Quiet morning here and nice to know my boys are still sleeping. Casey got here Thursday and it has been bittersweet. We have had to have some very tough conversations with Cody. It breaks my heart that 2 brothers have to do this. Cody adores his brother and now he has to speak to him about the hardest decisions ever. We are enjoying our time together, nonetheless. Cody was quiet and slept most of Thursday and did not eat too much. He was better yesterday and we got out. He wanted the new game system, PS4 for Christmas so I bought it for him. He loved playing it. Casey leaves tomorrow so we will make the most of today. I will get him here whenever he wants to come. It's tough, any way you look at it.
Cody had blood work yesterday and his counts were ok. He seems to be breathing a bit better but still is in pain. Maybe the lung radiation dried up a little of the flood. He still uses oxygen at night. We have to tweak the meds every day or so to try to get it right. He is eating ok but not a lot of snacking which he used to do. He gets wiped out easily and he does ask me to lie with him at night. The three of us crowded in there last night.
Thank you all, once again for all of your constant support and love. We feel it. We are so lucky that way. I am speechless. My sleepovers are the best. Just need someone here at night or I would never sleep either. Thank you.
Saturday, November 29, 2014
Wednesday, November 26, 2014
Wednesday, Nov. 26
I am finding it hard these days to say "happy" anything. I do hope you all enjoy your Thanksgiving with your families. I will have my boys here and that is all that matters. Casey gets in tomorrow. We are going to go to Cody's uncles but we will not spend the whole day there. I would have rather it just be us and be at home, but……
My heart is being warmed by the entire HHH community. We are blessed beyond words. Thank you to all of you! You left us speechless. I have the perfect place for the framed photo (great job, Saber!) and cannot wait to show it off. Your thoughtfulness and generosity is deeply appreciated. We love all of you and thank you.
Cody has been doing ok. He wanted to get out yesterday so we ate lunch and dinner out. He seems to be getting winded easier and he coughs from time to time. He relaxes and sleeps a lot of the day but he needs that. I know he is excited to have Casey here tomorrow and I cannot wait to hear their laughter again. It gets harder when he leaves but we make the best of our short time together. I will get him here every weekend if I have to.
The hospice nurse visited Cody yesterday. She is sweet. I am waiting for the social worker to come now. I actually miss our visits to Sloan, crazy I know but it is comfort.
A special thank you to all my sleepover guests. I need that support and my friends are here. We are more than friends. I never knew what it was like to have a sister but now I do. Thank you.
Enjoy your day tomorrow and stay warm today…xoxoxoxo
My heart is being warmed by the entire HHH community. We are blessed beyond words. Thank you to all of you! You left us speechless. I have the perfect place for the framed photo (great job, Saber!) and cannot wait to show it off. Your thoughtfulness and generosity is deeply appreciated. We love all of you and thank you.
Cody has been doing ok. He wanted to get out yesterday so we ate lunch and dinner out. He seems to be getting winded easier and he coughs from time to time. He relaxes and sleeps a lot of the day but he needs that. I know he is excited to have Casey here tomorrow and I cannot wait to hear their laughter again. It gets harder when he leaves but we make the best of our short time together. I will get him here every weekend if I have to.
The hospice nurse visited Cody yesterday. She is sweet. I am waiting for the social worker to come now. I actually miss our visits to Sloan, crazy I know but it is comfort.
A special thank you to all my sleepover guests. I need that support and my friends are here. We are more than friends. I never knew what it was like to have a sister but now I do. Thank you.
Enjoy your day tomorrow and stay warm today…xoxoxoxo
Monday, November 24, 2014
Monday, Nov. 24, 2014
Last radiation. I do not feel so good about this. Cody asked the dr what is next. His reply, I do not know. Breaks my heart.
We met with psychiatry too with his dad and tried to work out a few things. Yeah, that did not go too well. Not going to get into here because I know those of you reading already get it. I do what Cody needs me to do and will always do that.
