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.

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.