Friday-Long week! We had two nights at the Helmsley and two nights at the Ronald house. There was lots of moving which is tough. Cody did well. It was his LAST cycle for this protocol. He will begin maintenance the next round. He is amazing.
We hung out with Sam on Wednesday! He was back and is supposed to get his port out. He is amazing too. He could not go to dinner with us and it is hard for him to sit. So we brought it to him. He is such a sweet guy and is doing this alone. He does have a friend in Poughkeepsie he is staying with. I wish I could do more for him. I am trying to kinda push he and Cody but Cody is kinda shy about it. Sam always asks about him and they did talk a little. I am hoping to get him out here one weekend.
I did a lot of talking this week. I saw the family I met on their day of admittance. The mom is Asian and the dad is Irish. It was the first transplant taken from both parents. They were not a match but it is working! Their son is having a tough time and sounds like the same route Cody went in a lot of ways, feeding tube, GVHD, C diff, nausea….so Cody and I both tried to offer our support. I also met a family just starting out with their son with Ewing's. Their parents are sweet and very scared, understandably so.
It is tough to see families going through this tough time. I know I am in it and when I really think about it, I get upset. The support from all those that work there is amazing. We had a different nurse and she was a doll. Very caring and she had a tough childhood, growing up without parents.
Long week and I am glad to be home. Looking forward to chilling all weekend. Praying for all good stuff!
Friday, July 18, 2014
Wednesday, July 16, 2014
July 16, 2014
Wednesday-So today started out a little shaky. Matisse, Cody's little cousin came to Sloan today to get his last dose of pentamidine. It is a preventative medication for pneumonia. He has gotten it before but this time it just did not agree with him. We are sitting on Cody's room and his IV was going and he said his throat was bothering him. He got a drink and then he just said he was tired and that he did not feel well. He said on his dad's lap and became lethargic. I ran to get his nurse and then the rush of drs and nurses came in. It was scary and Cody was on his bed and was just watching. Matisse said he couldn't breathe and so oxygen was started. The pentamidine was stopped and fluids started and he slowly started to perk up and his color resumed. He was moved to a bed and rested a little while and then he was back to himself. It was strange because the reaction happened pretty much when the infusion was ending and he has the med several times. Thank goodness it was his last dose. He is doing VERY well and leading a pretty much normal life now.
Cody was fine and is doing well. He is eating and even the drs are impressed that he eats through his chemo. I met a family today that is just starting out with the same cancer. Their son is 16. It is just so sad. They are so scared and I tried to fill them in and offered my help when they might need it.
I am happy to say that my buddy Sam is back in town. He is doing well too! He is actually scheduled to get his port out. He is the 27 year old that had his first diagnosis of Ewing's at 21. We met him last year. He relapsed but seems to be doing much better. He is staying with a friend in Poughkeepsie I think. I met him in the hallway and he looks good too! We tried to plan dinner but he has a hard time sitting. So we decided to pick dinner up for him and bring it back to Ronald for him. (We got bumped out of our hotel.) We hung out in the 'living room' here at Sloan for a while. He is a great young man and has no family support. So sad to me. He is doing this all on his own. He was so helpful to me when Cody was first diagnosed, telling me about this cancer, etc. I ran down to get ice cream and made a delivery to him. He is very thankful and appreciative. He seemed so happy to have us to talk to. I wish Cody would be more interactive with him but you cannot force that.
Sweet dreams to all...
Cody was fine and is doing well. He is eating and even the drs are impressed that he eats through his chemo. I met a family today that is just starting out with the same cancer. Their son is 16. It is just so sad. They are so scared and I tried to fill them in and offered my help when they might need it.
I am happy to say that my buddy Sam is back in town. He is doing well too! He is actually scheduled to get his port out. He is the 27 year old that had his first diagnosis of Ewing's at 21. We met him last year. He relapsed but seems to be doing much better. He is staying with a friend in Poughkeepsie I think. I met him in the hallway and he looks good too! We tried to plan dinner but he has a hard time sitting. So we decided to pick dinner up for him and bring it back to Ronald for him. (We got bumped out of our hotel.) We hung out in the 'living room' here at Sloan for a while. He is a great young man and has no family support. So sad to me. He is doing this all on his own. He was so helpful to me when Cody was first diagnosed, telling me about this cancer, etc. I ran down to get ice cream and made a delivery to him. He is very thankful and appreciative. He seemed so happy to have us to talk to. I wish Cody would be more interactive with him but you cannot force that.
Sweet dreams to all...
Monday, July 14, 2014
July 14, 2014
Cycle 14 is underway. This is the last one before maintenance. We are hoping for a smooth week here at MSKCC. Thanks to all those that include us in their prayers. Thanks for all the encouraging words and posts. Thanks, too for our continued help with the fishes (Silvino's and Bern) and for the doggies (Moira, you are the best!). We are lucky that way. Cody adores all of his pets and we would not be able to have them without the support and help from all of you!
