Wishing you all a very Happy Holidays from our family to yours.
The Morreale Family
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
Monday, December 5, 2011
Update from New York.....never a dull moment!
Hi Everyone,
I will start by letting you all know that Julia is doing well. She has handled her 1st cell transfusion like the trooper she is and all her monitoring last week was good. She will have her 2nd transfusion on Wednesday and we are hoping and praying everything goes just as well.
Well for those of you who follow my blog you know that a week in NY could not go by without some sort of drama................On Saturday we were scheduled to visit some family in New Jersey. They had ordered food for our arrival and were even coming to NY city to pick us up, but we never made it there. I woke up on Saturday morning and went down to the kitchen to make myself a pot of coffee (like I do every morning). I met a mother in the lobby who was also from Toronto and who was going home that day. As I was talking to her I felt a little funny, didn't really know what just not feeling that well. We exchanged numbers and walked to the elevators together. As we were waiting at the elevator I told her I wasn't feeling well and apparently turned around to get to the chairs and down I went like a sac of potatoes. Fainted in the lobby of the Ronald McDonald House. The staff immediately called 911 and the paramedics rushed me to New York Hospital. The lady at the front desk called our room and told my mom she needed to come down to the lobby as they had someone who fainted. She left Julia in the room (alone) and ran down the stairs from the 6th floor. She said as she got to the lobby there I was on the floor. The paramedics insisted on taking me to the hospital as my blood pressure was really low. Julia was still connected to over night hydration and my mom does not know how to disconnect her. So as the paramedics are shoving oxygen prongs up my nose I'm worried about Julia and her hydration. Thankfully one of the mom's at the house went to disconnect Julia as I went off to the hospital. When I got to the hospital they were waiting. I could not believe how unbelievably fast things were. They did an ECG, put in an IV, started a bolus of fluid to get my blood pressure up and the doctor had already come in to see me in the first 10 minutes....talk about good service! My blood work was good and there were no major concerns. They believe I was dehydrated, exhausted, and that the stress caught up to me. Once they gave me fluid my blood pressure returned to normal and I felt better. They got me out of there as quick as they could. I felt very weak the rest of the day so I just crawled into bed and rested. I sure did scare the crap out of myself and my mom...who after I was feeling better gave me so much shit!! She says between me and Julia we are going to kill her!! I am feeling better but am so home sick and feel like I've been here forever.
The house is really good to the families and they always have something going on to keep the kids busy. Tonight is a pizza party in the playroom with Santa gifts and pictures. They also offer free Museum tours to the guests so I am hoping to take Julia one day this week or next. We will be at Sloan all day Wednesday and Thursday for sure and quite possibly Friday depending on counts.
I will keep you all posted on how the 2nd cell transfusion goes this week. I apologize for not contacting any of you but this has been much more difficult than I expected.
Thanks for all your support and prayers. Please keep Julia in your thoughts and prayers as she goes through the 2nd cell transfusion.
Nadia
I will start by letting you all know that Julia is doing well. She has handled her 1st cell transfusion like the trooper she is and all her monitoring last week was good. She will have her 2nd transfusion on Wednesday and we are hoping and praying everything goes just as well.
Well for those of you who follow my blog you know that a week in NY could not go by without some sort of drama................On Saturday we were scheduled to visit some family in New Jersey. They had ordered food for our arrival and were even coming to NY city to pick us up, but we never made it there. I woke up on Saturday morning and went down to the kitchen to make myself a pot of coffee (like I do every morning). I met a mother in the lobby who was also from Toronto and who was going home that day. As I was talking to her I felt a little funny, didn't really know what just not feeling that well. We exchanged numbers and walked to the elevators together. As we were waiting at the elevator I told her I wasn't feeling well and apparently turned around to get to the chairs and down I went like a sac of potatoes. Fainted in the lobby of the Ronald McDonald House. The staff immediately called 911 and the paramedics rushed me to New York Hospital. The lady at the front desk called our room and told my mom she needed to come down to the lobby as they had someone who fainted. She left Julia in the room (alone) and ran down the stairs from the 6th floor. She said as she got to the lobby there I was on the floor. The paramedics insisted on taking me to the hospital as my blood pressure was really low. Julia was still connected to over night hydration and my mom does not know how to disconnect her. So as the paramedics are shoving oxygen prongs up my nose I'm worried about Julia and her hydration. Thankfully one of the mom's at the house went to disconnect Julia as I went off to the hospital. When I got to the hospital they were waiting. I could not believe how unbelievably fast things were. They did an ECG, put in an IV, started a bolus of fluid to get my blood pressure up and the doctor had already come in to see me in the first 10 minutes....talk about good service! My blood work was good and there were no major concerns. They believe I was dehydrated, exhausted, and that the stress caught up to me. Once they gave me fluid my blood pressure returned to normal and I felt better. They got me out of there as quick as they could. I felt very weak the rest of the day so I just crawled into bed and rested. I sure did scare the crap out of myself and my mom...who after I was feeling better gave me so much shit!! She says between me and Julia we are going to kill her!! I am feeling better but am so home sick and feel like I've been here forever.
