The breathing thing is worrying me. Cody called his dr today ( and I have to leave it in his hand right now-that would be another reason for him to get mad at me which he does a lot of lately) and he did not get a call back which is unusual and has me kinda pissed. He will be calling tomorrow. I am thinking it will not get better, especially if he needs to get some of the fluid out. He is not in pain, just needs to take deeper breaths. I know he is worried. I actually thought he was going to break down last night. He was mad at me and he saw me upset. He gets very upset with me and seems to have a very short temper these days. I am not sure if it is the meds or the chemo or stress. I am thinking it is prob a combination of everything. I am trying to do my best here and keep him busy. It is just hard. It is hard for me because I sit and watch everything. He is still pretty active and doesn't sound winded when he talks.
Hopefully we will get an answer tomorrow. I am thinking we will have an appointment in the next day or so and I hope it is sooner rather than later. I did speak to a nurse practitioner today and I asked her to call him tomorrow to check on him before I knew he was calling. Praying for a good night. xoxo
Thursday, October 30, 2014
Wednesday, October 29, 2014
Oct. 29, 2014
So far so good but blood work is making me more worried. Platelets are lower since the week of chemo. I pray this is not the trend, that they will bounce back up. The plan is for Cody to continue the drug and do blood work on Tuesday and we will go from there. I think he could be slowing down a bit but not sure. He does seem quiet.
Looking forward to a good weekend, he does not work and wants to go to the casino again. He loves those poker tournaments. He tells me he will make it big one day as a poker champion. We will go on Saturday as your wish is my command, my boy. Only wishing I could do more.
November is here this weekend and I am looking forward to our visitors. Enjoy the rest of the week and Halloween with those little ones!
Looking forward to a good weekend, he does not work and wants to go to the casino again. He loves those poker tournaments. He tells me he will make it big one day as a poker champion. We will go on Saturday as your wish is my command, my boy. Only wishing I could do more.
November is here this weekend and I am looking forward to our visitors. Enjoy the rest of the week and Halloween with those little ones!
Saturday, October 25, 2014
Oct. 25, 2014
Glad the week is over and we can relax a little.
So far, no effects from chemo, thank goodness. We are keeping the anti-nausea meds going. He seems to be a little more sore than usual from the biopsy. Could be because a different doctor did the biopsy or maybe his body is just tired of those. He did take some pain pills here and there, but overall, he's a trooper. He is working the hockey game tonight and I am going to relax there with Moira. We get to have dinner before too so I am looking forward to that.
We try to keep busy and that keeps our minds off it. I cry first thing in the morning and before I go to bed. That is my time. It comes and goes. It's normal. I am numb in a lot of ways too. I am lucky to have such amazing support from my family, in FL and at work. So lucky and would not be able to get through this without all of them. Thank you.
So far, no effects from chemo, thank goodness. We are keeping the anti-nausea meds going. He seems to be a little more sore than usual from the biopsy. Could be because a different doctor did the biopsy or maybe his body is just tired of those. He did take some pain pills here and there, but overall, he's a trooper. He is working the hockey game tonight and I am going to relax there with Moira. We get to have dinner before too so I am looking forward to that.
We try to keep busy and that keeps our minds off it. I cry first thing in the morning and before I go to bed. That is my time. It comes and goes. It's normal. I am numb in a lot of ways too. I am lucky to have such amazing support from my family, in FL and at work. So lucky and would not be able to get through this without all of them. Thank you.
Thursday, October 23, 2014
Oct. 23, 2014
A bit of good news in all this…the preliminary bone marrow results do not know anything significant. So that is good….
Wednesday, October 22, 2014
Oct. 22, 2014
More cancer…this is from his dr today:
Cody’s CT scan does confirm what we saw on the chest x-ray, but provides much greater detail: specifically, there’s been a significant amount of tumor growth in the right lung over the past month (things that were there have enlarged and new tumors that weren’t there have appeared), but more significantly there is now a “moderate” sized fluid collection (called an effusion) between the lining of the lung (the pleura) and the lung. This is probably why he has been having discomfort when he lays down. It is not yet significant enough to cause him to be short of breath though he might experience discomfort with deep breaths. He should continue to do whatever he feels well enough to do. I would not place restrictions on him simply because of these findings.
