Monday, April 19, 2010

a little fright

Hey people

On Thursday we went and got Luke's blood work done and it came back really low so they said to look out for certain things like paleness sleeping lots, bleeding, that kind of stuff and on Friday i noticed that we slept a little more then normal for me and he was pale. So i call the wife an we decide to take him in to sick kids just to be safe.
(side note) we were told at the beginning that if we took him in because of these problems then it would be a 2 day affair.... we forgot that

So i drive him down to sick kids and get him admitted. luckily because of his condition he gets his own room right away. but it takes us 24 hours and a night in emerg before we get admitted to the hospital and we saw i think 4 different doctors the whole time we were there.

I would have to guess that our treatment we are following is not a common thing because telling doctors abut him and what he has and explaining everything i found myself having to dumb down my explanation cause they had no idea what i was talking about which was funny.

While we were their they did blood work on him and every time they did it got lower and lower.
So low that by Sunday morning they wanted to transfuse his platelets which help him with clotting. we weren't too sure what we were going to do but we said OK and we didn't leave the hospital till 9 30 pm Sunday.

Luke's back home now we'll see how he is in the morning.

for now everything is OK.

Saturday, April 10, 2010

Round 3 day 2

Another day closer to what we hope will soon be the end of this. unfortunately my wife and I both know this won't be over for a long time. We know that Luke will have to live with this for the rest of his life and not only his life but his children's and there children's lives.

How will he deal with this when he gets older? Will we as parents have taught him and shown him everything and supported him and given him all the tools he will need to deal with this?

As I've said before we was parents are not here for us. We are here for the child. As every parent knows they would do anything to protect their child from anything but when it comes to something like this where you are helpless and all you can really do is hold your child and tell them in truth or not that everything will be OK because you are there. Is that right? Lying to a child is easy because they will believe anything even if it's just a white lie that helps them get through a tough time but the truth of it is that we don't lie to kids to protect them we lie to them to protect us. Admitting that we've failed to protect them by admitting there's nothing we can do to stop what ever bad is happening means we've failed in some way to do what we said we'd do from the first moment we leaned down to that pregnant belly and said we'd always be there for them and do what ever we can to protect them.

This scares people at least it scares me. My wife and Luke are everything to me and knowing that i couldn't do something to protect them scares me. So you tell little white lies it's OK daddy's here everything will be better. I know your in pain but daddy's here everything will be better. I know your blind in one eye but don't worry daddy's here. I know the chemo drugs make you feel like crap and your puking and you can't sit still for 5 mins but daddy's here it'll be all better.
Each person knows that if they could take something like cancer from the person you love and put it in you you would.

What you have to realise is that the person you love needs you to be strong for them. They know that you can't really make the pain, hurt, feelings, go away no matter what you say But what they need is that person there to tell them it'll be OK to tell them you'll make it better because by doing this you pass on your strength to them making them more able to handle what ever they are dealing with.

I think anyways. I could be way off on this but I'm tired and it's been a long day. I'll read this again later and edit out the crazy sounding parts. :)

SO today was not very good. I guess it's because we fed him a little last night but today he was miserable. Tossing and turning taking turns being held and bounced by the 3 of us. He was sick today with some vomiting. Things we learned NO FOOD before chemo. maybe a little water.

other then that a pretty uneventful day. tomorrow we start the drugs and GCFS (the needles) and all the things he HATES eye drops and the other drugs we have to force down his mouth.
Although he has learned to spit the drugs out. that reminds me I have to check if they have a different flavour of one of these drugs cause he reallllly hates it.

thanks for reading my little rant will keep you updated.

Thursday, April 8, 2010

Round 3 day 1

Another day down.

Today wasn't too bad Luke was semi sedated and to keep him happy we used the exercise ball to bounce him up and down which kept him happy.

Not too much else to report as for the whole time were are their we basically just sit there and wait till Luke's done and keep him comfortable.

Wednesday, April 7, 2010

Round 3 Chemo

Well it's been another 21 days and it all starts over again.

Over the past 3 weeks not much has been going on
Luke has maintained his weight of around 10.5 KG (around 20 lbs) and has grown another 3 cm and now stands at 2 foot 7 inches

He has continued to loose his short hair a little at a time but nothing to noticeable.

The past three hearing tests there seems to be a little trouble with the hearing in his left ear so today during his EUA the ear doctor came by and checked him out and says theirs nothing wrong with his ears so hopefully will get a chance to talk to him and find out what is up with the test results from the hearing tests.

The results from the EUA today were very good. the tumors in both eyes have continued to shrink. Were not out of the woods yet and only time will tell how things will go. We remain hopeful but have accepted that Luke may still lose his left eye.

Today we also met with the geneticist and found out that Luke does have the hereditary form of Retinoblastoma. This means that my wife and I shall be getting tested to see if either of us are carriers of this certain gene. In 6 weeks we;ll find out the results. All it really means is that if we do have the gene our other kids will have a 50% chance of having Retinoblastoma. If we don't then it means that our next children will have a 3% chance of have Retinoblastoma.

Luke's children will have a 50% chance of having Retinoblastoma. ???? How is this something you explain to your child? When do you sit your child down and tell them? How will this news effect his life? What decisions will he make knowing what may happen to his children?
There are so many questions that have come up now i guess the good news is that we will have a couple years to figure this all out.

Tomorrow we will be starting the next round of chemo. He handled the chemo better last time because they gave him a higher dose of some of the drugs which helped him sleep a little better. Also grandma was there to help with the cuddling that keeps Luke calm which was a big help.