Tuesday, September 16, 2008

Where to start..

Trying to describe Cody's new treatment is quite hard to do. The day started early, around 8am. Diane thought that we had to be there early on Monday but it turns out that is only on the first Monday of the treatment. So we arrived and they did Cody's blood work. The rest of the morning Cody and I spent playing in the recreation room waiting for his noon appointment. Well like most places Mondays are quite crazy at MSK and yesterday was no exception. It was around 3pm and most of the morning kids were done and heading out the door when I finally went to ask about Cody's treatment. They had Cody slated to be in a certain room with a certain nurse and it just so happens that the child before Cody had some complications which pushed us back. Oh well, that is the way it goes. We are use to things not going exactly as planned. So they decided to put us in a different room with a different nurse. We finally got started and things were going pretty well. There was a child psychologist sitting in on his treatment. I'm not sure if that is the norm but I welcomed the support and company. Cody did extremely well at the beginning. In fact, he made it as far as getting all the 3f8 being administered and the flush before things fell apart. Until this point we played a card game called "around the clock" which is something like solitaire. Then we started playing his new favorite game "poker". He amazed the psychologist and nurses with his understanding of the game. I know he is my son and I may be a little biased but I have to admit, he is so smart. Anyway, up to this point other than periodically drifting off in a daze he did great. As soon as the flush started I noticed his ears getting extremely red then his heart rate started going up. All of the sudden he started talking like he was holding his breath and talking at the same time. He began to panic a little as did I. The nurse was right there as she started giving him a breathing treatment. This is oxygen with some type of liquid that forms a mist which he inhales. He did it without question. Then the pain started in his abdominal area. The nurse gave him 3 rescues which are pain meds injected right into his line. She also asked him if he wanted to try some heat packs on his belly which he declined. Then she asked if he wanted some cold packs which he accepted. Now, I know that you are wondering "why offer warm and then cold." Well, the only way I can explain it is that all kids that go through this are different and they all experience something a little different. Last week Cody didn't want anything to do with either. In fact Diane was amazed that he wanted the cold packs. He had a total of 7 cold packs on his belly and back. It seemed to make him feel better so that is all that matters. The nurses are very understanding and do whatever the child wants, even if it is just "not talking." Through this process I have to say that I just felt totally helpless. I wanted to pick him up and hold him but I know he would never stand for that. At one point I almost started to cry when I saw he was having a hard time breathing. If this makes sense, I would kinda compare it to a religious experience. When you come out on the other side, you feel different. During this process Cody seemed to go from one end of the emotional spectrum to the other. He gave out more hugs and kisses to me and the nurses than "two teenagers on a hot date." One minute he was cussing me and the next he was saying he was sorry and he loved me. From 3pm to 8pm he told me he loved me at least every 5 minutes. After the pain was over the best way I can describe him is a "happy drunk." He loved everyone. Everyone we passed on the street and in the halls he said "hello". In fact, as we were getting off the elevator to go downstairs to eat he even helped a lady who was getting on the elevator. He was such a little gentleman. The lady looked in with amazement and gave him a big smile and a "thank you young man." As we walked away Cody looked at me and said, "it's good to be nice to old people right dad?" He is something else....

That's about it for now. I'm sorry for the long paragraph. I didn't know where to break it up. It is kinda like yesterday, just one long day....

9 comments:

elizabethnyc said...

Mickey, thanks for that insight into Cody's treatment. Sounds like he was an absolute champ, and you were right by his side through it all. Glad you both made it through the day, and here's hoping and praying that the rest of the week goes well!

Elizabeth

Anonymous said...

Thanks for keeping us updated on Cody's treatments. Glad things are going as well as expected. Cody's is such a little trooper.
Shirley

209Mike said...

That kid is something else. You guys are amazing. Continued thoughts and prayers from the west coast. Keep the faith!

Jenny said...

Cody,

You are SUCH a polite guy. That story about you helping the old lady on the elevator just warms my heart. I hope this week flies by so that you can get home and back to school! I'm really looking forward to playing poker with you next time you come to clinic. I don't wanna brag, but I think I'm pretty good at poker too, so maybe this might be a game that you won't beat me at everytime?! Who am I kidding? You always beat me :-)

See you next week!
Jenny

Monica Cassier said...

Mick,

This was one of the most beautiful things you have ever written. I felt like I was with you and Cody in the room, feeling helpless at not being able to make the pain go away, watching in amazement at the patience and skill of the nursing staff, watching in awe and wonder at the courage and grit of a 6 year old child.

I'd like to think that what Cody experienced at the end of the treatment - after the pain left - was deep, profound gratitude, the kind of raw, honest gratitude that can only be expressed through the innocent being of a small child. After the pain and helplessness, he felt grateful for the care and gentleness of the nurses, the relief that the pain was over, and most of all, for the love and strength of his father who was there with him. He showed his character not only in the struggle through the treatment, but more importantly, in extending a kind and gentle hand to someone he saw as perhaps also fragile and needing love and care in the shape of the elderly woman.

He is an extraoridnary young man. You have every right to be both proud, and humbled.

blessings to you all,
monica

Dottie O said...

Monica said it perfectly.

Cody seems to also be understanding what he needs and is showing that he can take some control over his care, too.


Dottie

Anonymous said...

Oh Mickey, thank-you for sharing your's and Cody day.What a amazing child Cody is. With all he is going through, to stop and help out a elderly women, says alot of the way he was raised. You and Diane have/are doing an amazing job with your kids, and this roller ocaster ride you all are on. Love and Prayers to you all.

Pam

Anonymous said...

Mickey, thank you for letting us know what the treatment is like. You explained it beautifully. I hope it isn't as hard on Cody and you the rest of the week. Continued Prayers.

Susan and Jonathan

Gettin Older said...

Wow Mickey that is something else. I don't know what to saw that has not already been said.

More prayers.

Kirk