Wednesday, March 9, 2011

Bad eye exams, Birthdays and More....

I know I have been terribly remiss in posting on this blog. So I will try to get caught up here.....
In January Kyle had an eye exam. I was nervous and kind of hating on the Opthamologist. ( I know not his fault, but I NEVER seem to get good news when I go.) Again I had to go by myself, never fun. They did the exam and wanted to dilate his eyes because the vision in his left eye had gotten worse. Talk about fear reaching out and gripping my heart. Why does it seem that those 20 minutes in the waiting room waiting for the dilation always seem like the longest in my life. So many emotions and thoughts were running through my head. Well when we went back they couldn't see anything so our eye doc was going to call and talk to the Oncologist about moving up his MRI. His vision in the left eye went from 20/20 6 months ago to 20/30 in Jan. I know that doesn't seem like much but when the right eye is 20/800 every little bit is hard to take. They moved up his MRI a couple weeks. Kyle did pretty good with the MRI and was talking about how they were going to take pictures of his brain. Such a brave little boy....
We then met with his Oncologist & Geneticist in early Feb. The MRI showed no new growth and that the left optical nerve was clear. So they are chalking it up to him being 3 and just having a bad eye exam. But it change our appointment schedule from every 6 months eye exam to every 3 months eye exam. And for a couple weeks it was really hard. One thing we had noticed was that he was squinting a lot more with his right eye. And seemed to be having problems. So we talked to the Geneticist about this and basically Kyle has just enough vision in his right eye to be causing him focusing problems. He gave us a few things to teach him at home and Kyle had already started doing some of them. But if he continues to have problems the doctor said we might need to patch the bad eye so it wont interfere. I just broke down, just starting sobbing. I have gotten much worse news over the last 2 years and felt a little silly for breaking down at what would appear to be something small. But I guess part of it was that who knows what will continue to happen. I had a concern and come to find out it was valid. It is something else to keep an eye on (no pun intended). If my son needs a patch on top of glasses I will of course do it. But I will not lie I started getting mad, fists clinched, seeing red at the tumor mad. If the tumor had a face I wanted to punch it, I wanted to yell and scream and tell that darn tumor to get out of my sons head. It was kind of weird, I had honestly not had that emotion over the last 2 years. I admit I threw a couple things and did feel better. And then as we have done for 2 years picked up the pieces I could and moved on. What else could I do? Hang on to my anger? Who would that benefit, no one and certainly not my son who needs me. So melodramatics are over and we are doing fine now. :-)

My first fundraiser for Children's Tumor Foundation was this past Saturday. it was Spring For A Cure Family Festival. We had games, petting zoo/pony rides, bouncy houses, food, craft vendors and a balloon garden hosting over 9,000 balloons!!!! And to date have raised $1450 and I still have some checks coming in. I was very happy for my first efforts and I am already working on my next fundraiser!!!!

Today is also Kyle's 4th Birthday!!!! It hardly seems possible that my baby is 4. He informed me today that he is a very big boy now! But he did let me cuddle him for a minute. The above picture was right after we started chemo and he had just turned 2. Here is a picture from Saturday. I cant believe how much he has grown.......

Also after some encouragement from a dear friend I finally was able to finish a poem. I wanted to write something for Kyle, something of our journey. I hope you like it....

I remember it well, it was on that cold January day
the vision is gone and wont come back is all they could say
The Tumor was still there the damage was done
What has happened oh my dear son

We put you through chemo with great hope
You are so young and precious how do I cope
I fight for you, I fight like no other
Because that is what I will do, because I am your mother

There is no cure, the future uncertain
It pains me to think of how you might be hurtin
At times it grips my heart, the unknown, the fear
I hold you close, you are my everything my dear

But the love for life shines in your eyes
And turns the dreary clouds to blue skies
So on this cold January day
I love you forever and ever I say

We will face the uncertain future together
I will fight for you in all kinds of weather
We will fight for a cure one day
Because then over NF we will have the final say

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