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.

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.