People have asked me time and time again, "how do you and Diane do it?" My usual answer is, "we just do." Every once and a while I ask myself the same question. Today was one of those days. Just when we feel like we are moving in the right direction, we get kicked in the teeth again. We had a pretty good day yesterday. The news overall was pretty good. The ultrasound came back good and the blood numbers changed but the doctor was not alarmed because she said that the antibiotics can cause such changes. Last night we administered the last batch of meds. We set the alarm for 1am to get up and unhook the meds. When I get up to turn the light on Diane mentions to me that Cody has a new bump on his collar bone. Being half asleep I told Diane that it wasn't the time to tell me this and I totally forgot about it today. Then she called me at work. She said that they wanted to take Cody in to get a CT scan today but they couldn't fit him in until tomorrow. I just felt like I was kicked in the stomach. Cody just can't get a break. Every time he gets through one thing something else comes up. The good thing is that the lump feels hard like it is calcium or bone deposit. We just won't know for sure until they get a look at it. So, this means we have to go in for 8am and wait until they can fit us in.
Then, next week he has to get MIBG, MRI and bone scan. Then they want him up in New York next Friday for a bone marrow test. We will stay the weekend and start the antibody infusions the next week. Just when we think we will have a few weeks of family time it all starts again. That is one of the hardest things about of all of this. This all just seems like an evil, cruel joke that was never funny or fair. I just keep asking myself "why?"
Here are few pictures for last weekend.