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.

Waiting........

This seems to be all we've been doing so far. waiting for doctors waiting for tests.

Today we had t show up at the hospital at 8 am JUST in case there was a spot open for an MRI. This means Luke is not allowed to eat or drink at least 4 hours before the MRI. That's OK because 8 am he's just woken up and he'll hopefully be OK till about 10 or 11 without food. well seeing as the doctor didn't show up till 10 am ish not much really got done we just waited well i slept and the wife entertained Luke. Luckily Sick Kids has a great toy room and he had lots to do.

So the doctor shows up and puts in the orders for Luke's blood work and talks to someone who says OK well the little guy can have an I.V. but still no food. Now i start getting upset I'm not going to let my kid sit there for 12-14 hours without eating just seems wrong seeing as at home he eats SO much. So i tell them we'll wait till 3 and then see if we get into the MRI 3 pm 4pm still nothing. I had to go to work at this point so the Luke and my wife stayed the night in the hospital. I'll meet up with them tomorrow, When we MIGHT get our MRI.

the point of the MRI is to tell us how far progressed the tumors have gotten. If they are really bad in his left eye then when we go in on wenesday they will remove his eye(from what i understand). It will also tell hem if he has developed Trilateral retinoblastoma which means tumors have started to develop in what is know as the third eye which is located in the middle of the brain. If your going to get it might as well go all the way eh?

So now we wait some more.......