December 29, 2010

So I managed to get a little sleep on the tiny bed with Cody. It was uncomfortable but I got a little. We are waiting to go upstairs and see what the drs say.

We saw the team and we are pretty sure Cody just got himself dehydrated and tried to eat pork ribs that he was not ready to digest. We left the hospital around 1 today and we both went home and crashed. We woke up at 4 and Cody's dad stopped over. Cody is upset about his grandfather passing. He wanted to see his dad. He was only here for a little while and then Cody and I watched the hockey game. He felt much better but just tired as I was. Early bed tonight.

December 28, 2010

Tuesday-Cody saw his dad for dinner last night and went with him around 12 today. They went to the city and went to a museum which we all know Cody hates. Oh well. He ended up leaving it early and going to his uncle's house. He said he did not eat much and was texting me all day. I know he was bored. He got home around 10 pm and about an hour later he vomited. I gave him the anti vomiting med and we tried to go back to sleep. He vomited again around 1 am and that is when I call Sloan and we needed to come in. So off we go and I was able to give him the stress dose of steroids at home. He did not vomit anymore but was dehydrated when we got here. He said he did drink but I have a feeling he did not. He was with this dad for 10 hours. That is the conclusion we got here, so far dehydration. On the way, his dad called back to tell us that the grandfather passed away. He has always had heart issues but I guess it was just time. I feel bad. He was a good guy. He will be missed. RIP Ron Byrnes.

December 27, 2010

Monday-Digging out of the two feet of snow. There were drifts higher than that too.

I went out early to start the walkway. Thank goodness we did not have any emergencies. We stayed in again today. I think we did make it to Subway later in the day so he could get his favorite sandwich. Long day at home again....

December 26, 2010

Sunday-Well today it snowed. And it snowed and the wind blew. The Blizzard of 2010! Needless to say, we stayed in all day and Cody did a good deal of eating. He had little meals but he ate.

We watched a few movies and just hung out and watched it snow....

Decmeber 23, 2010

Thursday-Today was a fun day at work. I made a thank you speech to my teachers. I got through it without tears. Later we had our sing along. Cody was at his school and they had a pep rally for the winter sports. They did a pie throwing contest and raised money for Cody. He got to throw a pie into the teacher's face and he got it! He and Brittany then came to my school and was there for the sing along. Cody was singing his heart out too. It was cute. He walked around and saw my friends and I know they were glad to see him. He was good with the kids. One kid asked him if he had cancer and how he felt. Cody answered him and did a great job. It was a fun day.

December 25, 2010

Christmas Day-

I woke up to Cody crawling in bed with me. Now this was a big task for him. He had to walk up the stairs on his own which he did. He was pretty excited. We opened a few presents and did the skype thing with Casey and he watched us and we watched him. I think he missed us. Cody was thrilled with his stuff and I am happy with mine. It was a nice morning. We watched Roy and Veronica and the kids on Skype too. Cody sent grandma (my mom) a fake lottery ticket so she was calling about that. He got her good. It was funny. We made a ham and just watched movies and ate and chilled for the rest of the day. Guess we will do this tomorrow too as snow is coming. Merry Christmas to all. I hope yours was a good one! Stop and count your blessing and enjoy the time with your family and friends.

December 24, 2010

Christmas Eve-Today was a fun day. We kinda just hung around and then ended up at the movies with Cody's girlfriend. It was a nice afternoon. Then Cody and I went to his friend's house for dinner, surf and turf. All good for me and I even got to have a glass of wine. Cody hung with his friend and a few other kids and had a good time. We got home in time to get a good night of sleep and wait for Santa....Merry Christmas Eve...

December 22, 2010

Well, the Islanders did it again for us!! Not only did they win but we are so lucky to have been connected with such great people. We were down at the ice watching warm ups and one of the players, Trevor Gillies, saw Cody and came to the glass and pounded it with his stick and gave him a huge hello. Then he threw a puck over but we did not catch it. Cody was beaming.

We met with our friend there, Ann. We had a present for her. Well, she comes walking up with a HUGE framed present of some kind for Cody. It was a beautiful framed photo of Richard Park! Cody was so thrilled and speechless.

We were talking with an usher and he told us we could move seats to come closer. As we were standing with him talking, he was talking to a guy and we found out it was Josh Bailey's dad. Josh is Cody's new player. So during the game we were sitting with Cody's friends and Cody decided he wanted to go introduce himself. So he walks over and Josh's dad shakes his hand and he sits with him. They have a chat and Cody walks back just smiling.

We are sitting there watching the rest of the game and Mr. Bailey comes over with a signed plaque thing, like a trading card but made of hard plastic. He says there are only a few of those and he gave one to Cody.

Amazing. As we were driving home, Cody says he feels that having cancer has been a blessing. He would have never have met these people and would not be friends with them. It is hard to put it into words but he was def having a moment. Beautiful night...thanks all!

December 21, 2010

Tuesday-Lots of changes with the visit to Sloan and the best is we do not have to go next week! We are working toward every other week. Life is good. His steroid got switched and it is being tapered. I guess once we got those great biopsy results, it is ok to start the tapering. He is thrilled. We are cutting back on his feeds too so that he will eat more. His skin kinda flaired up but it is just eczema so we are working on it.

A good day for all....

December 20, 2010

Monday-Well here starts a hectic week but a fun one. Cody was up and cooked and showered. He had 2 tutors today. He did well. He even got presents!! We were both tired last night and went to bed early. Cody is going to Sloan tomorrow with his dad.

Good night

December 19, 2010

Sunday-Well, I was really hoping for a snow day but looks like it has passed us by this time. Oh well. It was a busy day. I made lots of cookies for the the cookie exchange tomorrow. I even took a nap today. Cody was pretty lazy too. He slept till around 1. Guess he needed it.

We hung around and enjoyed our Sunday. Here's to a short holiday week!!

December 18, 2010

Saturday-Lots of running around hopefully shopping is finished. We had a great day and went to the Islanders game tonight. It was a good game, the Isles lost in a shootout which was so upsetting. We had fun though...night all

December 17, 2010

Friday-TGIF!! GREAT DAY! Biopsies back and cancer free, still and the skin biopsies revealed that it is not GVH but more of eczema. I was right all along. I was here at lunch when I told Cody and he got tears in his eyes. He was so happy. I cannot imagine how he feels. It is a great feeling.

Cody spent most of the day home alone. His gfriend has been sick so she is not coming near him. He did well and I checked him at lunch and then after work. I came to check him again and went to my work party for a little while. It was nice to relax with everyone. Then I took Cody to eat. All was good and things are looking up. Spoke to Casey too and he is possibly getting deployed earlier so he might be here in February. I hate the fact that is getting deployed but am glad we will get to see him...keep him in your prayers too...night all

December 16, 2010

Thursday- Better day for Cody. After I got home from work, we went to the mall for some shopping and then went to HSE's winter concert. It was a shorter concert but good. It was kinda sad to know that Cody was not in it and he felt that too. Early night and sweet dreams...

December 15, 2010

Wednesday-Phew...I am tired. It was such a long day yesterday and we are both going to bed early!! Cody is sore today but did well. Now we wait for the results of the biopsies...

