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.

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.

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.

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

Monday, June 14, 2010


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.

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.

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.

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.

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.

Thursday, April 8, 2010

Round 3 day 1

Another day down.

Today wasn't too bad Luke was semi sedated and to keep him happy we used the exercise ball to bounce him up and down which kept him happy.

Not too much else to report as for the whole time were are their we basically just sit there and wait till Luke's done and keep him comfortable.

Wednesday, April 7, 2010

Round 3 Chemo

Well it's been another 21 days and it all starts over again.

Over the past 3 weeks not much has been going on
Luke has maintained his weight of around 10.5 KG (around 20 lbs) and has grown another 3 cm and now stands at 2 foot 7 inches

He has continued to loose his short hair a little at a time but nothing to noticeable.

The past three hearing tests there seems to be a little trouble with the hearing in his left ear so today during his EUA the ear doctor came by and checked him out and says theirs nothing wrong with his ears so hopefully will get a chance to talk to him and find out what is up with the test results from the hearing tests.

The results from the EUA today were very good. the tumors in both eyes have continued to shrink. Were not out of the woods yet and only time will tell how things will go. We remain hopeful but have accepted that Luke may still lose his left eye.

Today we also met with the geneticist and found out that Luke does have the hereditary form of Retinoblastoma. This means that my wife and I shall be getting tested to see if either of us are carriers of this certain gene. In 6 weeks we;ll find out the results. All it really means is that if we do have the gene our other kids will have a 50% chance of having Retinoblastoma. If we don't then it means that our next children will have a 3% chance of have Retinoblastoma.

Luke's children will have a 50% chance of having Retinoblastoma. ???? How is this something you explain to your child? When do you sit your child down and tell them? How will this news effect his life? What decisions will he make knowing what may happen to his children?
There are so many questions that have come up now i guess the good news is that we will have a couple years to figure this all out.

Tomorrow we will be starting the next round of chemo. He handled the chemo better last time because they gave him a higher dose of some of the drugs which helped him sleep a little better. Also grandma was there to help with the cuddling that keeps Luke calm which was a big help.

Wednesday, March 24, 2010

round 2 update

Well so far so good.

Luke's recovering well from his chemo treatment and it's been better for all of us.

we went and had his blood work one on Monday and it came back that he's neutropenic again but no sign of fever or anything else so (knock on wood) all is well on this front.

before his last treatment we had decided to shave his head because his hair had started to fall out. So we did shave his head but we left a little on top kinda like an army cut but the day before he was to start his second round we decided to finish the job and just do it all.

well lets just say that cutting ones hair then a week later cutting it again n a different spot makes the hair tend to be uneven so now he's kinda got he jean luc picard hair cut going on.
Surprisingly though his hair seems to be growing back just fine. so we might have jumped the gun little.

We got a call from the genetics lady she told us that Luke has the genetic type of cancer and that both the wife and i will have to get tested to find out who's got what. if one of us does have it then our next kid has a 50% chance of having retinoblastoma. if we don't then there may be a 3% chance or something like that. they also check us because if one of us does have it then that person will be more prone to getting a cancer later on.

SO that's where we are at right now we don't go for chemo again till around the 5th or so of April.

Tuesday, March 16, 2010

round 2

I'm not sure what we did differently this time but what a difference.
It could have been that we didn't give him any milk before chemo.
It could have been that the doctors increased some of the drugs
but today was better then the last time Luke slept most of the time without the agitation of what ever was wrong last time. i guess having grandma there to cuddle him didn't hurt either.

Turns out Luke has grown 2cm since his last visit 3 weeks ago WOW let hope he keeps the snider height and keeps growing :)

We went and had another hearing test done before we started chemo. We will be doing this every time because the chemo can affect certain parts of the hearing so they test to make sure he's OK.

One of the side effects that no one told us before of having and EUA is that when they incubate during the procedure is that the tube which runs from his ear to his throat (Eustachian tube)
tends to get a little clogged up causing him to not hear lower sounds. it's not a huge problem but it messes with the hearing tests so next time we have an EUA the ear/nose/throat doc will take a look at it.

they gave him laysics again today (it helps him pee) and boy does this stuff work. Peed on me peed on grandma.

other then that it was a good day and were back at it again tomorrow.

if you have any questions please feel free to comment and i can answer them as best i can. I'm sure you might have some questions that i haven't even thought of yet to ask the doctors so any input would be great.

