Port Pictures

The Port was installed about 2 1/2 years ago. it is inserted just below the skin and attached to the top of the rib cage. A tube runs up and into the jugular vein.
Every time Luke went to get chemo or an EUA he was accessed which means the tap into the port so they don't need to continue poking him. kinda like an IV in your hand.

Chemo is injected into this as for young children the type of treatment Luke received for chemo was a really strong dose and would have burned through normal veins.

when just going for an EUA they access the port and draw blood and anything else they need to do.

when not in use the resevoir is filled with a drug called heparin which is a blood thinner and makes sure no clots form in the port.

Pre-op you can see the port under the skin

A port can last up to 10 years or that's what we were told at least.

Post-op 

Actual Port that was removed

Port removal

Well 12/12/12 was the date and we had Luke's port removed.

We weren't to sure how things would go as Luke had a bit of a cough. But he was cleared by the doctors to go ahead with the removal. So everything went fine Luke got a dose of  midazolam to help calm his nerves. He's been having a tough time going in by himself so we gave him a little helper to "relax" him.

So surgery goes fine port is removed and into recovery he goes. BUT low and behold there is something wrong. His oxygen stats are low around 85 when they should be around 97-99%

So on oxygen he goes and the doctors start to hear "crackles" (medical terminology)
And the doctors are nervous. So they tell us we are staying to keep an eye on things.

Then begins the barrage if doctors. Ophthalmology who is the primary doctors but thy don't know nything about the lungs or the body just the eyes so they defer to pediatrics but these guys have no idea what's going on. BUT
While we're still in post op we're the responsibility of anesthesiologist BUT were also under the care of the IGT team (the guys who removed the port)

So thats 4 different departments.

And everyone has a stake in the case. It makes sense that peds is in charge cause he is having some lung issues and what do these other guys know about lungs.

Doctors decide Luke has a mild case of pneumonia. But no one is sure how to proceed and no one is telling us when we are leaving.

During the night Luke was having a horrible time sleeping because of his cough. I ask the nurse can you give him something and she tells me no we don't have cough syrup.(your a hospital, and you can't give him something to sleep or stop coughing.) so I have to go down to Starbucks for some honey and warm water and 10 minutes after he drinks it BAM he's out daddy to the rescue

In the morning ophthalmology comes in and tells us we can go home.
IGT comes is says hi
Peds comes in and says hey we're gonna take a look then I'm gonna go get another dr so you can!
Explain everything again.

Other doctor comes in says ya were gonna do an X-ray I say umm no your not he doesn't need one dr
says well we need to rule out some bull%^#%% EXSCUSE about bout blood clots in his leg which when I tell Monica she looses it cause she can't think why he'd have a clot in the first place. Turns out this guy is just a douche who wants an X-ray.

Next door I notice dr Chan. (Oh oh someones in trouble) I catch her and get her help
To get us out and sure enough an hour later we're leaving. Also finding out that the dr in emerg
are running tests that they shouldnt be (oh oh)


Needless to say we're home. We're rested and glad to be rid of the port.

July friday the 13th 2012

I guess i should keep this more up to date and stop writing on the "unlucky" days.

What has happened in the last 6 months?

Luke got a prosthetic eye and with a couple adjustments we think its starting to fit right. Luckily it hasn't fallen out yet and there have been 0 issues with it.

Our last visit to the hospital was a trip to the exam room rather then the surgery floor. They tried (somewhat successfully) to look  in Luke's eye while he was awake. Next time we go it will be another EUA.

Ben was born 9lbs 13 oz. Luke now has a little brother.
We took Ben in to get checked out to see if he had any signs of RB. The doctor proceeded to tell us the chances of him having it were 1/50000 i said that's nice that's what they said about Luke so just check the eye.

Then there was one point of the check up on Ben where they had to put those things in his eyes to keep his eye lids open. The doctor seemed to be concerned that Luke shouldn't be in the room. Personally i thought he should be there to help console his little brother when it was done and that somehow it might help him with his own journey. When the doctor told me we should send Luke out of the room because it might upset him. (Again with a snide comment) Doc he's been through chemo pokes and prodes galore AND had his eye removed i think this would be a cake walk. So the doctor went and did it.

Luke was right in there wanted to watch and everything. When it was all over he went over to Ben and said it's OK buddy (very cute)

SO it seems that Ben is free and clear NO RB. woohooo

For me it seems that this will add another one of those tough questions. From why me? to why only me?
Just another self reflecting life question will will need to be able to answer when the time comes. Oh it will come as it always does whether the child realises it or not inevitably it will come out at some point either during a fight or in some what does it all mean god question on some Sunday night after dinner.


