October 30, 2010

Saturday-Got some sad news today. One of the boys Cody became friends with died from his brain tumor yesterday. He was 19 I think. I kept in touch with his mom and dad and knew it was coming but always worse when it happens. We feel bad and are sending extra prayers for the family to get through this tough time. We will go to the house next week and Cody wants to attend the memorial for him on Thanksgiving weekend.

Rest of the day was ok. Went to HSE's football game and they lost badly. Relaxing at home tonight and watching the Islanders lose badly too.

Quiet night and hope Cody sleeps better. We think he may be having withdrawls from the pain patch he is no longer using. I gave him a little dose tonight so we will see how he does. We are also on night 3 of a longer lasting dose of insulin to help during the night. His glucose increases once his feeding tube goes on all night so this should eventually help and I will not have to wake up at 3-4 am to check and give him an injection of insulin. That will be nice. Watching it again tonight and then that should be it. He said it buned a little tonight when he urinated to making sure that does not get out of control. May have to take a ride in tomorrow. UGH.

Have a good night all...

October 29, 2010

Friday-Good day! We hunted down Bobby the busdriver today so we could see his costume. He always dresses up in something creepy. Cody got a huge smile out of it. He worked on a project for school with his dad for about an hour. Then we hung out and waited to go to the hockey game. The Islanders lost and it was a rather boring game. We met some nice people and hung out. All in all, a great day...night all.

October 28, 2010

Thursday-Another good day! Cody had a great day. We canceled the tutor so he could go to the soccer game. It was senior day. It was really cute. They called the moms out at half time and gave us flowers. They called Cody out last and he got lots of cheers too. It was a great day and they won on overtime. It was so good and exciting to watch. I am proud of Cody for sticking with his team. I see him standing on the side lines and I know he missed playing. But he does it and he only missed games when he was in the hospital. He will miss it and I will too. His dad showed up and we all went to eat afterwards. There is some tension there but we got through it. I know Cody feels it and he feels distant from his dad too. He is here till Saturday. We have the hockey game tomorrow night. Looking forward to that...night all.

October 27, 2010

Wednesday-Today was another great day. Cody met with his tutor and worked hard. We cut it short to attend the girls' volleyball game. It was their cancer fundraiser so we went. It was neat to see the game as I have never seen it in the high school. Cody enjoyed it too and saw some of his friends. Great day!

October 26, 2010

Tuesday-We got up early to get to Sloan so that we could be done in time to go to the boys soccer game. We had a great visit. Dr. Kernan was pleased with everything. She said he could go back to school in January. That brought a huge smile to his face. He was thrilled. We talked on the way home about it and he anxious. We are going to meet with the asst principal and the guidance counselor to discuss what it all entails.

Dr. Kernan also said Cody's fistulas are healing nicely which is a good thing. I really am hoping to avoid that surgery. He has a sore ankle but no xray is needed. She does not want to try the new drug for bone strength as she has really looked into and he is doing well without it. Maybe in a few months we will see but for now, we are being careful not to rock the boat. We are talking about the longer span between visits so I can do one at Winthrop after work. We came down on the steroids and the GVHD drug. He has a little rash and he is worried about GVHD of the skin. It is not that but he is worried. This happens more with him.

He is eating and his weight is steady. He needs to eat a little more to get his weight up.

Overall, a good day. We made it back to see the soccer game but they lost and it was not a good game. Sorry boys.

October 25, 2010

Monday-Cody met with his science teacher today. He did well until around halfway through when he felt nauseous. Thank goodness it passed. We did not have Spanish and ended up going to the girls' soccer game. It was senior day so there was a lot of speeches and gift giving. It was really cute how the girls did this. The boys don't. I found I got teary eyed a few times too.

It was a fun afternoon and looking forward to a good night of sleep.

october 24, 2010

Sunday-great day again today. We are enjoying our down time with these busy weeks. We got some groceries and ran a few errands. Brittany came over later to watch some movies. Cody is really feeling good. He and Brittany went for a walk with the dogs. So happy for him. She brought over an article that was in the local paper. So proud of Cody and his dedication to the team. Great weekend...ox

October 23, 2010

Saturday- A beautiful day here on Long Island. Cody feels good, the weather is awesome and an Islander game is on. :)

We went to lunch today and Cody ate almost all of his sandwich except one bite. Then he ate 2 sausages, the Italian hot ones too. He had 2 salads too. So proud of him and he feels so good about it. His ankle is hurting him for some reason. We went and got him new sneakers so maybe that will help. We shall see.

We took the dogs for a walk and Cody was sitting in the front yard with them so I snapped a few photos and got some really good ones. He loves his dogs!!!