Trying to figure out our plans for the next few days. Cody said tonight he wants to just stay home on Thanksgiving so hoping we can do that. I suggested we go to his uncle's for dessert. I was thinking we could have some quiet time with Casey and do our tree this weekend. My heart breaks to think of Christmas but Cody might want to do that. I will continue to pray and hope you will too.
We met with psychiatry too with his dad and tried to work out a few things. Yeah, that did not go too well. Not going to get into here because I know those of you reading already get it. I do what Cody needs me to do and will always do that.
Trying to figure out our plans for the next few days. Cody said tonight he wants to just stay home on Thanksgiving so hoping we can do that. I suggested we go to his uncle's for dessert. I was thinking we could have some quiet time with Casey and do our tree this weekend. My heart breaks to think of Christmas but Cody might want to do that. I will continue to pray and hope you will too.
Sunday, November 23, 2014
Sunday, Nov 23…some photos
Cody with my dad
Cody with a gift basket..thanks, Liz and Dan
Uncle Roy
CousinsSunday, Nov. 23, 2014
Very busy weekend. We left the hospital on Friday and came home to a long time friend's visit for the weekend. We have had some very nice visits with so many of you and some very generous support too. I have someone with me every night. I am scared and I just do not want to be here alone and have to make any decisions or have to drive him in the event of anything. I am thankful for all of them!
The Long Island Raceway where Cody races his rc car did a fundraiser for him. We were able to stop in and I think Cody was overwhelmed. We only stayed about 20 minutes but it was long enough to see tears and the huge support of the friends Cody has made there. I was so touched. It was a really nice event that Don, the owner did for us. Very special. Thanks for representing us, Corinne, Michael and Bern. We appreciate it. We love you all!!
On Saturday, against my wishes, we took him to the casino in CT. I was so scared and so worried but he toughed it out. He actually came in 10th (which he was paid for) in the poker tournament and knocked out 5 players which he was compensated for too. He was in it for 5 hours!!! He took plenty of pain meds but he did it! Jean and Mike joined us there and Cody played craps with Mike and he won there too!! He came out way ahead!! It was a crazy long day but he did it.
He is making up for it today, he is sleeping most of it. I made my chicken soup and he is eating it which is good since his appetite has slowed down.
Tomorrow is his last day of radiation. He will have completed 67 rounds of radiation in the past 6 years. That is hard to grasp for anyone, let alone a 21 year old. But he fights on and does it, like a champ, no complaints whatsoever.
I am hoping for a quiet week. Almost forgot it is Thanksgiving. Casey comes on Thursday so that will be nice.
I am thankful for everyone. We have had food deliveries, cards, gifts, gift cards, texts, emails, donations, visits, sleepovers, lots of hugs and tears and we appreciate each and every one of you. There is no way I could do this alone, never. Thank you.
Cody and Don, the owner of the race track on Friday night.
The Long Island Raceway where Cody races his rc car did a fundraiser for him. We were able to stop in and I think Cody was overwhelmed. We only stayed about 20 minutes but it was long enough to see tears and the huge support of the friends Cody has made there. I was so touched. It was a really nice event that Don, the owner did for us. Very special. Thanks for representing us, Corinne, Michael and Bern. We appreciate it. We love you all!!
On Saturday, against my wishes, we took him to the casino in CT. I was so scared and so worried but he toughed it out. He actually came in 10th (which he was paid for) in the poker tournament and knocked out 5 players which he was compensated for too. He was in it for 5 hours!!! He took plenty of pain meds but he did it! Jean and Mike joined us there and Cody played craps with Mike and he won there too!! He came out way ahead!! It was a crazy long day but he did it.
He is making up for it today, he is sleeping most of it. I made my chicken soup and he is eating it which is good since his appetite has slowed down.
Tomorrow is his last day of radiation. He will have completed 67 rounds of radiation in the past 6 years. That is hard to grasp for anyone, let alone a 21 year old. But he fights on and does it, like a champ, no complaints whatsoever.
I am hoping for a quiet week. Almost forgot it is Thanksgiving. Casey comes on Thursday so that will be nice.