We also shaved his head completely now.

on a side note i've now been peed on pooed on puke'd on by my son :) the joys of parenting these are the things they don't tell you about in any book.

Monday, March 15, 2010

Not out yet

Well it's been awhile since i last posted cause nothing has been going on Luke's been healthy and acting like himself for over a week now.

Today was Luke's second EUA (exam under anesthesia). It went much better the the last one. As you will recall the last time he was sick and this caused problems with his breathing and his O2 stats causing us to spend the night in the hospital with him.

This time everything went fine and there were no problem although we did learn one thing. ONLY SMALL AMOUNTS OF LIQUID AFTER. even though he was starving and thirsty i gave him way to much juice and water we should have waited.

So the doctor went in and had a good look at his eyes. Her report was this. his eyes have responded well to the chemo. His right eye tumors have reduced a bit and she used the laser on them to try and shrink them more and the vision in his right eye is perfect. they took pictures of his eye which i will post later.
The tumor in his left eye has shrunk by 50% which is awesome but she warned us that when it shrunk it shattered into a million little tumors which is bad for treatment because it's harder to go in and zap them all.

she warned us that he may still lose his left eye and we will look at it at our next EUA.

my personal feelings are that if the tumors have reacted this well to the chemo then we will wait till after the third treatment to make the call on if we should take the eye or not.

Tomorrow is our next round of chemo

Wednesday, March 10, 2010


The above pictures are from Luke's MRi. The show you the tumors in his eyes. The tumors appear as the shadows in his eyes. Unfortunately there will not be anymore MRI's to show how the chemo shrunk the tumor.

These pictures show the scar from the central line they put in Luke's chest. You may also notice the bump under his right boob this is the reservoir

Saturday, March 6, 2010

First session done


for now

Luke really doesn't like the meds he's on and now were just down to eye drops.

So today we went back to the hospital to check out his eye and do his CBC's

Apparently this morning all of the doctors were discussing Luke's case and they think the reason for the pinkness in his eye is that the dead cancer cells are floating around in there and that since his white blood cell count has jumped up so high that his white cells are now attacking his dead cancer cells. THIS IS GOOD.
So they have him on antibiotic drops and a new steroid drop for his eye to help clear it up.
All his other meds are done Even the GCSF which is the needle that we gave him every day.
Just to back track a little. We give him a daily shot of this GCSF to help boost his white blood count which it has done. Instead of giving him a shot every day they put this thing in called an Insuflon catheter. Now when i saw this thing in the package and when they told me where it goes i was like at you kidding me that's huge it's going to kill him. Well today since there is no more GCSF they took it out and the nurse is like you can do it, and I'm like NO i can't it's going to hurt him and it's nastily big and gross. She looks at me like I'm on crack.
We go into the room and she's like fine you distract and I'll do it I'm say OK and I'm like Luke look here and she then tells me she's done???? NO WAY i look down and this thing is the size of a lug hair small tiny little thing i was soo confused. I'll post pictures of all this soon

So now Luke is patch free and all he has is a small scar on his chest and neck and a pick eye he does still have his hair and both his eyes.

Wednesday, March 3, 2010

Little scare

So this morning after i woke up i came into the kitchen to notice their was something wrong with his eye. It was all red and watery. We got a little concerned and so we called our nurse and she told us to come down to the hospital to get it looked. The main concern being with his counts so low that their could be something seriously wrong.

So packed up and down to the hospital we go. having Luke being neutropenic we got put int a private waiting room to wait for the doctor. It also means that we get seen faster. The Doctor came promptly and took a look. He put a special dye in Luke's eye check out what the worst case would be and that was a form of cold sore in his eye.

But everything was fine he has a little bit of eye irritation for which the doc gave us some drops for.
The good news of today is that when the doctor looked into his eyes i noticed that he was squinting which is something he wasn't doing when we went in for our first visit.
i mentioned it to the doctor and he agreed that there seems to be some progress from the chemo. He said that the tumor seemed to have shrunk on the bottom. :) YEAH

Then we went upstairs and had his bum looked at and the doctor said that some discolouration is normal with chemo maybe not in the bum but on some areas of the body. So all is well with the bum.

