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.