I am thankful for everyone. We have had food deliveries, cards, gifts, gift cards, texts, emails, donations, visits, sleepovers, lots of hugs and tears and we appreciate each and every one of you. There is no way I could do this alone, never. Thank you.
Cody and Don, the owner of the race track on Friday night.Wednesday, November 19, 2014
Wednesday, Nov. 19
I am so thankful for all the support we have. I will continue to update this when I can. Thank you.
Yesterday was long. Cody was in a lot of pain and they tried 2x to do the X-rays to calibrate the radiation to his right lung. We finally decided to go upstairs to get some IV pain med and that would help him relax. We ate a little in the cafeteria and he was able to get through it in the afternoon.
We made it home in time for the Hospice consult. It was very hard to talk to your son about a DNR. That is what they need in order for him to join their program. We asked questions, cried a lot and he was a trooper. We did not sign at that point. It was a lot to take in and I wanted to wait.
About an hour after she left, Cody spiked a fever. Thank goodness, our NP from the transplant, Julie, gave me her cell number. I really did not know what to do. My gut was to go to Sloan but then Cody said he wanted to stay home. Our lives for the past 6 years have centered around a fever as being an emergency and a need for antibiotics. But things are different now. Sloan is definitely our comfort area and we feel safe there. Cody wanted to stay here so that is what we did. So we called and signed him into Hospice. The nurse was here in 20 minutes, he needed oxygen and that was delivered in 30 minutes. We called Sloan and Dr. Wexler was on service so I spoke to him and he said just give Cody Tylenol. He did not seem to have a fever the rest of the night. Julie explained how it could be an infection in the fluid but more likely to be from the tumors. Fevers happen this way.
Sue, our great friend and neighbor was here and came again this morning. Casey was still here too. He left this morning and will be back next Thursday as originally planned. Dad leaves tomorrow.
We are so lucky to be surrounded by so many loving and caring family and friends, near and far. Thank you.
Yesterday was long. Cody was in a lot of pain and they tried 2x to do the X-rays to calibrate the radiation to his right lung. We finally decided to go upstairs to get some IV pain med and that would help him relax. We ate a little in the cafeteria and he was able to get through it in the afternoon.
We made it home in time for the Hospice consult. It was very hard to talk to your son about a DNR. That is what they need in order for him to join their program. We asked questions, cried a lot and he was a trooper. We did not sign at that point. It was a lot to take in and I wanted to wait.
About an hour after she left, Cody spiked a fever. Thank goodness, our NP from the transplant, Julie, gave me her cell number. I really did not know what to do. My gut was to go to Sloan but then Cody said he wanted to stay home. Our lives for the past 6 years have centered around a fever as being an emergency and a need for antibiotics. But things are different now. Sloan is definitely our comfort area and we feel safe there. Cody wanted to stay here so that is what we did. So we called and signed him into Hospice. The nurse was here in 20 minutes, he needed oxygen and that was delivered in 30 minutes. We called Sloan and Dr. Wexler was on service so I spoke to him and he said just give Cody Tylenol. He did not seem to have a fever the rest of the night. Julie explained how it could be an infection in the fluid but more likely to be from the tumors. Fevers happen this way.
Sue, our great friend and neighbor was here and came again this morning. Casey was still here too. He left this morning and will be back next Thursday as originally planned. Dad leaves tomorrow.
We are so lucky to be surrounded by so many loving and caring family and friends, near and far. Thank you.
Monday, November 17, 2014
Monday, Nov. 17
Another restless night. It is hard for Cody to get comfortable. We started on the couch sitting up, then went to lying down, then went to his bed. Today we increased the pain patch and yesterday I doubled the oral pain med. He finished 9 rounds of the brain radiation. Tomorrow he is finished with that. The 5 days of the lung radiation begins tomorrow. I also have hospice coming tomorrow. He seemed ok with the conversation today and I think he knows it will offer help.
Casey is here and helping and I know it is hard for him. He is going through his own stuff too.
I am enjoying all the support and visits from all of my family and friends. It is all overwhelming but good to have everyone around.
