I think I put the date wrong yesterday.
Today was the first day the nurse came. She was very sweet but it took a long time for her to get through everything. We are trying to work out a schedule. She will work us in for tomorrow. The original nurse could not come because she wanted to come at 8 and that was too close to this infusion this evening. We will meet her on Thursday. She seems really nice on the phone.
I feel like this last week of vacation and we are trying to cram everything into it! I need to get work done. Hopefully tomorrow I can get some things done.
Thanks for reading and checking in with us!
Special thoughts today for the SooHoo's. Today is Tyler's angel day. For those that do not know, he was a former student and passed away from a brain tumor. He is watching down on us. RIP Tyler.
Tuesday, August 26, 2014
August 25, 2014
So we were in and out of the city by 12 yesterday. We got up early to get a jump on the traffic. We got the meds and we were off. We had the whole afternoon home. I was able to get into work and he was able to nap. All went well.
Today is the first day the nurse comes. I really wish I could do this myself as I am more protective. I will see how it goes. His port is accessed so just have to watch and make sure it is cleaned. Wish us luck. Today's nurse comes later but the next three days, she will be here early. I was kinda hoping it was the same one but guess that is not happening. We are also working on Sloan in Commack. They still consider him a pediatric patient so they will not treat him there.
Hope everyone has a great Tuesday!
Today is the first day the nurse comes. I really wish I could do this myself as I am more protective. I will see how it goes. His port is accessed so just have to watch and make sure it is cleaned. Wish us luck. Today's nurse comes later but the next three days, she will be here early. I was kinda hoping it was the same one but guess that is not happening. We are also working on Sloan in Commack. They still consider him a pediatric patient so they will not treat him there.
Hope everyone has a great Tuesday!
Sunday, August 24, 2014
Sunday, August 24, 2014
I sure hope that someone is looking down on me to help me get through all these scheduling issues with Cody. He made it through the weekend in Canada. While I admire his will and drive, I just do not know how he is going to do everything. He plans on attending school and doing his internship while getting chemo. It is a lot to work out! He is meeting with his advisor this week to work out some kind of schedule. We are not even sure how he will end up feeling. I am really worried about him.
This will be a busy week for us! Tomorrow begins cycle 2 and work and then Tuesday we will see how the home care works out. Should be interesting. Somehow he will be going to class and working through that too. I will try to keep my sanity and do my best at my job too!
Here's to a challenging few months….good luck to all of us!!
This will be a busy week for us! Tomorrow begins cycle 2 and work and then Tuesday we will see how the home care works out. Should be interesting. Somehow he will be going to class and working through that too. I will try to keep my sanity and do my best at my job too!
Here's to a challenging few months….good luck to all of us!!
Wednesday, August 20, 2014
August 20, 2014
Wednesday-Looks like we have the diarrhea under control. Cody seems to feel a bit better today. He is worried about his appetite but I think it was ok today. I know he emailed his doctors. He is excited because he is going to be on WPIX tonight with that boxer. He mentions Cody in the report. Pretty cool.
Yesterday we went to a trade show in NYC. He is trying to get ideas for his business.
Today we hung out and did a few things here. Tomorrow he is going to the Yankee game. Hoping Uncle Jim makes it back in time or I have to go. Not thrilled about going.
Have a good night everyone and watch WPIX at 10….thanks
Yesterday we went to a trade show in NYC. He is trying to get ideas for his business.
Today we hung out and did a few things here. Tomorrow he is going to the Yankee game. Hoping Uncle Jim makes it back in time or I have to go. Not thrilled about going.
Have a good night everyone and watch WPIX at 10….thanks
Sunday, August 17, 2014
August 17, 2104
Sunday-Quiet and relaxing weekend. We ended it tonight with a bike ride. Our friend, Moira drove out there to go with us. Cody did ok but was pushing himself. He was tired but he did well. He barely moved all weekend so this was a big deal.
I want to thank my Aunt Mary for sending me the cassettes she found of my mom and family. My grandparents are on there talking too. It brings you right back. Thanks to my friend, Bernadette for letting us borrow her cassette player. Hard to find one these days!
