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
Monday, July 12, 2010
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.
Tuesday, May 4, 2010
4th round
Well yesterday we had our forth EUA and we finally met the head doctor who does it. Nice lady not too familiar with the case but nice lady who is very reassuring and says that things are going great.
They did this thing to his eye where they give him this dye that goes through his blood steam and ends up in the tumor in his eyes so they can see how active each tumor is cause where there is blood flow there is an active tumor.
She told us that lots of the tumors have calcified which means they're dead and that the retina has almost reattached which is awesome. If his retina reattaches then he will be able to have some vision in his left eye albeit it will not be able to see from the centre of his eye but maybe around the edges (peripherals) but will have a blind spot in the middle but something is better then nothing.
So his eyes are much better but were not done with treatments yet. once a month for the next 2 years we will be going to sick kids for EUA's and then still after that we on a regular basis till he's about 5 we will still go for EUA's so we got a long time of this.
There is still a chance that we may have to do some more chemo but that won't be for 6 months and it all depends on how well the lasers and freezing goes on the rest of the tumors.
(side note) because Luke has the RB1 gene through out his entire body the chances of being exposed to radiation increase the chances that tumors may form in other parts of the body
So today our oncologist came in to talk to us about after care. and left us with some things to think about.
1) keep sun exposure limited. cause of UV rays.
2) unless absolutely necessary NO x-ray's
3) watch out for chicken pox's/ shingles
4) feed him more veggies. (now he can't argue cause the doctor said so)
5) no smoking
other then that today was pretty good day chemo went well and the day went pretty fast.
now were home and Luke looks miserable.
They did this thing to his eye where they give him this dye that goes through his blood steam and ends up in the tumor in his eyes so they can see how active each tumor is cause where there is blood flow there is an active tumor.
She told us that lots of the tumors have calcified which means they're dead and that the retina has almost reattached which is awesome. If his retina reattaches then he will be able to have some vision in his left eye albeit it will not be able to see from the centre of his eye but maybe around the edges (peripherals) but will have a blind spot in the middle but something is better then nothing.
So his eyes are much better but were not done with treatments yet. once a month for the next 2 years we will be going to sick kids for EUA's and then still after that we on a regular basis till he's about 5 we will still go for EUA's so we got a long time of this.
There is still a chance that we may have to do some more chemo but that won't be for 6 months and it all depends on how well the lasers and freezing goes on the rest of the tumors.
(side note) because Luke has the RB1 gene through out his entire body the chances of being exposed to radiation increase the chances that tumors may form in other parts of the body
So today our oncologist came in to talk to us about after care. and left us with some things to think about.
1) keep sun exposure limited. cause of UV rays.
2) unless absolutely necessary NO x-ray's
3) watch out for chicken pox's/ shingles
4) feed him more veggies. (now he can't argue cause the doctor said so)
5) no smoking
other then that today was pretty good day chemo went well and the day went pretty fast.
now were home and Luke looks miserable.
Monday, April 19, 2010
a little fright
Hey people
On Thursday we went and got Luke's blood work done and it came back really low so they said to look out for certain things like paleness sleeping lots, bleeding, that kind of stuff and on Friday i noticed that we slept a little more then normal for me and he was pale. So i call the wife an we decide to take him in to sick kids just to be safe.
(side note) we were told at the beginning that if we took him in because of these problems then it would be a 2 day affair.... we forgot that
So i drive him down to sick kids and get him admitted. luckily because of his condition he gets his own room right away. but it takes us 24 hours and a night in emerg before we get admitted to the hospital and we saw i think 4 different doctors the whole time we were there.
I would have to guess that our treatment we are following is not a common thing because telling doctors abut him and what he has and explaining everything i found myself having to dumb down my explanation cause they had no idea what i was talking about which was funny.
While we were their they did blood work on him and every time they did it got lower and lower.
So low that by Sunday morning they wanted to transfuse his platelets which help him with clotting. we weren't too sure what we were going to do but we said OK and we didn't leave the hospital till 9 30 pm Sunday.
Luke's back home now we'll see how he is in the morning.
for now everything is OK.
On Thursday we went and got Luke's blood work done and it came back really low so they said to look out for certain things like paleness sleeping lots, bleeding, that kind of stuff and on Friday i noticed that we slept a little more then normal for me and he was pale. So i call the wife an we decide to take him in to sick kids just to be safe.
(side note) we were told at the beginning that if we took him in because of these problems then it would be a 2 day affair.... we forgot that
So i drive him down to sick kids and get him admitted. luckily because of his condition he gets his own room right away. but it takes us 24 hours and a night in emerg before we get admitted to the hospital and we saw i think 4 different doctors the whole time we were there.
I would have to guess that our treatment we are following is not a common thing because telling doctors abut him and what he has and explaining everything i found myself having to dumb down my explanation cause they had no idea what i was talking about which was funny.
While we were their they did blood work on him and every time they did it got lower and lower.