Actually sitting here waiting for my dad.
Cody just got a call from Mark Messier, a Ranger player. That was special for sure.
Thanks to the Scarpati family for arranging that!!
Casey is here and helping and I know it is hard for him. He is going through his own stuff too.
I am enjoying all the support and visits from all of my family and friends. It is all overwhelming but good to have everyone around.
Actually sitting here waiting for my dad.
Cody just got a call from Mark Messier, a Ranger player. That was special for sure.
Thanks to the Scarpati family for arranging that!!
Saturday, November 15, 2014
Saturday, Nov. 15, 2014
It has been a busy few days. We were at Sloan each day and made an emergency trip there last night. Cody had a lot of pain around 11 and so we drove in. We stayed till around 4 am. Pain meds were increased. He was good today but still out of it from the pains meds. He did make it to the movies today with everyone and a few friends came too. We all hung out this afternoon. He pushes himself so much. I just sit and watch him breathe.
Tomorrow Roy and the kids leave. It has been great having him here. It will be a tough goodbye in the morning, for all of us.
Casey got in yesterday too. So glad he made it. It is comforting to have an EMT in the house too.
We are thankful for the HHH community. Some very nice families made us food dinner and then we got another delivery from a great bunch of people involved with CFK. We had a houseful so it was perfect. Thank you all for that.
I do not have much else to say. I am scared and feel hopeless. Please pray for my boy.
Tomorrow Roy and the kids leave. It has been great having him here. It will be a tough goodbye in the morning, for all of us.
Casey got in yesterday too. So glad he made it. It is comforting to have an EMT in the house too.
We are thankful for the HHH community. Some very nice families made us food dinner and then we got another delivery from a great bunch of people involved with CFK. We had a houseful so it was perfect. Thank you all for that.
I do not have much else to say. I am scared and feel hopeless. Please pray for my boy.
Wednesday, November 12, 2014
November 12, 2014
Riding home after a long day. Met with Dr. Wolden. She is the radiation dr. She said Dr. Wexler asked if she could radiate Cody's lungs to help dry up some of the fluid. So on Monday we will add that.
A new seizure drug was added due to the mini seizure he had on Monday.
We met with surgery team and the plan went as followed. Dr. Heaton, who is another amazing dr there, removed 800 cc's of fluid. He said the tube kept getting clogged so we pulled it out. Cody was very nervous but I was there the whole time. We will check and of course he will be closely monitored.
I am scheduling hospice but we keep getting home too late so trying again for Friday.
Thanks for checking in on us.
A new seizure drug was added due to the mini seizure he had on Monday.
We met with surgery team and the plan went as followed. Dr. Heaton, who is another amazing dr there, removed 800 cc's of fluid. He said the tube kept getting clogged so we pulled it out. Cody was very nervous but I was there the whole time. We will check and of course he will be closely monitored.
I am scheduling hospice but we keep getting home too late so trying again for Friday.
Thanks for checking in on us.
Tuesday, November 11, 2014
Tuesday Nov. 11
I am so proud of my son, Casey. He even got his formal helicopter pilot license today. Cannot wait until he gets here Friday.
It has been a long few days. Today we got radiation and went up to get the tube unclogged. Dr. Heaton, Cody's surgeon worked on it and we got it unclogged and changed the contraption. It is flowing nicely tonight.
As we were driving, I contacted a good friend, Joanie Notarantonio. Cody mentioned a Ferrari today. Well, he got to ride in one, a very fast one, and it was a convertible! Thank you so much for doing that today!! And I loved seeing Ronny, my fav Kindergartener who is now 16! Cody had a blast.
My brother and family got here and it is quite busy. Good to have family but I am overwhelmed.
Cody is getting tired. Hope he can slow down.
Thank you all for your continued support and love and help!!!
It has been a long few days. Today we got radiation and went up to get the tube unclogged. Dr. Heaton, Cody's surgeon worked on it and we got it unclogged and changed the contraption. It is flowing nicely tonight.
