Hi Everyone,
For those of you who didn't know we left for NY on Wednesday for the beginning of cycle 2. Julia received her 1st cell infusion of cycle 2 on Thursday and we returned home yesterday. We will return to NY on Wednesday for the 2nd and 3rd infusion of the cycle. Since I had a very hard time in NY last time we decided to split the time up in NY. Therefore we went in this week for 3 days, got cells, and came home. We will leave Wednesday and stay for 9 days and receive infusions 2 and 3. Of course the trip was anything but uneventful of course. On Wednesday we boarded our flight and were about to take off when the pilot came on and said there was a major mechanical problem with the plane and it would not be taking off.......everybody off the plane. At this point I was panicking as Sloan was expecting us first thing in the morning for cell infusion. We begged Air Canada to get us on another flight so they did. We board that plane and pulled away from the gate and the pilot comes on and says "as we were pulling away the ground crew noticed something hanging on the side of the plane. Sit tight and I will keep you all posted." At this point I could not beleive our luck....shot me now! Finally we took off and got to NY safe and sound although extremely late. We arrived at Sloan the next morning and Julia got her cell infusion. All went well and they wanted her to return Friday morning before leaving. We brought her to clinic on Friday morning and doctors find that she has an ear infection. They start her on antibiotics and told us to give her a dose of tylenol for the flight. About 20 mins before the car is picking us up to go to the airport Julia spikes a fever and is hanging over the toliet bowl wanting to vomit. As you can imagine I'm freaking out. I call Sloan and bascially they tell me if I think shes stable get on the plane. We decided that we still have a couple hours till the plane takes off so I will watch how things go. So off to the airport we go. I spoke with Julia's oncolgist who gave me the same advice but said to come straight to SIck Kids once we land. We get to the airport and our flight has been cancelled. I start crying to the Air Canada rep telling her I need to get home and go to the hospital. They stop the 12:00 flight which had just shut there doors and get us on that flight. A very nice couple who heard our story gave up their 2 first class tickets and let Julia and I sit there. I was nervous the whole flight but Julia was fine. We land in Toronto and go straight to Sick Kids (fron one hospital to another). The docs were waiting for us with a ...welcome home. They did blood cultures and gave Julia a dose of IV antibiotics to protect her. I get a voice mail as I'm sitting at Sick Kids and its SLoan panicking saying they think we shouldn't fly and this may not be coincidence and to come back to the hospital. They thought our flight was 1:30, not knowing we had got on a earlier flight. I call NY back and tell them we are home safe and at SIck Kids anbd they were so relieved. After all that drama we are home and Julia is feeling better. I just hope she's all better to go back to NY on Wednesday.
Julia will finish this cycle and than have a PET/CT the week of Feb 13th. Doctors at Sloan Kettering believe that the findings in the lungs are disease related and not infection. If they do not see any improvment on PET they would like to go in and biopsy it to see if my T cells are in the tissue. On a good note Julia is now EBV negative in her blood which is great news and looks like the cells are doing what there suppose to. This scan is huge for us.
I can't even begin to describe how crazy our lives are right now. It really does feel like a bad bad nightmare. Somedays I say to myself no one can have this much bad luck....its crazy.
I thank you all for your continued support and please know that I appreciate every bit of it even though I don't always respond to messages......I'm sorry, like I said earlier I am having a very hard time right now.
I will keep you updated on how it goes in NY next week.
Nadia
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