If the pazopanib (the new chemo) works as we hope it will, this fluid collection should go away on its own over the next week or two or three. If the pazopanib does not help, I fear that he will develop worsening breathing symptoms over the course of the next 2-4 weeks and that we might need to do a procedure to remove some of the fluid to temporarily alleviate his symptoms.
I thought I would be ok with any new findings. Well, I was not. I planned to come home at lunch to tell him. He is a very strong young man. His response to me was : "Mom, we will get through this." He saw my tears and I think he sensed my worry and fear.
We did start the new chemo today and Cody took the day to relax. He did get out in the rainy, windy weather to watch the last home game for his high school soccer team. His coaches, Carcone and Choilfi are amazing. They let him out on the field with the team and he beams. He looks up to these two coaches and they are so good and supportive with him. I stayed and sat in the car. It breaks my heart to see him there, knowing he cannot play. He took a pain pill for the biopsy pain and did manage to kick the ball a little while the team was warming up.
Just booked Casey's ticket for Thanksgiving. It will be nice to have him here and with my brother and nephews. Lots of testosterone in the house, oh boy!
Thank you all for today…there are no words…xoxoxoxo
Tuesday, October 21, 2014
Oct, 21, p.m.
Long day but we are home.
So where do I start? The X-ray showed some tumor growth. Not sure yet if it is new growth or the tumors they saw before are growing. A ct scan was scheduled for later in the day to get a better picture.
We do not have results of that yet.
Cody's bloodwork was good and the platelets are up. We will start the chemo in the morning. That is good news.
The bone marrow biopsy was performed. Cody is sore but doing ok. They are looking to see how the marrow looks, is it just worn out? Or is it some kind of leukemia or are there Ewing's cells there? We will find all this out in a few days or early next week.
Cody's dr is still hopeful that this drug will help and that a clinical trial will open. He was very understanding and compassionate today. He did the biopsy himself and gave Cody a hug when he saw him walking out. We discussed other options and other places to go. He knew of the dr that I had researched that is from MD Anderson but is in NC. He said if he knew a place for us to go, he would tell us and I feel he would. I asked about supplements and he wants us to hold off until we see how the chemo works. I really feel we are in the best hands and that we are on the right path.
Praying for a miracle…..
So where do I start? The X-ray showed some tumor growth. Not sure yet if it is new growth or the tumors they saw before are growing. A ct scan was scheduled for later in the day to get a better picture.
We do not have results of that yet.
Cody's bloodwork was good and the platelets are up. We will start the chemo in the morning. That is good news.
The bone marrow biopsy was performed. Cody is sore but doing ok. They are looking to see how the marrow looks, is it just worn out? Or is it some kind of leukemia or are there Ewing's cells there? We will find all this out in a few days or early next week.
Cody's dr is still hopeful that this drug will help and that a clinical trial will open. He was very understanding and compassionate today. He did the biopsy himself and gave Cody a hug when he saw him walking out. We discussed other options and other places to go. He knew of the dr that I had researched that is from MD Anderson but is in NC. He said if he knew a place for us to go, he would tell us and I feel he would. I asked about supplements and he wants us to hold off until we see how the chemo works. I really feel we are in the best hands and that we are on the right path.
Praying for a miracle…..
Oct. 21, 2014
So we are heading to Sloan today. Cody will have bloodwork done and a chest X-ray. I am guessing at that point they will decide of the bone marrow biopsy is necessary. They are still saying they think he has fluid in his lungs so we will discuss that and figure out a plan.
He was busy yesterday and I was anxious to see how he did after lying around all weekend. He was good. He stayed up to watch more football.
Casey called late last night and he wants to come for Thanksgiving too. My brother and nephews are coming the day after Thanksgiving so we will have dinner on Friday. It will be so nice to have them here. I know Casey is getting worried too. I can hear it in his voice. All of this breaks my heart.
So send us healing vibes today….xoxoxox
He was busy yesterday and I was anxious to see how he did after lying around all weekend. He was good. He stayed up to watch more football.
