Parade Walk

Our city had a celebration over the weekend and our church was invited to do a float. Trey wanted to participate so much. I called the doctor to see what he thought of Trey walking in the parade. He told me that it would probably be okay because it was outside and he wasn't going to be in an enclosed room with lots of people. Church, school, movies etc are all places that are off limits for now. So I went ahead and made the kids' costumes. The theme of the float was "Guess what I saw in my backyard" All the kids dressed up in bug costumes. They were all so cute. Trey did so well. He walked most of the way. When he got tired he sat on the float. I'm glad he got to go. He had do much fun!

I'm a bit behind in updating the blog. We've had a busy June. Last time I wrote, I mentioned that I'd have to administer one of the chemos. We had the supplies sent to us and I was kind of worried about doing it. Trey's port was kept accessed so I didn't have to worry about accessing him. I did get to de-access his port after the end of each week of giving chemo. Trey was so nervous-he made me nervous :). All went well and he told me it didn't hurt. Whew! The second week went well too. It didn't take long to get the hang of it. About a week and a half ago, Trey's red blood cell count went way down. We took him in for a blood transfusion. This last leg of the phase really has done a number on his blood counts. Last week we found out that his ANC counts are really low. They are down to 500 as of last Wednesday. We've just been keeping him inside and washing hands like crazy. This Wednesday he'll have his blood checked again. Hopefully his counts will start going back up. He seems to be doing ok overall. I'm surprised he hasn't been more tired. His red blood count is still low, but not low enough for another blood transfusion. Trey has been happy and anxious to play with friends again.

A True Hero...

In Memory of Clark Kimble

July 27, 1985-June 11, 2010

Clark is Shane's cousin. He fought hard and long in his battle with the different illnesses that plagued his body. He was courageous and had such a positive attitude. He is an inspiration to many and will be greatly missed. We love you Clark! May God be with your family and embrace them with His love.

(Trey & Clark taken a few months back at Trey's cousins' baptism.)

Clark's amazing story-http://www.superclarkkimble.blogspot.com/

2nd half of the phase

This is Trey "feeling good!" after coming out of the conscience sedation. He was on a happy high!

Thursday was the start on the 2nd half of this phase. We were up at the hospital for just over 5 hours! When the doctor came in she started talking about all these different chemos and how I'd give Trey one of them through his port at home. I said, "hold on, back up what are you talking about!" I was under the impression that the 2nd half was going to be a repeat of the first half. Apparently not. He'll be receiving the chemo ARA-C through his port at home for 4 days and then a break and then another 4 days. The home health agency will send us all the supplies I will need to administer the chemo. They will also come every Wed to draw his blood to check his counts. He may need a transfusion sometime during this phase.

This part of the phase he had Cyclophosphamide given to him through the port (IV push given over the course of an hour). Then they did give him the 1st dose of the ARA-C at the hospital. He also had another LP with methodextrate given through the spine. A lot of chemo for one day. Oh yeah he also started 6-Thioguanine or 6-TG which are pills he'll take at home for 2 weeks. That's a load of stuff!

We tried something different when putting Trey down for the LP. Instead of going completely out-they gave him some stuff for conscience sedation. He was out but not totally. He didn't remember anything during that time. It was really weird though for me. His eyes stayed opened the whole time and they moved rapidly back and forth. Kind of unnerving. He was soooo scared because it was different from being put to sleep. He was so worried about feeling the needles. He did a great job and when he came out of it he said "I feel sooo good! When do we do it again?" He didn't remember a thing! He was so loopy and silly. He was singing songs and telling me I had two heads. I laughed so hard. Better not let him have this drug too often...he was liking it a bit to much. :) Doing it this way is actually better. Less invasive and he wasn't as sick afterwards. That's always a plus.

He's had a cough for about 2 weeks. Since his counts will be going down, we just have to be careful for the next 4 weeks. Hopefully by July 8th he will be starting maintenance. Trey has done so well and we continue to feel the tender mercies of the Lord.

Low blood counts

So we are about halfway done with the "break" from chemo. Today Trey had his blood drawn for a blood count check. This phase of treatment is pretty intense, thus the 2 week break. Trey's counts dropped dramatically from just a week ago. So far his red blood and platlate counts are still ok although they did drop, but his ANC (the ones that fight infection) are low. Just last week they were up in the 4000's, which is in the normal range. Now they are down to 700. If he was to have a chemo treatment this week, they would've made us wait. The doctors expect his counts to climb back up a bit more before next week's chemo treatment. Then of course they will probably drop again. (The blood counts drop about 7-10 days after treatment.)
He'll have his blood count checked again next week before the treatment.

Trey is also experiencing mouth sores and joint and back pain. He gets to swish with some stuff called "magic mouth wash" which Trey hates. Hopefully this will help with the mouth sores. Trey's knees hurt him alot too. The doctor says that joint and back pain is one of the side effects of the chemo. Last night was a rough night for him...he couldn't seem to fall asleep. But right now his spirits seem high and he is feeling better. Playing games with his older brother helps alot!