day 210 December 31, 2009

New Year's Eve, Thursday. We had a good day but a lazy one. We went back to TGIF's for lunch again because Cody wanted to try something else. He ate a few bites so I am happy with that. I went and did a little shopping and then we both came home and napped. I am up at 5 am doing his antibiotic so I never really go back to sleep. I think we have 2 more days of that. We are hanging here tonight and are going to watch a movie. My only wish for this year concerns my boys. One is that Casey remain safe in all of his adventures and for Cody to continue to get better. Seems easy enough right? It has to be a better year. If that happens, I feel like everything else will fall into place. I hope yours is a good one too! Love you all.

day 209 December 30, 2009

Wednesday-Today went to lunch with the Short's and Moira. Mary P. was supposed to come too but her 'little guy' was sick. It was nice to see Colin and Aidan. Michael came too for a quick bite as he was working. He has not seen Cody since last year at Schneider's. It was fun and Cody even ate a few bites. We are taking it slow and being cautious.

Then Cody and I went to the mall to look for a cowboy hat. Two of the guys at Sloan, nursing assistants wear them and he wanted to get one. We ended up going to a store in Bay Shore and he found the exact one he wanted. He wore it last night. We went to watch another soccer game but no one showed up to play. He loves it.

We are looking forward to a quiet day tomorrow.

Day 208 December 29, 2009

Tuesday-Long day at Sloan today for antibiotic infusion and that IVIG infusion. We had a nice chat with Dr. Kernan about what we are looking forward to. Cody is gaining weight slowly but surely. The fever last week was from an infection in his g-tube that his IV line contacted. Have to keep those lines away from g tube.

Looks like we will not be on every other week visits for a few months. That makes it difficult for my job. I will begin the discussion process next week. We can possibly go to Winthrop for the blood work which should help. Not sure what I will do just yet.

We got home around 7:30 and were pretty tired but watched the Islanders win!!

day 207 December 28, 2009

Monday-We got up nice and early and Casey and Nicole left. It is always hard to say goodbye. It was a short visit but so nice to have them home and for Christmas. It is always hectic with visiting everyone and with 2 families here but we did it. Cody and I were limited as to where we could go so that did not help. We stayed home and played games. Last night's game was a great way to end their visit.

We did a little running around today and were both very tired. We ended up going to HSE's indoor soccer game. Cody was on the computer with a friend and they were playing so we ventured out. It was good to see him with his friends. He needs that.

Tomorrow back at Sloan for a long day of IV meds. But Cody is feeling good so I am happy!

Day 206 December 27, 2009

Sunday- Today was another great one that ended with the Islanders game. Nicole went to have breakfast with a friend. Casey, Cody and I went to get a bagel and then to the mall. We needed to get chains for our Ranger medallions that we got from Casey and Nicole. Then we came back and got ready for the game. We had amazing seats! It was a good game but the Islanders did not win. After the game, we went down to see Richard Park again. He came out again and talked with us and we took some pictures. Cody just lights up and it is a beautiful thing. Everyone behind the scene knows him now so it is really special. They have offered us tickets for whenever. We feel funny asking but we are invited. It was a nice ending to the visit with Casey and Nicole. They are heading home tomorrow. They want to have some time home before Casey reports to Ranger school. He has another 3 months of training, similar to boot camp all over again. I will miss him but I know he is happy doing this. I will continue to pray for his safety and return once he is deployed again. Love you all!

day 205 December 26, 2009

Saturday-Today Cody and I had to head back to the city for a visit at Sloan. Thank goodness it was a well checkup. We made sure to get in and out. We were in Urgent Care which is Sloan's emergency and you never know what you can catch there. We do get a private room there too.

We got back home and Casey's friend Preston came for a visit. He is in the Army too so it was nice to see him. We played a few games and then ordered chinese food. It was a fun afternoon.

Cody feels great and it is so nice to see him smiling more.

day 204 December 25, 2009

Merry Christmas-Friday-When I went in to do Cody's 5 am infusion, he wanted to stay awake. Thank goodness he went back to sleep till around 7:30 when my brother called to wake us up.

We watched them on ichat and they watched us. Everyone here had a great time and Cody was surprised to find the biggest gift was not Casey and Nicole's pots and pans like I told him but it was for him. He loves his new 'stereo' and his drum seat. He and Casey jammed this morning, Cody on his drums and Casey on the bass. We had a nice breakfast although Cody did not eat. Casey and Nicole left around 1 and then Cody took a 2 hour nap. I did make the turkey and ate it too. Cody and I just kinda relaxed most of the afternoon and watched some bits and pieces of a movie. It was a nice night and a great day. I hope everyone enjoyed their Christmas.

