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.
Monday, March 21, 2011
Tuesday, February 1, 2011
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
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
Friday, January 7, 2011
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.
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.
Thursday, October 28, 2010
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.
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.
Saturday, September 4, 2010
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.
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.
Monday, August 9, 2010
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.
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.
Monday, July 12, 2010
EUA #2
Sorry for the delay in the update
Life since the first EUA.
Has been pretty good after we got home we started to patch his right eye. The first time you do this is like the climax of your favorite book you've been waiting and waiting for this. All you can think about is did everything we just put him through was it worth it?
He really doesn't like it when you put the patch on his eye you kinda have to fight with him a bit. We found the easiest way was to lay him down and hold his hands over his head so he can't move. At first he cries a little and tries to take it off BUT you cuddle a bit and distract him and soon he was walking!! it took him a bit but he was walking around not running into too many things.
SUCCESS Luke has vision in his left eye it's not great and it's limited to the left side of his left eye but that's better then nothing.
Every day we patch his right eye for 2 hours he still doesn't like it.
Well this time round we did something completely different. We first went to get Luke an eye test. It wasn't to spectacular. The lady held up some cards in front of him and he was able to locate the pictures on the card with his eyes. even when she covered his good eye he was still able to find the picture on the card. Then in for the EUA which took about 2 hours this time with more freezing and more lasers. When the doctor came out she told us the same thing that she always tells us it's looking a little better, not out of woods yet, but this time she also mentioned that she thinks Luke would benefit from some more chemo. So we'll see what happens there.
All for now
Life since the first EUA.
Has been pretty good after we got home we started to patch his right eye. The first time you do this is like the climax of your favorite book you've been waiting and waiting for this. All you can think about is did everything we just put him through was it worth it?
He really doesn't like it when you put the patch on his eye you kinda have to fight with him a bit. We found the easiest way was to lay him down and hold his hands over his head so he can't move. At first he cries a little and tries to take it off BUT you cuddle a bit and distract him and soon he was walking!! it took him a bit but he was walking around not running into too many things.
SUCCESS Luke has vision in his left eye it's not great and it's limited to the left side of his left eye but that's better then nothing.
Every day we patch his right eye for 2 hours he still doesn't like it.
Well this time round we did something completely different. We first went to get Luke an eye test. It wasn't to spectacular. The lady held up some cards in front of him and he was able to locate the pictures on the card with his eyes. even when she covered his good eye he was still able to find the picture on the card. Then in for the EUA which took about 2 hours this time with more freezing and more lasers. When the doctor came out she told us the same thing that she always tells us it's looking a little better, not out of woods yet, but this time she also mentioned that she thinks Luke would benefit from some more chemo. So we'll see what happens there.
All for now
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