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