day 203 December 24, 2009

Merry Christmas Eve-Thursday

We had a great day. Cody and I hung out this morning while Casey and Nicole visited her parents. We had lots of visitors today and it was nice. Cody got a lot of gifts today and more things came in the mail. Craig, Sue, Emily, Jean, Allan and a friend from work, Dayle Dalia all stopped by. Cody and Nicole tried to make the gingerbread house and it was not cooperating but they did a good job. We fondued for tonight and then did a chocolate fondue for dinner. Cody did not feel like eating so we did not push it. I think he is so full from the IV nutrition and from the feeds that he has no desire to eat. We will see how he does once the IV stuff stops and once the feeds increase in volume. He is getting the feeds 22 hours so he has to feel full. His tummy has not time to growl and desire food if it is always full. He was pretty tired after his day so he went to bed at 7. Of course, I got him up at 9 for meds and then again at 11:00 for a blood sugar test and then up at 5 for the antibiotic IV. So he does not get those uninterrupted hours of sleep. I cannot wait to wake up tomorrow and have Christmas! We have breakfast planned and then I am making the turkey I did not make for Thanksgiving. Casey and Nicole are eating at her house so I will have lots of leftovers. It has been a nice day and we are so thankful to all be together. Cody looks great, feels good and is so happy to be with his brother. That is all that matters! I hope everyone has a nice night and don't forget to leave cookies out for Santa...nite!

day 202 December 23 2009

Wednesday-The main thing I want to say is that we are home! Cody did well all night despite the sleeping condition. There were no rooms so we got stuck in Urgent Care till around 1 am and then a room appeared. I was starting to lose it. I could not find a way to sleep in the hard chair so glad we got a room. We got up early and made sure we were getting out. We got home around 12:30. All is great! It was so good to see Casey and Nicole. Cody was very happy and so excited. I hope all stays this way for a few days!! It makes me so anxious. He is on lots of antibiotics so hopefully nothing else brews. He does have a line infection but I am actually doing the IV antibiotics here so we should be good. Today is Casey and Nicole's one year anniversary. They are out to dinner tonight and we are looking forward to hanging here and relaxing tomorrow. We are going to make some gingerbread houses and things and just enjoy being together. Life is good and let's keep it that way.

day201 December 22, 2009

Tuesday- we got home last night at 3 am. We were so tired. Cody did not have a fever so we slept till around 9. Then he spiked a fever so we had to come back. The day turned out to be ok until a little while ago. A blood culture from last night grew positive just as we were about to leave to come home. Cody is so upset and so tired of all this. Casey and Nicole are driving and due to get in around 5 in the morning. The plan is to run antibiotics through the lines now and then again in the morning so we can go home after that. It is so sad we cannot be there for Casey's homecoming. He and Nicole will need to sleep and so we should all be rested. Not the plan for tonight but let's just hope we get home tomorrow. Please include us in your prayers.

day200 December 21, 2009

Monday-Today Cody slept in a little. He had a pretty good night and was catching up on some sleep. I baked all day. Lots of goodies for the drs and nurses that we will see tomorrow. We are all set for Casey and Nicole. Cody was lying on the couch waiting to watch the Islanders game which we could not get and lo and behold, he had a fever. We took his temp several times and he got so upset and cried. I know he does not want to spend another Christmas in the hospital and I will do my best to avoid that. So off we go to Sloan. We get here and he has no fever. Of course it spiked again by the time we got to our room here in Urgent Care. Big decision but looks like we are going home and then we will return tomorrow for our appt. He is getting an antibiotic now and will get it again tomorrow. If we stay, we are here for 72 hours and I think it is worth it to try to go home. Last time he never got a fever again. Let's hope this is the case with this one or we will be back and will be admitted. I really hope we can get through this week and stay home. It is 12:45 am and the plan is to go as long as nothing grows while we are here. He is getting an antibiotic and then we can leave. Long drive as I am so tired. We can sleep in tomorrow and then head back here sometime after lunch.

Please say an extra prayer for us when you read this. Thanks.

day 199 December 20, 2009

Sunday-Well, there was a lot of digging out to do today!! Cody and I were both up early and he watched the dogs getting buried in the snow from the window. I had to shovel a path for them to get out. I would say we have 2 feet here. It is so pretty but what a job. Cody went to breakfast (he just watches) with his dad and family and spent some time over at the apartment. I finished up shopping and just did some things here. We all watched a movie later and Cody went to bed early. He is still having some diarrhea so I emailed the dr and we are back on immodium. It is better but still there. We are getting VERY excited about seeing Casey and Nicole this week. Can't wait!!

day 198 December 19, 2009

Saturday-Well, today we are getting a blizzard and a lot of snow. We decided to run a few errands because we knew we would be stuck here later. We went and looked at a few phones (Cody wants to spend that money!) and then we went to do a few other things. Cody's friend Tom and a girl that is a friend (NOT a girlfriend) came over to fondue again. It was a nice afternoon. He was really tired from all the entertainment. As for me, I just sat and watched the snow cover the area. It was a lot. I woke up several times to check Cody to make sure there was not some draft coming in. The snow just kept piling up! Sure is pretty and so peaceful when it is falling.

