Where do I begin?

The day started out great. Cody was in a great mood before he went in for his MRI. We stopped by the clinic before his scan and they were having a Halloween party. He did very well considering he didn't have anything to eat or drink since last night. So we got our call to head up to the 2nd floor to MRI. We got him hooked up and he started his MRI around 12:30.

A little after 1:00 he was finished. So I went in to dress him and wake him up. He started off his normal grumpy self. I carried him down to the clinic and took him to a room so he could get his self together before he went out with the other kids. Well, it didn't go well to say the least. He threw his bag of candy, squeezed two of his bag juices and threw his shoes. I really do have to get something to record our sessions. You just can't imagine the things that come out of his mouth. I don't want to make excuses for him but I'm very sure he does not know what he is saying. He told me that he hated me, wanted me to be dead, hoped that I got eaten by a shark and thought that I was the worse dad ever. I know I heard all of these at least 20 times each. I can usually ignore this.

I kinda lost track of time of when we finally tried to get out of the room. He wanted to go with Jen because he believed he deserved a treat. Well we finally came out of the room even though I didn't think he was ready. He sat on a bench just inside the door that leads out of the clinic. Jen brought over his treasure board. This is something that she drew and painted to help Cody get through each step of his treatments. Each time he finished a chemo treatment or some other type treatment she let him take a treat from the board. The treats consist of small toys or candy. Well when he was getting ready to open his gift some of the other kids started to come around. Children are naturally curious and when treats are involved they just can't resist. So, my son made it very clear that he did not want the other kids standing around looking at him. Time was getting late and I was getting tired so I told him “don’t mind the other kids, you have to get your treat so we can go.” Well he became extremely angry and swung his trick or treat bag around hitting a little girl that was standing next to him. That was it, I snatched him up over my shoulder and headed out the door. While heading out he was biting, scratching, and punched me in the eye. Diane insisted that I post the picture of my new black eye.

Last night.

This morning...

I haven’t had one of these since my navy days. So anyway, as I’m carrying him out to the truck he is pleading with me to take him back to Jen so he can give her a hug. There was no way this was happening. I’ve seen him before when you think he is truly over the meds and is in a better state of mind then he reverts right back. Getting him in the truck was no easy task. I had to slide him across the seat and slam the door shut. I was so upset I had to get in the truck and gather myself before I could leave. It got so bad that I started to get into a shouting match with him. This is the first time that it took everything I had to remind myself that this wasn’t really Cody, it was the meds. We screamed back and forth until we got a mile from Georgetown. Every time he wanted to say something to me I told him I didn’t want to talk to him. I didn’t say a word until we got to Centreville. That’s about 45 minutes. There we got off 66 and I stopped at McDonalds to get him real food. Now mind you, this is about 3:45. He had not eaten anything but two small candy bars before this. This is part of the reason for his anger issues. He just doesn’t understand that if he would eat he would feel better faster. We have lobbied long and hard to have this type of procedure done first thing in the morning so he didn’t have to wait to eat. There is another thing that had a hand in this meltdown. We have found that if they add a little dextrose to his IV during the sedation he does much better coming out. Well, I didn’t remember and I paid the price. Cody ate 5 of the 6 McNuggets and half of the fries and it was like he was a new kid. He did not mention what had happened and Diane and I took the kids Trick or Treating.

As I sit here and type this entry this morning I can’t help but feel ashamed of myself. I got caught up in the situation and lost sight of the big picture. Cody really doesn’t know what he is doing. As I try to look at this from a distance it reminds me that this disease is not just doing what is obvious to Cody. Yes, the treatment breaks down his little body as a sacrifice to keep away the beast and save our little boy. But there are other things happening here. All Cody can remember since his 2^nd birthday is needles, taking nasty medicine, feeling very bad, spending long segments of time away from his brother and sister. Missing school and friends then having to start over again. My family, we long for normal days. Days of just spending time doing the things that most take for granted. I joke about Cody’s vocabulary. He can curse like a sailor when he is angry. I don’t approve of this but it’s one of the few ways Cody can get control in his life. I know that it is my fault that he has been exposed to such language in the first place. It’s just one of many of my short comings as a father and parent. This disease steals from the siblings also. There is obviously the underlying fear of losing their loved one. They are never aloud to defend themselves against Cody when he is going through one of his meltdowns. They just have to bite their tongue and stay away from him. Their childhood is being restricted also. They can’t do all the things that they would like. We can’t give them the one on one time that we should because we have to give much more to Cody. It takes all we can muster to keep this ship afloat. So, we just keep going the only way we know…

Results: The preliminary results of the MRI are good. Dr. Abu-Gosh was very pleased and called Diane with the results before I got home yesterday. Now we settle in and try to enjoy the next two weeks before we head to New York again.

Thanks for reading.