As we were driving, I contacted a good friend, Joanie Notarantonio. Cody mentioned a Ferrari today. Well, he got to ride in one, a very fast one, and it was a convertible! Thank you so much for doing that today!! And I loved seeing Ronny, my fav Kindergartener who is now 16! Cody had a blast.
My brother and family got here and it is quite busy. Good to have family but I am overwhelmed.
Cody is getting tired. Hope he can slow down.
Thank you all for your continued support and love and help!!!
Saturday, November 8, 2014
November 8, 2014
I am beyond words and heart is shattered. The week came with lots of scans, PET scans, CT scans, MRI's, X-rays, and radiation began on Cody's brain for the tumor there. He has had 3 rounds and we will continue on Monday and he will get 10 and maybe a boost of 5 more. The chest tube is in and draining nicely which will make breathing easier and make Cody more comfortable. So the plan is to go home today. It is day by day and he wants to get home to see his dogs. We have told him that we can bring them here but his doctor said there is no reason he can't get home. His surgeon figured out a way to give him a drainage system that he can go home with. So we are leaving shortly. I have lots of drugs, including the rescue wafers needed in the event of another seizure. He had the grand mal on Tuesday and two more smaller ones on Wednesday. His seizure medicine was increased and a new drug added so hopefully that will all work. It is so scary and so heartbreaking.
The support has been amazing and so deeply appreciated. I am lucky that way. The support from Sloan and the preferential treatment has been unbelievable. Cody has a huge family here and the love is beyond words. Cody has spent 1/3 of his life here. It's our safe haven and we can come back any time, any day and whenever we need to.
We are working our schedules and visitors. My brother and his family come Monday and Casey comes Friday and my dad and stepmom come next Monday. I cannot be alone with him so all is being worked out. There will be lots of sleepovers at my house. All are welcome. All are welcome when we come back to Sloan too. Open door, always.
Cody has been such a fighter for almost 6 years now-Dec 14th will be 6 years that he has been fighting cancer. He continues to amaze me every minute. He is scared, worried, and petrified but still manages to enjoy his hot wings and smiles. I want him to get home, even if for a day, to see his dogs. Yes, my heart will be breaking but we will do this.
Thank you all so very much! I will do my best to stay in touch here. Love you all, more than you know.
PS. Huge thanks to my great friends that left work to come see us, those that just did not go to work, those that came after work, and to Tracy and Gregg thatt flew in from FL last night! I did not want to write names here because I knew I would forgot someone. Our days are blended together. Love you all. xoxoxoxo
The support has been amazing and so deeply appreciated. I am lucky that way. The support from Sloan and the preferential treatment has been unbelievable. Cody has a huge family here and the love is beyond words. Cody has spent 1/3 of his life here. It's our safe haven and we can come back any time, any day and whenever we need to.
We are working our schedules and visitors. My brother and his family come Monday and Casey comes Friday and my dad and stepmom come next Monday. I cannot be alone with him so all is being worked out. There will be lots of sleepovers at my house. All are welcome. All are welcome when we come back to Sloan too. Open door, always.
Cody has been such a fighter for almost 6 years now-Dec 14th will be 6 years that he has been fighting cancer. He continues to amaze me every minute. He is scared, worried, and petrified but still manages to enjoy his hot wings and smiles. I want him to get home, even if for a day, to see his dogs. Yes, my heart will be breaking but we will do this.
Thank you all so very much! I will do my best to stay in touch here. Love you all, more than you know.
PS. Huge thanks to my great friends that left work to come see us, those that just did not go to work, those that came after work, and to Tracy and Gregg thatt flew in from FL last night! I did not want to write names here because I knew I would forgot someone. Our days are blended together. Love you all. xoxoxoxo
Tuesday, November 4, 2014
Tues. Nov. 4
This is hard to write.
After a good night, the day did not end well.