We were hanging out and there is this adorable 16 year old here with osteosarcoma. He is from Lebanese. He is here with his cousin. He met Cody a few weeks ago, doing card tricks. He and his cousin hung out with us and it was so cute to see he and Cody interacting. With the card tricks they both know, I was encouraging them to go on "America's Got Talent." If the rubbed their bald heads together, Howie would surely pass them through.
I will update later this week, so far so good!
We were hanging out and there is this adorable 16 year old here with osteosarcoma. He is from Lebanese. He is here with his cousin. He met Cody a few weeks ago, doing card tricks. He and his cousin hung out with us and it was so cute to see he and Cody interacting. With the card tricks they both know, I was encouraging them to go on "America's Got Talent." If the rubbed their bald heads together, Howie would surely pass them through.
I will update later this week, so far so good!
Sunday, July 13, 2014
july 13, 2014
World cup final!! Cody is glued to the TV!
Tomorrow we are scheduled for cycle 14 which is to be the last one in the protocol then we begin maintenance. We will be staying in the city. They tell us the Ronald might be booked so we will get bumped to a hotel..sigh. (Not really!) There are positives and negatives to a hotel. You do not get the meals and the hoopla that the house brings but with a hotel, you do not have to clean the room when you leave. Either way, we are good. We will get up and get blood work nice and early and go from there.
We had a nice quiet week. Nicole was here so we had lunch with her today. She looks good, as always.
I will keep you posted….thanks for reading!
Tomorrow we are scheduled for cycle 14 which is to be the last one in the protocol then we begin maintenance. We will be staying in the city. They tell us the Ronald might be booked so we will get bumped to a hotel..sigh. (Not really!) There are positives and negatives to a hotel. You do not get the meals and the hoopla that the house brings but with a hotel, you do not have to clean the room when you leave. Either way, we are good. We will get up and get blood work nice and early and go from there.
We had a nice quiet week. Nicole was here so we had lunch with her today. She looks good, as always.
I will keep you posted….thanks for reading!
Monday, July 7, 2014
July 7, 2014
Hi all. So we had a drive to the city and parked at Sloan for blood work. Well, we were in and out in an hour. He did not need anything. His counts are recovering on his own. One more cycle of this chemo which will begin next week and then on to maintenance. If you are in the city next week, call us. We will be there, Monday-Friday.
We had a quiet 4th. We have been visiting friends and trying to stay busy. It's really been nice to just chill and not worry about too much for a change. Hope everyone enjoyed theirs.
Enjoy the weather...
We had a quiet 4th. We have been visiting friends and trying to stay busy. It's really been nice to just chill and not worry about too much for a change. Hope everyone enjoyed theirs.
Enjoy the weather...
Wednesday, July 2, 2014
July 2, 2014
All went well at Sloan. Cody's platelets are low but no transfusion was needed. We both met with his psychiatrist and that went well. Things seem to be better between us. We went to the other location for the integrative medicine dr. We talked about ways to gain weight and how to get more carbs into his diet. We got dinner at Cody's favorite mexican restaurant there and then we went home.
We are still trying to work out a trip to GA but it doesn't look like it is happening right now. I checked the same flights I checked yesterday and they doubled!! I will keep looking.
No plans and it feels good right now..we head back to Sloan on Monday and hoping all stays status quo. Cody has now lost his voice and my back tweaked again so it was a nice day of resting….
We are still trying to work out a trip to GA but it doesn't look like it is happening right now. I checked the same flights I checked yesterday and they doubled!! I will keep looking.
No plans and it feels good right now..we head back to Sloan on Monday and hoping all stays status quo. Cody has now lost his voice and my back tweaked again so it was a nice day of resting….
Tuesday, July 1, 2014
July 1, 2014
Happy Birthday to my great friends, Jean Szigethy and Michael Short!!
Today we are heading to Sloan for bloodwork. Cody has an appointment later this afternoon (during the USA game and he is pissed about that!!) with integrative medicine. They are kinda the follow up team that discusses diet and exercise and how to build your body back up. I hope we see his oncologist, Dr. Wexler as I want to see if Cody is allowed to fly for the weekend of the 11th. We are hoping to get down to see Casey for a weekend. I think Cody might be getting a little cold. He has a slight cough and just would not be good right now without his cells dropping, white blood cells. These are the ones that fight infection. Of course he is still sleeping so I will see how he feels when he gets up. Hoping for an uneventful day.
Go USA!!
Today we are heading to Sloan for bloodwork. Cody has an appointment later this afternoon (during the USA game and he is pissed about that!!) with integrative medicine. They are kinda the follow up team that discusses diet and exercise and how to build your body back up. I hope we see his oncologist, Dr. Wexler as I want to see if Cody is allowed to fly for the weekend of the 11th. We are hoping to get down to see Casey for a weekend. I think Cody might be getting a little cold. He has a slight cough and just would not be good right now without his cells dropping, white blood cells. These are the ones that fight infection. Of course he is still sleeping so I will see how he feels when he gets up. Hoping for an uneventful day.
Go USA!!
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