Tomorrow is blood work. We are planning to go visit Corinne and her boys after. We have not been out there this summer, just once. It has been a busy one.
I might stop by work in the morning and just see what it all looks like. It will be here before we know it. It was nice having off and being able to focus all my energy on Cody and his treatment and appointments. Busy week ahead with lunch date and then Cody is going to the Yankee game with his uncle on Thursday. Friday morning he is going to Canada for the weekend.
Here's hoping for a good week for all of us.
I want to thank my Aunt Mary for sending me the cassettes she found of my mom and family. My grandparents are on there talking too. It brings you right back. Thanks to my friend, Bernadette for letting us borrow her cassette player. Hard to find one these days!
Tomorrow is blood work. We are planning to go visit Corinne and her boys after. We have not been out there this summer, just once. It has been a busy one.
I might stop by work in the morning and just see what it all looks like. It will be here before we know it. It was nice having off and being able to focus all my energy on Cody and his treatment and appointments. Busy week ahead with lunch date and then Cody is going to the Yankee game with his uncle on Thursday. Friday morning he is going to Canada for the weekend.
Here's hoping for a good week for all of us.
Saturday, August 16, 2014
August 16….
Here are the clips from the fight:
https://www.youtube.com/watch?v=AuNUX6qlBdM&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw
https://www.youtube.com/watch?v=n6zDNtFIRx8&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw
Enjoy!
https://www.youtube.com/watch?v=AuNUX6qlBdM&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw
https://www.youtube.com/watch?v=n6zDNtFIRx8&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw
Enjoy!
Friday, August 15, 2014
August 15, 2104
Long few weeks. Glad it is behind us. Now we just have to figure out the rest.
One of my biggest challenges to me personally is how to let him go? I know he needs to do things without me and he does (he is flying to his dad's on Friday and going to a Yankee game with his uncle on Thursday) but I hate when he goes alone. I worry and worry and worry some more. It is a different challenge for me. I was speaking to our new friend from MSKCC, David. He is probably in his late 40's. We shared a few tears. He said he worries about his wife and how she feels and deals with all of it. He has 2 young kids and that is another worry for both of them I am sure. Different for all of us, but somehow we get through it.
Cody did well. He had a few days of nausea but we got that worked out. It was better to nibble and not have a big lunch right after the chemo. So he had some crackers during the infusion and we had later lunches. Both days were much better.
He is off next week with just blood checks and then we head back on the 25th. We will have to see how the home care all works out.
Hoping for a quiet and relaxing weekend.
Enjoy yours!
One of my biggest challenges to me personally is how to let him go? I know he needs to do things without me and he does (he is flying to his dad's on Friday and going to a Yankee game with his uncle on Thursday) but I hate when he goes alone. I worry and worry and worry some more. It is a different challenge for me. I was speaking to our new friend from MSKCC, David. He is probably in his late 40's. We shared a few tears. He said he worries about his wife and how she feels and deals with all of it. He has 2 young kids and that is another worry for both of them I am sure. Different for all of us, but somehow we get through it.
Cody did well. He had a few days of nausea but we got that worked out. It was better to nibble and not have a big lunch right after the chemo. So he had some crackers during the infusion and we had later lunches. Both days were much better.
He is off next week with just blood checks and then we head back on the 25th. We will have to see how the home care all works out.
Hoping for a quiet and relaxing weekend.
Enjoy yours!
Monday, August 11, 2014
August 11, 21014
Day 6 was today. It is just one chemo drug. Cody's counts were actually very good, best they have been in a while. He did well. It was kinda a long day as they were busy there and the pharmacy was backed up. We saw our friends today, Meg and her mom and as always, we wish them continued great health and positivity. Cody hung for a while with a kid from Lebanon and he does card tricks. That is the attached pic. Also got more pics and the actual air time for Cody on Showtime at the fight on Saturday. I can email the link. Still trying to figure out how to get it to Facebook.
We will drive in again tomorrow. All is good, so far and we will pray it stays that way.
We will drive in again tomorrow. All is good, so far and we will pray it stays that way.