December 14, 2010

Tuesday-Cody had a tough night of sleeping. Last night before he went to sleep, we talked about this and the 2 yr since his diagnosis. He was upset and said he was thinking about those that did not make it and how he did. He then said, "we are doing this, we are doing this, mom". Yes, we are! Today he was up at 5 and left with his dad around 10:30 and got his procedures and an xray of his foot. He did well and got home late and basically went to bed. He is a trooper. He got a biopsy on his arm too. We will hear later this week about any results. Long day and glad it is over. Good night all.

Decmeber 13, 2010

Monday-Good day back. We found out that Cody's toe that was infecting grew bacteria so it was treated with antibiotics. He feels good and is eating. Today he got himself up, showered and cooked his lunch. He needs to start doing that and to be independent. I am proud of him. Tomorrow is his biopsy for his bone marrow and skin. He is going with his dad and he will be fine.

It is 2 years today that we got this horrible diagnosis. It is actually tomorrow but this was the day, Monday, 2 yrs ago that we started at Schneider's with all this. Hard to believe.

December 12, 2010

Sunday-Terrible weather today for sure! We stayed in all day and enjoyed a day of nothing! Cody feels really good so looks like I am on track for tomorrow. All is good in the fort.

December 11, 2010

Saturday-We took it easy today and Cody ate three meals. We did not run his feeds last night but instead did pedialyte. He was hungry. And everything stayed down so all looking good. We went to the hockey game and we were in the 2nd row! Great seats!! Cody's friend and his dad sat with us. We gave our tix to one of his teachers so they came and sat with us too. The arena was not filled with this losing Islander track. It was a great game but sad they lost.

December 10, 2010

Friday- We got home around 5 today. So exhausted. Got situated here at home and went to bed. No more episodes for Cody, thank goodness. Happy weekend.

December 9, 2010

Thursday-another good day that did not end so well. Cody met with his tutor briefly and felt fine. We went to eat at Friday's and then came home to watch the hockey game. He was feeling nauseous and then ended up vomiting. This was just the start of it. He vomited again with a watery stool around 12. I called the drs and they had me give him a stress dose of steroids at home. It should have done the trick but then he vomited and had diarrhea again and he told me that we needed to come in. This was around 2 am. He was crying and it broke my heart. He kept saying he did not want me to miss work. His dad was here and could have brought him but after it being already 2ish and then how could I focus at work and be worrying about him? It was a no brainer for me. Hey, I got a paycheck and 9 good days. This is just a little setback. We got to Sloan and stayed in Urgent Care till 8 am and I managed to crawl into the tiny bed, a bit bigger than a stretcher but got little sleep. We came up to the day hospital for evaluation. We needed to stay to get some IV fluids and another stress dose of steroids. It is 12 noon now and we are still here but should be able to go home soon.

We got home at 5ish. We ran to get meds and pedialyte and I need to catch up on my sleep now. They are going to do a skin biopsy on Tuesday to check the rashes and skin irritations he keeps getting. It could be GVHD and maybe we need to treat it differently. They will also do a bone marrow biopsy since he is due. I will not be going with him for this one, I will be working. He says he is ok going with his dad. He is a strong boy. I am hoping for a good night here tonight. Night all...

December 8, 2010

Wednesday-Pretty good day. Cody had his tutor and then we went to a board meeting for a foundation that has been helping us. It is called "Contractors For Kids". Cody and I want to give back and we want to help. We sat with board members and guests and there are a few things we want to get involved with. We will do our best. We have some ideas. It was good going there and seeing everyone.

December 7, 2010

Tuesday-Long day for Cody. He was at Sloan with his dad and then they stayed in the city for lunch and then he got home around 6. Changes in skin meds and he is having some dry skin issues. I personally think he inherited sensitive skin from his cord blood. It is not GVHD but Cody worries like crazy that it is. We will start new creams tonight. He is on another antibiotic for an infected finger and a urinary tract infection. That should kick both rather quickly.

Pretty good day for me too...oxoxox

December 6, 2010

Monday...week 2 for me back at work. All went well and it was like the kids did not know any other teacher...it was a great day. We went to the award ceremony for suffolk county and Cody got his courage award from Army Captain Fyfe. It was a really special award and night. I am so proud of him and he had a good time sitting with his friends. It was a good night here for us. Night all. Pics to follow.....he is off to Sloan tomorrow with his dad. I miss that place, really I do.

December 5, 2010

Sunday-All day at the race track ended with Cody getting 2nd place with his car...we even came home in the middle of the day and both took a snooze...beautiful day...

December 4, 2010

Saturday-I was up nice and early today. I was trying to catch up on my Thursday shows and I ended up going back to sleep on the couch. I slept till 11:30. We ran around did some shopping. Cody got a new jacket. I dropped him home and ran out again. We just needed a day to take it easy. Brittany's, Cody's girlfriend came over again and we just hung out. Nice and quiet again and we wanted it that way since tomorrow is the big car race.

Decmeber 3, 2010

Friday-TGIF! Thank goodness this week is over. Cody and I both did well for our first week apart. We are just hanging home tonight. Cody's girlfriend came over and I did some shopping. Looking forward to getting to bed early.

December 2, 2010

Thursday-The day started off perfectly. My family at SH surprised me with a breakfast. It was full of yummy treats and a beautiful sign! I was surprised and could not hold back the tears. It is so good to be back and I did miss them. Today I had the class on my own and it was fine. We did not cover everything but we did it.

Cody did well too. I did not need to come home as his dad was here (surprise) and Cody went to eat with his girl again. And now I am pooped and cozy and he is napping BUT, we have to get ready for the Islander/Ranger game tonight...Good time with Cody and thank goodness tomorrow is Friday!! Now let's just hope they win.

December 1, 2010

Wednesday-Morning was good until Cody called and said he vomited. I wish I could post his message here. He was so cute. He felt fine and dealt with it and it passed and he felt fine.

I went home at lunch to clean up and he showered and it was all taken care of. He did well and when I got home his tutor was here. He even went out to lunch with his g/friend. My day was good too, just tired and trying to catch up. It is good to be back and tomorrow I get the room back to myself.

November 30. 2010

Tuesday- A VERY long day...Cody was up and out of the out at 7:30 this morning. His dad picked him up and took him to Sloan for his treatments and check up. All went well. I had a good day too and started some actual teaching which felt weird the first time, for sure! But I will be ok once I am on my own which is tomorrow.

Cody got home and changed into his jeans and we headed to the high school for a party with the soccer team and then for the long awards ceremony. The party/dinner was great with the coach giving out some silly awards. It was cute. Then into the auditorium for the awards ceremony. I was surprised. Cody was called up with all the athletes for the athletic scholars pins for a high grade point average. The coaches went up and again , I was surprised that Cody got the coaches award with Carcone saying, "he is my inspiration and I know he is yours". That was awesome. He then announced that Cody will be getting the Suffolk County Courage Award from a military guy. Here is the info about it. Capt. Fyfe will be there to give out the award. Cody sat with his coach and he told him about it. Cody immediately got in the car and called Casey to tell him about it. This dinner is on Monday. It will be nice. It was a great night but I am beat!!

