Wednesday, June 18, 2008

Control

Good morning! For once, I don't have a ton to report and maybe that is a good thing. I have really kept my nose to the grindstone. As usual, I have too much on my plate ant not nearly enough time to complete it all. I have been trying to finish up several articles for the CNCF website amongst trying to rewrite the website and create a brand new one for World Neuroblastoma Day. These are all important projects for me to be working on and yet, I find my days filled with everything else. Thankfully, one of my favorite things to do, is to meet with other families and that is what I am doing. There has been a significant amount of that as of late. It seems like I am spending the better part of my days corresponding with others. I certainly don't have all of the answers but I do have most of the questions. It is amazing. It really is true. The more you know, the less you know. There are so many layers deep on any one subject. It seems that every time I think I find an answer I turn over a rock and discover a chasm and a whole new world underneath it.

I have also found time to visit little Hayden this week. On Monday afternoon I found him in the playroom up at the hospital. He has finished his first round of high dose chemo and his counts have fallen off. On the day that I saw him last he had just received platelets. His color was great so I can only assume that he had received some red blood cells at some point as well. He was a bit quiet but content riding a John Deer tractor around the room. He is doing well. That really does not surprise me. It may surprise you a bit but, during this first round, I usually find myself worrying about the parents a bit more than the child. When the kids are fairly healthy entering therapy they generally tolerate it pretty well. Kiddos are resilient and seem to take it in stride. They are also easily influenced by the energy of those that surround them. At this point it is the parents that concern me. It is how they absorb and process this which will dictate what the rest of their family's lives will be like. They may not have a choice that neuroblastoma has come into their lives but they do have a choice of how they live with it. Their old life is gone but there is a new life here. They get to decide what they do with it. They get to decide how they face everyday. You can face it with joy and thanks that you got a brand new day or hatred and anger for the fact that you lost your old life. Which future would you want to live in? The one with hope, joy and thanks or the one with hate, sadness, and anger? It is a choice. It is one that the parents get to decide. You may think you don't have a choice now that cancer has stepped into your child's life, but you do. Everyday you get the choice of how you want to enter it and what kind of world you want your child to live in. Everyday you get to choose whether you are going to put that one foot in front of the other. It is all perception and attitude. In this world, there are many things that you can not control. But, there are many things that you can.

And that is our purpose.

3 comments:

mooki said...

thank you for this, mark. it's scanxiety here in brooklyn and i needed to read your words tonight.

i always find your posts helpful. and i realize now that i never thanked you for the fabulous advice you gave me on the nblast acor list a few months ago. i forwarded your message to my brother, who is a pediatric hem/onc doc, and he responded with an "i like this guy mark" comment.

i am glad that all your twerps are doing well.

mooki
toby's mom
www.tobypannone.blogspot.com

misty said...

Very good, thank you so much for being open living your life out loud. I am friends with Hayden's Aunt Rebbecca . Cancer has been touching many edges of my life over the last few years. It is so hard to understand but you are so right, How are you going to live with joy or hate, choose joy that way you don't walk around with a constant headache that caffeine does cure!

misty said...

Very good, thank you so much for being open living your life out loud. I am friends with Hayden's Aunt Rebbecca . Cancer has been touching many edges of my life over the last few years. It is so hard to understand but you are so right, How are you going to live with joy or hate, choose joy that way you don't walk around with a constant headache that caffeine does cure!