Sunday, June 29, 2008
Another weekend in the hospital. Tomorrow will be nine weeks for this stay so far with no immediate end in sight. I have not been feeling that well the last two days and haven't even held my box of Lucky Charms to smell. The tests finally came back on the Epstein-Barr virus I initially showed positive for. Most adults carry the virus with no problem but it would have made a difference in what treatment they would try next. The test showed that the virus is present in the tissue sample but not actively flowing in my blood stream. This test was holding up any new treatments. This afternoon they are going to start me on Remicade. Another relatively new drug to try and get the graft v host disease under control. Thanks for checking in. Love, Trent.
Friday, June 27, 2008
2nd picture- nurse peeling my head. This nurse and mom are crazy
3rd picture- the skin I peeled off my foot. I could be a snake.
My scope went well. The pictures look good but results came back on the biopsy and things are not so well. I have grade 4 gvh in my lower intestines also. That means it will just take longer to heal as it is the highest grade possible. A test also came back positive for epstein barr virius which is mono, so they are sending more blood test in to see if it really is positive. Depending on that test will determine the next treatment. They have decided I will not get any more of the chemo pentostatin. There are 2 drugs they are looking at but will decided later. My spirits are up I know I will eat soon!!! I sit and smell my lucky charms cereal box to help with the hunger. Hope everyone has a fun weekend.
Wednesday, June 25, 2008
Today doc's came in and are going to have me do a colonoscopy tommorrow. I will totally be put out but I am so not excited. They need to check to see what is going on cause the diarreah will not stop. Depending on the results depends on whether they will do the chemo again or another drug to help heal me. They are just telling me it will take time to heal. I really just want to eat, I am so hungry. I am still sleeping a lot. Mom tried to cut me back on the morphin drip but my stomach just hurt and hurt so they upped my dose back up. I am watching Spiderwick with my Grandpa tonight I am so excited. Have a great day.
Friday, June 20, 2008
I have good news I am engrafted 100%. The doc's keep saying the donor had great cells. The chemo really has not done much so far, they will wait till next Friday to see if it has worked and we will go from there. So far we see little progress. Doc's will come in one day and say the rash looks great, then the next day I will have a flare up. My diarrhea is a constant, I have started to have blood in it which is not good. Because of this I can't eat or even drink. I am having a very hard time with this cause I am so so so hungry. I have not had anything to eat for 4wks. I am very positive and know next week I will eat!!!! Today the doctor said that my hands are showing symptoms of cronic gvh. Chronic gvh can take years or months to cure where acute takes only 100 days or less to cure. I am still very positive even though it is taking so long to cure me. Hope everything is well with everyone and hope everyone is having a great summer.
Sunday, June 15, 2008
Happy Father's day to all the fathers. Not too much is new. We started the chemo pentostatin on Friday and today is the last day. Not a lot is known about this chemo because it is relatively new. It is supposed to target the t-cells (which they gave me in the transplant) and kill them so the graft v host can come under control. I sleep alot during the day and am only awake about 8 - 10 hours. The awake hours are usually late in the day. My eyes are still swollen everyone thinks I'm sleeping when I'm watching tv because my eyes are barely open. I have been enjoying Aveeno oatmeal baths because it soothes my skin rash. Thanks for the prayer. Love, Trent.
Thursday, June 12, 2008
What a night. I was up every hour except 3:00 & 5:00 pooping. It was not fun, I actually fell asleep on the toilet but hey I did not fall off. They are giving me proteins to help with my swelling. My eye is actually looking a little better I can open both of them for a little bit, but my feet and ankles are still huge. My aunt came to sit with me yesterday she has magic or something cause when mom got to the hospital I was talking and looked good. Today doc's said they wanted to put me on a chemo called pentostatin. They are hoping that it will help the gvh get under control. Mom is not to sure so we are holding off to see what other options we have. Other than that I am doing the same. Hopefully each day will start getting better!
Sunday, June 8, 2008
2nd picture- many of my friends, they are awesome!
