April 6, 2010

Tuesday-The day started out pretty good. Cody did have some blood last night but it was not a lot. We got to Sloan relatively quick, left here a little later. It was a tough meeting. Apparently now that the slides were sent to Duke, Cody does have GVHD according to them. They have more experience with stem cell transplant patients and this is what it looked like to them. Not sure if Cody was upset about this or about "being normal" but the tears came and of course for me too. He wants to eat out and be a teenager. I know this is so hard for him and it breaks my heart. He calmed down and got his antibiotic and I ran downstairs to find an ATM machine. We decided to go to the Javits Center and go to the car show. Cody seemed like he really wanted to do that. While I was downstairs, I ran into Steve McGowan. His wife, Dina teaches at WH and I had their son in kindergarten. I knew that she was sick and it has been a few years now. I can't describe the feeling you get when you see someone you know at Sloan. We talked for a few and Dina was there as an emergency. She was actually in FL and the trip was cut short. She is ok but going through so much too. Please add her to your prayers too.

Anyway we did go to the car show and Cody got to ride in a mini cooper. Those who know Cody well know that this is the car he dreams of having. He was thrilled to take a test drive and then sit in a few. They had an obstacle course set up with jeeps so we rode in one of those too. That was impressive. We got in the cab to head back to Sloan and Cody said he had fun. Once home, I think it all hit me. I hold it together for Cody as best as I can but then once I sit down and relax, it all comes out. I am thinking maybe we need to go to Duke and meet this doctor. I emailed both of our drs and will see what they say. Right now, there is nothing more that will be added to help Cody. They kinda said 'time will heal it'. It is not new, he has been dealing with this for a long time so we are doing what we need to do so far. Just wondering if maybe Duke would do something more. I have some work to do. Pretty upset but will get through this. Thanks for reading...oxox

April 5, 2010

Monday-Well, since I have been letting Cody drive, he was up very early and was ready to take a drive out to Riverhead outlets. I did let him drive and he did well. There were not a lot of cars on the road so it was a perfect time. He got a new pair of sneakers which he needed. We got back home and he napped and then physical therapy. His back is still sore so he got heat and a nice massage. He has not been feeling himself and I could see it in his face that he was hurting. He did not eat again today and was in bed early.

I wanted to mention too, that Cody got a really nice and touching email from his hockey player, Richard Park. He thanked him for the necklace and he was so sweet. He feels he and Cody have this connection and they do but he does not know how much he means to Cody. I am going to have to get real creative here to keep Cody happy and occupied. We hope we can stay in touch and see him over the summer. Cody is very lucky.

I got a nice pic of Casey and Nicole today, thanks Nicole!!!

April 4, 2010

Sunday-Happy Easter. I hope everyone enjoyed their day. We did and we did a lot of nothing. It was hard doing a basket for Cody without candy so he got tshirts, a little bunny and a puzzle thingy. I also got him a lap desk for his computer. It is for your computer to sit on instead of your lap. He had a good day. He got to drive a little and he took a nice nap. My hunch is he is tired due to the steroids coming down. I hope it is not anything else. We go back on Tuesday so we will know. We were going to make a dinner here and he would nibble but instead we went to eat with his dad and stepmom. A little too much for me, but once again, I got through it. We were able to go when we wanted and leave at a decent time. I am pooped and I did nothing. Guess that is what holidays are for. Hope you and yours had a nice day!

April 3, 2010

Saturday-Cody had a good night and slept late. He was up and in time to go to the game. Before we left, I got a text from the Dalia's. They were nice enough to send their yard people over to do a clean up in my yard. It was really nice of them. OXOXO to the Dalia's.

Well, it was another spectacular time at the coliseum. We had great seats and found out we were sitting in the family section. There were a lot of recognizable faces and when I asked our friend there Jeff, he confirmed it was the section for the players families. A few seats down, I spotted Richard Park's wife and kids and family. I pointed it out to Cody and he asked if he could go say hi. He was so cute and wanted me to go with him. I told him he could do it and he was rehearsing what to say. I tried to explain that the conversation would just flow and that he could do it. So he hobbled past everyone and went over. Of course she was delighted to say hi and he met Richard's sister and his kids. She told him that she knew all about him and that Richard actually got a tan line while they were away on vacation from wearing Cody's bracelet. He was thrilled! I brought two little chocolate bunnies for his kids today. Cody gave Richard a necklace so I threw the bunnies in. He asked if he could go give them to the kids. So he hobbled back over a 2nd time and he was so proud of himself. I was so proud too. I could hear his confidence when he was telling me what she said. It was a great game with the Islanders winning. We went down to the locker room area and waited for Richard so Cody could give him his necklace. He gave the new guy, Gillies, one of his bracelets so he came out too. Cody really feels at home there. Everyone says hi to him from Sparky to the players. The staff and the players and the coaches know him now and he just beams. It is so good for him and I know he will miss it once the season is over. I am pretty sure he will keep in touch with Richard and he hopes to see him sometime, maybe take him to lunch. He would be on top of the world for that. Thanks to the Islander family. We are very lucky.

April 2, 2010

Friday-Well, Cody pulled it off and feels fine. There was no fever during the night and he was good all day. Maybe a little more tired than usual but not feverish. The biopsies still say no cancer, no GVHD and no infection. They are still being sent out to other drs to read but so far there is nothing. It was a beautiful day here today so we thought we would try to take Xena to the dog park. She did well. Cody enjoyed just looking at all the different dogs. I did some things here today including breaking my cell phone. That is always a fun expense...NOT. Then Cody decided he wanted to fondue tonight. This is where it gets interesting. His dad and stepmom were coming today and guess who fondued with us? It was just too cozy. The thing is, I can grin and bear it and I do this for Cody. Is that what I wanted to do? No. Did I have anything else to do? No. The main question is did Cody enjoy it? YES! So I got through it. Tomorrow we are all going to the Islanders game. At that point, I know it will have to be enough. Have a 'Good Friday' everyone.

April 1, 2010

Thursday, Happy April Fool's Day

The night and day were not so great with Cody. He was up with diarrhea during the night and he had back pain. I was not sure where the pain was coming from but after today I figured it out. He climbed up into that zamboni the other night and I think he may have pulled something. It got stiff during the night. He woke up around 9 and had a slight fever. I was on the phone with the NP's about 6 times today and we decided to wait it out since the fever was never really over 100.3. I have to keep checking it but so far so good. I got Cody into physical therapy around 12. He got a massage and they applied heat to his back. He was not himself. We got home and he went back to bed. This had me worried. I checked him at 3 and he perked up a little. I got him out and we took a ride to watch the dogs in the dog park. He used to walk Xena there. It was a nice day out. We took a longer ride home and he stayed up till around 8. He did not eat anything today but that is ok since he has the tube. Just not like him since he has been eating. SO I will keep a close eye on him tonight and try to sleep. Hopefully the fever is from coming down on the steriods. It is a lot for him right now. Let's hope for a good night. Sweet dreams.

P.S. Cody is definitely putting on weight but the puffy cheeks is from the steroids.

March 31, 2010

Wednesday-I think we both were wiped out from out two days of events with the Islanders. Last night was a late one for both of us. We hung around most of the day. Cody did not feel like eating today and was tired. He did get a drum lesson in which was good. I did some baking for Casey and have to get his box out tomorrow. I got letters from him and he said we would talk on the 9th. The day went well and we are looking forward to the sun coming out tomorrow.