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
Tuesday, January 31, 2012
Saturday, January 14, 2012
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
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
Tuesday, January 3, 2012
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
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
Sunday, December 25, 2011
Sunday, December 18, 2011
Home Sweet Home
Hi Everyone,
We are finally home and with no surprise our last 5 days were not uneventful. As I mentioned in my last post Anthony was sick on Monday.....well Tuesday Julia was sick. Unfortunately due to her medical frailness she was admitted to Sloan as an in patient. She remained in patient until Thursday night so needless to say her cell infusion which was suppose to happen on Wednesday was bumped to Friday. And for those of you doing the math....yes we missed our flight home!! We had to change our flight to Saturday in order to get the last cell transfusion Friday. We are expected back in NY the second week of January for cycle 2. Really don't know how I'm going to get through it.....
It was quite the experience and really not what I expected. It was longer and much harder than I ever imagined. We met some great families with of course sad stories and unfortunately they were not as luck as us to make it home for Christmas. I hope all of them can find some way to have a wonderful Christmas despite being separated from their families......and the Ronald McDonald House will make sure of that. I can not take anymore of the sad stories. I get far to emotional and want to help all but being at the house I realized I can not possibly help everyone despite wanting too.
Julia has recovered from her gastric infection and is due at Sick Kids on Tuesday for follow up. She is booked to have a PET/CT on Dec 29th to see if disease is; gone, stable, or has progressed. NY doctors don't expect to see much change after only one cycle. Unfortunately we will not know until the beginning of cycle 3 if and how well this treatment is working, or even how long my cells are lasting. The idea is the longer my cells last the longer she can go in between cycles. This whole process is much more than we all bargained for. It is intense, long, with really no immediate answers. NY is talking about just keep going and going. Even talked about Julia's own cells potentially being ready for cycle 4. After seeing my bill for only 1 day I don't think we can keep going and going. I will speak with Julia's doctor here and together we will decide what to do long term.
On a positive note Julia's primary doctor in NY is amazing. Very similar to her doctor here and that definitely made things easier for both of us. She even called us today at home to make sure we made it home ok and that Julia was feeling ok. The whole team we dealt with really were unbelievable. I'm still very happy to be Canadian and have health care, but it really will blow your mind at the advancement in the US. From big things like test availability, quick results (things that take us 3 days to get back here are back in 3 hours there), resources, blood tests (we've had a lot of blood tests and there were ones I had never even seen before), to simple things like parent lounges and kitchens with free coffee, cappuccino, and juice machines. To the incredible clinic and in patient food system.....pick up a menu, fill it out for everyone with you, and drop it in the box with the time you'd like to eat and your meal is delivered right to you.....and good food......no "meal train"(u sick kids families know what I'm talking about!!!)
For now I really need to re group and relax, and figure out why NY was so hard on me.
I'm grateful and excited to spend a quiet holidays with my family and will think about the trip back to NY in the New Year.
I will keep you posted as I know more.
Thanks for your continued support it is very much appreciated.
Nadia
We are finally home and with no surprise our last 5 days were not uneventful. As I mentioned in my last post Anthony was sick on Monday.....well Tuesday Julia was sick. Unfortunately due to her medical frailness she was admitted to Sloan as an in patient. She remained in patient until Thursday night so needless to say her cell infusion which was suppose to happen on Wednesday was bumped to Friday. And for those of you doing the math....yes we missed our flight home!! We had to change our flight to Saturday in order to get the last cell transfusion Friday. We are expected back in NY the second week of January for cycle 2. Really don't know how I'm going to get through it.....
It was quite the experience and really not what I expected. It was longer and much harder than I ever imagined. We met some great families with of course sad stories and unfortunately they were not as luck as us to make it home for Christmas. I hope all of them can find some way to have a wonderful Christmas despite being separated from their families......and the Ronald McDonald House will make sure of that. I can not take anymore of the sad stories. I get far to emotional and want to help all but being at the house I realized I can not possibly help everyone despite wanting too.
Julia has recovered from her gastric infection and is due at Sick Kids on Tuesday for follow up. She is booked to have a PET/CT on Dec 29th to see if disease is; gone, stable, or has progressed. NY doctors don't expect to see much change after only one cycle. Unfortunately we will not know until the beginning of cycle 3 if and how well this treatment is working, or even how long my cells are lasting. The idea is the longer my cells last the longer she can go in between cycles. This whole process is much more than we all bargained for. It is intense, long, with really no immediate answers. NY is talking about just keep going and going. Even talked about Julia's own cells potentially being ready for cycle 4. After seeing my bill for only 1 day I don't think we can keep going and going. I will speak with Julia's doctor here and together we will decide what to do long term.