It will be a white Christmas!

day 197 December 18, 2009

Friday-we kinda slept late and took our time to get to our appt. We were tired from the last night's adventure. We had a short visit at Sloan and all is good. We had a quiet afternoon and Cody ended up with a nice cash gift from our friend/neighbor Sue's mom and friend. He was so surprised. It was a good day!!!!

Day 196 December 17, 2009

Thursday-Well, today was a good day after a rough night. We increased the rate of the feeds but it was too much for Cody and he had diarrhea all night. Finally at 5 a.m. I turned the pump back down. The diarrhea got better during the day.

It was a great day with a lot of surprises and ended with a night of memories. Cody had his math tutor today After 3 weeks of no tutoring he did pretty well. Then we were sitting here around 1 and he got an email back from his favorite hockey player, Richard Park. Cody was so happy but pleasantly surprised when Richard asked if we were coming to the game tonight. He said he has something from his family for Cody. Well, he was scheduled to do his first african drum lesson at 7. Again that took 3 weeks for us to get and for him to feel well enough to do. So being the good mom that I am, and we all know I do not like to ask for things, I called our Islander connection to see if there was a possiblity of us going to the game tonight. It was another Islander/Ranger game too. In about 15 minutes, we had our two tickets and the VIP parking. Cody was so excited. He was able to get his drum lesson at 3.

A package came in the mail today that was from my dad and stepmom and from Cody. Cody is like me and could not wait so I opened it. Cody made some arrangements and actually chipped in with some of his own cash for it It is a beautiful silver charm bracelet. On it is a very special charm. It is a heart and on one side is a gold star with my name. This side is from my dad and stepmom. On some of those really tough days this past year where I have worked my magic, I have joked with my dad and said "I get a gold star for today". So he got me a gold start. The other side is Cody's and it says #1 MOM! Need I say more?

So we have the drum lesson and the guy is cool and Cody enjoyed every minute of it with the teacher saying that he learns fast. We run home and change into our Islander gear and are off.

We get to the coliseum and get our VIP valet parking. Ann, oneof our connection people meets us at the gate and takes us to our seats. We end up in one of those 10 seater boxes, red velvet with a waitress and a TV monitor at the seat. It is dead center ice. We are thrilled. We watch the game, not so thrilling with the Islanders losing and wait for Ann to come get us.

We go back downstairs and wait for Richard. A few players come out and Josh Bailey comes to say hi to Cody. Sweet guy. Then Richard comes out with a stick, one of his jerseys-signed "To my buddy, my hero", a bag with two presents all wrapped. He comes and hugs Cody and then me. He is this soft spoken special guy. We stand and talk and it is like we are best friends. Cody is smiling from ear to ear. We learned he lives near us in Woodbury with his wife (damn!) and two kids. Such a warm, compassionate guy, I tell you!!! He then takes Cody to the locker room for a tour and shows him the opposing teams locker room too. He walks us up to the car. Can I tell you that Cody was beaming all the way home?? He opened the presents in the car to find two really nice Islanders sweatshirts and a hat. He is just glowing. We will see Richard again and he said he cannot wait to meet Casey and Nicole. Cody wants to get him something so shoot me any ideas. I am clueless here. We are so lucky and I am so happy for Cody!!

Day 195 December 16, 2009

Wednesday-Great day! We had a great visit at the clinic today and his counts were beautiful! We are increasing the feeds, going slow but he is tolerating it well so far.

He was in a great mood and wanted to use the fondue pot we got from Margo, a teacher I work with. Thanks, Margo.

It was the first time in a long time that Cody has been able to sit at the table and eat. So we tried a broth fondue that was really good and Cody was able to eat some shrimp and broccoli. It was great. At the last minute he invited his two friends over, Tom and Ben. It was a fun night and he even stayed up till 9:30!!

We did a video chat with Casey and Nicole. It was good to see them both together again. He seems well and has lots of questions to answer. Cody wants to know it all! Can't wait till next week!

day 194 December 15, 2009

Tuesday-We had a good day home that ended in lots of visitors and haircuts! Cody felt great and ate several small meals and snacks. The diarrhea is MUCH better, thank goodness. The day was also very good because we hear from Casey and he is in GA now. He and Cody were quick to play XBOX at the end of the day too. It feels like it is going to be a great Christmas!!!

day 193 December 14, 2009

Monday-This day, one year ago, we found out that Cody had ALL. He had had the biospy and all I remember is my head spinning. I know Corinne, Mary P, and Jean were there at some point that day. It was a day of hell and emotion beyond any that I have ever felt before. Cody was scared and it was so hard to take in. So much of this past year are a blur but so painful too. I keep hoping that it is 'just a year' and we soon can put this all behind us and move forward. I feel it will happen.