Casey called late last night and he wants to come for Thanksgiving too. My brother and nephews are coming the day after Thanksgiving so we will have dinner on Friday. It will be so nice to have them here. I know Casey is getting worried too. I can hear it in his voice. All of this breaks my heart.
So send us healing vibes today….xoxoxox
Sunday, October 19, 2014
Sunday, Oct. 19, 2014
So thankful for this weekend at home with my son. He loves his hockey and football so we watched that. The dogs were right by our sides. He was quiet and on the couch all weekend so thinking he is not feeling so great either.
Last night, Cody did tell me about the chest pain. I was able to reach out to our friend and NP from Sloan today and she thinks it could be fluid in his lungs from the tumors. Not sure if that will change any biopsy plan (not sure about anesthesia) or if there will now be scans. I am getting anxious and more nervous but the minute. He gets mad at me if I ask him about his health, I know this is his frustration and worry and I get all that. I really want to get to the drs so we can talk to him. We are hoping he can start the chemo once we know what his platelets are.
I wish this was not happening. Sometimes I feel numb. I do not know what to do with myself. I just try to keep busy and to keep him happy and fed. (Made more chicken soup last night and he is eating it all!)
Keep praying…for a miracle.
Last night, Cody did tell me about the chest pain. I was able to reach out to our friend and NP from Sloan today and she thinks it could be fluid in his lungs from the tumors. Not sure if that will change any biopsy plan (not sure about anesthesia) or if there will now be scans. I am getting anxious and more nervous but the minute. He gets mad at me if I ask him about his health, I know this is his frustration and worry and I get all that. I really want to get to the drs so we can talk to him. We are hoping he can start the chemo once we know what his platelets are.
I wish this was not happening. Sometimes I feel numb. I do not know what to do with myself. I just try to keep busy and to keep him happy and fed. (Made more chicken soup last night and he is eating it all!)
Keep praying…for a miracle.
Saturday, October 18, 2014
Saturday, October 18, 2014
I only wish Casey were here with us tonight, home with the dogs and blankets, watching the Islanders play. Unfortunately, Cody is starting to have some mild chest pain that has me very worried. I know he emailed his drs and did not tell me but tonight he decided to tell me. If it gets worse, we will go to Sloan. Otherwise we wait till Tuesday at which point I hope we get more information. He is quiet, I think he is tired and he does not feel so great. We stayed home last night and did not do much today and have no plans tomorrow. I know he is scared, he has to be. I am a mess. I am trying to stay strong for him.
Yesterday was very special at work. Everyone wore Cody's shirts and we had a nice bagel breakfast. The new teachers in my building even bought them. Cody met me for lunch and I think he was kinda shocked to see everyone wearing them. I work with some amazing and special people. They are my support here when my family cannot be here and it is so comforting. I am so truly lucky to have them.
Looking forward to when my brother and my dad and stepmom come. Just trying to handle that so Cody is not overwhelmed.
Enjoy your Saturday night…xoxoxox
Yesterday was very special at work. Everyone wore Cody's shirts and we had a nice bagel breakfast. The new teachers in my building even bought them. Cody met me for lunch and I think he was kinda shocked to see everyone wearing them. I work with some amazing and special people. They are my support here when my family cannot be here and it is so comforting. I am so truly lucky to have them.
Looking forward to when my brother and my dad and stepmom come. Just trying to handle that so Cody is not overwhelmed.
Enjoy your Saturday night…xoxoxox
Thursday, October 16, 2014
Wednesday, Oct 15, 2014
So his folate and B12 levels are normal. Biopsy is scheduled for Tuesday.
Tonight Cody went to Alumni Night at Dowling to be award an academic scholarship. A huge thank you to Mary Picarello and Corinne Short for writing such amazing letters on his behalf. I am so proud of my son, as always.
Tonight Cody went to Alumni Night at Dowling to be award an academic scholarship. A huge thank you to Mary Picarello and Corinne Short for writing such amazing letters on his behalf. I am so proud of my son, as always.
Tuesday, October 14, 2014
October 14, 2014
Still waiting to hear from the drs. They are waiting on folic acid and B12 results before they can do biopsy. Not really sure of the connection but should hear something tomorrow. Guess it takes longer to get those results back…until tomorrow.
