Wednesday, March 24, 2010

round 2 update

Well so far so good.

Luke's recovering well from his chemo treatment and it's been better for all of us.

we went and had his blood work one on Monday and it came back that he's neutropenic again but no sign of fever or anything else so (knock on wood) all is well on this front.

before his last treatment we had decided to shave his head because his hair had started to fall out. So we did shave his head but we left a little on top kinda like an army cut but the day before he was to start his second round we decided to finish the job and just do it all.

well lets just say that cutting ones hair then a week later cutting it again n a different spot makes the hair tend to be uneven so now he's kinda got he jean luc picard hair cut going on.
Surprisingly though his hair seems to be growing back just fine. so we might have jumped the gun little.

We got a call from the genetics lady she told us that Luke has the genetic type of cancer and that both the wife and i will have to get tested to find out who's got what. if one of us does have it then our next kid has a 50% chance of having retinoblastoma. if we don't then there may be a 3% chance or something like that. they also check us because if one of us does have it then that person will be more prone to getting a cancer later on.

SO that's where we are at right now we don't go for chemo again till around the 5th or so of April.

Tuesday, March 16, 2010

round 2

I'm not sure what we did differently this time but what a difference.
It could have been that we didn't give him any milk before chemo.
It could have been that the doctors increased some of the drugs
but today was better then the last time Luke slept most of the time without the agitation of what ever was wrong last time. i guess having grandma there to cuddle him didn't hurt either.

Turns out Luke has grown 2cm since his last visit 3 weeks ago WOW let hope he keeps the snider height and keeps growing :)

We went and had another hearing test done before we started chemo. We will be doing this every time because the chemo can affect certain parts of the hearing so they test to make sure he's OK.

One of the side effects that no one told us before of having and EUA is that when they incubate during the procedure is that the tube which runs from his ear to his throat (Eustachian tube)
tends to get a little clogged up causing him to not hear lower sounds. it's not a huge problem but it messes with the hearing tests so next time we have an EUA the ear/nose/throat doc will take a look at it.

they gave him laysics again today (it helps him pee) and boy does this stuff work. Peed on me peed on grandma.

other then that it was a good day and were back at it again tomorrow.

if you have any questions please feel free to comment and i can answer them as best i can. I'm sure you might have some questions that i haven't even thought of yet to ask the doctors so any input would be great.

We also shaved his head completely now.

on a side note i've now been peed on pooed on puke'd on by my son :) the joys of parenting these are the things they don't tell you about in any book.

Monday, March 15, 2010

Not out yet

Well it's been awhile since i last posted cause nothing has been going on Luke's been healthy and acting like himself for over a week now.

Today was Luke's second EUA (exam under anesthesia). It went much better the the last one. As you will recall the last time he was sick and this caused problems with his breathing and his O2 stats causing us to spend the night in the hospital with him.

This time everything went fine and there were no problem although we did learn one thing. ONLY SMALL AMOUNTS OF LIQUID AFTER. even though he was starving and thirsty i gave him way to much juice and water we should have waited.

So the doctor went in and had a good look at his eyes. Her report was this. his eyes have responded well to the chemo. His right eye tumors have reduced a bit and she used the laser on them to try and shrink them more and the vision in his right eye is perfect. they took pictures of his eye which i will post later.
The tumor in his left eye has shrunk by 50% which is awesome but she warned us that when it shrunk it shattered into a million little tumors which is bad for treatment because it's harder to go in and zap them all.

she warned us that he may still lose his left eye and we will look at it at our next EUA.

my personal feelings are that if the tumors have reacted this well to the chemo then we will wait till after the third treatment to make the call on if we should take the eye or not.

Tomorrow is our next round of chemo

Wednesday, March 10, 2010


The above pictures are from Luke's MRi. The show you the tumors in his eyes. The tumors appear as the shadows in his eyes. Unfortunately there will not be anymore MRI's to show how the chemo shrunk the tumor.

These pictures show the scar from the central line they put in Luke's chest. You may also notice the bump under his right boob this is the reservoir

Saturday, March 6, 2010

First session done


for now

Luke really doesn't like the meds he's on and now were just down to eye drops.