The Suffolk County Soccer Coaches Association recently named their "Courage" Awards

after Cpt. Alex Fyfe. Alex Fyfe graduated from Rocky Point High School and the U.S.
Military Academy at West Point. While in High School Alex played three varsity season
collected All-County honors in his junior and senior years. He received All-State honors in
1995. His efforts to bring peace in Iraq through soccer equipment and supplies was a
complete success. Soccer people from Suffolk County and around the world sent soccer
supplies that Alex handed out to the children of northern Iraq.

November 29, 2010

Monday and I am back at work! I had a hard time falling asleep and Cody did too. I think he was anxious for me and he was def excited. I left him this morning after I woke him for his pills and he said "goodbye, my little teacher". So sweet!! Everything went off without a hitch but we did get his feeding tube clogged for a few. No sweat, we unclogged. I have had a song for Casey and I finally found one for Cody. It is "When You Believe" by Mariah Carey. This is what I listened to on the way to work and of course, I lost it. They were happy tears and I just pray that it stays this way. Everyone at work was great and welcomed me with lots of hugs. My principal made a special announcement and I saw a lot of the older kids I taught. It was weird because a big group of them are in 5th grade, some I had in kindergarten and some in 2nd grade. One boy said he was was so glad I was back and that brought me to tears at the end of the day. The class is cute, the sub did a GREAT job and looks like I will have a lot of extra goodies and ideas from her too. It will be really fun working with my friend Mary Picarello and my other friend Corinne Short that has been in 2nd grade for a while now. Should be a good year.

Cody did well. He had 2 tutors today and did not really get to be alone. Tomorrow he goes to Sloan with his dad for the first time. Should be interesting.

I am pooped and am trying to get things done so I can go to bed soon...nite all.

November 28, 2010

Sunday-Well, since I fell asleep last night, I got up to watch the rest of my movie. It was "Eat, Pray, Love". I really like Julia Roberts so I wanted to see it. It was cute and makes ya think about life. We took a stroll around the mall and tried to do some shopping. We ended up taking a ride to Woodbury to get a present. Then we settled back at home and chilled. It was a nice day. I am excited about tomorrow but nervous. Tonight before Cody went to sleep he said 'Good night my teacher". So adorable. I know he is ready for me to go back too...Sweet boy!

November 27, 2010

Saturday-Well I had to finish up some shopping today so I ran out early. Then Cody wanted to take a ride out to Sayville and Oakdale to see the areas around Dowling College. It was a nice day so we just took a ride. Then we went and rented movies. It was a nice day. I have lots to do to get ready for work.

November 26, 2010

Friday-Well, the Islanders ended their 14 game losing streak by beating the NJ Devils today. It was a great game too. I did a little shopping and took Cody to the grocery store so he could get some things to eat. He seems excited to be home alone. We both need this.

I am trying to get prepared for work and find something to wear. Sitting around in the hospitals for 2 years and not exercising did not help this body. UGH. So going to do a little shopping tomorrow.

Have a good night everyone...

November 25, 2010

Happy Thanksgiving to all of you. We have a lot to be thankful for. I got up early and made the turkey for Cody and I. We are having a quiet day but we are thankful. Last year, we were in the hospital for Thanksgiving. Maybe go to a movie later but not sure.

Casey just called from his cruise. SO happy to hear from he and Nicole. They are having a good time, as you can imagine.

We did not go to a movie but watched one here instead. It was yucky out and just nice to stay home. We were glad to be home this year, Hope everyone had a nice day.

November 24, 2010

Wednesday-I got up nice and early and went to SH to meet my class. The kids are cute and had great questions. I was going to read a book but I decided to just talk with them. They shared a few things about themselves and then I talked a little. They asked about Cody and I was happt to answer. I miss my friends there and it will be so nice to get back in the swing of things. I am looking forward to it.

This afternoon we got a pie delivery from the Glassers..so yummy! Thanks!

Great day and fun at the hockey game. They almost won in over time.

We went with Cody's girlfriend, her sister and boyfriend. Kinda like a double day but with mom.

November 23, 2010

Tuesday-We had our visit at Sloan and we got great news. Cody is over the 50 Kilo mark which made everyone happy. That is 110 pounds! His pre transplant weight was 52 kilos so he is doing well! His skin is a little flared and we think it is either allergies or GVH of the skin. We have some new creams to try and I personally, think it is dry skin. We have to keep an eye on it.

Yesterday and Sunday I baked my banana/chocolate chip bread and Cody had fun giving it out to his NP's and dr's. I will miss seeing them every week but I know I can go at anytime for the visits. Cody will go with his dad next Tuesday and I will go probably over the vacation.

We went to meet the kidney specialist at New York Hospital too today. He is concerned about the protein in Cody's urine. Cody is on a medication for blood pressure which can cause this but he needs the blood pressure medicine. We have to do a few more urine studies and see how it goes. I do not think it is anything serious but we have to look into it. I took some papers over to the kidney dr with us. I saw the one that our dr at Sloan wrote discussing Cody. She wrote: "Despite the hell he has been through (meaning Cody) including HHV6 encepalitis (brain swelling) from which he has full recovery, he is a wonderful kid with a great sense of humor."

Thanks, Dr. K.

We also got a call from Dowling College saying because of Cody's wonderful GPA, he does not have to take the SAT for this school. It is Cody's first choice right now so he was thrilled.

Another great call was from the soccer coach. He nominated Cody for a special 'courage award' given by a military captain and Cody got it. We have a dinner to go to and Cody will receive that. He will be surprised. There will be over 1000 people there. So exciting. That happens in 2 weeks. So happy for him.

Pretty good day and looking forward to meeting my class tomorrow!!!

November 22, 2010

Monday-Well, here is the last Monday before I go back to work. Yes, I am anxious. I know it will be fine. We had lots to do today and the day flew by. Cody feels great and is eating more. I am happy about that for sure. Let's hope this week is a good one.

November 21, 2010

Sunday-Well today, Casey and Nicole left for their cruise! I know they are having a blast. I am so envious. I know I will go again, just waiting. Matter of fact, I asked my dad and stepmom to go with me next year. I would love that!

Cody felt pretty good today and we did not do much. Well, I did. I baked for my hospital friends and raked some leaves. So exhausted. Cody took a ride to the race track and hung there for a little while. Then he went to eat and we are chilling at home tonight. I am really pooped.

Hope the weekend was good for everyone...oxoxoxo

November 20, 2010

Saturday- A pretty good day. Cody worked on some homework and studied with a friend for his Global exam. He is working hard and I am praying that he gets a passing score.

We hung around and my friend Jean came to the game with us. We picked up Cody's friend, Matt Russo as they gave us extra tickets. Cody sat with Matt for the game and I sat with Jean. It was fun but the Islanders lost....again.

It was a nice day..

November 19, 2010

Friday-For some reason, Cody did not sleep too well last night. He was up at like 4. I ended up giving him Benadryl to help him sleep. Not sure what that was all about.

We were up early and went to take a tour of Farmingdale College here on 110. It is huge and Cody did not like the impersonal feel you get there. It was a lot of walking and I just kept thinking of him walking around in bad weather or something. Lots of walking. I did not picture him there. We will see how it goes.

Hanging home tonight and relaxing....

