I think it was the most stressful day of my life. The accumulation of worrying about Cody, worrying about Diane and worrying about Justin and Daniela mixed with Cody's volatile reactions to everything is almost more than I can handle. It is hard but I have to keep reminding myself that this is all about what Cody is going through and not anything else. I have to stay focused.
Cody made it through about half of his examination yesterday before he said "no more." He didn't want Dr. Abu-Gosh to look at the new bump in his groin area. It was about 10 minutes before he had to go get his last radiation treatment on his chest when it was decided to give him some morphine to see if it would help. So we gave it to him right before we headed downstairs for the treatment and within 15 minutes it took effect. He was a completely different child. It is just as we suspected, all of his changes in personality are being caused by pain. So the Dr. has now prescribed morphine for Cody in hopes of making his days a little better. There is one problem with the morphine though. He seems to have emotional swings that just add to all of the stress. I would tell anyone, "you do not want to be around the Johnson household right now."
Cody will start radiation on his legs today. The doctor is going to try his best at using the conventional radiation without damaging his growth plates in his legs. We simply cannot wait for the Cyber Knife issue to be resolved. The pain in Cody's legs combined with the pain he will be feeling for the next week from the radiation to his chest is why he is acting this way. If Cyber Knife is approved then they can switch.
Tomorrow is a very big day. He will get a CT scan that will tell us how fast the beast is advancing. Dr. Abu-Gosh was pretty sure that the new lump in his lymph node is neuroblastoma and it is not a good sign. We are not going to make any plans for trips or anything else until after we see the scans. Cody's liver continues to do poorly when it comes to moving the bilirubin out of his system. In Dr. Abu-Gosh's own words, "our hands are tied as far as treatment goes unless his liver turns around." She also said that any experimental treatments are out of the question because of his liver and the risk involved.
The beast has us backed into a corner right now. Cody continues to fight but I wish I could take all of this away from him. Although they don't say it, I think the kids know that this is not going very well. They see their brother getting worse and worse. They see Diane and me losing control of the situation. I don't have any idea how we are going to explain this to Cody or Justin and Daniela. I don't have a clue how we can put it into words.
Thank all of you who have offered ideas for our trip to the beach. I will give you an answer when we have a better idea where Cody stands and his treatment. Thank all of you for your prayers and continued support. The dinners, the gifts, the cards all mean so much to us. The offers to help with Justin and Daniela have made their lives a little better and that means the world right now. Although the past 4 years have been hard we know it's going to get worse before it gets better and without your help we would all most certainly be in the nut house.
Bless you all!!!!