Wednesday, May 19, 2010

May news

Luke is recovering well from his last round of chemo. his counts were low and on the days leading up to his last blood work we were thinking he would be needing another platelet transfusion. He was bruising very easily and his head was beginning to look like a bruised banana.

On Monday I took Luke to get his blood work and while we were waiting for the results Luke took a little spill and again banged his head but this time the bruise was instant and VERY big so i scooped him up and took him back to the nurse who called the doctor who looked him over and said yep he's getting a transfusion.

It's kinda weird Luke's blood type is AB + which we just found out.

This was my first watching a transfusion and i thought it would be a bag of blood but it's not for the platelets it's a big bag of what looks like orange juice. which is what they give. it's very uneventful takes about an hour and then that's it.

Today we went and got the check up blood tests to make sure his platelets had gone back up and everything is back on the way up which is great.

With Luke getting better this means he can get back to interacting with kids his own age which will be good for him. I think these last couple months with no interaction with the kids has kinda set him back a bit because he sees other kids and just looks at them like hey what are you.

Well i think th next EUA will be in 2 weeks so i'll update after that.

Wednesday, May 5, 2010

Last day of chemo......

Hopefully this will be the last day anyways.

Day 2 of this round of chemo didn't go too well. Luke himself was his normal chemo self restless and such but then there was also the vomiting. This isn't a good thing in the last 3 days he's had plenty of fluids but if he keeps it up I'll be back at the hospital tomorrow morning. Hopefully the drug he has for vomiting will help.

Other then that now it's normal after chemo stuff keeping an eye on his blood counts. They told us that this time his counts will be way out of whack so we will probably need another transfusion of some kind. If and when we need another round of chemo it won't be for another 6 months so the good news it that we have have a little break of chemo the bad news if we go next time it will be winter and traffic getting home is shit now i can imagine what it's going to be like in the winter.

for now were waiting for 4 weeks till his next EUA.

Our next major step will be finding a new pediatrician because the one we had neither my wife or i can even stand to look at just the thought of going in to get Luke's file makes me ball up my fist (not that i would hit him)
Now this makes it hard to trust another doctor. even the ones we have now it was hard at the beginning to trust them. but they seemed to have Luke's best interest in mind so we gave them a chance and they've been good for Luke.

We might have an appointment on Monday with a new pediatrician so we'll see what happens their.

will keep you updated as the weeks go by.

Tuesday, May 4, 2010

4th round

Well yesterday we had our forth EUA and we finally met the head doctor who does it. Nice lady not too familiar with the case but nice lady who is very reassuring and says that things are going great.

They did this thing to his eye where they give him this dye that goes through his blood steam and ends up in the tumor in his eyes so they can see how active each tumor is cause where there is blood flow there is an active tumor.

She told us that lots of the tumors have calcified which means they're dead and that the retina has almost reattached which is awesome. If his retina reattaches then he will be able to have some vision in his left eye albeit it will not be able to see from the centre of his eye but maybe around the edges (peripherals) but will have a blind spot in the middle but something is better then nothing.

So his eyes are much better but were not done with treatments yet. once a month for the next 2 years we will be going to sick kids for EUA's and then still after that we on a regular basis till he's about 5 we will still go for EUA's so we got a long time of this.

There is still a chance that we may have to do some more chemo but that won't be for 6 months and it all depends on how well the lasers and freezing goes on the rest of the tumors.

(side note) because Luke has the RB1 gene through out his entire body the chances of being exposed to radiation increase the chances that tumors may form in other parts of the body

So today our oncologist came in to talk to us about after care. and left us with some things to think about.
1) keep sun exposure limited. cause of UV rays.
2) unless absolutely necessary NO x-ray's
3) watch out for chicken pox's/ shingles
4) feed him more veggies. (now he can't argue cause the doctor said so)
5) no smoking

other then that today was pretty good day chemo went well and the day went pretty fast.
now were home and Luke looks miserable.