Friday, May 15, 2009

Treat Your Children Well, or my life has changed

I hesitate to post this. Not because of the nature of the post, but rather because, believe it or not, I am an intensely private person when it comes to my family. If this was about me, hell, I would have posted this a week ago, but this isn't about me, it's about my son.

Six weeks or so ago, my wife took our 3.75 year old son Jack to the doctor for an eye infection. While there, she mentioned that he had been getting cross eyed a lot randomly. Since both of us have near sightedness, the doc recommended we go to an opthamologist to have it diagnosed because it could be lazy eye, weak muscle, the usual stuff.

While there the doctor noticed a spot behind his eye called a lisch nodule. Wanting to ensure that it was nothing serious, we scheduled an MRI. They found what the doctor suspected, spots along the optic nerve pathway that are known as gliomas. The diagnosis, Neurofibromatosis-1 (NF-1). He recommended a neurosurgeon who referred us to the people he works with, St Jude.

Quick sidebar, for those of you who have never heard of it, St. Jude is the childrens cancer medical research facility in the world. Founded by Danny Thomas as a thank you to St. Jude who he credited for helping launch his career after praying to him and promising to build something in his name. The hospital is completely free and treats patients from around the world. More information can be found at their website.

We went to St Jude last week for the test workups. The diagnosis was confirmed that he has NF-1. He is a very unusual case in that he has none of the physical characteristics of someone with the disease and is also extremely young for a diagnosis. Before I go further, I want to state this, IT IS NOT CANCER!!!!!!

Once again, its not cancer, yes it can mutate into it, but that is very rare. It is an extremely slow growing tumor though. Sometimes they stop and die on their own without treatment. Sometimes the patient has to have a cycle of chemo (1 yr) to arrest the progression and attempt to kill the tumor because the tumor is along the optic nerve pathway and failure to do so can result in blindness.

Right now for Jack, they are going to wait and see and reevaluate in 2 months. Hopefully, the tumor will die or stop growing on its own, if not, then we'll see. More than likely though, Jack is going to have to have Chemo though at some point. I want to emphasize that it is non life threating, it is not cancer. Could it become so? Yes, but extremely unlikely.

For those you who have wondered why my facebook status was needing drinks last week, and why I was in even for me, a crappy mood for the last 2 weeks, there's your reason. Because I am going to cross post this in multiple places, I want to state this, don't treat Pam and I differently then you did before, no kid gloves. We are adults, just don't be surprised if at times, she gets a little more emotional and I get a little cranky. Heck, treat Jack no differently, keep tossing him in the air as this will not affect him physically for the foreseeable future. Keep needling me and loving her. If you have any questions, hit me on twitter, facebook, or email at jon.c.carroll at gmail dot com.

12 comments:

David Holt said...

Ya'll are in our prayers.

Tom Guleff said...

As my six year old would say, "May the Force be with Jack."

Michael Silence said...

Indeed, many of us are thinking of you and your family. Having been through something sorta like this, you've been through the worst of it - the learning of it. Know that you are not alone!

rba1957@gmail.com said...

Thoughts and prayers are with you, Pam, Jack and your family.

Anonymous said...

You may find out who your real friends are throughout this experience and will probably find new ones.

My prayers are also with you.

Mr Turnbow said...

Glad to hear its not cancer!

Smart City Consulting said...

LWC:

Please call if I can do anything AT ALL. As you know, I know the angst and concern you are feeling only too well.

Thanks for allowing us to know about this so we can keep him and your family in our thoughts and prayers.

Tom

Smart City Consulting said...

LWC:

Please call if I can do anything AT ALL. As you know, I know the angst and concern you are feeling only too well.

Thanks for allowing us to know about this so we can keep him and your family in our thoughts and prayers.

Tom

Steve Steffens said...

I know Jon appreciates everyone's thoughts and prayers, Jack is doing Ok so far, he was at dinner last night and bouncing like a normal almost-4-year-old boy!

Newscoma said...

I'm pleased to hear that he's doing well.

Jon, many good thoughts from the bloggers from Hoots.

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