Wednesday, December 14, 2011

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 click on sponsor a participant and search Jess I'm the only one.

Thanks in advance for your help and support

Friday, December 2, 2011

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.


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.

Wednesday, November 2, 2011

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.


Sunday, October 9, 2011

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.

Thursday, July 7, 2011

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.

Monday, April 18, 2011

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.

Monday, March 21, 2011

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.

Tuesday, February 1, 2011

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

Friday, January 7, 2011

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.