This evening his girlfriend and her friend came over. The friend, Sammie, is an honor student and she is reviewing with Cody for the regents exam. It was really nice of her to do that. Brittany worked on her homework while they studied. Then I ran to get a pizza for them. I finally used one of my Spuntino's gift certificates! Those guys are so nice there too. We watched the hockey game and I am sorry to say the Islanders lost.

Hope everyone enjoyed their Saturday. I know Corinne and Michael did-Happy Anniversary!! OXOXOX

October 22, 2010

Friday-Today we had to make a decision. Cody and his guidance counselor decided it was best for him to drop his math class. He was getting so worked up about the math regents and we had not even had the math class and it is the end of October. He has his credits and needs to focus on the Global Regents which he is. He was ok once he talked to his couselor today. I am proud of him for making the decision.

We went to HSE boys soccer game and they beat the team in first place today 1-0. Great game but soooo cold. Not ready for the cold. Way to go boys.

I was able to go meet a friend, Grace for breakfast today and it was so good. I miss her and I miss my friends. I have to do that more.

Sitting at home and staying warm and going to call it a night soon..enjoy the weekend.

October 21, 2010

Thursday-Long day for Cody. He had 2 tutors today, back to back. It was tough but he got through it. There was no soccer games today so we chilled for the afternoon..

Good day.

October 20, 2010

Wednesday-It was a good day. We did our usual running around and then we thought the tutor was coming but I guess I made a mistake. Then the afternoon tutor called and they were chaperoning the soccer game and would get here late. We were not planning on going to the girls game but we did. Cody wanted to bring donuts to the team for all they did in his honor yesterday. So we did that. He felt pretty good and sat with his friends. He ate pretty well today too. I signed him up for a webcast for young adult survivors. So he was able to chat with other cancer and transplant young adults and then he posted a question for the phone chat/lecture to answer. He listened to the whole broadcast and chatted with other young adult survivors. It was the first time he really reached out and connected with survivors. I think it was good for him and I think he liked it so maybe this is something he will continue to do.

Hope everyone had a good day..hey the week is almost over. G'nite!

October 19, 2010

Tuesday-We made our trip to Sloan early today so that we can get out in time for the boys' soccer game today. We did it. We got there just in time. And the boys had a great game. 5-0 against Walt Whitman. We went to Subway with Brittany after.

At Sloan, Cody's grandparents met us there and helped pass the time. All things were good with Cody. There was an emergency there and we did not get to have a visit with Dr. K. We saw her and she tried but there was one emergency after another. All good and we left in time for the game. Good day at Sloan and a great afternoon.

October 18, 2010

Monday-Great day today. All is going well. Cody met with his spanish teacher and then we went to the girls soccer game. They were doing a fundraiser for cancer and honored Cody. The girls all had CB on their legs and they made a great speech about him. It was really special. I am really proud of how all the students in the high school have really come together on Cody's behalf. Bea came today and took tons of pics so we have her to thank for the memories. There was a few things raffled off and Cody won an IPOD, the new tiny ones. He won tickets to Schmitt's farm and he gave them to his friend Harry. We found out that one of his friends had won the IPOD at a party or something and donated it. This is an example of what I am talking about. Very touching. Great afternoon. Thanks HSE Girls!

October 17, 2010

Sunday- a beautiful fall day. We got both of our dogs back and we really missed them. Xena is sporting a new Islanders collar! Moira brought her back around 2 and the plan was to take Moira to lunch only to find that she treated us! She snuck in there before I could and that was not the plan. We are really lucky we have Moira and Cody's friend Tom to step in and pick up our dogs at a moment's notice. We are really lucky and so appreciative. I really hope I get a chance to do this for someone someday. I really do. I know Cody wants to help out someone too. He volunteered to take Moira's dog when she goes away but not sure we could do that. I would hate to have her and then we have to get someone for all three. I know where his heart is and he is so thankful for everyone too.

We relaxed here tonight and were very lazy. Hey, that is ok sometime too. Hope everyone had a good weekend. We did!

October 16, 2010

Saturday-Great day here and no calls about any news from the cultures. I ran errands this morning and Cody slept. He got up around 1, showered and then we talked to Casey before Cody went to see his dad for a little while. Then we took off to the Islander store and ate and then went to the hockey game. It was a slow game but in the last period they picked up the pace and won. Cody had a good time. Glad to be home and all is good.

October 15, 2010

Friday-So today I decided to get up early and go home and get out hockey tickets and Cody's jersey so when we are discharged tomorrow we can go to the game. So I hit the road at 10am and am returning around 12 and just get off the bridge and Cody calls to say we can leave today! He is thrilled. The dr is there and she gets on the phone and Cody promised that if the 72 hr culture comes back positive then we have to come back and be re-admitted for IV antibiotics. So we sit around all day and of course, are discharged at 5 pm, just in time for rush hour. It always happens that way for us. We stopped on the 9th floor to see one of our nurses, Liz. She came to see Cody and he was sleeping. We really love them all there. We have made some great friends too. We got home and went to eat and then crashed pretty early. It is so quiet here without the dogs. Good to be home as always....