Now here we are a year later and just getting home from another visit to Sloan. I think we have things under control and I hope they stay that way. We need to get this behind us. We are looking forward to the Christmas season now and hope we can be home to enjoy it. I try not to make a big deal about it to Cody just in case we have to go back. He has had a lot of letdowns this past year.

We are home and it is overwhelming. He has been needing extra insulin so I am back to giving his injections but with an easier device to use. I have to check it more often. This is because he is getting more steroids and also more sugar with the tube feedings. He is still getting the IV nutrition too. I hope this will all be under control soon. He is in some pain with the tube but the stitches are out and the anchors on either side of the 'button' so it is tender there. He is being strong and not taking the pain medicine. He is sleeping so it can't be that painful.

I have to get up a few times tonight but I am sure we will sleep better here at home. I am just hoping we stay here!

day 192 December 13, 2009

Sunday- It is a little after 8a.m. This is the day one year ago that Cody and I went to Huntington hospital to get his blood checked. This is the day we spent in Huntington before being transferred to Schneider's with the first diagnosis of leukemia.

Sunday evening-long day and a frustrating one. Cody wants to eat and was told he cannot eat what he wants....again. Also not sure he is going home tomorrow which made him very upset. I ended up taking a ride home and cooking chicken and rice for him and brought it back and he ate a few bites. I figured that but I hoped it would make him feel better.

Not sure if we will go tomorrow but I want him well too.

We talked about it being a year ago that we were admitted for all this. The year has flown by and we are looking forward to a better one for 2010.

day 191 December 12, 2009

Saturday-Quiet day here at Sloan. It gets really quiet here on the weekends. Today was a rough day, however in room 902. Cody is not allowed to eat what he wants. The dr today, a different one from the one we had all week, really focused on Cody letting his digestive tract settling down and chilling out. Unfortunately, this did not go over well with Cody. He loves his spicy food and is also very stubborn. The steroids do not help this situation. He nibbled on chips but he was hungry and very upset by this today. He is handling the different feeds at full strength and the diarrhea is lessening. I think we are making progress, slow but steady progress. We are hoping to get out of here tomorrow but not sure just yet. He needed a blood transfusion today which happens from time to time.

day 190 December 11, 2009

Friday-Well, we got good news and bad news today. The bad news is we have to stay here till Monday, at least. The good news is all of his biopsies and xrays do not scream anything specific.

We are treating his gut and he should get better. He did well last night and the feeds started up again today. It is a different formula and at full strength but a lower infusion. So far so good.

He is better today and asking for food which we are still trying to be specific on what he eats. His gut needs time to chill. New meds were started so this should help too. The steroids make him a little nutty but we can deal with that for now. I think this will work. I just feel it!

day 189 December 10, 2009

Thursday-Well, this day officially began at 12:01 am while we were still in Urgent Care. Because of the fever, there were lots of blood cultures and then that start of antibiotics. He had to get three one hour infusions until we got up to the room. That would have been at 2 am but the nurse forgot to unclamp the last infusion (I have learned a few things) and we got here in the room at 4 am. Cody slept but I did not until around 4 and woke up at 8. We met with a gastrointestinal doctor and are trying to get to the bottom of the diarrhea. It was not the 'feeds' (this is what the tube feeding is called) or anything new. Just something that persists. It is time to stop this. An xray of his abdomen was ordered for today. It came back negative, thank goodness. The biopsies from Friday's procedure did not present anything new. Matter of fact, they looked a bit better than the last ones from about a month ago. This dr still thinks it could be a bit if the rejection or it is some bacteria they are missing. Lots of stool cultures were done today too. He is still getting antibiotics and we have to watch the cultures for 3 days. I am sure we are for a few more. He is on clear liquids and we stopped the feeds, trying to give his system a rest. He is a bit cranky and crabby this visit too. Of course, he wants to eat and he was told he can't. He got a heavy dose of steroids so I am sure that is contributing to his moods.

I got a nice email from Casey today and he and Nicole might be planning to have a backyard party/wedding in 2010. That would be nice. He is packed and waiting to go home. I pray that Cody gets better so we can get out of here and stay out of here.

Thank goodness for our great friends and neighbors, the Silvino's. Our dog sitters came to the rescue again today and we are so lucky to have them in good hands. Thanks again!

Stay warm and hope to see you home soon....oxooxox

day 188 December 9, 2009

Wednesday- we got stuck in the awful rain this morning but it was a good visit or so I thought. He gained a pound since Friday so that was good. He seemed more tired than normal and kinda cranky today. We got home at around 2 and he napped. I woke him around 4 and he was still very tired. After last night's up and downs and trips to the bathroom, I was tired too. I woke him at 4 and he was still tired. I was just settling in and went to check him and lo and behold, he had a fever. So back to Urgent Care we go. We are here now, getting cultures on new port and blood checks and fluids. I am pretty sure we are staying tonight. Hopefully it will just disappear and not be anything other than a fever. He has no other symptoms. Include us in your prayers tonight. Thanks and love you all....

day 187 December 8, 2009

Tuesday-Well, we made it through the night. We had to get up a lot but we got through it. I know I am tired tonight. Cody gets a feeding tube and is not starting to eat a little more. This is what happens when your stomach starts to stretch. He feels good and is getting around on his own and did not take any pain meds since we have been home. I ran a few errands. We got the tree finished. We got our dogs back and had a nice visit with our dog keepers and we are so lucky to have them. Very lucky!