So low that by Sunday morning they wanted to transfuse his platelets which help him with clotting. we weren't too sure what we were going to do but we said OK and we didn't leave the hospital till 9 30 pm Sunday.
Luke's back home now we'll see how he is in the morning.
for now everything is OK.
Saturday, April 10, 2010
Round 3 day 2
Another day closer to what we hope will soon be the end of this. unfortunately my wife and I both know this won't be over for a long time. We know that Luke will have to live with this for the rest of his life and not only his life but his children's and there children's lives.
How will he deal with this when he gets older? Will we as parents have taught him and shown him everything and supported him and given him all the tools he will need to deal with this?
As I've said before we was parents are not here for us. We are here for the child. As every parent knows they would do anything to protect their child from anything but when it comes to something like this where you are helpless and all you can really do is hold your child and tell them in truth or not that everything will be OK because you are there. Is that right? Lying to a child is easy because they will believe anything even if it's just a white lie that helps them get through a tough time but the truth of it is that we don't lie to kids to protect them we lie to them to protect us. Admitting that we've failed to protect them by admitting there's nothing we can do to stop what ever bad is happening means we've failed in some way to do what we said we'd do from the first moment we leaned down to that pregnant belly and said we'd always be there for them and do what ever we can to protect them.
This scares people at least it scares me. My wife and Luke are everything to me and knowing that i couldn't do something to protect them scares me. So you tell little white lies it's OK daddy's here everything will be better. I know your in pain but daddy's here everything will be better. I know your blind in one eye but don't worry daddy's here. I know the chemo drugs make you feel like crap and your puking and you can't sit still for 5 mins but daddy's here it'll be all better.
Each person knows that if they could take something like cancer from the person you love and put it in you you would.
What you have to realise is that the person you love needs you to be strong for them. They know that you can't really make the pain, hurt, feelings, go away no matter what you say But what they need is that person there to tell them it'll be OK to tell them you'll make it better because by doing this you pass on your strength to them making them more able to handle what ever they are dealing with.
I think anyways. I could be way off on this but I'm tired and it's been a long day. I'll read this again later and edit out the crazy sounding parts. :)
SO today was not very good. I guess it's because we fed him a little last night but today he was miserable. Tossing and turning taking turns being held and bounced by the 3 of us. He was sick today with some vomiting. Things we learned NO FOOD before chemo. maybe a little water.
other then that a pretty uneventful day. tomorrow we start the drugs and GCFS (the needles) and all the things he HATES eye drops and the other drugs we have to force down his mouth.
Although he has learned to spit the drugs out. that reminds me I have to check if they have a different flavour of one of these drugs cause he reallllly hates it.
thanks for reading my little rant will keep you updated.
How will he deal with this when he gets older? Will we as parents have taught him and shown him everything and supported him and given him all the tools he will need to deal with this?
As I've said before we was parents are not here for us. We are here for the child. As every parent knows they would do anything to protect their child from anything but when it comes to something like this where you are helpless and all you can really do is hold your child and tell them in truth or not that everything will be OK because you are there. Is that right? Lying to a child is easy because they will believe anything even if it's just a white lie that helps them get through a tough time but the truth of it is that we don't lie to kids to protect them we lie to them to protect us. Admitting that we've failed to protect them by admitting there's nothing we can do to stop what ever bad is happening means we've failed in some way to do what we said we'd do from the first moment we leaned down to that pregnant belly and said we'd always be there for them and do what ever we can to protect them.
This scares people at least it scares me. My wife and Luke are everything to me and knowing that i couldn't do something to protect them scares me. So you tell little white lies it's OK daddy's here everything will be better. I know your in pain but daddy's here everything will be better. I know your blind in one eye but don't worry daddy's here. I know the chemo drugs make you feel like crap and your puking and you can't sit still for 5 mins but daddy's here it'll be all better.
Each person knows that if they could take something like cancer from the person you love and put it in you you would.
What you have to realise is that the person you love needs you to be strong for them. They know that you can't really make the pain, hurt, feelings, go away no matter what you say But what they need is that person there to tell them it'll be OK to tell them you'll make it better because by doing this you pass on your strength to them making them more able to handle what ever they are dealing with.
I think anyways. I could be way off on this but I'm tired and it's been a long day. I'll read this again later and edit out the crazy sounding parts. :)
SO today was not very good. I guess it's because we fed him a little last night but today he was miserable. Tossing and turning taking turns being held and bounced by the 3 of us. He was sick today with some vomiting. Things we learned NO FOOD before chemo. maybe a little water.
other then that a pretty uneventful day. tomorrow we start the drugs and GCFS (the needles) and all the things he HATES eye drops and the other drugs we have to force down his mouth.
Although he has learned to spit the drugs out. that reminds me I have to check if they have a different flavour of one of these drugs cause he reallllly hates it.
thanks for reading my little rant will keep you updated.
Subscribe to:
Posts (Atom)