy I just had to sit there and let it go into my central line. Now I just wait till it engrafts which will probably take a few more weeks. We don't know how early the gvh will show itself I will let everyone know. The donor is an amazing man, he spent six hours at the bone marrow clinic yesterday and got a shot everyday for 5 days before the graft was taken. Wow, I can't wait to meet him! I got some Narnia toys and I am so excited for the movie to come out. If you have not read the books I would read them they are the coolest! Well it was a neat day, I am still amazed at the things these doctors can do. Thanks for all the prayers.

Love Trent

Saturday, May 3, 2008

May 3rd day +167

Me and Dad hung out today. I had a bloody nose but I started it by picking my nose but don't laugh cause everyone picks, I just bleed when other people don't! Me and Dad went on a walk outside my room it was fun and we saw some old friends. I feel pretty good today. Have a great weekend!

Love Trent

Friday, May 2, 2008

May 2nd day +166

Sorry I have not been on the blog I have been very sad and have not felt like writing. I can't believe it is May crazy!!! Well so far chemo has been ok. The two drugs are clofarabine and arac. My eyes have not hurt at all this time cause they started me out on a steroide eye drop so that has totally helped!!! I was finally losing some weight from the steriods until I came in. They pump me full of water so I have puffed up again yuck. I feel a little sick to my stomach but have been able to handle it well, and the best news is I have not thrown up!!! Today was the last day of chemo I will have 3 rest days then on Tuesday I will get the stem cell infusion. I am very bored and would way rather be home playing with my brothers! It's hard to be back in the hospital the nurses are nice and so sad to see me back. I am fighting with all I have and know I will be ok, thanks again for all your prayers.

Love Trent