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.
Thursday, October 28, 2010
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
Monday, June 14, 2010
EUA 1
Update
This morning i woke up and as i was getting ready to put Luke in the car i noticed his hair is starting to grow back he's got a little 5 o'clock shadow going on.
speaking of hair isn't it weird that his hair fell out but that his eyebrows stayed???
My wife also noticed that in some pictures recently taken that Luke had some red eye in his left eye which we took as a great sign.
Other then that it's been a good couple weeks. Luke's been active and walking around more and talking more everyday.
This is Luke's first visit to the doctors since chemo (excluding blood work)
We told the doctors about the red eye in the pictures and she agreed that it could be a good sign
(side note) ( if you've ever watched a show on HBO called Nurse Jackie. it's got the chick who played the mom on the Sopranos. There's a female doctor on the show and that's who Luke's doctor looks like it's funny)
So she comes out and tells us that again were not out of the woods yet.
Luke's retina has fully reattached in his left eye although there is still tumors in his eyes.
although things are really looking good.
They did some more freezing and lazering of the tumors
They pictures from this exam this time you can see the massive changes from the first one.
While i was waiting in the waiting room while Luke was in recovery i noticed our doctor talking to some other parents. So i decided to ask about there child and it tuns out she too has bi-lateral retnoblastoma. we got talking and it turns out her daughter was not as lucky as our son as she has had her eye removed.
So as the doctor said we will wait and see how things go and we back again next month
This morning i woke up and as i was getting ready to put Luke in the car i noticed his hair is starting to grow back he's got a little 5 o'clock shadow going on.
speaking of hair isn't it weird that his hair fell out but that his eyebrows stayed???
My wife also noticed that in some pictures recently taken that Luke had some red eye in his left eye which we took as a great sign.
Other then that it's been a good couple weeks. Luke's been active and walking around more and talking more everyday.
This is Luke's first visit to the doctors since chemo (excluding blood work)
We told the doctors about the red eye in the pictures and she agreed that it could be a good sign
(side note) ( if you've ever watched a show on HBO called Nurse Jackie. it's got the chick who played the mom on the Sopranos. There's a female doctor on the show and that's who Luke's doctor looks like it's funny)
So she comes out and tells us that again were not out of the woods yet.
Luke's retina has fully reattached in his left eye although there is still tumors in his eyes.
although things are really looking good.
They did some more freezing and lazering of the tumors
They pictures from this exam this time you can see the massive changes from the first one.
While i was waiting in the waiting room while Luke was in recovery i noticed our doctor talking to some other parents. So i decided to ask about there child and it tuns out she too has bi-lateral retnoblastoma. we got talking and it turns out her daughter was not as lucky as our son as she has had her eye removed.
So as the doctor said we will wait and see how things go and we back again next month
Wednesday, May 19, 2010
May news
Luke is recovering well from his last round of chemo. his counts were low and on the days leading up to his last blood work we were thinking he would be needing another platelet transfusion. He was bruising very easily and his head was beginning to look like a bruised banana.
On Monday I took Luke to get his blood work and while we were waiting for the results Luke took a little spill and again banged his head but this time the bruise was instant and VERY big so i scooped him up and took him back to the nurse who called the doctor who looked him over and said yep he's getting a transfusion.
It's kinda weird Luke's blood type is AB + which we just found out.
This was my first watching a transfusion and i thought it would be a bag of blood but it's not for the platelets it's a big bag of what looks like orange juice. which is what they give. it's very uneventful takes about an hour and then that's it.
Today we went and got the check up blood tests to make sure his platelets had gone back up and everything is back on the way up which is great.
With Luke getting better this means he can get back to interacting with kids his own age which will be good for him. I think these last couple months with no interaction with the kids has kinda set him back a bit because he sees other kids and just looks at them like hey what are you.
Well i think th next EUA will be in 2 weeks so i'll update after that.
On Monday I took Luke to get his blood work and while we were waiting for the results Luke took a little spill and again banged his head but this time the bruise was instant and VERY big so i scooped him up and took him back to the nurse who called the doctor who looked him over and said yep he's getting a transfusion.
It's kinda weird Luke's blood type is AB + which we just found out.
This was my first watching a transfusion and i thought it would be a bag of blood but it's not for the platelets it's a big bag of what looks like orange juice. which is what they give. it's very uneventful takes about an hour and then that's it.
Today we went and got the check up blood tests to make sure his platelets had gone back up and everything is back on the way up which is great.
With Luke getting better this means he can get back to interacting with kids his own age which will be good for him. I think these last couple months with no interaction with the kids has kinda set him back a bit because he sees other kids and just looks at them like hey what are you.
Well i think th next EUA will be in 2 weeks so i'll update after that.
Wednesday, May 5, 2010
Last day of chemo......
Hopefully this will be the last day anyways.
Day 2 of this round of chemo didn't go too well. Luke himself was his normal chemo self restless and such but then there was also the vomiting. This isn't a good thing in the last 3 days he's had plenty of fluids but if he keeps it up I'll be back at the hospital tomorrow morning. Hopefully the drug he has for vomiting will help.
Other then that now it's normal after chemo stuff keeping an eye on his blood counts. They told us that this time his counts will be way out of whack so we will probably need another transfusion of some kind. If and when we need another round of chemo it won't be for another 6 months so the good news it that we have have a little break of chemo the bad news if we go next time it will be winter and traffic getting home is shit now i can imagine what it's going to be like in the winter.
for now were waiting for 4 weeks till his next EUA.
Our next major step will be finding a new pediatrician because the one we had neither my wife or i can even stand to look at just the thought of going in to get Luke's file makes me ball up my fist (not that i would hit him)
Now this makes it hard to trust another doctor. even the ones we have now it was hard at the beginning to trust them. but they seemed to have Luke's best interest in mind so we gave them a chance and they've been good for Luke.
We might have an appointment on Monday with a new pediatrician so we'll see what happens their.
will keep you updated as the weeks go by.
Day 2 of this round of chemo didn't go too well. Luke himself was his normal chemo self restless and such but then there was also the vomiting. This isn't a good thing in the last 3 days he's had plenty of fluids but if he keeps it up I'll be back at the hospital tomorrow morning. Hopefully the drug he has for vomiting will help.
Other then that now it's normal after chemo stuff keeping an eye on his blood counts. They told us that this time his counts will be way out of whack so we will probably need another transfusion of some kind. If and when we need another round of chemo it won't be for another 6 months so the good news it that we have have a little break of chemo the bad news if we go next time it will be winter and traffic getting home is shit now i can imagine what it's going to be like in the winter.
for now were waiting for 4 weeks till his next EUA.
Our next major step will be finding a new pediatrician because the one we had neither my wife or i can even stand to look at just the thought of going in to get Luke's file makes me ball up my fist (not that i would hit him)
Now this makes it hard to trust another doctor. even the ones we have now it was hard at the beginning to trust them. but they seemed to have Luke's best interest in mind so we gave them a chance and they've been good for Luke.
We might have an appointment on Monday with a new pediatrician so we'll see what happens their.
will keep you updated as the weeks go by.
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