We go back to Sloan tomorrow and hopefully there will be some biopsy results regarding the GVHD- the rejection. It is all treatable so I am not so worried. I would rather it not be there but will deal with it. I think Cody seems too good to be having this going on.

It is so good to be home and hopefully we will both relax soon. Cody is so much happier here too. There's no place like home....

Day 186 December 7, 2009

Monday- It was a rough night but Cody did not take a lot of pain meds which I am not sure why he did not want any. The discharge process took all day but we got home in the evening. I was so overwhelmed and so tired. I am surprised I remembered everything. Good thing Cody is old enough to understand everything too. He is a big help. Some team we have. I had to make 2 trips to the parking garage before I took Cody down. We had lots of stuff. We got settled in and had to get up a few times during the night but we made it through. I was really worried. I never have trouble eating and could not eat yesterday. Glad we are home.

Day 185 December 6, 2009

Sunday-Today was a long, slow day but with lots of progress. Cody took two walks on the floor and did well. He sat in the chair for awhile and did not take that much pain medication.

He really wanted Chipotle and we asked Kate Schmitt and her hubby if they could get it. They were coming for a visit. Not only did they bring it but they added a month's supply. Only kidding, but they did bring a few extra dishes of Cody's favorite concoction from there. Thanks again Kate and Danny...Let's Go Islanders!

The plan is to leave Monday or Tuesday so let's see what the morning brings.

day 184 December 5, 2009

Saturday-Well today was good and it was better than I thought. The night was a little rough and with pain. When Cody woke up, he actually sat in bed. I was impressed. Then he got up twice to go to the bathroom. It was tough but he did it. I was so proud. Cody was in a pretty good mood most of the day but he again mentioned the failure issue. I know how tough this was for him. Around 6pm, he got some pain med and our nurse Rae Ann let him hook himself up to the feed. Tonight we started off with just pedialyte. It was started very slowly and so far it has been tolerated. I feel so relieved at this point. I feel like we can do this....I know we can.

day 183 December 4, 2009

Friday-Today I was up at the crack of dawn, very anxious. I wanted to be showered and ready in case we go early today for the procedures. They came for us around 9:30 but Cody did not go in for procedures till around 12:45. Long wait but there was a nice guy there that kept Cody entertained. They talked about everything and had similar interests. He works here but not sure what his title is. It was a long time before I heard from anyone but they called me to tell me he was out and that they were beginning. Then around an hour into it, a nurse came and told the mediport was in. The last few things took forever, or so it seemed. Once he was in recovery, I went to a room to meet with the doctor. He did say his colon was inflamed and there was some fluid in his belly. Have to see what the pathology reports say. There is speculation that it could be the GVHD-the rejection disease but it all treatable, they say. I got in to recovery and he was awake and chatting very slowly. He turned to see me and said he had double vision. He could not feel his legs but that all came back. I sat with him for about an hour and then we came back to the room at around 7:30. The pain started to come then around the g tube. It is there and not covered and ready to go although very sore. We are not going to use it tonight, we will try in the morning. It will stretch his stomach out so they go slow with it. I hope the night goes well. He is such a strong boy and has been so upbeat throughout most of this. I am so proud of him.

The picture is of him waiting for surgery. There is a smile under that mask.

day 182 December 3, 2009

Thursday- Long day but a good one. Cody feels well and the surgeries are set for tomorrow.

He is getting an endoscopy, colonoscopy, feeding tube and a double lumen mediport. We were going to do his 6 month bone marrow aspirate but we decided to wait a little on that one. I think he is nervous as he should be. I know I am.

It is kinda rough here this time. The guy next door had a meltdown last night. He is an older guy, like 25 and is not doing too well. Then tonight I hear someone very sick. I kinda just stay in the room.

I did get out and walk today. Thought I might do a little shopping but most places are just not for me right now. So I just walked for a long time. It was actually nice out and not cold at all. I just needed to clear my head a little.

I hope I can sleep tonight. Long day tomorrow. We go early at like 10 so that will not allow for a whole lot of waiting.

Say a few extra prayers for us tonight. We will need them.