October 14,2010

Thursday-Cody was very concerned about making the 'right decision' to have the pic line in. Ultimately, it was the drs choice, but he feels he pushed them. This made for a rough night of sleeping for him.

The day started out ok but then around lunchtime, Cody became nauseous and vomited. The antibiotics are strong. We just chilled for the rest of the afternoon. We cuddled in his bed and played games. He watched a movie and we just took it easy. It is quiet here as we are not on the peds floor. I made sure to get the clowns down here and enjoyed that today. His grandparents are here so his grandpa came for a while which helped pass the time and then his grandma came up. We took a walk downstairs and he nibbled on some soup. I went and got salad stuff for him and he ate two salads. He loves his wasabi peas so he ate a good portion of those too. His dad stopped in for a few minutes and then Cody went to bed. I know he was tired. Long, emotional and stressful day.

We are still waiting for cultures to come back. They are trying to identify the bacteria so they can be more specific with the right one to treat him. He is doing well overall and we hope to be home on Saturday.

October 13, 2010

Wednesday-What a day..It started out with a rough night of no sleep and then the resident coming in at 6 am and waking us with all the lights on. Then there was the pill dosage mix up. Thank goodness I am on top of it. The pic lines grew bacteria. So that had to be pulled. The resident and a NP that we are friendly with, thank goodness, came in to take it out. The resident has a shaking hand or tremor or something so when the line came out, she could not cut it. I had to take the scissors out of her hand and cut it while the NP took care of the site. Crazy.

This also meant a few IV sticks for lines in his hand. Then we are told we are on the schedule for 3 pm to get a new line. At 1:30 they come for Cody. I am downstairs eating lunch. I rush back up and just as we are about to leave the room, Cody is already on the stretcher, the dr comes to say that maybe we should wait for the line placement. Maybe we should wait till we get a negative culture back. Well, I am on board for that but Cody is not and he gets upset. I ask her to give us a few minutes and she calls our main dr who says it is ok to go ahead and do it. Cody knows I am thinking we should wait. He makes his decision to do it and then loses it again before we get in the elevator. We talk some more and head downstairs. He is not himself and keeps questioning it. Then we had to wait longer because his feeds were not cut off in time. He goes in for the procedure around 5. All is fine but he comes out with ringing in his ears. We had to wait in recovery a little longer. We get back to the room around 8 pm and he is upset again. His grandparents are here (Tim's parents) and he is quiet.

Let's hope that the new line does not grow anything. So on that note, I am calling it a night for a little while anyway. Include some extra prayers in our direction. Night all.

October 12, 2010

Tuesday-we ventured into Sloan this morning for a routine day. We were going to start the new med but lo and behold, when they took Cody's vitals, he had a high fever. He complained of intermittent pain when he urinated since the last visit here. We were told he could wait until today to get it checked as long as there was no temp or increased pain. So it happened today. So antibiotics were started immediately and fluids administered to prevent any pressures drops and in a few hours he had no fever. We are staying for a night or two to make sure this is not a line infection and to get some higher dose antibiotics. Not happy but like I have said to everyone here, he is probably the healthiest patient here.

Tonight the rescue of the miners that have been trapped for 69 days. Let's hope it is successful. Incredible.

Good night all....

October 12, 2010

Monday-The Islanders beat the Rangers, 6-4!! AWESOME!

The best part of the game was when Cody flashed up on the screen It was a tribute tothe Islanders Fight Cancer and they had him up there. I wrote a story on their website and they got the information from there. I honestly forgot I did it but it came out pretty good if I do say so myself and I am posting the link here for you to read.

http://islanders.nhl.com/club/search.htm?q=cody+byrnes

Cody is doing well. He has a urinary tract infection, pretty sure and so I am guessing that will be treated tomorrow. We head into to our weekly appointment. Hope everyone enjoyed their weekend as much as we did.

October 10, 2010

Sunday-Today Cody and I just kinda hung around and ran a few errands. We did some shopping and took it easy. We went to eat later that night and he and Brittany worked on homework together, so cute, I know. The weather was awesome and we had a great day. Looking forward to tomorrow's hockey game!

October 9, 2010

Saturday-Today did not start out too well. Well, Cody got up and we did his usual but just before we were heading to the soccer game, he became nauseous and vomited. He was feeling pretty yucky so he tried to take a short nap before the game. He did not fall asleep but I think he rested. The nausea passed and we picked up his girlfriend and headed to the boys soccer game. I did not mind as it was a beautiful day out! And they won!! Then we came home to chill before the Islander game tonight. Cody was VERY excited and we had a good time. Unfortunately the Islanders lost in a shootout. He got to see his friend Matt Russo there who is a huge fan also. His Spanish teacher was there so she came and said hello and our friend Jeff Picker came to say hi. It was fun and we thank Ann for our seats! Long day and looking forward to an uneventful night...