November 18, 2010

Thursday-Not much going on today. Cody had his tutor and we did some homework and filled out a college application. He is really happy to be doing this. I am happy for him and I admire his drive!

November 17, 2010

Wednesday-Very busy day. We took a ride out to Dowling College and went for a tour. It is a beautiful campus and nice and small. Cody was really excited and liked it there...a lot!

I think he would fit in there for sure.

We made it home in time for his tutor and then about halfway through he felt nauseous. We cut the session early and he took a nap. I ran to pick up his friend Matt. He has session hockey tix too so we gave him a ride. I tried to find someone for the extra seat but could not give it away. They are on a losing streak so I guess that is why. After he slept and rested, he felt better so we went to the game.

It was sad to see them lose again but we had a good time....

November 16, 2010

Tuesday-We both slept like rocks last night. I slept right through his feeding pump beating and he did not hear it right next to his head. We will have to play catch up today. We were up and ready early and went up to the school to talk to his guidance counselor about college. He is feeling like we are behind so he wanted to go. We are going to take a look at a few local ones this week and start with the applications It is so good that he is driven. He gave a recommendation form to his soccer coach to get a letter and the counselor is handing out a few more.

We did some homework today and he ate pretty well, thank goodness. I am so glad his appetite is back.

November 15, 2010

Monday-Long day but we are home. Everything went well. Cody got his mediport. They had a hard time this morning getting an IV in so I know we made the right choice. We got there nice and early and we went to the 9th floor to see his fav night nurse. He loves Erin! She is this dark haired, light eyes, Irish nurse. She spent a lot of nights with him.

The port procedure was about 12 today but by the time we got back up to the 9th floor, it was around 4. Cody nibbled on some chips and then he had to get an infusion and we left around 6 pm. It was a long day. Hope everyone had a great Monday...oxoxoxox

November 14, 2010

Sunday-Long day at Long Island Raceway but fun. I know Cody had a good time. He stayed the whole day and I ran around and then did some work in the car. He loves hanging there. Early night for us since we have to leave here at 6 for the city so he can get his mediport.

For the record, for the past few nights, I have been sleeping up in my room. We got baby monitors so I can hear him and it is so nice to have some normalcy here for bed. Baby steps for all of us...Hope everyone enjoyed the nice weather this weekend!!!

November 13, 2010

Saturday-Today we went to HSE's boys volleyball county championship game and they won! It was great. We drive 3 girls there. We ran to the hobby store and Cody spent a gift card. He is eating a bit again so we went to eat. We hung out here at home for the evening until he went to watch a movie with his dad. It was a good day.

November 12, 2010

Friday-Today was a great day. I went to talk with my principal about my return. We had a nice chat and I am happy to be returning. I hung around and saw my friends but did not go into the class. I am going to set up a time to go meet the kids in a week or so. Should be fun.

Cody actually had his gfriend pick him up and they went to another girl's house to watch a movie. He did well. Then we came home and he went to hang with his dad. I went to get a bite to eat with Jean and actually had a glass of wine!! So excited to have some kind of normalcy.

All in all, a good day!

November 11, 2010

Thursday-Happy Veteran's Day...so today started out funny. I texted Casey and said "So proud of you, my boy". The funny boy he is writes back, 'thank you my mom'. So funny. Well the MRI came back and we found out that Cody has a stress fracture in his ankle. He needed to be fitted for an air cast or boot. So I took him to the place I took Casey and we are all set. We hung out and his science teacher came and he took a test then Brittany came over. Cody ate a little more today so I think he is clearing the fungus. He cannot do the solution that gave him to rinse with, it is so thick so he tired Listerine and he likes it. So maybe that is working.

Hope everyone enjoyed their day off and thanks to all those that are fighting for us, especially my favorite soldier, Casey.

November 10, 2010

Wednesday-Good day today and Cody ended up eating a little. He decided to try Listerine for his mouth and it helped.

We met with his guidance counselor and the asst principal we know at his school to discuss his return. He is anxious so he wanted to do this. It was a great meeting with Cody feeling so happy and said he could not believe he would say this but he is so glad to be going back to school. His day is Jan 31, for the 3rd quarter. He is really thrilled. He was so cute and did not want to say "what if I need my mom?" so instead he asked "what if I need her?" I know he is nervous. We will do a walk through so he can see where he can go if he needs help. He can just walk out. He needed to hear this for himself. He will go back at 11 for two classes and then he can stay for lunch to socialize or just leave. It will all work out and he is excited.

He worked hard with his tutor then we went to the county playoff game for volleyball. So exciting and HHH won!!

Waiting to hear on MRI results for his ankle.

November 9, 2010

Tuesday-A very long day at Sloan today but made lots of progress. I should have known the not eating was attributed to something in his mouth. He has that thrush or fungus again, that babies get. He is on antibiotics and that contributes to it. So that makes sense. All he was drinking was sprite so that I have to be aware of that next time. He got some stuff to swish but really makes him nauseous. We will see.

His pic line was oozing last night and he was all worked up. He has the skin rash again so I really wanted to see about taking this out. After a long and stressful discussion, the pic line was pulled. He is not longer doing the daily infusion at home. We will see how it goes. He is set for a mediport on Monday. We were in discussion about whether to get the port or not. The port is under the skin and allows his freedom without being accessed except for when we need it to be like at the hospital. There is a lower risk of it getting infected since it is not accessed and under the skin so lower risk of bacteria. We thought long and hard about not even getting this as it is surgery but to worry about getting IV's in every time we go to the hospital would add more stress and anxiety. He is very anxious lately. We did not get to speak to the psychiatrist as she was away today. We are giving him a little more of a medication for anxiety. This could also be heightened because of me returning to work. He says no, but it could be.

His foot is still bothering him so an MRI was ordered and we got it for today at 5:30. That meant a huge break. He was upset because he could not get to Best Buy to get the new video game he pre-odered. So calls were made and we were supposed to be able to pick it up in the city at Best Buy. We hopped in a cab and were pleasantly disappointed when after we were told we could get it there, we could not. More stress and disappointment for Cody. So I grabbed a quick slice and we headed back down to Sloan. Finally I got him to calm down and take a nap while we waited for the MRI.

We did not get home till almost 8 but we did get the video. He played till around 10 and we called it a night...Phew-LONG Day...

November 8,2010

Monday-today was a busy day but frustrating with Cody eating very few bites. I know we will get to the bottom of it at our visit tomorrow. He had 2 tutors, then we went to the volleyball playoff game again. He gets time with his friends so I do my best to make it happen.

In three weeks from today, I will be returning to work. Crazy. I am nervous and anxious but it will be great to be back with everyone.

Hope your Monday was a good one...

November 7, 2010

Sunday-Well, today did not start out too well. Cody got up and was getting ready to go the race track for the first annual BBQ Race. He felt totally fine but ended up vomiting. Thank goodness it was just that and not sure where it came from. He spent the entire day at the track and had a good time. The car ended up breaking in the end but he enjoyed hanging out. I ran a few errands and forced myself to stay away as much as I could.

It was a long day and we are both tired....sweet dreams

November 6, 2010

Saturday-Great day. I ran around and Cody slept. He got up and we set up for his friend Sammy to come tutor him for the regents exam. Brittany brought her over and they did some studying. Thank God for her.