Monday, October 13, 2014
Monday, Oct. 13, 2014
Good and bad, happy and sad. It was a tearful goodbye for sure. Just left Casey and Nicole at the airport.
Blood counts are not high enough. They are creeping but not enough to start chemo. We are waiting for the next plan of attack. We will continue to pray for a miracle.
Not much else to report. Cody is napping now. I know he is wiped out. He had a good weekend for sure. He pushed himself as he always does. Not gonna keep writing since I am shot and this probably will not make any sense. I will conclude once we have a plan of action.
xoxoxoxo
Blood counts are not high enough. They are creeping but not enough to start chemo. We are waiting for the next plan of attack. We will continue to pray for a miracle.
Not much else to report. Cody is napping now. I know he is wiped out. He had a good weekend for sure. He pushed himself as he always does. Not gonna keep writing since I am shot and this probably will not make any sense. I will conclude once we have a plan of action.
xoxoxoxo
Sunday, October 12, 2014
Sunday, Oct. 12, 2014
Busy and tired. We have been having a great time with Casey and Nicole. We packed it in today.
Cody loved seeing his friends tonight at dinner and was thoroughly surprised. We miss those that could not make it. Thank you to those that did come, Leah, Renee, Jimmy, Tom, Nicole and Jessie. It was nice to have Sue and Emily there too. We love all of you. We had dinner and then all went to the Schmitt Farm Haunted House and the Haunted Corn Maze. Thanks so much to Kate and her family for letting us all do that. It was fun and it was full of laughs. His childhood friend, Jimmy and his sister, Mary came back to the house and we played games. It is kinda bittersweet. I see these healthy and strong young men and then I see Cody. It is not fair.
Going to bed now. Pray for good counts tomorrow. Thank you.
Cody loved seeing his friends tonight at dinner and was thoroughly surprised. We miss those that could not make it. Thank you to those that did come, Leah, Renee, Jimmy, Tom, Nicole and Jessie. It was nice to have Sue and Emily there too. We love all of you. We had dinner and then all went to the Schmitt Farm Haunted House and the Haunted Corn Maze. Thanks so much to Kate and her family for letting us all do that. It was fun and it was full of laughs. His childhood friend, Jimmy and his sister, Mary came back to the house and we played games. It is kinda bittersweet. I see these healthy and strong young men and then I see Cody. It is not fair.
Going to bed now. Pray for good counts tomorrow. Thank you.
Wednesday, October 8, 2014
Wednesday, Oct. 8, 2104
So we are trying to make sense of all this when there is no 'sense' in it. Cody's dr has been so good and answers each and every question with so much detail.
I will do my best to interpret. So there is concern that the Ewing's cancer cells are in his bone marrow. It is not blood cancer like leukemia but that his blood is sorta a highway and the Ewing's cancer cells are flooding it. This could be the reason they platelets are not recovering. He gets blood work on Monday so we will go from there. Last week I tracked down the new med and now we have it and he can't take it. Disturbing.
We are also asking about options and other places. His dr prepared a report without me even asking and said we can send it anywhere. I kinda am leaving that up to Cody. He asked me to help him today and we will begin looking to see if we want to try anywhere else. His dr is searching and I am confident in that.
For now, I will focus on my time with Cody. Casey and Nicole come tomorrow. Casey wanted to do something for Cody so he planned a little dinner party that Cody does not know about. I tracked down some of Cody's friends and so did Casey so it will be fun to have them altogether. Cody will be surprised too. We are going to the hockey game Saturday and Cody will work it. It is the last home opener at the coliseum.
Cody was beaming yesterday!! He got a call from his hockey player, Richard Park..from Korea! He could not stop smiling. I had emailed Richard and he then he took it upon himself to call him. Such a special person.
I am so blessed to have all my support from my work family each and every day I drag my butt there. I love all you and I am so lucky. I cannot say it enough.
Love that my neighbors are some of my best friends too, love those Silvino's.
My FL family, my dad and stepmom, my brothers and Veronica and all my extended aunts and uncles and cousins…I wish we lived closer. I am anxiously awaiting your visits.
I am going to read these emails again that the dr wrote and add more when I can…have a good night all.
Praying for a miracle…..