Sunday, August 10, 2014
August 10, 2014
What a long week. Cody completed his first round of maintenance chemo yesterday. He had it from Tuesday-Saturday. So far, he is doing well other than being tired. We are doing round the clock meds for nausea and we are prepared with tons of Immodium for another other issues. He is still eating but his cravings are a little odd. Keep praying!
Last night was amazing! The fights were something to see. It was more than I ever imagined. I always like seeing behind the scene stuff so there was a lot of that. The camera was on him and he was on Showtime and we will get a copy of the tape to see that. We went down after the game to meet the boxer, Danny Jacobs. He was so personable and hugged Cody when he saw him. He thanked us for being there. He was joking with Cody and was truly a nice man. We met his mom, son and his fiancé too. The girl and guy that came with us from Ronald House were so nice. We had a great time!!
We got home today around 12 and we are pooped. We will go back in the morning and see if the 2nd week of chemo will be starting. We are going to commute this week. There is a lot of down time and this way we can be home in our own beds each night. It is just for the 5 days if it is a go. We can do this.
Have a good Monday, my friends…xoxoxo
Last night was amazing! The fights were something to see. It was more than I ever imagined. I always like seeing behind the scene stuff so there was a lot of that. The camera was on him and he was on Showtime and we will get a copy of the tape to see that. We went down after the game to meet the boxer, Danny Jacobs. He was so personable and hugged Cody when he saw him. He thanked us for being there. He was joking with Cody and was truly a nice man. We met his mom, son and his fiancé too. The girl and guy that came with us from Ronald House were so nice. We had a great time!!
We got home today around 12 and we are pooped. We will go back in the morning and see if the 2nd week of chemo will be starting. We are going to commute this week. There is a lot of down time and this way we can be home in our own beds each night. It is just for the 5 days if it is a go. We can do this.
Have a good Monday, my friends…xoxoxo
Saturday, August 9, 2014
August 9, 2014
What a slow, long week. It has been going smoothly, thank goodness. I think I see a difference in Cody's cravings. He ate Chipolte 3x this week. I am fine, he is eating and he is actually slowly gaining! We took a ride down to Chinatown yesterday. It was a beautiful day and we had a nice walk which we both needed. We crashed early last night.
Today we are headed for day 5 and we will come back Monday to check his counts and see if we will continue for next week. I think we might commute next week. Maybe break it up, not sure. It's nice staying at Ronald and being close but it is not home and there is a lot of down time here and that gets $$ too. I know I will have the gas expense commuting but we can sleep at home and eat at home. We will figure it out, we always do.
Tonight is the boxing event. The limo is getting us here at Ronald at 5. There are two employees here going too. It should be a fun time. I know Cody is looking forward to it. I am hoping he gets a nap in before we go.
We are off to Sloan. Should be a quick and easy infusion. He actually gets a few, nausea med, a steroid and then the IV chemo and then two pills of chemo too. Crazy when I think I of the big picture.
Enjoy your day, my fiends and family. We love all of you!!
Today we are headed for day 5 and we will come back Monday to check his counts and see if we will continue for next week. I think we might commute next week. Maybe break it up, not sure. It's nice staying at Ronald and being close but it is not home and there is a lot of down time here and that gets $$ too. I know I will have the gas expense commuting but we can sleep at home and eat at home. We will figure it out, we always do.
Tonight is the boxing event. The limo is getting us here at Ronald at 5. There are two employees here going too. It should be a fun time. I know Cody is looking forward to it. I am hoping he gets a nap in before we go.
We are off to Sloan. Should be a quick and easy infusion. He actually gets a few, nausea med, a steroid and then the IV chemo and then two pills of chemo too. Crazy when I think I of the big picture.
Enjoy your day, my fiends and family. We love all of you!!
Wednesday, August 6, 2014
August 6, pm...
So a little bit of a hectic day. We finally spoke to Cody's oncologist and he said the plan is that Cody returns on Monday and then we will check counts. He is not sure how Cody will do. These drugs are not supposed to be so immunosuppressive so he may continue with chemo next week, after all. Crazy few weeks for sure.