We just talked to Casey and that was a good sign. He is so excited to be coming home. This time he was talking about what food we are having. Guess he wants some of mama's cooking. Not a problem for me. Guess I can always start my diet after the New Year like the rest of America. :)

day 181 December 2, 2009

Wednesday- We actually got some sleep and Cody woke up and his eyes looked much better. He seemed to be feeling better. No positive cultures so all seems ok. The dr this morning said things are pending at this time for Friday's procedure. The dr is speculating a virus and he is getting better from it or that maybe there was a bacteria growing and the antibiotics kicked it. Not sure just yet but his numbers do not point to dehydration. I keep talking to Cody and am trying to convince him that he needs to eat and drink but he is really not digging it. I will get back here by the end of the day when I know the plan. I really hope it goes through for Friday.

day 180 December 1, 2009

Tuesday- It was nice to sleep in our own bed. I did so much today and we started the tree. Unfortunately during the night, Cody had lots of diarrhea. He felt good all morning, took a nap and we started to do the tree. He suddenly stopped and sat on the couch. I thought maybe he was feeling sad. But then he said it was his body, it did not feel right. I knew then that we needed to come back. I made the call and we got there at 6 last night. He was put on fluids and 'looked dehydrated'. His eyes were very red and irritated. Anitbiotics were started. They use some strong ones here and they are great. We got to the room at around 11:00. Let's hope he feels better in the morning...

day 179 November 30, 2009

Monday-Well, we were discharged as promised. It took us all day as Cody needed his antibiotic and a dose of IVIG. He felt ok but did vomit as we were about to leave. He is still having diarrhea but no positive cultures for anything. He got his nose swabbed today and he was sniffling and his eyes were red. He was having trouble urinating this morning. He went several times, small amounts and it burned. Again, no positive cultures came back so far. We were discharged around 4 and it took us 2 hours to get home.

We found out today, the coach called me, that Cody was getting the "Coach's Award". We had planned on going but after the long day, Cody was just too tired. It is an honor to get this and we are sorry we will miss the speech but we it will be vidoetaped for us.

So we head back on Wednesday for surgical clearance and then we check in on Friday. He is getting a double lumen port. This is the access line that is under the skin. It will save him from having to be poked all the time. He had a single port way back in December. They are going to do a biopsy of his gut too just to rule out the rejection disease because of his diarrhea.

And then he is getting his feeding tube. We hope to leave on Saturday if all goes but I have a feeling we will be there till Monday.

So we are making the most of our days home this week. The plan is to get the tree up tomorrow. Our doggies are in their 'vacation' homes and they are going to stay for the week just to help them deal too. They seemed stressed last week.

So let's hope the plan does work this week and honestly, I can't wait for Friday.

day 178 November 29, 2009

Sunday-A relaxing day here in Room 928. Cody doing better, mentally and physically. He drank and ate a few more bites today. He is smiling and seems happy.

We are planning on going home tomorrow. We will return Tuesday or Wednesday for pre surgical testing and then the feeding tube on Friday. Can't wait to get home tomorrow, lots to do and I want to get the Christmas stuff going. Lots to do but it will get done.

We got a nice phone call from Casey today. He sounds good and is excited to get home. He and Nicole are going to be here on the 23rd and that is their one year wedding anniversary. They want to go to the city and have dinner in an Italian restaurant, any suggestions? We will be going to a hockey game on the 27th so that will be fun too. Cody is very excited to see them!!! I am too!!!

Hope everyone has a good night. oxoxoxox

day 177 November 28, 2009

Saturday-Today was a much better day, mentally. Cody could not get his anti depressant yesterday (the procedure) but was back on it today and what a difference. He actually smiled today. Guess he still needs that.

The pic line is working. He even ate a little today. Not really supposed to eat Chipolte but he took a few bites of it. He drank better and def seems hydrated. Still dealing with diarrhea but doing ok overall. We watched the Islanders not do too well but his player scored so he was happy.

Around 7:30 pm, his all time favorite nurse came in! I always said if he was old enough, she would be my daughter in law. He really likes her. I can project what his wife will be like. He took a shower and feels good for the most part.

day 176 November 27, 2009

Friday-well, today was an ok day but worrying about the pic line placement was making us nuts. They first tried to do it at the bedside. The technicians came and looked in both arms for a vein and did not have any luck. We were going to give him valium and then they would numb his arm. He was fighting me and saying he was not having it done. So we waited the rest of the day and went do to something called "conventional radiology. They do all kinds of procedures there.

We were told there would be mild sedation only to find out that there was not. We convinced them to give him something and they did. He went in and I had to wait outside. It was a pretty scary looking place. I really felt bad for him. About 30 minutes later, the dr came out and said he did well and that he slept through the whole thing. Well, it was a different story for Cody. He said he did not get sedated and he felt the whole thing. Not sure if he was out of it and wanted to make me feel bad or if he felt it. I don't think the dr would have said that. Bottom line, and a thank goodness one, is that the line is in and functioning and he is getting nutrition right now. He needs so much more which is why he is getting a feeding tube and it goes directly to his stomach. It will help stretch his stomach out gradually too. His favorite nurses are here and each comes by to give him a pep talk. Another one emailed me and she is coming in Sunday and she will be great at it too. This will all help him I am sure.