I will do my best to interpret. So there is concern that the Ewing's cancer cells are in his bone marrow. It is not blood cancer like leukemia but that his blood is sorta a highway and the Ewing's cancer cells are flooding it. This could be the reason they platelets are not recovering. He gets blood work on Monday so we will go from there. Last week I tracked down the new med and now we have it and he can't take it. Disturbing.
We are also asking about options and other places. His dr prepared a report without me even asking and said we can send it anywhere. I kinda am leaving that up to Cody. He asked me to help him today and we will begin looking to see if we want to try anywhere else. His dr is searching and I am confident in that.
For now, I will focus on my time with Cody. Casey and Nicole come tomorrow. Casey wanted to do something for Cody so he planned a little dinner party that Cody does not know about. I tracked down some of Cody's friends and so did Casey so it will be fun to have them altogether. Cody will be surprised too. We are going to the hockey game Saturday and Cody will work it. It is the last home opener at the coliseum.
Cody was beaming yesterday!! He got a call from his hockey player, Richard Park..from Korea! He could not stop smiling. I had emailed Richard and he then he took it upon himself to call him. Such a special person.
I am so blessed to have all my support from my work family each and every day I drag my butt there. I love all you and I am so lucky. I cannot say it enough.
Love that my neighbors are some of my best friends too, love those Silvino's.
My FL family, my dad and stepmom, my brothers and Veronica and all my extended aunts and uncles and cousins…I wish we lived closer. I am anxiously awaiting your visits.
I am going to read these emails again that the dr wrote and add more when I can…have a good night all.
Praying for a miracle…..
Tuesday, October 7, 2014
Tuesday, Oct 7, 2014
So we cannot start today. His counts are not high enough. His platelets are 88,000. They are creeping up. Just spoke to our NP and she emphasized that his body is tired. She does not feel he has cancer there but the fact that his body is tired is why it is taking so long to bounce back. I know he called MD Anderson today. We had a talk about options and there is just not much out there. Sloan is looking, NYU is looking and we pray. I just feel helpless.
Sunday, October 5, 2014
Sunday pm….
No skydiving today. The weather conditions were not good (wind) so it did not happen. The season ended today so we will have to wait. I am happy and sad about this. I know Cody wanted it more than anything and that makes me sad. I am happy because I have to think that this happened for a reason. He was not supposed to skydive today. Thanks for all checking in on us. Hopefully we can make that happen another time. Good night all.
Sunday, Oct. 5, 2014
Well, I am the mom to a 24 year old now. I feel OLD! Glad Casey and Nicole will be here on Thursday.
Things are quiet here. We did get the chemo but we cannot begin it until his platelets recover. The sad fact is that they might not recover. Cody's body is tired and is kinda resistant to chemo now since he has had so much. I am really leaving it all in God's hands. It he recovers, then we give it a whirl. If not, then we know how tired his body really is. We have been doing some different kinda things. Just yesterday while it was pouring we hung out in his bed and watched silly videos. Last night he asked me to lay with him. Precious time and I would not change it for a second.
I just dropped him off at Adventureland so he can do the Islander Meet and Greet with the players. He is a trooper. He had to be there at 7!! Now we are waiting to see how the wind fairs out today so he can skydive. Last night, winds were going to be an issue. Seems very calm out there now but you never know how it is out east or up in the air. So I will wait for the confirmation.
Yesterday he went to the movies with Moira. I decided to do my hair appt and she took him to a movie. I am not such a movie person but Moira and he is so it works. It saddens me that he does not have those few friends to hang with but I am so grateful for all of mine.
I will update tonight regarding his skydive experience. I am sure it will be tougher for me on the ground.
Things are quiet here. We did get the chemo but we cannot begin it until his platelets recover. The sad fact is that they might not recover. Cody's body is tired and is kinda resistant to chemo now since he has had so much. I am really leaving it all in God's hands. It he recovers, then we give it a whirl. If not, then we know how tired his body really is. We have been doing some different kinda things. Just yesterday while it was pouring we hung out in his bed and watched silly videos. Last night he asked me to lay with him. Precious time and I would not change it for a second.
