Back from NYC

Hi Everyone,

We are back from NY and Julia has completed cycle 2 of treatment. She was well in NY and handled her cell infusions with no complications.....thank god. BUT it wouldn't be our story if we didn't have some drama.......The Tuesday before we left for NY Julia was at Sick Kids for clinic and ran into her good friend from the hospital. They were so excited to see each other as they have been on this journey together pretty much since the beginning. On Thursday I get an email in NY from this little girls mom informing me that her daugther has the mumps and symptoms started the Wednesday night. Immediately I contact Julia's oncologist and she confirms that this child has the mumps and Julia has been exposed. We have not seen this little girl in awhile and what are the chances we see her the day before leaving for NY and that she gets the mumps the day later. Because of Julia's heart transplant she can not receive any live vaccines therefore has never been immunized against the mumps. So the doctors from NY talk to Toronto and they decide Julia will need something to protect her in case she gets the mumps. Imagine me.......in NY freaking out at this point and it was only day 2 of 8. Apparently the period in which Julia would be most likely to contract the mumps (if she does) is between day 12-25. Therefore after many discussions it was decided we would wait until we got home to give her the immunoglobbulin as it is a very expensive drug to be getting in NY. So we landed in Toronto on Thursday and went straight to Sick Kids once again. We spent 5 hours there and Julia got an infusion to boost her immunity. What a long day. Therefore Julia is now in her 12-25 day isolation period where she would be most likely to get the mumps if she was going to get them. Just because she was exposed doesn't mean she will actually get them. Someone up there just doesn't think we have enough drama in our life so they decided we needed more....lol.

On a good note, Julia is feeling great. She has lots of energy and is eating really well. She has her scan coming up and I am extremely anxious about it. This scan will tell us a lot about what's going on and if the treatment in NY has had any effect on the disease. We are scheduled back in NY on Feb 19th to begin cycle 3.

For now we are just taking things day by day and enjoying the fact that Julia is feeling strong and well. We are at the hospital tomorrow for clinic and we'll see what her bloodwork shows.

Once again I want to thank everyone for your unbelievable support. We couldn't do this without your prayers, encouragement and support. I will keep you posted on how Julia is doing and her scan results.

Nadia

1st Infusion of Cycle 2 Done

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

Update on Julia

Hi Everyone,

Hope you all had a wonderful holidays and we wish you all the best for 2012.

Julia had a good holidays and remained well......thank god. It was confirmed over the holidays that Julia will need a minimum of 4 cycles of CTL therapy in NY. We are leaving for cycle 2 on January 11. And will need to go back in Feb, Mar, and April. NY doctors will not know if the therapy is working until just before the 3rd cycle. They have started growing Julia's own cells and hope they will be ready by cycle 4. I am having a very hard time knowing we have to keep going back to NY since I did not do well there. Anthony is devastated that we will be leaving again and life just seems really all over the place right now. Impossible to have routine, stability, or any type of normalcy right now for all of us. Including for my parents who are at our beck and call trying to help both me and the kids right now. They were suppose to be in Florida enjoying their time and because of the situation are unable to go.....I feel horrible. In the past 5.5 years I have been under an enormous amount of stress and always managed to hold it together just fine. Something about being in NY triggered something for me and to be honest I am having a very hard time coping right now. I'm trying to figure out what it is but just don't know what it is. It may just be the whole situation and the extreme exhaustion catching up to me. I only hope that I start feeling better and coping better some time very soon.

To all my dear friends, I apologize for not being in touch and I know your all very worried about me but right now I need to work through this and get strong for Julia's sake. And most times I just can't talk about things anymore. Please know that I love you all and appreciate your concern but I will be fine once I take some time for me.

I will keep you all posted on how Julia does with cycle 2 in NY. Please pray for an uneventful trip to NY and a quick return home.

Thanks
Nadia