We went down to xray around 9 am. While sitting in the wheelchair, Cody had a grand mal seizure. It is beyond describable. Uncle Jim was there and we both freaked and started yelling. In a matter of seconds, he was flooded with help. We landed in icu. A cat scan of the brain was ordered. It is not good. The cancer has spread. Cody now has a brain tumor in the left frontal lobe which caused his seizure. I am speechless. The conversation with his dr was heartbreaking. Cody will begin radiation tomorrow to try to stop the growth. He had an MRI tonight which only showed the one tumor. He will have a petscan in the morning to look in the rest of his body. My heart is shattered. And to think Cody apologized to me for putting me through this. We talked a bit tonight. He now knows he has to stop school and driving. I feel awful. Sick.
Cody was up to visitors today. I am thankful that my friends came up. Tomorrow and Thursday more are coming. It breaks it up and Cody seems ok with everyone. I pray and ask all of you to do the same.
After a good night, the day did not end well.
We went down to xray around 9 am. While sitting in the wheelchair, Cody had a grand mal seizure. It is beyond describable. Uncle Jim was there and we both freaked and started yelling. In a matter of seconds, he was flooded with help. We landed in icu. A cat scan of the brain was ordered. It is not good. The cancer has spread. Cody now has a brain tumor in the left frontal lobe which caused his seizure. I am speechless. The conversation with his dr was heartbreaking. Cody will begin radiation tomorrow to try to stop the growth. He had an MRI tonight which only showed the one tumor. He will have a petscan in the morning to look in the rest of his body. My heart is shattered. And to think Cody apologized to me for putting me through this. We talked a bit tonight. He now knows he has to stop school and driving. I feel awful. Sick.
Cody was up to visitors today. I am thankful that my friends came up. Tomorrow and Thursday more are coming. It breaks it up and Cody seems ok with everyone. I pray and ask all of you to do the same.
Monday, November 3, 2014
Nov 3 pm
Chest tube is in. Drain is in place. Dr removed a liter and a half of fluid. The fluid did not appear to look cancerous but pathology will confirm. Dr was not sure if this will help with the pain. He may need this again. He's very comfortable now. They are giving him a pain pump to help keep him comfortable. Let's pray it's a short stay without any more news or complications.
Monday, nov 3.
So things are not good. Cody came up to me around 4 am. The pain was unbearable. We are at Sloan. He got an xray and his lung is full of fluid. We are waiting for surgery to place a chest tube in. We are both so nervous and scared. We are here for a few days. Pray for us!!
Sunday, November 2, 2014
Nov. 2, 2014
Sunday-Sitting here watching the marathon with my boy. He loves seeing the roads near Sloan and the runners are the bridge that we take every time we head in.
Yesterday he tried his luck at another poker tournament. He was not focusing and got out after an hour. Thank goodness I had company, Moira and Bernadette. He is having trouble breathing. He was emailing the drs and finally spoke to his dr in the afternoon. We will be going in tomorrow or Tuesday to get an X-ray and see if it is the fluid causing him to have difficulty. He has to sleep a certain way and now is having some back pain. It is so heartbreaking to watch. He is in control and we will get him checked out in the next day or two. Not sure what the next step is. I spoke to the nurse practitioner that we are friends with and she said it is always hard to take that next step when you have had no symptoms and now you do. That is where Cody is. He seems very nervous and he has to be scared too. I know I am. I hear a cough every now and then. It really can't get better without some intervention and the realization is hitting me that the chemo is not working.
That's all for now...
Yesterday he tried his luck at another poker tournament. He was not focusing and got out after an hour. Thank goodness I had company, Moira and Bernadette. He is having trouble breathing. He was emailing the drs and finally spoke to his dr in the afternoon. We will be going in tomorrow or Tuesday to get an X-ray and see if it is the fluid causing him to have difficulty. He has to sleep a certain way and now is having some back pain. It is so heartbreaking to watch. He is in control and we will get him checked out in the next day or two. Not sure what the next step is. I spoke to the nurse practitioner that we are friends with and she said it is always hard to take that next step when you have had no symptoms and now you do. That is where Cody is. He seems very nervous and he has to be scared too. I know I am. I hear a cough every now and then. It really can't get better without some intervention and the realization is hitting me that the chemo is not working.
That's all for now...
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