Then we waited around before we had to go get ready for the game. I had already been emailing Ann, our Islander girl about getting Cody down to see his new fav player, Josh Bailey. After Richard left, Cody decided to pick a new player and Josh was it. Cody had a tough week and has been feeling down about this whole eating thing so I thought this would cheer him up and it did, of course. I kept it a secret through the whole game. We sat with the Russo's, Matt is his friend from school. So right after the game I asked him if he was tired, too tired to maybe go see the players. That brought a HUGE smile to his face. So we said our goodbyes and off we went to see the players. A few came out before Josh did. Josh said hello and shook my hand too, wearing Cody's bracelet mind you, and then took Cody to the locker room. Cody just about jumped over the railing. It was so cute to see him perk up. He spent some time in the locker and saw the newly renovated features and saw most of the players and met the new ones. The new guys want his bracelets too now. Cody comes out beaming and with an autographed stick from Josh. They posed for a quick pic and Cody could not thank Ann enough!! It was a great ending to the night.

November 5, 2010

Friday-TGIF..I tried to keep Cody home most of the day today to rest his ankle. He had a good day and tried eating tonight. He ate a little so I think he felt better. He just seems down lately. I was hoping Casey could get here but doesn't look like that is going to happen. We went to the boys' varsity volleyball playoff game. It was cool seeing the boys play. Cody sat in the middle of the bleachers with all his friends. I tried to give him time. Brittany did not come. She is preparing for her German dance tomorrow. She is a good girl. We ran a few errands, trying to get things organized here. A parent from school is going to help us out when I go back to work. She is really nice and not sure how much we need her but it will be good to have her. Cody seemed ok with it too.

Quiet night and hoping it stays that way. Have a good weekend.

November 4, 2010

Thursday-pretty yucky day here today. I went to my knee dr and found out that my 'good' knee is now my bad knee. The knee with the replacement is ok but will need another replacement in 5 or so years. Not good at all.

Cody was not feeling too well today. He had more diarrhea than usual. He had no appetite and it is really bothering him.

To top it off, we had to go to the shiva call for his friend that passed away from Schneider's hospital. He was 18 and had a brain tumor. It was tough and got worse when we went to see the boy's room. Very tough. Then he did not eat after he suggested we go to the place. It is affecting him mentally now too. While at the call, he got a huge email from Richard his hockey player. He was thrilled!! It was one of the nicest emails he ever got too. I hope they reconnect again soon. He is a special man.

Tough day so going to bed now too...good night all.

November 3, 2010

Wednesday-Long day at Sloan today for IVIG and pentamadine. We are cutting down of the steroids and found out that I was actually coming down too quickly with it. I miscalculated the dose. It was all ok and he is doing fine. He is very worried about any kind of rash for fear it is GVHD of the skin which it is not. He is worried about not wanting to eat too much lately and he lost a half of kilo. He just seems a little stressed lately.

Tonight I talked to Casey and he has some time off, actually more than he thought so I am trying to get him here. It would be good to see him since we will not see him over the holidays. Maybe he and Nicole would drive here. It would be a huge pick me up for Cody.

Pretty good day overall and a good dr visit.

November 2, 2010

Tuesday-we did not go to Sloan today. We switched it so we could go to the playoff game for the boys soccer team. It was a tough game and they lost. The boys were so upset with some of them actually crying. It brought me to tears too. Very sad.

We went to Friday's to eat with Brittany after the game and we did not really eat that much. It was an ok day.

November 1, 2010

Monday-Happy November. Today is my friend, Mary Picarello's bday. She decorated my house with a HUGE 50 for my birthday and I am not yet 50. So it was my turn. Cody slept till 12 and then had his science class and we took off to SH to decorate her car. We had so much fun and did a great job. We got her. Guess I am supposed to be afraid of my bday next year. Oh well.

The rest of the day we just chilled.

October 31, 2010

Sunday and Happy Halloween! Today we started off remembering Tyler SooHoo for his birthday in heaven. We joined the family at the cemetery and it made for a very warm start to the day. Then we went to eat and came home to wait for the kids to come. Cody dressed up in his scary scarecrow costume and scared the little tykes. We did not get many. Bobby his drum teacher came by and said there were a lot of kids at his parents' house so we took a ride over there to scare a few. It was fun but disappointed as to not many kids at all. Where did all the fun go?

Happy Halloween!

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!!

September 30, 2010

Thursday- we waited all day for the rain to come. Guess it is coming tonight.

We interviewed the first person for the companion we are looking for for when I go back to work. I do not think she is a good fit but it was good. I def feel like I can go back to work.

Then Cody met with his tutor for English. He did well.

He went to the his girlfriend's soccer game with his dad this time. When he got home, he broke down. He is so worried about the rash on his arm. Rejection can be in the skin and he is so afraid. It is all treatable. I feel so bad when he gets so upset but in a way, I am glad he does let it out.

We got his suit for Saturday and he looks handsome!!

Spetember 29, 2010

Wednesday-Got to see my teachers for lunch today. Love doing that. It was good.

We ran around trying to get stuff for homecoming. Then we came home in time for his tutor but he could not come due to a cold. So he talked to him on the phone instead. Sounds like a good class. Then we had the boys varsity team at 7 pm. It was a great game and it was be recorded for TV. They won 5-0 which was awesome!! So glad Cody is part of the team.

September 28, 2010

Tuesday-Today started out ok despite the rain. Cody had his bloodwork done and counts were really good. We discussed his dry eyes with the dr and she thinks it could possibly be another form of rejection which affects the skin. There are all ways to treat it so no reason to be alarmed. It really upset Cody. He is so worried. We also talked about his surgery and are hoping he will not need it if we can get him healed. There was a mix up with one of the meds. He was supposed to be off of it but I kept him. It was overlooked. That did not make me feel too great but it will be ok. Then we went for the pulmonary test and he went in alone. About 30 minutes into it, the tech came out and said he wanted me. Well, he was thirsty but then felt so nauseous and winded and tired. He was not able to finish the test. He was not himself. So we got out of there and did the echo and EKG and he was much better. He also did not eat this morning and that is a problem. I have to work hard on getting him to eat.

We got home around 2 and both took a nap. We woke up in time to go to the girls soccer game. It was so yucky out but we went.

Good night all...

September 27, 2010

Monday-Rainy Monday and a lazy one. We stayed home all day and Cody had his tutor for Spanish today. He did well. I made some appts and phone calls and cleaned out a closet. Trying to get things done here while I can. Things have been neglected for awhile. I need to do a painting.

Tomorrow we have lots of tests. He is getting all the same tests he got at the beginning of the transplant so now we will see how he is after the transplant. All points to a good sign...good news.

September 26, 2010

Sunday-Lazy and gloomy day. Cody woke up with a bloody nose. I know it scared him a little, as it has been a long time since he had one. I am hoping it is just the change in the air. It stopped and he was fine but I know he was worried.

We ran around all day and did errands. We ordered his suit for homecoming, I am renting it. So he is all set for that. We have his Woody costume for the skit. Thank goodness for Nicole, she is making him a little vest. That will make the costume. Hope he can do his skit. That is all on Friday.