Today I stood in for Jim. He called me around 12 and said Matisse had a fever of 104 and that is non speaking english grandparents were bringing him to Sloan. Jim is in NC and Matisse's mom was working downtown. (No further comment needed there.) I waited for them to come and Matisse got his bloodwork. He sounds like he has some kind of bug. His counts were good so they quickly sent him home. He no longer has a mediport and is off treatment so he did not need to be there. He was more dangerous to the patients there. Cody had left and came back to take a nap. Matisse was ok and left.
I am proud of Cody for sitting in a focus group tonight. He was with his social worker and another coordinator and about 10 teens/young adults with cancer. He enjoyed it and offered lots of feedback and maybe made a new friend. He is so good with all that.
Still figuring out plans this week but may go home tomorrow for the night and return Friday. Not sure as he is trying to meet a friend here tomorrow evening. Just working out details. I could use to go home. I have to go get clothes for the big fight on Saturday anyway.
Hope everyone has a good night…..I'm pooped!
Today I stood in for Jim. He called me around 12 and said Matisse had a fever of 104 and that is non speaking english grandparents were bringing him to Sloan. Jim is in NC and Matisse's mom was working downtown. (No further comment needed there.) I waited for them to come and Matisse got his bloodwork. He sounds like he has some kind of bug. His counts were good so they quickly sent him home. He no longer has a mediport and is off treatment so he did not need to be there. He was more dangerous to the patients there. Cody had left and came back to take a nap. Matisse was ok and left.
I am proud of Cody for sitting in a focus group tonight. He was with his social worker and another coordinator and about 10 teens/young adults with cancer. He enjoyed it and offered lots of feedback and maybe made a new friend. He is so good with all that.
Still figuring out plans this week but may go home tomorrow for the night and return Friday. Not sure as he is trying to meet a friend here tomorrow evening. Just working out details. I could use to go home. I have to go get clothes for the big fight on Saturday anyway.
Hope everyone has a good night…..I'm pooped!
August 6, 2014
Wednesday-Sorry for not posting yesterday but the reception was bad. So maintenance chemotherapy did indeed start yesterday. Cody is getting irinotecan by IV and then temozolomide orally. The original plan was for 10 days of this but with his history from the last drugs, the team decided to do 5 days of it for this cycle and see how he does. I think he was a little nervous but so far so good. He is on another antibiotic and now charcoal to help his gut adjust to the new drugs.
Tonight he was asked to be in a teen/young adult focus group. They will have dinner and then have a discussion. I think that will be great for him.
He was asked to be the honored guest of the boxer, Daniel Jacobs for his title fight this Saturday night. Daniel is a 2 year survivor of osteosarcoma and work with the Ronald House. We will be going with 2 people that work here and they are getting us a limo. We might go home for tomorrow because now we will stay here Saturday night too to go to the event. He gets VIP access, whatever that means. Here is the link for the article about Saturday: http://www.thesweetscience.com/news/tss-press-releases/19091-golden-boy-fighter-daniel-jacobs-to-make-cancer-patient-wish-come-true-on-fight-night
If you google his name, there is more info about his illness. We are looking forward to it. I am not much into boxing but the experience will be awesome.
Ohhhhhh and last night, we stopped in the little candy store for my ice cream addiction. I know it was someone but could not place the family. It was Neil Patrick Harris with husband and the most adorable twins. He did not say much and was kinda keeping to himself so I did not pressure him for a picture. His nails were all polished different colors and he had a hat on. When he stepped outside he put sunglasses on. It was kinda neat! I get star struck and Cody gets embarrassed by me…LOL
So today we are heading back to Sloan around 11. Cody is still sleeping and I guess I will go get some breakfast. Keep your fingers crossed for a smoooooooth week. Love you all!!!
Special thank yous to our neighbors for taking care of the fish and for Moira for taking our pups. I know Bern offered too, so thank you. We are so lucky to have ALL of you at our fingertips!!!
And Happy Anniversary to my dad and his bride, Bonnie…(it is either today or tomorrow, I always forget the day!)