So today we went back to the hospital to check out his eye and do his CBC's

Apparently this morning all of the doctors were discussing Luke's case and they think the reason for the pinkness in his eye is that the dead cancer cells are floating around in there and that since his white blood cell count has jumped up so high that his white cells are now attacking his dead cancer cells. THIS IS GOOD.
So they have him on antibiotic drops and a new steroid drop for his eye to help clear it up.
All his other meds are done Even the GCSF which is the needle that we gave him every day.
Just to back track a little. We give him a daily shot of this GCSF to help boost his white blood count which it has done. Instead of giving him a shot every day they put this thing in called an Insuflon catheter. Now when i saw this thing in the package and when they told me where it goes i was like at you kidding me that's huge it's going to kill him. Well today since there is no more GCSF they took it out and the nurse is like you can do it, and I'm like NO i can't it's going to hurt him and it's nastily big and gross. She looks at me like I'm on crack.
We go into the room and she's like fine you distract and I'll do it I'm say OK and I'm like Luke look here and she then tells me she's done???? NO WAY i look down and this thing is the size of a lug hair small tiny little thing i was soo confused. I'll post pictures of all this soon

So now Luke is patch free and all he has is a small scar on his chest and neck and a pick eye he does still have his hair and both his eyes.

Wednesday, March 3, 2010

Little scare

So this morning after i woke up i came into the kitchen to notice their was something wrong with his eye. It was all red and watery. We got a little concerned and so we called our nurse and she told us to come down to the hospital to get it looked. The main concern being with his counts so low that their could be something seriously wrong.

So packed up and down to the hospital we go. having Luke being neutropenic we got put int a private waiting room to wait for the doctor. It also means that we get seen faster. The Doctor came promptly and took a look. He put a special dye in Luke's eye check out what the worst case would be and that was a form of cold sore in his eye.

But everything was fine he has a little bit of eye irritation for which the doc gave us some drops for.
The good news of today is that when the doctor looked into his eyes i noticed that he was squinting which is something he wasn't doing when we went in for our first visit.
i mentioned it to the doctor and he agreed that there seems to be some progress from the chemo. He said that the tumor seemed to have shrunk on the bottom. :) YEAH

Then we went upstairs and had his bum looked at and the doctor said that some discolouration is normal with chemo maybe not in the bum but on some areas of the body. So all is well with the bum.

Then back downstairs for a CBC test which means we don't have to go tomorrow but i do have to go for another one on Friday just to make sure that his blood counts are going the way they are supposed to.

more on Friday........

Tuesday, March 2, 2010


Monday we went to the hospitals satellite site to get blood work done.
We go in and meet the nurse she pokes his finger with a small needle and then milks the blood out of his finger she only takes .5ml of blood. Thats it. Then we go home and in a couple hours she calls us with the results. they aer looking for a couple things the test is called CBC (complete blood count) it measures all the different parts of the blood which is important for cancer patients because if certain parts of the blood are too low bad things can happen.

Trombocytopenia is the medical term for low platelet count. Platelets are colourless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessels. So if your platelet counts are low you will see bruising and bleeding that won't stop with normal pressure.

The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections and therefore a patient with to few neutrophils is more susceptible to infections.

The last thing the really look for is called hemoglobin basically is your red blood cells. A low hemoglobin level is called Anemia. If his hemoglobin levels fall below 60 he may need a blood transfusion.

Luke Is neutropinic which means he is very susceptible to infections and getting sick. Were not living in a bubble yet. We are monitoring where he goes and who he comes into contact with.

Life so far hasn't been a big change were over the changing of diapers with gloves and Luke seems back to his old cute self. The only real change we've noticed is that he now wakes up in he middle of the night crying really bad were not sure if it's gas or pain or what but it doe take a while to get him settled.

His bum has kinda turned a weird colour. We think it's from the chemo drugs in his diaper but we've put soo much Vaseline a bottle and a half in a week. we'll mention it on Thursday when we go back for the next blood test.