Update from NY

Hi Everyone, Sorry for the delay in updating you all but the blog was down and I could not post. Julia's LP she had showed that once again she has EBV in her central nervous system. No one (Toronto or NY) could understand why this was happening. The 2 options were to start cytotoxic drugs ASAP or get to NY for cells. Our oncologist (who is the best doctor ever), decided to give Julia the benefit of the doubt and repeat the LP one week later. Her repeat LP still showed a high white count (meaning something was still going on), but it had significantly reduced. So the decision was made to hold off on more chemo drugs and go to NY. We needed to wait 7 days before we could fly so we departed for NY on Monday Jan 21st (my moms birthday - this is 2 years in a row my mom spends her birthday here). Julia got her 1st infusion today and will get another next week and the week after. So far so good......Julia feels good and is back to herself. She spent the whole day at Sloan Kettering doing blood work, exams, cell infusion, and every hour vitals for 6 hours and she was awesome. NY is very puzzled by Julia's case. They have not seen cells last as long as Julia's are lasting. They also don't understand why she gets so sick and how she can pull through it by herself. Her nurse practitioner called her "one tough cookie". There is a major break out of the flu in NY and the Ronald McDonald house is under shutdown to the public. I'm a little nervous about this and hope Julia remains well while we are here. Today NY took some of my DNA and Julia's and will be running some high tech testing to see if my cells are in her central nervous system.....pretty cool. They expect to have these results next week. Julia's doctor here in NY is very anxious to get Julia onto maintenance, so after this cycle the plan is to move to 1 infusion every 8 weeks. On a different note I hear its super cold in Toronto so being here feels like fall! Please all keep Julia in your prayers for a successful and uneventful cycle. We'll see you when we are back and I will keep updating you all on how things are going. Nadia