October 8, 2010

Friday-Quiet day but a good one. We waited for the math tutor but she did not show up. Something about car trouble. It made for a quiet afternoon. We ran around for a few errands and got the food for tonight's fondue with Brittany. We hung outside with the neighbor's for a few and I am def seeing Cody get more and more mature. He reminds me of Casey. Dinner with Brittany was nice. She is really sweet. They watched a movie and I ran to the mall. I wanted to give them some alone time too. Good day and night...ready for a beautiful weekend and 2 Islanders games...LET'S GO ISLANDERS!

October 7, 2010

Thursday-Another tutor and another soccer game. It is a little hectic now but will calm down once the soccer season ends this month.

Casey's platoon lost another guy. It was on the same day last year that he lost a sergeant that he knew. This guy was 30, married, 2 kids and wife 8 months pregnant. It was a freaky accident but it happened. He is going to the wake tomorrow and taking the parents. They are deaf so he was worried about that. I am so proud of him. He is learning about life's lessons, a bit too soon but he is handling it. Cody and I are trying to plan our trip there to see him. We miss him.

Another great day in the life of Cody Byrnes...correction-KING Cody...:)

October 6, 2010

Wednesday-Well, I see that i have seemed to have not written in a few days. I think this is a good sign. We have been going to the soccer games and Cody has started the tutors and has one everyday except Tuesday. It is a lot but he has to get through this. He has been upset a little about the whole car and driving issue. I know he wants to be 'normal' and this is hard. He is getting there but not there yet. We have not been in the hospital for 2 months now and it is so nice. I still have the packed suitcase in my trunk and I feel like if I take it out, then I will need it.

He is eating more, more active and seems to be moving pretty well too.

Let's keep it up...

October 5, 2010

Tuesday-It was an early day at Sloan and a good one. Cody had all good reports. He got two infusions and we did not start the new drug for his bones. It is a longer infusion and he asked if he could wait a week. We sat around and saw some really sick kids today and I was glad to get out of there. We did not feel like he was sick enough to be there too. So that was good. He really wanted to get home in time for soccer and we made it. The rain held off and he sat with the team. He really enjoys his time there. And it was a great game with lots of scoring.

Cody feels good and is now on this car kick. I know he wants to have everything 'normal' but he still has a long way to go. He got upset tonight too and I hate when he gets that way. Part of it is because I am tired and he pushes issues and it gets me upset. We talked and he seems better now. I will do whatever I can to help him get a car but he cannot get it NOW. It is good that he is feeling this way, as he feels better too!

Have a good night my friends...

October 4, 2010

Monday- Another rainy week ahead. It was a gloomy day. We hung out and stayed in and Cody has Spanish today. He did really well and enjoys his time with this teacher. He had her last year too. Then we took a ride to Brittany's soccer game and it was so awful out, rain, windy and cold. We stayed till half time and then came home so he could go eat at Subway. Good day. And we heard the girls won.

October 3, 2010

HAPPY BIRTHDAY CASEY! I am a mom because of you! I am so proud of you and miss you so much!! Hope you enjoyed your day.

Cody and I have been looking at all the wonderful pics from the last few days. Every minute I sign on, there are new pics posted. It is great to see the ones from last night since I was not there. Our friend, Bea took tons and I got some great shots. I ordered a bunch for the families. Looks like Cody had a great time and I am glad he won!!

Today he went and got his senior pictures taken. I really wanted them so he did it for me. He wanted Brittany to go and then we went to see the racetrack. Then we came home, they watched a movie and we went to Friday's for dinner. The surprise was we pulled in the same time Ben and his family did. Ben is Cody's friend from the other block. We love Ben so it was a nice surprise.

Another good day for Cody!! I love these days!

October 2, 2010

Saturday-What a perfect day and it ends with KING CODY! He won!! SO thrilled!!! He did well today although very tired. He came home at one point and took a nap before the evening festivities. He is pretty happy. There is a video clip on facebook that one of the teachers took. I stayed home for the evening events to let him have his time. It is blurry but you can see it.

I only wish Casey were here. And he turns 20 tomorrow!!! Would have been awesome to have them both here. So proud of both of my boys...

October 1, 2010

http://www.youtube.com/watch?v=gW69qXqbKWQ

Friday...this is the little clip of Cody at homecoming with his princess and escort...it was so cute. I am so proud of him. He did great today and it was so good to see him back at school!

We went to the VERY wet soccer game today too. It was the boys' game. Then off to eat at TGIF's tonight with his girlfriend and her parents. It was a pretty good day!!