Then back downstairs for a CBC test which means we don't have to go tomorrow but i do have to go for another one on Friday just to make sure that his blood counts are going the way they are supposed to.

more on Friday........

Tuesday, March 2, 2010


Monday we went to the hospitals satellite site to get blood work done.
We go in and meet the nurse she pokes his finger with a small needle and then milks the blood out of his finger she only takes .5ml of blood. Thats it. Then we go home and in a couple hours she calls us with the results. they aer looking for a couple things the test is called CBC (complete blood count) it measures all the different parts of the blood which is important for cancer patients because if certain parts of the blood are too low bad things can happen.

Trombocytopenia is the medical term for low platelet count. Platelets are colourless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessels. So if your platelet counts are low you will see bruising and bleeding that won't stop with normal pressure.

The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections and therefore a patient with to few neutrophils is more susceptible to infections.

The last thing the really look for is called hemoglobin basically is your red blood cells. A low hemoglobin level is called Anemia. If his hemoglobin levels fall below 60 he may need a blood transfusion.

Luke Is neutropinic which means he is very susceptible to infections and getting sick. Were not living in a bubble yet. We are monitoring where he goes and who he comes into contact with.

Life so far hasn't been a big change were over the changing of diapers with gloves and Luke seems back to his old cute self. The only real change we've noticed is that he now wakes up in he middle of the night crying really bad were not sure if it's gas or pain or what but it doe take a while to get him settled.

His bum has kinda turned a weird colour. We think it's from the chemo drugs in his diaper but we've put soo much Vaseline a bottle and a half in a week. we'll mention it on Thursday when we go back for the next blood test.

Friday, February 26, 2010

After 1st chemo update

We left the hospital Tuesday and went over to the in laws for dinner Luke promptly scarfed down his fav food "bread" followed by some water and a bite or two of chicken wings.
Wednesday saw Luke feeling better eating, playing and talking up a storm.

He's been OK at nights he vomited a couple times the first couple nights but that seems to be under control. He's on a bunch of meds to stop him from vomiting so I'm sure they are helping.

Wednesday he got his cold back that he had been fighting before all this started so now his nose is running like a tap and he's soo grumpy and just wants to be held. last night (Thursday) he wasn't sleeping at all and i had to bring him to bed with me because my ample belly is the only soothing thing to him (as he naps on me now)

He's no a real fan of all the drugs that he's taking
I'll list them if your curious

GCSF - he gets this once a day from the home care nurse and it help boosts his white blood cells.
Benedryl- helps prevent the allergic side effects of one of the other drugs
Lactalose - helps him poop
maxeran - makes the bowels move because one of the drugs given during the chemo slows down the bowels
ondansetron - helps stop the vomiting
zithremax - is an antibiotic to help fight infections.

no hair loss yet and it's been 4 days since his first chemo. were not sure if he will lose his hair so we haven't shaved his head yet.

We go on Monday for blood tests to see how his blood counts are if his platelets are too low he may require a transfusion. but he's a tough kids so i don't see that happening. they also check his white/red cell counts.

his bandages came off and we got our first look at his scars from the central line. the one on his neck isn't too bad the one on his chest is about an inch and a half long.

well that's it for now will update Monday if nothing of interest happens

Tuesday, February 23, 2010

Chemo day 2

Another long day

Luke again didn't like the treatments tossing and turning all day except today he settled around 2:30 which was nice.
Doctor came in and talked to us again explaining stuff.
I went and picked up his meds from the pharmacy the government covered most of them and my insurance cover part of the one that wasn't so the price wasn't too bad.

Today they took out the Port which is the part that sticks into the catheter which is under the skin. So now all you see is the scar on his chest slightly above his right nipple. Scars are OK cause "chicks dig scars" i would rather a scar then no eye.

Coming home wasn't bad at all there was no vomiting like yesterday (sorry dad)
we went over to the in laws for dinner and after yesterday seeing him groggy and sleepy we expected the same today but he was eating bread an drinking water and even managed a bite or two of a chicken wing. Lets hope he keeps it down....

