Hello people.


Well since my last post things seem to have gotten better.
the tumor has now shrunk down and is doing better the only problem is the way the tumor shrunk.
the last round of chemo worked to reduce the tumor but what the tumor decided to do was spit out a bunch of seeds ( little baby tumors) as it was shrinking.

This presents us with a whole new set of challenges. between the ages of 3-5 new tumors stop forming. The seeds how ever are not new seeds. They are old tumors that are just floating around inside the eye which still have he potential to grow.

Since we've all decided (us and the doctors) that chemo is not another option. we are left with freezing and laser treatments.

The other day i asked the doctor if i could see the other pictures they don't show us and she said yes. Let me tell you besides the MRI this is the coolest thing I've seen. it' shows both his right and left eyes. it shows the freezing treatment a layer at a time almost like stop motion photography and since the won't let me in the room to watch this was the best they could do.

Things with Luke are getting harder. he is now fully aware of what is happening. First thing in the morning we have to put a freezing patch on his port and it's a struggle (it takes both of us to put it on) once it's on he will hold his hand over his port and it won't move till we do the eye drops later in the morning. Eye drops to dilate his eyes for the exam is another challenge. it takes 3 of us i hold his feet my wife will hold his arms and the nurse puts in the drops.

A couple months ago we started to notice moles developing on his skin just small ones. So being concerned we brought it to the attention of the doctors who got a skin Doctor to come look at them. she said that it was normal for kids who have been to as much chemo as he has for this to happen but just to keep and eye on them because they could lead to more.


So that's where we are sitting right now. freezing and lasers to control the seeds and hoping the tumor doesn't start to grow again.

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.

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.