Tonight he was asked to be in a teen/young adult focus group. They will have dinner and then have a discussion. I think that will be great for him.
He was asked to be the honored guest of the boxer, Daniel Jacobs for his title fight this Saturday night. Daniel is a 2 year survivor of osteosarcoma and work with the Ronald House. We will be going with 2 people that work here and they are getting us a limo. We might go home for tomorrow because now we will stay here Saturday night too to go to the event. He gets VIP access, whatever that means. Here is the link for the article about Saturday: http://www.thesweetscience.com/news/tss-press-releases/19091-golden-boy-fighter-daniel-jacobs-to-make-cancer-patient-wish-come-true-on-fight-night
If you google his name, there is more info about his illness. We are looking forward to it. I am not much into boxing but the experience will be awesome.
Ohhhhhh and last night, we stopped in the little candy store for my ice cream addiction. I know it was someone but could not place the family. It was Neil Patrick Harris with husband and the most adorable twins. He did not say much and was kinda keeping to himself so I did not pressure him for a picture. His nails were all polished different colors and he had a hat on. When he stepped outside he put sunglasses on. It was kinda neat! I get star struck and Cody gets embarrassed by me…LOL
So today we are heading back to Sloan around 11. Cody is still sleeping and I guess I will go get some breakfast. Keep your fingers crossed for a smoooooooth week. Love you all!!!
Special thank yous to our neighbors for taking care of the fish and for Moira for taking our pups. I know Bern offered too, so thank you. We are so lucky to have ALL of you at our fingertips!!!
And Happy Anniversary to my dad and his bride, Bonnie…(it is either today or tomorrow, I always forget the day!)
Saturday, August 2, 2014
August 2, 2014
SO we do not know yet about chemo beginning Monday. We will do blood work nice and early and go in if we need to. I will pack and be prepared. We want to stay Monday and Tuesday night and then come home Wednesday and drive in Thursday and Friday. We have to do this for the first 10 days and just for the first cycle to see how Cody does. I want to get it out of the way before school starts. Then we will do the rest of the infusions at home. He needs to get his port accessed on a Monday and then chemo at home. We have a lot to work out as he is scheduled to start back with his classes on September 2. I hope he is not doing too much.
Last night Cody raced his car which he has not down in a while. He was home around 12. I think he had a good time. If nothing, he got to hang with the guys. This weekend we have no plans. I kinda like a rainy day every now and then. Makes me get stuff done here.
Today marks 3 months already since my mom passed. I actually think I saw her here the other night. I was getting into my car and she was on the other side. I was afraid at first because I knew someone was there. My heart started racing. It was all of 3 seconds. I still have a good portion of her ashes here that I plan to scatter when we get the first snow fall. She loved the snow. Maybe then I will see her spirit more. Yes, I believe in that.
So with that, I need to get moving. Enjoy your weekend, my friends and family. Love you all. Thanks for always reading!
Last night Cody raced his car which he has not down in a while. He was home around 12. I think he had a good time. If nothing, he got to hang with the guys. This weekend we have no plans. I kinda like a rainy day every now and then. Makes me get stuff done here.
Today marks 3 months already since my mom passed. I actually think I saw her here the other night. I was getting into my car and she was on the other side. I was afraid at first because I knew someone was there. My heart started racing. It was all of 3 seconds. I still have a good portion of her ashes here that I plan to scatter when we get the first snow fall. She loved the snow. Maybe then I will see her spirit more. Yes, I believe in that.
So with that, I need to get moving. Enjoy your weekend, my friends and family. Love you all. Thanks for always reading!
Friday, August 1, 2014
August 1, 2014
I cannot believe it is July is over. How did that happen? It is really nice to just chill and not have to worry about work. We have lots to do with Cody's treatment but at least I do not have to worry about work. Today he goes for blood work to see if platelets are high enough to begin treatment on Monday. I really hope they are so we can get this all done before I have to start thinking about school. We will know shortly.
Enjoy your day and your weekend, my friends….
Enjoy your day and your weekend, my friends….
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