The house is really good to the families and they always have something going on to keep the kids busy. Tonight is a pizza party in the playroom with Santa gifts and pictures. They also offer free Museum tours to the guests so I am hoping to take Julia one day this week or next. We will be at Sloan all day Wednesday and Thursday for sure and quite possibly Friday depending on counts.
I will keep you all posted on how the 2nd cell transfusion goes this week. I apologize for not contacting any of you but this has been much more difficult than I expected.
Thanks for all your support and prayers. Please keep Julia in your thoughts and prayers as she goes through the 2nd cell transfusion.
Nadia
Thursday, December 1, 2011
Update from New York
Hi Everyone,
We arrived in NYC on Tuesday night after a very, very bumpy ride. I was terrified and puking in a barf bag the whole way here (longest hour of my life). Julia on the other hand was laughing her head off saying "faster, faster this is so fun". My little 6 year old rubbing my back telling me it was going to be ok. What a trooper!
After an interesting encounter with our first taxi driver in NYC who brought us to the wrong place and started taking our bags out of the car, as I was telling him he couldn't leave us there it wasn't the right place, we finally arrived at the Ronald McDonald House.
Early Wednesday morning we arrived at Sloan Kettering to start the next part of our journey. Everyone was ready for us and welcomed us with open arms. It was so overwhelming and things are quite different here than at home. Julia had about 30 tubes of blood drawn, her exam with her new doctors, and then at 2:45 Julia's first cell transfusion took place. The doctor hand delivered the cells and transfused them herself. As she was infusing them she told Julia "here are mommy's cells, she worked hard for them Julia". It was unbelievable to watch. The infusion was very fast but there was a 4 hour monitoring period after infusion. My heart was racing and I don't think I've ever been so scared. The pre meds knocked her out and I sat by her bed watching every breathe she took wondering if my cells would hurt her. She did very well and doctors were pleased. We were back there today for blood work and everything looked very good. We need to go back tomorrow for clinic and hopefully everything will still be ok. Julia is feeling good right now. Interestingly, on Wednesday morning before arriving at Sloan Julia's oncologist emailed me to inform me that Julia's EBV test from last week is positive for EBV in her blood. This is what we were waiting for all this time to qualify for trial. So looks like now was the right time to come to NY......strange how things just seem to fall into place.
The house................I am having a very hard time adjusting to the Ronald McDonald house. It is very nice and the people here (both families and staff) are very nice but it is so very sad. The house is at capacity (84 families) and a lot of these families have been here for months and months. There are even quite a few that have already been here for a year and still have a year to go ( I can not imagine this). I can not handle all the sad stories and most of the families who have been here so long can't even afford to buy food.....break my heart. Tonight the house celebrated the start of the holidays with the lighting of the Christmas tree in the lobby. The kids sang songs and Santa came to visit. There were speeches by all the suits about how this is the "house of hope" and how in here the house tries to let them be kids first not kids with cancer. I was crying the whole time and couldn't believe I was even here. Never in a million years would I ever have thought we would be in a position like this. You can't even imagine the world that exists in here.....its the stories you may read about but never really know about, and I feel like I am living in a very bad dream.......and that if I pinch myself hard enough it will all go away.