Hope everyone had a nice weekend despite the yucky weather today.

September 25, 2010

Saturday-Off to the boys' soccer game this morning. It was unbelievably hot, like 90!! The boys were very hot. Tough playing conditions. Thank goodness they won! Then home to change and off to a party for a good friend. Mary Picarello's husband graduated from law school. He took the BAR exam and will hear about that in November. He went back to school and did this while keeping a job and with a young adorable baby at home. It was a nice party. Cody ate a little and enjoyed watching all the kids. Mary and Brian and their families are great and always welcome us with open arms. It was a fun afternoon.

We are still nursing his sore back but he is dealing with it.

September 24, 2010

Friday- Today Cody's back is still bothering him. We did go to the girls' soccer game and it was a really nice day out. That is why I take him. It is nice when the weather cooperates.

We hung around for the evening and decided not to go to the race track. He was good with that.

Hope everyone has a nice weekend.

September 23, 2010

Thursday-Very busy day but we did it. My day started early but Cody's did not start till around 1. We went over to HSE so he could take a picture with his princess for homecoming. It was the first time Cody was back in the school in almost 2 years. He knew where his locker was and wanted to go to it and open it. Of course it was empty. We sat in the student center and a few friends popped by to say hello. Once all the kids from homecoming got there, he walked outside for a photo. He felt kinda sad to be there but I think it was good for him. I am so happy he is doing this. The kids have been amazing. Then we came home and he met with his english tutor. She is very sweet and he likes her. Then we left for the boys soccer game. Thank goodness it was a nice day out too. At one point, there was a coach of jv standing on the field with last year's tshirt on with CB on the back. Then I look and the varsity coach is wearing the one with CB on the sleeve. It is really touching how much support we have gotten and how good everyone is to Cody. I can't explain that feeling of sitting there and seeing that but I do get emotional.

We left right away and came home and changed and went to the Islander scrimmage. Cody was excited to see Ann. We were the only ones in the stands and some of the players said hi to Cody which thrilled him. We did not get to hang with any or really talk to them but I am pretty sure they knew we were there. We went to Friday's with Ann after the scrimmage.

It feels good to be writing about Cody's happenings and not about his health so much. He is in pain as his back is bothering him quite a bit. I feel bad. He does well sitting but walking is tough. We are both exhausted and looking forward to just chilling tomorrow...night all and thanks for reading...

September 22, 2010

Wednesday-Today we went to the girls varsity soccer game. They have Cody's initials on their sleeves so I wanted to go and support the team. It was a great game with them winning.

Cody's back is hurting again so he is moving kinda slow. He ate at Subway and did pretty well. It was a good day and a pretty good night...looking forward to tomorrow.

Septmber 21, 2010

Tuesday-Today Cody had a procedure under anesthesia to look at the fistulas. They are healing but they may need surgery to help them along. We will talk to our dr next week. He did well with it and the best part was that we wrote "Be Gentle" on his butt. It was great! It is always hard being there and seeing all the sick children. I see moms holding their kids on their shoulders and the sick child is just crying softly. I see big kids needing help walking and babies crying in their strollers. I see the ones that look so healthy too. It is really sad and hard to be there. I talked to other parents today and it is tough. We talked about his bone density test where there is significant bone loss which we know. They will wait a little while and begin some treatment but it comes with side effects too. We finished up everything and left and made it home in time for the soccer game. He was thrilled. He sat with the players. We saw the girls team and they have CB on their shirts. So touching, once again.

We are excited about homecoming and the plans are falling into place. It will be fun.

Have a good night everyone....

September 20, 2010

Monday-Good day today. We hung out and then Cody had his first class today here at home. It is his first class for his senior year. I tried to take a picture but he would not let me. He did well and we have the same teacher and he really likes her. Then we went to look for a suit for his homecoming court. He was nominated and he is pretty excited. Tonight we found out who his escort is and he seems pleased with that too. Too bad it can't be his Brittany but I hope she understands. She has not been around as she has been sick. We ran to the mall and then to the outlets. He is looking for a watch and he is so persistent. Geez, I wonder where he gets that from, Dad...I know your answer.

Good day and a busy one tomorrow, off to Sloan for the exam of his bottom under anesthesia.

Wish us luck.

September 19, 2010

Sunday-Another beautiful day here on Long Island. We went to an Italian fair at Hofstra today. It was a bit crowded but interesting to say the least. Then we ate at Friday's, well he did. Then we walked around the mall. I am trying to get him out more and walking. I think he enjoyed himself. He can be impulsive at times so it is hard to take him shopping. He always finds something to buy. I got him to hold off but in a lot of ways, he is just like me. (I know, Dad!)

Hope everyone enjoyed their day and weekend....

September 18, 2010

Saturday-It was a boring day according to Cody. We did not have any plans and took a ride and basically did nothing. It was nice for me not to have anything. He feels good and is improving so that is all that matters to me...keep up the awesome job, Cody.

September 17, 2010

Friday-Today Cody had a very long MRI of his abdomen and pelvis. They are looking for the internal fisulas and hoping they healed or are healing. It was a long MRI. Thank goodness they allow me to be in there with him. I actually nodded out and I know Cody slept. Thank goodness for valium.

The next bit of information is extremely confidential. Cody was nominated for homecoming court. There is a lot that goes along with it and we are hoping this happens.

This evening we are both tired. It is only 6 pm and we could both crash. Long day and hoping everyone enjoys their weekend.

September 16, 2010

Thursday-Not much to report today. That is a good thing. We hung around most of the day, of course, went to eat at Subway and then to the boys' soccer game. It was in Lindenhurst so we needed to take the drive. It was threatening to rain but it held off until after the game. It was a horrendous storm too. Thank goodness we were spared of any damage here. The boys won and Cody sat on the sidelines. I had to ask the coaches to tell the boys to protect Cody if the ball came near. He would be protected, I know. We came home and had a nice quiet night here and just chilled. Early morning at Sloan for the MRI tomorrow. Night all.

September 15, 2010

Wednesday-What a beautiful fall day. Nice and cool and so sunny. Cody slept in and then we waited for his spanish teacher to come. It was his teacher from last year and she is his tutor this year too. She went to Spain and Portugal this summer and got him a Portugal Ronaldo jersey! He was thrilled and put it on right on the spot. Of course he had to wear it to the girls' game so his fav GERMAN gfriend could see it! So cute. He ate pretty well today too. After the game he tried Chipolte but did not really want it. He came home and ate his normal snacks here. It was a nice day. Tomorrow we are going to take a tour of Winthrop hospital and meet the doctor there.

September 14, 2010

Tuesday-We got up really early and headed to Sloan. We parked at the hospital and then had to take a cab down to 53rd for the bone density test. It was totally invasive and Cody did fine. We will get the results at some point. Not too worried as I know he has bone loss. Not sure what exactly they will do but we will wait to hear. Then we took a cab and headed back to Sloan. We had a good visit. I had thought we were going to do the MRI for his fistulas but we are doing that Friday. Also they are putting him out Friday to look at the fistulas internally. Hope all goes well with that. He is fine about it, I worry, of course.

Then we went to Subway and he ate really well! We came home and relaxed for a little, well, he did then off to the soccer team. He is so proud and he wears his jersey and sat on the bench. It is so great for him to just hang out with the boys. It brings me to tears to know he is not playing but he is happy for now.

