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.