I just dropped him off at Adventureland so he can do the Islander Meet and Greet with the players. He is a trooper. He had to be there at 7!! Now we are waiting to see how the wind fairs out today so he can skydive. Last night, winds were going to be an issue. Seems very calm out there now but you never know how it is out east or up in the air. So I will wait for the confirmation.
Yesterday he went to the movies with Moira. I decided to do my hair appt and she took him to a movie. I am not such a movie person but Moira and he is so it works. It saddens me that he does not have those few friends to hang with but I am so grateful for all of mine.
I will update tonight regarding his skydive experience. I am sure it will be tougher for me on the ground.
Thursday, October 2, 2014
October 2, 2014
So we are getting the drug. It will be delivered on Saturday. Once platelets are over 100,000 we will start the pazopanib. Pray.
Tomorrow Casey turns 24! He is the reason I am called 'mom'. I am glad he will be here next week so we can celebrate. Happy Birthday, Casey!!
Spirits seem to be ok tonight. There are definitely more quiet times but we do talk and Cody seems happy about the drug.
Sunday is skydiving. I am excited for him but I really want that behind us. Lucky to know some friends will be with me and one, MOIRA, will be diving too!
Again, I am just saying that my family, my work family and friends are amazing. I feel so loved and everyone is so supportive, even when it is hard to say anything. LOVE YOU ALL!
Tomorrow Casey turns 24! He is the reason I am called 'mom'. I am glad he will be here next week so we can celebrate. Happy Birthday, Casey!!
Spirits seem to be ok tonight. There are definitely more quiet times but we do talk and Cody seems happy about the drug.
Sunday is skydiving. I am excited for him but I really want that behind us. Lucky to know some friends will be with me and one, MOIRA, will be diving too!
Again, I am just saying that my family, my work family and friends are amazing. I feel so loved and everyone is so supportive, even when it is hard to say anything. LOVE YOU ALL!
Wednesday, October 1, 2014
October 1, 2014
To say Monday and Tuesday were a whirlwind would be an understatement. The tears have not stopped. I am trying to be there for Cody, as I always am. He has questions, here and there but I do not think it has fully hit him. I do see a complete change in him but I am trying to make sure he keeps his core-his amazing, sweet, humorous character in him. He is trying to keep busy and went to school and did a presentation. I went to work till 12 and cried. Thank goodness I work with the most compassionate teachers and administration in the world. Casey and Nicole are coming next Thursday for the weekend. Trying to figure out when my brother will come and then my dad and stepmom. Right now, Cody just wants to be home and do his things so not asking him to travel to FL to see them. He loves being home with his fish tank and his dogs. We will try to do a few things here to make his 'hang out' room more comfy. He loves watching his fish and hanging with his pups in that room. He is eating great, actually finally he likes my chicken soup. Made the 2nd pot last night for him. We are working on getting the new drug, waiting for insurance approval.
He was given the all clear to go skydiving. He is going on Sunday with some of his dad's family and his dad. Of course, I will be there and will be so glad when his two feet are back on the ground. He has asked each and every time we are at Sloan when he can do bungee jumping or skydiving. He has been waiting for his platelets to be stable and they are now before he starts chemo again.
So for now, we enjoy life. We do things Cody loves. It has kinda been that way for almost 6 years now but there is a different plan now. He wants to continue to do his internship with the Islanders He loves that so I will support him. I might be sitting alone at a few games but what the heck. He feels good now, without symptoms and we can only hope that he remains that way for a long time. When that changes, we work on another plan.
Thank you all so much for everything…there really are no words and I know that. Being there is what matters.
He was given the all clear to go skydiving. He is going on Sunday with some of his dad's family and his dad. Of course, I will be there and will be so glad when his two feet are back on the ground. He has asked each and every time we are at Sloan when he can do bungee jumping or skydiving. He has been waiting for his platelets to be stable and they are now before he starts chemo again.
So for now, we enjoy life. We do things Cody loves. It has kinda been that way for almost 6 years now but there is a different plan now. He wants to continue to do his internship with the Islanders He loves that so I will support him. I might be sitting alone at a few games but what the heck. He feels good now, without symptoms and we can only hope that he remains that way for a long time. When that changes, we work on another plan.
Thank you all so much for everything…there really are no words and I know that. Being there is what matters.
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