I'm getting excited about the abundance of questions that Luke and Ben will have for me as they get older about everything.

Other then that it's been a pretty quite 6 months.

Start of a new year!

Greetings all

Well it's been almost 2 months since Luke had his left eye removed and we went for our EUA.
Great news. Right eye looks great no problems at all. Cancer is there but doesn't seem to be growing. Our next visit is 8-10 weeks!!!

Prosthetic Eye.

While in for our EUA Luke had his eye measured for his permanent prosthetic. We go back in a week to get it inserted in. We found that with his temporary eye the only problem we had was excess build up of sleep in his eye and not a lot of eye movement.

The Doctor told us that there will be a lot less build up and more movement as the eye heals.

will keep you updated as thing progress

Great Canadian Chill

Greetings everyone

I've decided since Luke has been such a great spokes person for Sick Kids that I would do my part.

I've decided to jump into freezing cold Lake Ontario. January 1st

Please help with any donations you can. It is short notice but I'm sure we can raise 300$ and more in 2 weeks

http://toronto.thesearsgreatcanadianchill.ca click on sponsor a participant and search Jess I'm the only one.

Thanks in advance for your help and support

Left Eye

You know when you prepare yourself for something but then when it comes time to actually do it you start to have second thought? Like bungee jumping or sky diving?

Well this was sort of the same thing. You know every possible out come, you talk yourself into doing it but some how when it comes time to do it you think to yourself WAIT maybe there's something else we could try.

You get over those feelings. When you realise that the little person in front of you has suffered enough Chemo, needles, tests, being poked and prodded and that This is the right thing.

Luke's day started early getting his port accessed and having blood work done.

then down to the pre-op area to get his eye drops that would dilate his eyes. this time 3 sets of eye drops instead of 2.

We've found now that he's getting older that he hates going into the operating room. He knows whats going to happen. So lately we've been giving him some drug to help him mellow out. Seems like pretty good stuff to.

I took him in this time. I put on the white sterile suit they give you the little booties that don't fit on my shoes and the bathing cap and take Luke in. He had been sleepy so we didn't give him any drugs but as soon as i picked him up he noticed what i was wearing and started screaming. I had to bring him in and lay him on that little table while listening him cry out No daddy No. Heart breaking stuff it was.

Then out for lunch the whole thing take around 4 hours. First they do another EUA just to make sure they haven't missed anything OR that it didn't start to heal by some grace of god.
Then they take it out. They will preform a whole bunch of tests on it and then I'm getting a piece for Luke. When he gets older i want him to see what was going on in there it's one thing to see a picture but another to actually see it in real life.

Out of the OR and up to a floor for 2 days. I expected more bandages like as if he'd had brain surgery or something but it was just a really bulky eye patch.

It had been a while since we'd tried Morphine for pain so we thought we'd give it a try small doses.
Not sure if it was the drugs or the surgery itself but he was a miserable grump the whole time. I spent the 2 days in the hospital with him and he wouldn't eat or drink anything till about 9 am the second day. I had to bribe him with popcorn that a friend had brought in. one piece of popcorn for a sip of water then another and another. finally around 1030am he was hungry so i packed him into a wheel chair and took him and his IV down for some pancakes. He ate the whole thing + fruit+ juice +water + crackers + more popcorn.

About 4pm they came in to take off the patch. WOW was this a tense time. WHAT WOULD IT LOOK LIKE??

It looked normal?? looked like he'd been in a fight. All he had was a black eye. it took him a day before he would fully open his eye but it kinda looks normal. Doesn't move all that much but unless your up close you really wouldn't notice. I think anyways.

Glasses!

ever tried to get a 3 year old to wear glasses for a extended period of time. Were trying to.
We went out and got him a pair of Flexible glasses that can move and bend and twist in all sorts of directions with a pair of safety glass lenses. 2 pairs.

now the battle is getting him to wear them and stop touching the lenses which get all mucked up with finger prints. (will take advice on this)

That's about it 6 weeks we'll go back and have another EUA.

The end is near

First I would like to thank everyone that has stood by us through this whole ordeal.

Over the past couple days I've noticed Luke's eye being lazier and lazier and i knew that wasn't a good sign. So i told my wife yesterday that this EUA wasn't going to be that good.

I hate when I'm right.

I went in with full knowledge that this would be the one where they told us it was all for nothing and that Luke's eye had to come out. It gave me a chance to prepare for what the next steps are.

The doctor came in and told us that the tumor in his left eye has gotten bigger and also the seeding has gotten worse. Meaning that none of the treatment for the last couple months has been doing any good.

