Wednesday, August 25, 2010

wow......Where have I been?.....

Ok so you might have thought I fell off the face of the earth. And while I wont deny it at times that does sound lovely....I havent.

Kyle had his last chemo treatment on May 17th 2010. And an MRI the end of May and then another August 12th. Both of these MRI's showed the tumor has remained stable even off of chemo. So Kyle is scheduled for surgery September 13, 2010 to remove his port.

It is a weird mix of emotions I have as we face surgery. I am thrilled that a fever will now just become a fever. No Phoenix Children's Emergency Room pulling an all nighter. No worrying about his blood counts. But on the other hand we are done with chemo, his port is coming out but the tumor is still there, his vision is still lost.

The other day Kyle told me he had a black eye. I was thinking what int he world does he know about a black eye and started to tell him he didn't have a black eye. But then something told me to as Kyle where his black eye was. He pointed to his blind eye and said "Here mommy, this is my black eye". It caught me off guard. I guess I didn't think at such a young age he would understand that he had no vision in that eye. Or that he would be able to express it. So I told Bennett and later in the day when Bennett was playing with Kyle he asked him about his black eye. Kyle again showed daddy his "black" eye. Bennett gave him a big hug and told him it was ok. And that even though he had a black eye he could do anything he wanted. Kyle hugged daddy and said "Yeah, its just my yucky eye" and went right back to tackling daddy and playing and if nothing was out of the ordinary.

Kids are so amazing. The are resilient and can teach us so much. These little ones going through such adult sized trials don't even realize it. It is the adults that stress and worry so much. Because of how we think it should be. And while yes kids should never have to suffer the pain and loss many of them do, wouldn't it be wonderful if we all viewed the world through a child's eye a little more.

Stayed tuned for details on my first ever Children's Tumor Foundation fundraiser......


  1. I stumbled across your blog, so to speak! What a great site. Our son is going through weekly chemo treatments as well. He has an optic glioma and has NF1. He is 4 years old and the greatest little boy! I relate to so much of your story and wish you all the best! Thanks for sharing....
    Our blog site is

  2. Sheila - Thank you for your kind words. It means the world to me to think that our experiences and my thoughts and feelings have helped someone. I read your blog. You have an addorable little boy.