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.

Update april 2011

At our last EUA we spent about as much time in the waiting room as Luke did in the ER. After about 45 minutes the doctor called us back and told us that after the chemo treatment everything was looking good. Now normally we only have to wait about 10-15 minutes before we go into the recovery room but this time it took longer so we got worried. i asked the volunteer to go see whats wrong. she came back said everything is fine and that it should be a couple minutes before we could go see Luke. 5 minutes later a doctor we never saw before came in and asked to speak to us. he said he was the anesthesiologist. Luke as it turns out does not react very well to morphine and so on the pre op sheet we state no morphine or related products. the anesthesiologists always seem to have a problem with this as they can't give him Tylenol either. Their is one drug for pain he can have called Fentanyl. So this doctors tells us that Luke woke up and was in a lot of pain so they put him back to sleep so they could come talk to us about the pain medications they could give. Turns out that it was a misunderstanding because before Luke went into the O.R. we told the other anesthesiologist that he COULD have fentanyl. but it turns out the fentanyl is related to morphine. so they didn't want to give it. Big misunderstanding could have been solved by a couple of questions from the doctors that caused a big deal and Luke to be in a lot of pain. Luke has recovered fine from this EUA. The real problem though is that Luke is getting older now and is slowly beginning to understand what is going on when we go to the hospital. Putting the freezing patch on before we go is becoming a huge deal. Changing him and all the other tasks that we must do when we there there are taking there toll on him. i wonder how long it will be before getting him in the car will be worse.

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.

Jan 2011

Well what a start to the new year. Luke came back from vacation talking up a storm (not sure what he's saying) but he's getting big and has become Mr. independent.

For our EUA this month we had great news. Everything is looking well but as always "not out of the woods yet"

That's about all there is to tell for now

end of 2010 begining of 2011

What a roller coaster of a year. And it's not over yet

It all started 11 months ago with finding out about this life changing condition. Our family has been through chemo, eye exams, nights in the hospital, transfusions, colds, restless nights, home renovations, and the worst part of not knowing how it's all going to end.

There have been great mile stones. The first day we patched him and he was still able to see out of his bad eye. His 2 year birthday, The end of 6 rounds of chemo.

The last eye exam of 2010 found us with everything looking good. the doctor gave Luke the OK to go over seas and visit family.

I've been trying to scan pictures to show everyone what we see but i need to upgrade my scanner cause it's taking forever.


What the year ahead will hold for us is still unclear. Personally it think that if the doctors can't get his left eye tumor under control they will opt to have it removed bu you know doctors they won't tell us anything until the last second.

We my wife and I have decided though that we would exhaust all other possibilities before the happens. most one other treatment that we have heard of that they are using in the states where they inject the chemo right into the eye instead of running it through the blood stream like they are doing now, which they say "could be more effective"

Luke Is now 2 and very active. running, playing, talking 2 languages, potty training is going great.

We know that with if we receive the same love and support from our friends and family we will be able to get through anything that life throws at us this year.

update oct 27

Hello everyone.

Sorry i haven't posted in a while but were going through renovations so that takes up most of my time. that and work and sleep.


Life's been great so far. Luke's doing great and growing like a weed at least 3" in 4 months.
things seem to be getting better with his eye. we just did a vision test and they say that it has improved in his left eye.

as always were not out of the woods but the doc mentioned something about the tumor in his left eye could be calcifying ( turning into a big piece of calcium) which is what we want because they can't remove it so the next best thing is it turning into calcium.

As of now even still besides the lazy eye sometimes you wouldn't know there is anything wrong with Luke. he plays and acts like a normal child.

we've volunteered to work with sick kids as a sort of spokes person for the hospital. if we get any bookings we'll let you know.

Last Chemo

The Eua went very well this time. Apparently the tumor in his left eye they thought was getting bigger turned out to have a cyst in it that had swelled up and when they looked at his eye this time the cyst had popped and the tumor was a lot smaller. so this was a good thing.

Because we were going into our last chemo treatment we were wondering what our other options may be available when this is over. The doctor told us that there was a treatment in the states where they injected chemo directly into the eye via a catheter, But that the research on this is kinda sketchy but it could be an option. our doctor does something similar but they inject chemo around the eye not into the blood stream.


Chemo seemed to go well from what i heard I was sick this time around so i didn't want to get anyone in the hospital sick. Now I'm feeling better and the wife and Luke are sick. Again Chemo treatment was the same with the same outcomes nothing different about this one.