Thursday, April 2, 2015

April 2, 2015

Hello Everyone

I want to start by thanking you all again for your amazing support and your words of encouragement. 

It's been a crazy month as usual. Julia's biopsy had suspicious rare EBV cells in it but unfortunately the sample was too small to actually stage the disease. Yes.....that's not a typo. Unbelievable after putting her through that terrible procedure, which came at a high cost, the sample was not big enough. Now discussions are happening about repeating the biopsy. 

Julia is scheduled for a heart biopsy, angio, and heart stress test on April 17th. We will be coming back to Toronto to have that done. I'm looking forward to coming home even if just for a little. It's been 9 months in NY without emily and anthony and I miss them so much. 

We are really having a hard time making decisions and don't know what to do anymore. We know that Julia is not in remission but all agree that she's been well and remained stable. Her disease is low grade and stable at this point. She has gone 14 months with no chemo, which is the longest she's ever gone. And we don't want to risk changing that. 

Unfortunately Julia's cells are not growing at the speed the doctors would expect in the lab so it will be a little longer till they are ready for use. 

Today Julia was suppose to have her cell infusion but unfortunately spiked a fever and looks like she may have an infection. She was restarted on IV antibiotics and we will reassess things on Friday......never a dull moment!

I will keep you all posted on Julia's progress and heart biopsy results.