3rd picture- "hey birds watch out for those flying things" ha ha I am still funny when I am out of it.
Thank you so much for the fun fun birthday! It was so awesome to see so many who love and support me. I am truly one lucky kid!!! It was so cool I want to thank Melissa and her girls for the great idea, and Jen and Jen for helping her. It truly made my day. I was so excited to see so many people. The nurses and other patients can't stop talking about it. Thank you so much again it was a bright spot in my day!!!
We want to thank everyone for tonight!! It has been a long 6wks and getting harder with Trent not feeling well. You gave us hope and love to continue the fight! Trent is very brave and fighting hard. He has been in a lot of pain and just plain wants to go home and not be in the hospital. Again we cannot thank everyone enough for the love and support we have felt tonight and throughout the last year. Thank you Melissa and girls for the wonderful idea and Jen and Jen for helping, it was the best present!!! We truly have the best family and friends!
Love Jeff & Tiff
Saturday, June 7, 2008
The last couple of days have been exciting (not really) and rough. Yesterday I spiked a fever and did not look or feel very good. My yellow line (which is part of the central line) had a blood clot in it so they tried to tpa it to get the blood clot loose and the line flowing again. Well my line gave out and broke about 3" down from the last break. This is not good. I have so many meds that they had to put 2 IV's in my hands. I was so brave and it worked well till this morning when one blew out. They fixed my line but it has to dry for 6-8 hours and then they will try to see if it works. My skin gvh is getting worse so the doc's came in today and are putting me on a bolus of steroids with more steroids I am at an even greater risk for infection, so they are also putting me on more antifungle meds. The very bad news is I have so many meds they have to give me and my central line is not enough so today they are going to put in a pic line also. I am nervous but they will put me out to do it and that's fine by me. I am very tired and hope this will work. Have a great weekend!
I've had a few people call about the party, it will be fun. Please prepare the kids that Jeff won't be able to hold Trent up in the window long, but he will see us. Tiff is really excited, thank you so much Melissa for planning this! Thank you to everyone who has been here to help lift the DuVal Family! see you on Sunday at 6 pm!
Thursday, June 5, 2008
Drum roll please..........bbbbbbbbbb..............Trent is having a BIRTHDAY!
The BIG 8!
So what can we do? PARTY!!!!
We cant go up to his room, but we can meet on the lawn.
Trent just happens to have a perfect view of the ER parking lot up at PCMC. Please use coverd parking, not ER lot
Please join us at 6pm this Sunday June 8th.
Most important bring your bodies, then we'd also love to see signs and balloons.
Trent can only have Mylar in his room,
but we'd love to have latex as well to release when we sing.
This will be a great surprise for Trent.
We will have a Giant Card to sign. See ya then.
ps. Many have been asking if there is anything we can do for Jeff and Tiff. They have let me know that all they need is our prayers, which we love giving.
Don't tell them I said this, but they could also use some little things that would make life a little easier. Some weeding, snack food, and gift cards for easy food ( chick-fil-a is a fav) or gas cards
You did not hear this from me. ( pass it on before they delete it)
Tuesday, June 3, 2008
Things are going. I am not showing major improvement so they are going to watch me for a few days to see if the gvh starts getting better. If I am the same they will give me a bolus of steroids and hope it will kick my body in gear and start healing. The doc's say I am just taking my time and they want to see results. I haven't had any more scarry nights thank goodness! I just have diarrhea very bad. It's calmed down to 4-7 times a day instead of 7-10 times. I am on some pretty heavy meds so I zone out a lot. I am starving and can't eat but hopefully soon I will be able to! I am just thankful the pain is under control and hopefully I won't remember much of this hospital stay. My liver enzymes are still up there but are coming down each day! Thanks for all your prayers. The doc's also say that this is a good sign that I have gvh so bad. They have seen many kids who have had gvh this bad and it's enough to kill all the leukemia cells so we are very hopeful. Well have a great day.