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
No comments:
Post a Comment