So we are supposed to go home Monday, then back here on Friday and we'll stay overnight and to make sure I know how to operate the tube. I think we will just enjoy our time home and put up our tree so that will put us in the Christmas spirit and make the house nice and festive.

It's the little things that go unnoticed or that are taken for granted that now are HUGE deals in our world. Stop and think about some of those little things each day. It makes ya feel good!

Day 175 November 26, 2009

Happy Thanksgiving.

We all have a lot to be thankful. We might get to be where we want to be but we should be thankful for what we have.

Cody and I got to Sloan this morning. We were thankful for the phone call we got from Casey this morning. Cody had several bouts of diarrhea through the night. I knew we would be here this morning. He was very weak in the morning and could barely walk and talk. I got him to the car with the help of my neighbor and we got here and started hydration.I feel like mentally he started to shut down on me. I was upset most of the ride in and he was so worried and kept asking if there was something I knew that he did not. Other than being scared and worried, this is what we moms are great at, I assured him I was not hiding anything. Several blood tests showed that he is dehydrated and we are waiting for stool cultures. I could tell by looking at him. He will be getting a picc line tomorrow so that we can start IV nutrition while we wait for the feeding tube surgery. The picc line is an IV line that goes deeper. He will have some sedation but not out totally. He is concerned for that as it is hard to just get a vein for blood.

The nurse we had today was great and explained a lot to Cody about the GI tube and how successful it is. I think we both feel better about it. I am scared and I know Cody is and hopefully he will be feeling better soon. He is finally sleeping and snoring so I know he is out and resting. I will try to the same shortly.

With that, I hope everyone enjoyed their family time and dinners. We will have a make up one when Casey and Nicole get home. We are thankful this year for all the love and support we have seen and received from our friends, families and even strangers. We would have never made it this far without all of you. Thank you. With much love, Mary.

day 174 November 25, 2009

Wednesday-Thanksgiving eve. Our night last night ended with Cody vomiting and having diarrhea. He was very weak and went to sleep early. Today he woke up around 11 and did not eat and was still weak. Barely drank. Went in for a 2 hour nap. All this time I was emailing and calling the drs. I got my point across and told them that if he is getting a GI feeding tube then we cannot wait a month for him to 'get on the schedule'. Still felt weak all afternoon and the mental part is not good. He feels like a failure for getting the GI tube. He keeps making sure I do not think he is a failure. After a stressful day, we are going in tonight or in the morning. I feel he needs maybe some hydration or something. I cannot go through another day like today. I cannot imagine going through a month of trying to make him eat. Hopefully he will be put on the schedule soon and we can start an uphill track. It has been a long year for sure.

I will keep you posted.

Day 173 November 24, 2009

Tuesday-Today started out good (got a call from Casey last night!) but did not end so well.

We got to the clinic nice and early. He got one poke for his IV and blood. He picked on a bagel here and there. We met with the nurse practitioner. I know Cody lost weight but was not too happy with the result there. Since Oct. 21 he lost 10 pounds. Part of that time he was in the hospital and not eating. Slowly he started back again. The NP said all was ok and ordered something we could add to food for calories. Seemed easy enough. We talked about food recipes, etc. Then Dr. K came and she said we have to do the feeding tube. She is not happy that he lost weight. I am not either but he is eating but not enough. We were made to feel like we were failing here. Very upsetting for both of us. Cody vomited 2x tonight as a result of being upset I think. He held my hand the whole way home. I know he is upset and scared. We left there and went to NYU for the psychological but we are both upset. Not sure about the tube just yet, see what happens by next visit, Tuesday.

Tonight we are in my bed and he is just relaxing and trying to sleep. Say an extra prayer tonight...oxoxoxox

day 172 November 23, 2009

Monday-Cody worked hard with his tutors today and enjoyed showing them his new drum. He got an 82 on a spanish test too. Not bad. He ate pretty well today and we hung out to watch the Islanders game. Good day.

day 171 November 22, 2009

Sunday- I think donating blood has made me very tired today and very cold. Have to look that up.

We went to Bobby's today. Cody loves to play on his drums and listen to his stereo and jam. He does that here and will have a better time here once he gets his new stereo that Santa brings. Bobby got him the headphones too so he is all set.

We went to get more groceries, he has these cravings and guess what-I eat them!

I was pretty pooped so we just hung out and he is in bed already at 7:30. Busy day but a good one. I hope everyone had a great weekend.

day 170 November 21, 2009

Saturday- Today it was a nice day outside. We were up pretty early, I went and donated blood and we went to the drum center with Cody's drum teacher, Bobby to meet the drummer from Dave Letterman's band, Anton Fig. It was cool and Cody was on a mission. From time to time, while at the clinic or hospital, there are musicians that come to the rooms to play different pieces. One guy came and he played this African drum. Well, Cody saw them there and used his own money to get one. He inquired about lessons and he said this is the way he can give back. He wants to come and play for the kids when he can. So he and I went back after the crowd and he purchased the drum. He was so proud of himself. It is pretty cool and sounds amazing.

