Thursday, October 25, 2007
Well we had our appointment today and the Dr. is "cautiously optimistic." My overall counts actually went back to zero but the "monocytes" were going up. This is what made the Dr. happy because they have not gone up since we were originally admitted. I will have another bone marrow aspirate next Thursday and that will tell us how we did on the last chemo round. It will depend on those results if we start a fourth round or go to bone marrow transplant. So for now we stay home as long as I don't get sick or my levels change drastically. I have not been wasting any time and am trying to play with everything I can. We borrowed my Uncle's Wii last night and I played with dad. We played boxing, baseball, and bowling. We got worn out from all the moving. I was ready for bed when we were done and we did not start until 10:00 PM. Have to go, I have brothers to chase and mess with. Love, Trent.
Wednesday, October 24, 2007
Well they sent me home today. We have to go back for an appoitment on Thursday morning and hopefully they will have decided what we are doing next. It is still up in the air if we are going for a fourth round of chemo or going for the bone marrow transplant next. As soon as a got home I started running around the house and playing with Brad and Nate. My body is not used to being up and around so my legs and feet hurt after awhile. We are hoping we get to stay home through the weekend but we will see. Mom has to give me IV antibiotics three times a day still but we are home. Love, Trent.
Monday, October 22, 2007
Dr. Afifi came in today and said that she would try to get me home tommorrow. She said I have been ready for a few days but they are nervous to send me home because this chemo was so strong and some kids have major problems. Also a few years ago with this chemo they waited until the ANC level was up to 200 but since then have let kids go when it was less. They just want to make sure I will be ok. As of today my ANC is still 0 but my white blood cells and nutrafills are going up each day. I made Mom pack up and take most everything off the walls. I want to go home!!! So all they have to do is say the word and 10 min later we can load me up and go home. I've decided to be Harry Potter (I am really just excited to have a magic wand) and wear my Halloween costume out of the hospital because I am so excited about it!! Well pray hard I will go home tommorrow.
Sunday, October 21, 2007
Well things have been going better for the last couple of days. My levels are starting to come back up and the doctor says that I could go home today but they are going to keep me for a couple more days. They are taking me off of two of the antibiotics to see how I do and make sure the fevers don't come back before they send me home. Maybe by the middle of the week I can go home for a few days. I'm still not eating or drinking. I have had to be hooked up to my i.v. this entire stay because I won't drink anything. Friday night my Aunt Amy stayed with me and brought me pizza. All I ate that night was a few breadsticks. Thanks to everyone that helped out at the hospital this week. Love, Trent.
Thursday, October 18, 2007
2nd picture- making homemade lemonade
3rd picture- making monster hands
It's been a crazy two days!!! My body does not know what it wants to do. Since yesterday I keep having fevers on and off. Yesterday they did a culture on my central line, it had a little puss on it so they are worried it is infected. Today nothing has grown on the culture so so far so good. This morning I woke up and felt very icky!! I started shaking really bad because I was so cold. My skin started to look very blotchy and when they pushed on my skin it took a while to recover (if that makes any sense). The nurse and doctors moved so fast to help me. They put me on a new antibiotic, I am now on 3 antibiotics and watched me very closley. It took a little while but I finally got warm and my skin looked better. The fever has not gone away, so I get ice packs all night to bring it down! My nurse went to flush my line today and take another blood culture. She was able to put fluids in but not get the blood out. We waited a little bit then tried again, it then would not even let her put fluids in the line so she thinks I had a blockage. So she put a medicine in the line to help break up the blockage (it was cool how she put it in). It took a few hours but eventually the blockage broke up and my line was good to go again. I am not really eating much, when I do it is sour stuff like lemonade, sour airheads stuff like that. Mom's face puckers up and she laughs at me but it's so good! Well that is my fun exciting day hope everyone is doing well.
Monday, October 15, 2007
Well we are having fun sitting around and watching television. Not much is new. We have different little issues that arise almost daily but don't really know why. One day I react to a transfusion and the next day I don't. One day I have a fever and the next I don't. Lately it is that I have high blood pressure. I still won't eat or drink anything unless mom and dad force me to. My levels have hit zero this time around(finally) and have stayed that way for the past week. When they start to go back up we should be able to go home for a few days. That is still probably at least a week or two away. Now that I'm back to my normal self I'm having fun giving the nurses a hard time. They like it because they get to laugh and smile. Thanks Love, Trent.
Thursday, October 11, 2007
Today has been a day. I have to be on Benadryl now when I get platlets or blood transfussions becuase I am having reactions. Because of this I get a little mean but it only lasts for a few hours. Me and Mom today had fun we filled gloves with popcorn and candy corns and put them around my room. They look like big monster hands so cool. We decided to do something fun for the other kids in ICS by making them a goodie bag. It was so fun to pick out what I would put in each bag I had a lot of fun. The rest of the night I gave my nurse a hard time and teased her. I am still working on eating I am just not hungry, Mom says if anyone has any ideas about getting me to eat let her know!!!!! Talk to you soon.
Tuesday, October 9, 2007
Well things are slowly getting better. I have been feeling better every day but I'm still waiting for my appetite to come back. Good news came today. Two 10 out of 10 matches have been found for bone marrow. One is a 47 year old female and the other is a 32 year old male. The doctors are going to submit the formal request to the 32 year old tomorrow since he is younger. The doctors do not think that a fourth round of chemo will be beneficial so we are moving towards the bone marrow transplant. The projected schedule as of now is that we will stay for the next couple of weeks until my levels start to come up, go home(unknown for how long), go back for ten days of TBI(total body irradation) to destroy my bone marrow, and get the bone marrow transplant on the eleventh day. Keep us in your prayers. Love, Trent.
Sunday, October 7, 2007
Well the good news is that my fever has gone away for the past twenty-four hours. My eyes are feeling better and I'm starting to eat a little bit. They still have me on antibiotics for awhile hoping that the fever ws only caused by the chemo. The issue is that chemo. fevers usually are short lived and mine stuck around for about four days. Mom and dad are happy because late last night and today I have been more like myself and am talking and giving the nurses a hard time. Thanks for all the prayers. Love, Trent.
Thursday, October 4, 2007
Well things have changed and I'm now starting to have some side effects. I've been running a fever for a few days and my blood pressure was high. I got nauseated last night but got through it. Right now my eyes hurt, burn, and I cannot take any light. They are trying to figure out how to get them to stop burning. Love, Trent.
Tuesday, October 2, 2007
Well I'm doing the same thing and not reacting like the doctors said I would. I'm got a much larger dose of one chemo and I was a little bit more mellow but that was it. I'm now getting a new more harsh chemo that turns my pee green. Again I'm taking it well and more like my normal self. On Friday they will give me another new drug that is supposed to make me sick like I have the flu. Of course that is what normally happens and I seem to do just the opposite. Other than that we are just hanging out in the room. Mom and dad are really getting sick of Disney because I have it on 24/7. Thank you, Love, Trent.