His dad showed up so after the game, he went to Friday's to eat with him. And he ate again! He was off the feeds for over 12 hours so he was hungry! Good for him!

It was a great day.

September 13, 2010

Monday-Great day. I got to the gym and did some things here. Cody got up and Bobby his drum teacher came by to tune up his drums so they would be good for his 'band' practice on Thursday. He is so proud of that little band that is forming. Brittany picked him up and they went to Dunkin Donuts before her game today. He came back and then we hung around and went to her game. We had to go early because he was meeting the boys team. Cody walked over and I kinda hung back. I try to let him have his time. The guys huddled around and they clapped. Cody was then given a jersey with his number 19!! He came back to me and said he was on the roster. It is funny how making the team was such a big deal, now, making the roster is. Cody is so proud to be included. We hope we get home in time tomorrow to make it to the game. We watched his girlfriend's game today too. She is number 19. So cute. Some of the guys came and hung with him after practice. So happy for him. He is feeling so good, he looks so good and that just makes me smile!!! Hoping, hoping, hoping this continues.....

September 12, 2010

Sunday- Gloomy day here. Not much new in the health status of Cody which is a beautiful thing. He slept and then he went to a friend's house. They are trying to put together a band. It was the first time he went to someone's house. He was there for 2 hours and he did well. I am so proud of him. He looked so happy sitting there and hanging with teenagers. He needs this more than anything right now. So the plan is for them to come here on Thursday and jam a little. His drum teacher is coming tomorrow and will tune up the drums and play a little. So happy.

Hope everyone enjoyed their day!

September 11, 2010

Saturday- September 11, 2010. It was 9 years ago that the disaster happened. It was the same clear morning. I watched the names being announced and I did shed a few tears. It is so sad and so many lives were lost. So awful. We will never forget.

We had the Contractors For Kids picnic today. It was nice to see the turnout and the donated time and goods. We brought Brittany and there was not much to do for the teenagers. We left there and took a drive to see the bike track where Cody used to race. Then we drove to Port Jeff and walked around there for a little while. We got home and he wanted to eat. It is so frustrating. He wants to eat but only wants a few things. And now the frustration from me comes from the lack of funds. I make it work for sure. So he and Brittany had a date and went to Friday's to eat. She is a sweet girl. They are both innocent and do not realize the financial stress we are under. I do what I can and will always do what I can and I will be so glad to get a paycheck again.

Saying a prayer tonight for all those families affected by 9/11. God Bless America.

September 10, 2010

Friday-Cody slept in and I let him since I know he would be up late at the race track. He hung around most of the day and went to Subway with his friend, Tom. I was able to do a little shopping and running around. We got to the track, I really did not want to be there but I did it and he compromised and left early with me. I think he was really tired too. It was a good day.

September 9, 2010

Thursday-Another beautiful day on Long Island. Perfect weather. We went to the outlets with Cody's girl and her friend. Cody got a new hat and we ate at Chipolte. It was a nice afternoon. We came home and they watched a movie and I was able to have my guy here to get a haircut. It was long overdue so I ended up getting 4 inches off which is kinda short but I will fix it later and see if I like it. I was so tempted to chop it all off but not ready just yet.

I got some sad news today. The boy, Tyler that we were next to in our first stay at Schneider's is not doing well. He has a rare brain tumor and they were able to do surgery and remove it years ago but part of it was left in the brain stem. He had that zapped with radiation. Well, he had some symptoms this summer and the tumor grew back. He is not doing well and surgery is not an option nor is radiation. The chemo drugs only have a 25% chance of working and that is very low in the big picture because this a rare tumor. He was all set to start college too. His mom and I keep in touch and she emailed me yesterday. It is so sad. He was really supportive to Cody through his time there and he is a really special guy. Please add him to your prayers and at this point, we are looking for a miracle. Thanks.

September 8, 2010

Wednesday-Looong day at Sloan. We knew it would be but seemed longer than usual. And then with the holiday traffic, ugh. It was a good visit though. Cody had an xray of his knee which showed no breaks and just the fluid. We have to make sure it does not get infected and to baby it a while until the swelling goes down. He got his infusions, all went well. We decreased a few of his meds, which is always good too. We asked for a letter for school and talked about him possibly returning sometime this year and it just might happen!!! We have to keep him healthy and hope things continue this way. Long road but it could happen. Hoping and praying! He feels good, is eating and has more energy. He met with the psychiatrist too and we talked a little but got cut off. I think he needs to work through this and he will.

He is a trooper! Love you Cody!

September 7, 2010

Today was the first day back to school for the year. It is always a fun time for me and I really missed it today. Cody especially missed it as this is his senior year. He was trying to make plans for the afternoon and it was also the first home football game. I canceled my hair appt when I saw his tears. It is hard for him and he said he just wants to be with his friends. I felt bad. I do my best but it is not enough in cases like this. He wishes he had his life back, could work, could play soccer and be with his friends. I know how he feels but on a different level. It breaks my heart. Tomorrow we have a long day at Sloan so I set up a meeting with his psychiatrist. She might be able to help him. I am also trying to find out if there is any chance he can go back for some of the time. Maybe in the spring?? I hope so.

The football game was fun. I tried to sit in the distance but still I have to keep an eye on him. I did let him leave after the game and go with Brittany and her friend to eat at Subway and then to the candy store. He seemed happy when he came home but quiet. It is really tough.

I hope all my teachers had a good first day back. Short week.

September 6, 2010

Monday-it was an absolute perfect weather day here on Long Island. I think it was 70 degrees and breezy and not a cloud in the sky. We went to the LI Ducks Baseball game. Our last game was rained out and they honored our tickets today. Cody's girlfriend came with us.

We met her parents at TGIF's for a late lunch. Cody wanted to meet them and since they have cats, he is not allowed in their house. It was nice. Her mom used to be the PTA president at my school so I knew her sorta. Then we went for ice cream and came home very full and very tired. It was a great day. Good day was had by all.

September 5, 2010

Sunday-Today we went to visit Corinne, Michael, Colin and Aidan. We had a great time and stayed till 7pm! Cody loves being out and watching the kids and just hanging. Some of Michael's family and Corinne's friends were there so they are fun. We came home and crashed. I was lying in bed last night and was thinking about how much I miss my friends. It was really good to relax and just sit and bs with everyone. Thanks for having us!! Would have been nice to see the Picarello's too but I think they may have had too much wine at the wineries because I never even heard back.

Cody did really well but did not eat much. He did try a bite of a hot dog but wasn't hitting the spot. He ate a little when we got home but taking him to TGIF's after the baseball game. He is craving that. Going to the Ducks game tomorrow...have a great day.

September 4, 2010

Saturday-Well, I keep looking at that knee of Cody's. It did swell up pretty good last night. I am making him stay off it and hoping it goes down. Otherwise we will take a ride to Sloan before Wednesday. I found the Adelphi men's soccer game tonight so we took Brittany and her friend to it. It was a fun night and now Cody is looking at that school. I hope to somehow get the $$ so he can go to college. It was a nice place too and close to Winthrop hospital which is even better.

