We are celebrating Paulina's 30th birthday at Fregata this Friday (2 dec, after 9pm) Please feel free to come over to share this amazing moment with us and to have a bit of fun. We all know what she went through in the past 3 years so the reason to share the moment of happiness with her is even more special. "Lets Celebrate Life! :)"

I spoke too soon, were back to Rochester tomorrow

I guess I spoke too soon, wishful thinking but turns out were still jumping through hoops trying to get the drug here. After many hours my team here at Trillium has managed to get Health Canada approval but with a catch -- that insurance (OHIP) won't cover the ~$10,000 drug cost of SGN-35 (per treatment!)..

So after all the efforts turns out right now its cheaper to continue getting it in Rochester where the drug company Seattle Genetics has been taking care of the drug cost for Canadians since it went to market Aug 19 (each of the US patients' medical insurance has been covering 100% of drug cost from day 1 it was on market).

I am just so frustrated with the system that there are still problems getting the drug to patients here.. Dont even want to imagine anyone else right now in the kind of life and death situation as I was back in April, desperate to get this drug.. Just cant imagine them being told they can get the drug but its not covered.. No one has $100,000+ lying around to pay for the treatment that I have had already. Very sad.

Besides the drug cost, we are still hoping to change OHIP decision denying us our out of country expenses (averaging $1500 per visit - for infusion itself & doctor fee). I have a telephone pre-trial hearing sometime early December with an Appeal Board. Myself vS Ohip. I get to plea my case, hopefully they will see the potential this drug has to save lives and agree to pay for it as they would for any other accepted treatment.. Wish me luck.

So for the 11th time now, we venture out tomorrow 5am to get another half hour infusion of the drug.. Exhausting trips but realizing more and more how fortunate I am to be getting it at all!

Happy Thanksgiving this week to all who are celebrating,

Paulina

SGN-35 #10

Back in Rochester, treatment #10 today.

Hard to believe it's been half a year since that life altering first dose of SGN-35.

Possibly the last time we travel here to get it as arrangements are being made back home to get the drug there under care of my local oncolgist. Rochester Strong Memorial will always hold a special place in our hearts. On behalf of our family thank you for all you do.