I had to go to shoppers and get more Vaseline, benedryl and polysporine.

If all goes well tonight then we don't have anything to do till Monday where we will go for a CBC blood test.
So now we wait and see how his body will react to the chemo. He may loose his hair but we won't know till later in the week.

I'm not sure if I'll ever get use to being puked on but apparently it's part of fatherhood so I'll deal with it.

Monday, February 22, 2010

First day of chemo

Another really long day sitting in the hospital.

show up at 8 am and pick the good bed.
Off to sign in but wait they don't have us on any list oh oh. Oh well i go back tot he room to see whats going on.

Waiting for doctors orders to get things rolling. Starting pre Chemo meds.
that takes 30 mins to do then in comes this big glass jar which is a part of the chemo treatment a lot of this drug and a little chemo which takes about 5 hours to do then there is another 2 hours of hydration and then also today we did some sort of antibiotics which took 4 hours.

things we learned today

how to change diapers with rubber gloves on.
if your going to be hanging out in a hospital for a long time bring slippers.
make friends with the people around you talking to other people makes the time go faster.
when doctors tell you he's going to sleep for 8 hours they lie. i spent most of the day cuddling him cause he was soo grumpy and he fought the drugs till about 4pm
feeding is not a good idea no water no cereal.
watching your child throw up is a hard thing to do and you can't cuddle them cause then they throw up on you.
bring more baby clothes or use the hospital clothes cause they can only pee on so many outfits before you run out.

Vaseline is your new friend.

back tomorrow for more.

Sunday, February 21, 2010

Kidney test

On Friday we spent the day in the hospital again.
We went for a kidney test for Luke to find out whether or not his kidneys can handle the dose of chemo he will be receiving.

Th day starts at 8am meeting up in the same room that he will also be getting his chemo in.
the nurses hook him up to an I.V. so that they can fill him full of fluids. After about 4 hours we take him down to a clinic where they "try" (because he's so chubby it's kinda hard to find a vein)
to put in the radioactive material that will be absorbed into his kidneys and then excreted out.
the take pictures and they do blood work to see how fast the dye is run through his kidneys.

While we were waiting for the tests we sat down with the oncologist.she explained some more things to us like we will have to wear gloves and aprons and protect our selves while changing his diapers. apparently the chemo is excreted into his diaper and it can transfer to our skin should we touch it. Also we have to use a lot of Vaseline on his bum and groin to protect his skin from burning. this is going to be kinda hard for me cause I'm a baby powder kinda guy I'm not a fan of smearing anything on another mans groin even if it is my kid. So we'll leave that up to the wife.

then home for the weekend to prepare for Monday and Tuesday which will be his first 2 days of chemo.

Thursday, February 18, 2010

Hearing test

So after spending a night on a not so comfortable chair beside Luke's bed and because he was such a grump last night he spent a portion of the night on this little chair making my night a lot longer.

The worst part was that we were woken up with an announcement calling CODE BLUE which was soo loud i thought it was our nurse so i sat straight up freaked out looking around and looking at the nurse like OMG whats wrong.

so at 10 we were met by our oncology nurse a great woman who is very helpful with explaining everything. We went with her to get Luke's main line cleaned which consists of them removing a small amount of blood from the line which contains heparin which is a blood thinner and it stops the blood from clotting in the line. Then they flush the line to get all that out with some saline which is just some clean saltwater. then they put in another dose of heparin. Looked painless kinda scary the first time you see it.

Then we were off to the hearing test. The reason they do the hearing test i found out is because the form of chemo they will be giving Luke or i guess with all chemo is a chance of hearing loss.
The lady went about her tests with Luke but he first tests she did were not conclusive we think it's because he still has a bit of a cold and there is a lot of pressure in his ears.
The next 2 tests we were lead to a small sound proof room which was kinda weird to be in. They make a bunch of sounds come from 2 speakers and it's supposed to make the child look there by seeing how well each ear hears. unfortunately Luke was too busy playing with the toys that he hardly cared about the noises. Also when Luke grew up there was 9 people in the house so it was pretty loud at dinner times and family times.