Julia's second cell infusion will be on Wednesday and than the last one on Dec 14th. If all goes well we hope to be home on the 16th, but the doctor has already told us she believes Julia will benefit from another cycle. This would mean we would only be home for 3 weeks and than need to return. .....can't even think about that right now.
Its only been 2 days and I am unbelievably home sick. I miss my kids tremendously and can't stop thinking about them. I miss my house, my family, my friends and just my life back home. Simple things that most people really take for granted (including myself before all of this). We feel so lost here. We haven't had any time to do anything in NY since we've been at the hospital most of the time but we hope to be able to do something fun over the weekend.
For now I am so grateful that Julia is well and seems to be handling everything very well. I pray almost every hour of every day that she can get through this with no complications and we can return home soon.
Thank you for the unbelievable support I have received from all of you. I will continue to keep you posted on how things are going here in New York City.
Nadia
We arrived in NYC on Tuesday night after a very, very bumpy ride. I was terrified and puking in a barf bag the whole way here (longest hour of my life). Julia on the other hand was laughing her head off saying "faster, faster this is so fun". My little 6 year old rubbing my back telling me it was going to be ok. What a trooper!
After an interesting encounter with our first taxi driver in NYC who brought us to the wrong place and started taking our bags out of the car, as I was telling him he couldn't leave us there it wasn't the right place, we finally arrived at the Ronald McDonald House.
Early Wednesday morning we arrived at Sloan Kettering to start the next part of our journey. Everyone was ready for us and welcomed us with open arms. It was so overwhelming and things are quite different here than at home. Julia had about 30 tubes of blood drawn, her exam with her new doctors, and then at 2:45 Julia's first cell transfusion took place. The doctor hand delivered the cells and transfused them herself. As she was infusing them she told Julia "here are mommy's cells, she worked hard for them Julia". It was unbelievable to watch. The infusion was very fast but there was a 4 hour monitoring period after infusion. My heart was racing and I don't think I've ever been so scared. The pre meds knocked her out and I sat by her bed watching every breathe she took wondering if my cells would hurt her. She did very well and doctors were pleased. We were back there today for blood work and everything looked very good. We need to go back tomorrow for clinic and hopefully everything will still be ok. Julia is feeling good right now. Interestingly, on Wednesday morning before arriving at Sloan Julia's oncologist emailed me to inform me that Julia's EBV test from last week is positive for EBV in her blood. This is what we were waiting for all this time to qualify for trial. So looks like now was the right time to come to NY......strange how things just seem to fall into place.
The house................I am having a very hard time adjusting to the Ronald McDonald house. It is very nice and the people here (both families and staff) are very nice but it is so very sad. The house is at capacity (84 families) and a lot of these families have been here for months and months. There are even quite a few that have already been here for a year and still have a year to go ( I can not imagine this). I can not handle all the sad stories and most of the families who have been here so long can't even afford to buy food.....break my heart. Tonight the house celebrated the start of the holidays with the lighting of the Christmas tree in the lobby. The kids sang songs and Santa came to visit. There were speeches by all the suits about how this is the "house of hope" and how in here the house tries to let them be kids first not kids with cancer. I was crying the whole time and couldn't believe I was even here. Never in a million years would I ever have thought we would be in a position like this. You can't even imagine the world that exists in here.....its the stories you may read about but never really know about, and I feel like I am living in a very bad dream.......and that if I pinch myself hard enough it will all go away.
Julia's second cell infusion will be on Wednesday and than the last one on Dec 14th. If all goes well we hope to be home on the 16th, but the doctor has already told us she believes Julia will benefit from another cycle. This would mean we would only be home for 3 weeks and than need to return. .....can't even think about that right now.
Its only been 2 days and I am unbelievably home sick. I miss my kids tremendously and can't stop thinking about them. I miss my house, my family, my friends and just my life back home. Simple things that most people really take for granted (including myself before all of this). We feel so lost here. We haven't had any time to do anything in NY since we've been at the hospital most of the time but we hope to be able to do something fun over the weekend.
For now I am so grateful that Julia is well and seems to be handling everything very well. I pray almost every hour of every day that she can get through this with no complications and we can return home soon.
Thank you for the unbelievable support I have received from all of you. I will continue to keep you posted on how things are going here in New York City.
Nadia
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