July 6th

For the past couple weeks we've been dealing with some bad news from our doctor.

The tumor in Luke's left eye has has started to grow again. 3weeks ago we tried something we've never tried before which is to inject a dose of chemo around the eye. Sometimes this works Sometimes it doesn't. Today we found out that in our case it didn't work.

We were told by our doctor that we were never out of the woods and that this was always a possibility. We had never really believed her. Till 3 weeks ago when we sat down and really talked about what we should do if the shot in the eye didn't work.

We had decided that if it didn't take we would opt for one more round of chemo and then that would be it. we both feel that Luke has been through enough but that we should at least try once more with the chemo.

Today we had to stick by our decission. When we saw the pictures from the most recent EUA you could see the tumor had really grown in the last two weeks. Also there seems to have been some seeding which means that this new tumor is spitting out little tumors that are now floating around inside the eye.

March 2011

Earlier this month we went for our regularly scheduled EUA and were treated to terrible news. Luke had developed a new tumor in his left eye that the doctors thought would not react well to chemo so they suggested this thing called a plaque. A plaque it turns out is a small piece of thin gold that is radioactive. They insert this small plaque into the muscle of the eye radioactive side pointed at the tumor. This is done maybe once a year on special cases.
OH and they gave us 2 hours to decide.

During this whole event we've been told that radioactive is BAD so i was not very convinced that this was the best case. So i made a couple phone calls in sick kids. turns out there is no one there that was able to answer my questions. so having been told that this operation is done with the help of princess Margaret hospital i called them. I actually got to speak to the fellow that if we agreed to it would be helping with the operation. After several questions and an equal amount of satisfactory answers I hung up feeling better that this choice was OK.

I headed back into the recovery room where Luke and my wife were waiting and told them i was on board. We waited for the doctor to come back and talk to us. When she came back we told her fine that we would be willing to do the operation. This is when she surprised us. That we would be going back on chemo which was a relief. But it sucked because we had built up the confidence to agree to this plaque procedure.


We started our first round of chemo at the beginning of march. It turns out tat this has been our best round of chemo. both days luke reacted well to the chemo and it was not as difficult as the previous rounds. His recovery time was good and didn't really have any problems with counts.


Now today we had our EUA and got some great news. the tumor that had be of such concern turns out to be reacting well to the chemo treatments. Alas we fight one and antoher one turns up though.

Back to chemo

About 3 months after we finished chemo we thought everything was going well.
We were patching his eye every day, his vision in his left eye was there he could see things, walk around, tell mommy from daddy. We thought he was doing great.

We thought we had beaten the odds on this one. Wrong.
Then comes a kick in the gut. It seems a ring of cancer has started to grow again around the area that they have been lazering. They sit us down and tell us we want to give the next 2 round of chemo to be "proactive" in fighting this.
no matter how well we thought things were going they always told us we weren't out of the woods yet.
can't blame them for that. This is still all new to them too. They are not sure what's going to happen next or what the outcome of the treatment will be. So we do our best to treat him like a normal kid and hope that our efforts are not in vain.

Other then this Luke is developing great he's 25 lbs now 84cm tall talking learning words. He is still his same old happy go lucky kid. Because of his lack of contact with other kids we had started taking him to kind of day camp where the parents stay and watch the kids while he plays with the other kids. It's a big learning experiance for him as he is mostly used to interacting with adults.

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.