After the tests it was back to our room where we sat down with our oncology nurse and she explained things to us like.
- signs that would mean trouble when Luke comes home after chemo.
- side effects of drugs
and other stuff that I'm sure she'll tell us again. She wrote it all down but i haven't had a chance to read it yet.

Then our oncology doctor came in and got us hooked up with home care people that will come this weekend and flush Luke's main line so we don't have to go back to the hospital.
then home for a quick nap and then back out for running around to catch up with other things that we need to deal with and of course our phones and ipod and everything else we had died
** note for next time bring chargers for or things**

Wednesday, February 17, 2010


Today was a big day.

We woke up at 4am to travel to the hospital and be here for 6am.
We arrived at the hospital and were taken to a room where we started the long process of the day
Taking Luke vitals and getting him ready for the surgeries.
Then we met with his doctor a very nice woman who sat down with us to go over the days events.
1. lumbar puncture
2. bone marrow test
3. insertion of a central line.
4. removal of his eye

She asked us our concerns and when we asked if she was taking the eye she gave us this shocked look and said i don't think were taking the eye. My wife and I looked at each other with shock disbelief and any other emotion. But we were told "if it was that bad you'd be taking the eye"
no no no she said here is the criteria for taking the eye
1 If the tumor had gotten out of the eye. Either through the optic nerve or through the front wall of the eye into the blood.
2 very high amounts of pressure in the eye
3 severe irritation (redness around the eye)
4 no vision at all.

and because there might be a chance for vision in his left eye if the tumor shrinks they won't take the eye yet.

WOW what a relief. he keeps his eye for a little longer at least.
so then in came the doctors who put him to sleep to explain the risks and what they were going to do. they also asked if we wanted to come in to help put him to sleep i of course offered to go cause i got a little white suit and booties and a hat. most of which was way to small for someone of my size.

In we went and i held him down and comforted him while they gassed him to sleep.

about 40 mins later the doctor came out and told us things looked better in their then we had thought the mass in his left eye was massive 5mm but there was still hope that everything would go well (she even seemed kinda excited)
this news coupled with the fact they weren't taking his eye lifted our spirits now we just had to wait till the put the central line in.

this particular central line would be used for chemo treatment i didn't get a chance to see what it looked like but if i can find a picture I'll post it.

We also met with a genetic counsellor and she explained some things to us but will go over genetics with us later.

Also the social worker came by to see how we were doing and to offer us some assistance with certain things.

we then waited as the rest of the family showed up to be supportive. although no one got to see him till around 5pm. there was a slight complication when he woke up. Luke has a cold and so his oxygen levels were low so it took awhile to get them back up and as a precaution they kept him overnight.

Everyone is really helpful and very willing to share their knowledge with us about everything and it can be kinda overwhelming considering that just a week ago we were a regular family to go from that to almost having our son loose an eye is quiet the roller coaster of emotions and stress.

were getting through it though and my wife and i are supportive and talk more now then we ever did before about "feelings"

Our next major hurdle will be on Friday when they do a GFR which is a kidney test to make sure that his kidneys can handle the intense chemo treatment they want to give him.
Thursday we have a hearing test just to make sure that his hearing is OK i guess I'm not sure why were checking his hearing but when i find out so will you.

Sunday, February 14, 2010

Finding out

Well finally we got the MRI today. Luke being young needed to be put under so he wouldn't move, he also has a little cold like everyone in the family right now so they had a doctor watching over while they put him to sleep.

The doctor finally showed up and told us that yes Luke would have his left eye removed. We had prepared ourselves for this and understood why. I asked if we could see the MRI scans (warning if you ask to see these they are pretty gross and yet cool at the same time). We checked them out and he showed us what was going on in his eyes. you could not only see his eyes but his brain and his teeth and everything else inside.

We were concerned about having trilateral retinoblasoma and asked about this but he wouldn't give us an answer about it were guessing it's because he does have it but he doesn't want to be the one to tell us.

So we discharged and now have him at grandma's house.

We have to wait till Wednesday which is when they will take out his eye and do a spinal tap, a bone marrow test put in a central line and what ever else needs to be done.

we were checking out YouTube and were encouraged that there is a little girl on their who is doing well. Also my mother ran into a lady who's son has this and is now 18 I'm waiting to get her number to contact her and ask her about her adventure.

on a side note this woman also has 2 other kids who turned out normal which is a great relief to my wife.