On a positive note Julia's primary doctor in NY is amazing. Very similar to her doctor here and that definitely made things easier for both of us. She even called us today at home to make sure we made it home ok and that Julia was feeling ok. The whole team we dealt with really were unbelievable. I'm still very happy to be Canadian and have health care, but it really will blow your mind at the advancement in the US. From big things like test availability, quick results (things that take us 3 days to get back here are back in 3 hours there), resources, blood tests (we've had a lot of blood tests and there were ones I had never even seen before), to simple things like parent lounges and kitchens with free coffee, cappuccino, and juice machines. To the incredible clinic and in patient food system.....pick up a menu, fill it out for everyone with you, and drop it in the box with the time you'd like to eat and your meal is delivered right to you.....and good food......no "meal train"(u sick kids families know what I'm talking about!!!)
For now I really need to re group and relax, and figure out why NY was so hard on me.
I'm grateful and excited to spend a quiet holidays with my family and will think about the trip back to NY in the New Year.
I will keep you posted as I know more.
Thanks for your continued support it is very much appreciated.
Nadia
Monday, December 12, 2011
Quick Update from New York City
Hi Everyone,
I apologize for not updating the blog more often(that really was my intent), but this process has been much harder than anticipated and has really taken its toll on me both mentally and physically. Most of my energy each day is holding myself up and making sure I have no more ER visits (2 was enough for me). Not quite sure what has put me over the edge but whatever it is it has me weak, tired, sad, anxious, and I spend most days crying uncontrollably when I'm alone. The thought of coming back here in 3 weeks gives me heart palpitations. I think I'll need to get on some good drugs before going through another cycle.
Elio, my dad, and the kids arrived Friday and we spent Anthony's birthday here in NY together. It was so good to see the kids but quite honestly I did not have the energy for them. We did central park, Rockefeller center, and Times Square - and that's about it - they were done after all that. Anthony went to the NHL and all the toy stores and picked out his birthday gifts. The Ronald McDonald house even got him a whole bunch of gifts and we got him a big ice cream cake to share with the house. The house even gave him and Elio tickets to last nights NY Rangers game. Now he thought that was the coolest way to spend his 8th birthday. Unfortunately he spent all night and all morning throwing up and is crawled up in bed and has to board a plane in a couple of hours. Poor baby I hope he feels better soon, and that Julia doesn't get whatever he's picked up. The countdown is on.....% more days till we come home.......I need an uneventful 5 days. Julia will have her last cell transfusion of the first cycle on Wednesday. She will go back in on Thursday for her final lab work in NY and than off we go Friday back to Sick Kids and they will do the remaining tests over the next 3 weeks. After that Sloan would like to see her back her the 2nd week of January for cycle 2. Can't talk about this right now.........
I will try and update you all after Julia's last cell infusion. Otherwise we will talk to you all when we return. Your thoughts and prayers and words of encouragement are always appreciated.
Nadia
I apologize for not updating the blog more often(that really was my intent), but this process has been much harder than anticipated and has really taken its toll on me both mentally and physically. Most of my energy each day is holding myself up and making sure I have no more ER visits (2 was enough for me). Not quite sure what has put me over the edge but whatever it is it has me weak, tired, sad, anxious, and I spend most days crying uncontrollably when I'm alone. The thought of coming back here in 3 weeks gives me heart palpitations. I think I'll need to get on some good drugs before going through another cycle.
Elio, my dad, and the kids arrived Friday and we spent Anthony's birthday here in NY together. It was so good to see the kids but quite honestly I did not have the energy for them. We did central park, Rockefeller center, and Times Square - and that's about it - they were done after all that. Anthony went to the NHL and all the toy stores and picked out his birthday gifts. The Ronald McDonald house even got him a whole bunch of gifts and we got him a big ice cream cake to share with the house. The house even gave him and Elio tickets to last nights NY Rangers game. Now he thought that was the coolest way to spend his 8th birthday. Unfortunately he spent all night and all morning throwing up and is crawled up in bed and has to board a plane in a couple of hours. Poor baby I hope he feels better soon, and that Julia doesn't get whatever he's picked up. The countdown is on.....% more days till we come home.......I need an uneventful 5 days. Julia will have her last cell transfusion of the first cycle on Wednesday. She will go back in on Thursday for her final lab work in NY and than off we go Friday back to Sick Kids and they will do the remaining tests over the next 3 weeks. After that Sloan would like to see her back her the 2nd week of January for cycle 2. Can't talk about this right now.........
I will try and update you all after Julia's last cell infusion. Otherwise we will talk to you all when we return. Your thoughts and prayers and words of encouragement are always appreciated.
Nadia
Subscribe to:
Posts (Atom)