We had decided a while ago that we wouldn't put Luke through anymore chemo. for all the good it might be doing it was by far doing more damage to him mentally then what ever good it might have been doing physically. Also for such a small child to be having that much chemo....... how good can it be to poison the body that much?

next steps.

sometime in the next 2 weeks we will go in and have his eye removed. what happens from there were not to sure details at the moment are kinda sketchy.

NO i can't bring the eye home. I asked.
will keep you all posted as i know you will know.

Thanks

Hello people.


Well since my last post things seem to have gotten better.
the tumor has now shrunk down and is doing better the only problem is the way the tumor shrunk.
the last round of chemo worked to reduce the tumor but what the tumor decided to do was spit out a bunch of seeds ( little baby tumors) as it was shrinking.

This presents us with a whole new set of challenges. between the ages of 3-5 new tumors stop forming. The seeds how ever are not new seeds. They are old tumors that are just floating around inside the eye which still have he potential to grow.

Since we've all decided (us and the doctors) that chemo is not another option. we are left with freezing and laser treatments.

The other day i asked the doctor if i could see the other pictures they don't show us and she said yes. Let me tell you besides the MRI this is the coolest thing I've seen. it' shows both his right and left eyes. it shows the freezing treatment a layer at a time almost like stop motion photography and since the won't let me in the room to watch this was the best they could do.

Things with Luke are getting harder. he is now fully aware of what is happening. First thing in the morning we have to put a freezing patch on his port and it's a struggle (it takes both of us to put it on) once it's on he will hold his hand over his port and it won't move till we do the eye drops later in the morning. Eye drops to dilate his eyes for the exam is another challenge. it takes 3 of us i hold his feet my wife will hold his arms and the nurse puts in the drops.

A couple months ago we started to notice moles developing on his skin just small ones. So being concerned we brought it to the attention of the doctors who got a skin Doctor to come look at them. she said that it was normal for kids who have been to as much chemo as he has for this to happen but just to keep and eye on them because they could lead to more.


So that's where we are sitting right now. freezing and lasers to control the seeds and hoping the tumor doesn't start to grow again.

July 6th

For the past couple weeks we've been dealing with some bad news from our doctor.

The tumor in Luke's left eye has has started to grow again. 3weeks ago we tried something we've never tried before which is to inject a dose of chemo around the eye. Sometimes this works Sometimes it doesn't. Today we found out that in our case it didn't work.

We were told by our doctor that we were never out of the woods and that this was always a possibility. We had never really believed her. Till 3 weeks ago when we sat down and really talked about what we should do if the shot in the eye didn't work.

We had decided that if it didn't take we would opt for one more round of chemo and then that would be it. we both feel that Luke has been through enough but that we should at least try once more with the chemo.

Today we had to stick by our decission. When we saw the pictures from the most recent EUA you could see the tumor had really grown in the last two weeks. Also there seems to have been some seeding which means that this new tumor is spitting out little tumors that are now floating around inside the eye.

Update april 2011

At our last EUA we spent about as much time in the waiting room as Luke did in the ER. After about 45 minutes the doctor called us back and told us that after the chemo treatment everything was looking good. Now normally we only have to wait about 10-15 minutes before we go into the recovery room but this time it took longer so we got worried. i asked the volunteer to go see whats wrong. she came back said everything is fine and that it should be a couple minutes before we could go see Luke. 5 minutes later a doctor we never saw before came in and asked to speak to us. he said he was the anesthesiologist. Luke as it turns out does not react very well to morphine and so on the pre op sheet we state no morphine or related products. the anesthesiologists always seem to have a problem with this as they can't give him Tylenol either. Their is one drug for pain he can have called Fentanyl. So this doctors tells us that Luke woke up and was in a lot of pain so they put him back to sleep so they could come talk to us about the pain medications they could give. Turns out that it was a misunderstanding because before Luke went into the O.R. we told the other anesthesiologist that he COULD have fentanyl. but it turns out the fentanyl is related to morphine. so they didn't want to give it. Big misunderstanding could have been solved by a couple of questions from the doctors that caused a big deal and Luke to be in a lot of pain. Luke has recovered fine from this EUA. The real problem though is that Luke is getting older now and is slowly beginning to understand what is going on when we go to the hospital. Putting the freezing patch on before we go is becoming a huge deal. Changing him and all the other tasks that we must do when we there there are taking there toll on him. i wonder how long it will be before getting him in the car will be worse.

March 2011

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.

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

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.

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.

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.

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.

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

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

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.

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.