I also called my boss and told him my boss being the great guy he is with 2 of his own kids understands what I'm going through from a parents perspective and has told me he will be as supportive from a work perspective as i need.


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.......

Friday, February 12, 2010

Telling the family

My wife told her family yesterday after we got back from the hospital. The news for them was really hard to hear as they had just lost heir granddaughter 4 months ago from a congenital heart defect where she had a hole in her heart. Loosing her had devastated them and this news hit them like a brick. We did our best to reassure them that we were not going to loose Luke but i`m sure their still thinking about the one word ``CANCER``.

I wasn`t sure if i wanted to tell my family right away i didn`t want them to start treating luke differently or thinking they couldn`t come around or whatever people would think. i also didn`t want to be answering questions cause i don`t know anything yet. But i decided around 12am that it was as good a time as any. I called my mom first and work her up to tell her. At this point i finally broke down and cried as i told her everything i knew i answered some questions and hung up the phone and went and hugged my wife.
Next i phone my dad he was awake he wasn`t sure how to take it and i`m guessing he`s still digesting all this too. i then called my older sister and she cried and got mad and went through the emotional roller coaster one goes through with these things for us.

Then today i called my older brother and my little sister. By this time i had a little speech ready which is the same one i will use for everyone else.
- Luke has a rare for of cancer
- He`s at Sick Kids and they are 1 of the top 5 hospitals in the world for this.
- i don`t really know much just yet waiting for the MRI
- it`s a 1 in a million chance of him getting this so were going to get him to play the lottery this weekend
-worse case he dies not so worst case he looses his eyes not not so worst case he looses his left eye and so on.
- i`ll let you know more when i know more.

Both of them took it the same mostly shock. Everyone has told us the same thing if we need anything to let them know.
My wife and i are both strong people and we know that we could rely on both our families for anything which makes this a little easier.

Day 1

Well today we found out our 14 month old son Luke has a rare illness called Bilateral Retinoblastoma.

A little background on our family.

Luke was born December 18th 2008 with no complications 7 lbs 8oz
Dad = me a perfectly healthy 31year old male of Canadian decent.
Mom is a perfectly healthy 25 year old female of Portuguese decent.

How it started?

Since birth we had noticed his left eye was a little lagging kind of lazy but we thought it was just part of normal eye development. around 6 month we noticed when we took pictures (with flash) that in his left eye their was a flash of silver colour.
At our 9 month check up we mentioned it to our pediatrician who told us everything looked normal.
So 2 days ago on February 9th 2010 was wife had become really concerned about this reflection in his left eye which was becoming visible with out the use of the camera. I took him to a local optometrist. This is where it all really started.

I was given a diagnosis of either cataracts or Retinoblastoma and told we should go see a specialist.
Today February 11th 2010 it was confirmed that Retinoblastoma is what our son has.

What does this all mean?

Honestly we don't know yet. We sat down with the Retinoblastoma team at Sick Kids Hospital here in Toronto and they told us a bunch of things of which most i didn't understand. My wife being a nurse was able to grasp some of it but with her not working in the Oncology department she understood more then i but not all of it.

How has this affected us?

WOW well when you find out your first born son could loose both his eyes of worse die it all become surreal and you take it in stride. as soon as we were told by the optometrist about Retinoblastoma we like everyone else who is looking for answers we googled it. This tactic was both a help and a hinder. Knowing what could happen helped us cope with the facts before we even knew what was going on BUT it also hindered us because it made us look at the worst possible outcome before we even knew what was going on.

We are taking this all in slowly were not mad (yet) at god or anyone. We are not informed enough to do anything yet. We still treat our son the same. We didn't come home and wrap everything in bubble wrap so he couldn't hurt himself more. as far as I'm concerned our son will continue to do everything the same. He'll walk on his own, He'll tease the cat the same, he'll tear apart the pots and pans drawer the same.

What next?

All we know for now is that we are waiting to get a call about an MRI to find out the extent of everything. and apparently on Wednesday were going in to get a central line put in for chemo, and also a LP (spinal tap) and a bone marrow something or other.