Friday, February 12, 2010

Day 1

Well today we found out our 14 month old son Luke has a rare illness called Bilateral Retinoblastoma.

A little background on our family.

Luke was born December 18th 2008 with no complications 7 lbs 8oz
Dad = me a perfectly healthy 31year old male of Canadian decent.
Mom is a perfectly healthy 25 year old female of Portuguese decent.

How it started?

Since birth we had noticed his left eye was a little lagging kind of lazy but we thought it was just part of normal eye development. around 6 month we noticed when we took pictures (with flash) that in his left eye their was a flash of silver colour.
At our 9 month check up we mentioned it to our pediatrician who told us everything looked normal.
So 2 days ago on February 9th 2010 was wife had become really concerned about this reflection in his left eye which was becoming visible with out the use of the camera. I took him to a local optometrist. This is where it all really started.

I was given a diagnosis of either cataracts or Retinoblastoma and told we should go see a specialist.
Today February 11th 2010 it was confirmed that Retinoblastoma is what our son has.

What does this all mean?

Honestly we don't know yet. We sat down with the Retinoblastoma team at Sick Kids Hospital here in Toronto and they told us a bunch of things of which most i didn't understand. My wife being a nurse was able to grasp some of it but with her not working in the Oncology department she understood more then i but not all of it.

How has this affected us?

WOW well when you find out your first born son could loose both his eyes of worse die it all become surreal and you take it in stride. as soon as we were told by the optometrist about Retinoblastoma we like everyone else who is looking for answers we googled it. This tactic was both a help and a hinder. Knowing what could happen helped us cope with the facts before we even knew what was going on BUT it also hindered us because it made us look at the worst possible outcome before we even knew what was going on.

We are taking this all in slowly were not mad (yet) at god or anyone. We are not informed enough to do anything yet. We still treat our son the same. We didn't come home and wrap everything in bubble wrap so he couldn't hurt himself more. as far as I'm concerned our son will continue to do everything the same. He'll walk on his own, He'll tease the cat the same, he'll tear apart the pots and pans drawer the same.

What next?

All we know for now is that we are waiting to get a call about an MRI to find out the extent of everything. and apparently on Wednesday were going in to get a central line put in for chemo, and also a LP (spinal tap) and a bone marrow something or other.

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