Good day and I feel the coolness!

September 3, 2010

Friday-So today was the day of the hurricane that never came. Hurricane Earl did not even bring us a drop of rain here in Melville. Oh well. I ran a few errands and then we hung out. We ended up going to the race track and Cody was pretty tired. It was disgusting in there. We stayed till around 10 and then came home. Cody's knee was really swollen and of course, that scares me. I have been surrounded by cancer and have seen so much the past 2 years that everything scares me. Tomorrow rest day and then see where we go from there...

September 2, 2010

Thursday-Well, today my teacher friends all went back for the conference day. Hope it was not too brutal despite the heat.

Cody and I stayed in most of the day. I did my usual errands and then Cody's girlfriend came over and they watched a movie. He woke up with a stiff neck so he was a little sore. He feels really comfortable around her and she seems pretty comfy here too.

Later we took a ride and he ate and then went with me to Chipotle. We were going to go with the soccer guys to Hooters but it was kinda late. We stayed home and watched a show together. His blood pressure was up so I kept a close eye on it.

Hope everyone has a relaxing day tomorrow, heard there will be rain.

September 1, 2010

Wednesday-Busy day but a good one. I went to the gym and then went to SH to meet with my principal and Mary Picarello was there. I talked to my replacement and things look good. I really want to be back!! I know it will happen!

We found out today that Casey will be deployed. All we know is soon. Don't know where or when. UGH. Of course, we are upset. Cody consoled me saying this is what he trained to do. It is hard to think about.

We ran a few errands and got smoothies and then hung out at home. It was so hot and disgusting here. A good day to stay in and chill. Thank God for ac!!!

August 31, 2010

Tuesday- We had our appt at Sloan. All went really well. They are concerned about the way the fistulas are healing so may have to do something about that. Let's hope that with the sitz baths we are doing 3x a day we can get them healed this week. We got home and were both so tired so we took a snooze. I woke up in about an hour and we went to the soccer tryouts. Brittany (Cody's girlfriend) is on one field and the varsity team on the other. It was so disgusting hot and smelly out. I had a hard time hanging but he was so happy. The boys are always glad to see him and they were sharing funny stories about Cody playing soccer. We then left to go to Subway and Brittany was going so Cody rode with her, she drives. It was cute. I met them there and gave them money and went to run errands and met them back at home. So cute. I am so happy for him. He seems so happy. So working on increasing the calories in his feeds since he has more energy he is burning more. Looks like things are definitely improving!

August 30, 2010

Monday-Today was a good day. I got up and went to the gym. I need to get back to that and I am trying. We talked to the pilots today and met them at 1:00. We went to lunch and then to Dave and Buster's. We had a fun time and Cody enjoyed himself. We drove them to the race track because one of the pilots actually used to have a rc car. When we walked in, Cody introduced them as "my pilots". It was so cute. He liked hanging with them. We came home and he ate and then we went to the soccer field to watch the tryouts. It was so cute to see the entire team come over and high five him. It brought me to tears. He said he misses it and breaks my heart. I spoke with the coach and they are hopefully going to give him something to do. He knows he cannot commit to every game, but the ones we are there, he can help out. He said with the players and I just hung out on the grass. His girlfriend, Brittany was trying out for the girls team so we saw her too. It was cute. It was a great day and it is nice to see his stamina and see him getting stronger. Keep going Cody!!

August 28, 2010

Saturday-Well, it was a short trip but Cody did it and Casey graduated! All good!!

We got up early and went to breakfast. Casey went to pick up a friend from here that is doing Airborne school so he came to lunch too. He was here the day Casey left and Cody and I have seen him a few times. Nice guy, good luck, Frank.

We got to the airport around 11. The pilots are great. Everyone got to come look at the plane. I was hoping Casey and Nicole would have decided to just come with us.

The plane ride was awesome. Cody passed out. I knew he was tired. He was so happy to see his brother. I hope he gets well so he can get down to GA to visit him. I need to go too. Seeing all the beaches and the coastline from the plane makes me miss it all. I am thinking I should work on a weekend away, to FL before I go back to work. (Staying out till Nov. 29) Cody could stay with his dad and I think it could work. Have to see. I need to go see my family too.

We got off the plane and Cody invited the pilots to lunch. They are really nice guys, but married :) We met them at Friday's then we went for ice cream and we drove them back to their hotel. They are here till Tuesday. They mentioned Dave and Buster's so going with them there on Monday. Just my luck, two cute pilots and married ones!! So funny. I told my dad this and he says I need to go for the owner of the plane. So funny.

Hope everyone had a good weekend. The weather seems really nice. Thanks for all your good wishes and prayers.

August 27, 2010

Friday-We all got up and were out by 8:30 and headed back to the base. There was a long walk and we drove right up front. I told Nicole it was worth the try. Then once there, I spoke with a soldier and told him about Cody and he let us in. Thank god for Roy there helping me with everything. We had a front row seat and spotted Casey right away. He was sitting in the bleachers. The demonstration was good and I am just glad it is over and I did not know about all this stuff until after Casey did it. (He did not come in on a plane as we thought.) He was in the front of his battalion as a leader and called out the commands. I am soooo proud of him but I was so emotional. Once the guest speaker started and he talked about family, I lost it. Once it was over, we walked down to Casey and Nicole pinned his ranger tab on him. Then we left and Casey wanted to go to Fuddruckers for lunch. The plans were to to the Infantry museum but we came out and Nicole's battery was dead. We had two other cars there. So we had to hang out while a few went and replaced the battery. We took a ride to the army store and the museum was closed. We were all getting tired at this point. The grandparents left and so did Roy. The rest of us went to dinner, more barbeque. Then back to the room and we crashed early. It was a great day!! Cody enjoyed himself and was so glad to see Casey. I am so proud of my sons. This was a HUGE accomplishment for Casey. It is scary seeing all the demonstrations thinking about where this happens for real and I guess that is what gets me upset. Casey is a smart soldier so I know he will do the right thing and I pray that he is safe!

August 26, 2010

Thursday-We got up nice and early and got to Republic Airport. We were so excited. The plane pulled in and was definitely a lear jet! The pilot came in and he was cute! Unfortunately he was also married. We took a golf cart ride out to the plane. Cody was soooo excited. We had a smooth flight and Cody could have sat in the cockpit but his back prevented him from doing that. He did stand there and talked to the pilots about the controls. I was busy looking at magazines about estates, yachts, exotic islands and other expensive toys. I was dreaming for a while.

We landed and I saw a welcome sign for Cody hanging on the fence. Nicole was there with Cody's dad and grandparents. I made sure he was the first one out too. They were really excited to see him. The pilots were awesome. So we went to check into the hotel. So far so good. We got lunch and hung around waiting to go get Casey at 6. Cody and I rode with Nicole to the base. We waited and Casey came out with a huge bag and came to me first. I was crying of course. He looked so good but a little beat up. We left, went and showered and then we to dinner. Casey wanted to go to Smokey Bones. Nicole's parents arrived too. Roy came in late that night. It was good to have him there too. We were tired and we so excited about the graduation. Day one was perfect!

Please say a prayer to the SooHoo's. Today is 5 years since our sweet boy, Tyler passed away. He is missed each and every day.