We hung out the rest of the day and did some grocery shopping. It was a nice day.

Thanks to Craig for doing our leaves AGAIN! Love ya Craig!

day 169 November 20, 2009

Friday-Another pretty good day, well almost. The math tutor came today since he will not be here next week. Cody did well until he tried a piece of beef jerky that sent him to the toilet for vomiting. He was so embarrassed and felt terrible. The math tutor is fine, we have had him all year and he felt bad too. He was ok after that so we went to Michael's to get a frame to try to preserve his jersey from the Islanders. Well, that did not work so returning that in the morning. We watched the Islanders game and they ended up losing in the last few minutes which did not make us too happy.

Hope everyone has a nice weekend.

day 168 November 19, 2009

Thursday-Today was a yucky rainy day. Cody has been watching the birds that visit us so we decided to go get a birdfeeder. We are so excited but have not had any birds visit it yet. We are waiting.

We did a little more shopping at Target and then we came home to just chill. It was a pretty good day and we are getting into the Christmas spirit.

day 167 November 18, 2009

Wednesday_Cody had a busy day with his tutors but did well. He ate well but did not end up the day that well. I think he vomits when he lies down after he eats. Have to get to let his food digest before he goes to bed. He worked hard today and feels good!

day 166 November 17, 2009

Tuesday-we got up early today and went in for our appt at Sloan. It did not start off too well and they poked him 6x to try to get blood. They were able to get an IV but not blood return. So he got a finger stick and they really squeezed it out of him. Then when the antibiotic was finished, they got some blood. He is a trooper but I know sometimes it really hurts when they are fishing around in there. He has small veins and I think he needs a break. We were worried about the weight and it did not show on the scales. They are ok with it since he is eating. I know Cody was hoping he gained but he did not. He was bummed. But he is eating so let's hope it continues which I think it will. He tried shrimp tonight but that just did not do it for him. Still potatoes and now tonight also had some chicken-with tabasco of course!

day 165 November 16, 2009

Monday-Today was a busy one. Cody met with the English tutor in the morning and then the Spanish tutor in the afternoon. He did well too! He managed to eat 3 potatoes again.

We watched most of the hockey game-he went to bed before it finished. Thank goodness they won. It was a good day!

day 164 November 15, 2009

Sunday- What yucky weather we are having. Despite it, Cody felt pretty good. He wrote an essay and did some more homework. He is all ready for the week. I tried to do some leaf raking-ugh what a job with we leaves. I am waiting!

Cody ate pretty well today and I am doing my best with anti-medics. (Meds to help with vomiting). I feel like we have it under control, he ate a lot yesterday and kept it down. We are learning the limits. Last time he vomited was Thursday night so things are looking good. Let's keep it that way. Enjoy your Sunday.

day 163 November 14, 2009

Saturday-The best part of today was doing a video chat with Casey. We got to see him but did not get to hear his voice. We typed instead. It was so good to see him and of course, it left me in tears. I miss him.

Cody had a pretty good day. He is making small strides but things are going well. He is eating more frequently but small portions. He is adjusting to life and trying to figure out where he is headed. I am letting him do more things, like he went into Sam Ash to get drumsticks and I waited in the car. We were at the mall and I let him go off in a store and I waited for him. We have a close connection, very close. I know he is worried about me becoming involved with someone and leaving him or treating him like his dad does. He says that is not the case but I think it might be. We talk a lot so I have to make sure he understands that I am here, for always. He is a smart boy and I know he is concerned about a lot of things out of his control. The things he can control is what he kinda obsesses on. We have a long way to go in some areas.

We watched the Islanders tonight. He said he can't believe the hockey mom he has made me. I was a hockey mom a long time ago when Casey played. Some of the Islanders could be young enough to be my son.

It is a very gloomy, rainy, yucky day. Casey brought us a huge ray of sunshine today. We smiled a huge one for him. Love you Casey, please be safe.

day 162 November 13, 2009

Friday the 13th...oooohh...nothing bad here except the weather. Windy and rainy and yucky.

We had a great day. We hung out this morning, then went to meet some teachers at Spuntino's for a quick lunch. All good there and always great to see everyone!!! Then we came home to meet with a tutor for a quick session. We took a ride to Hicksville Mall to the Islanders store to see if they had any cool stuff. I am trying to get Christmas ideas too. Then home to eat and relax. We are still doing the eggs and potatoes but he has added chips and salsa and today he tried pizza. It is like learning all over again. He got another email from his Islander friend and he is thrilled! We are all set for our games on the 27th of this month and then again when Casey and Nicole are here. We have a special connection and we love it!!

Have a great night and stay cozy. I know we will.

Day 161 November 12, 2009

Thursday-Today started out really good. I called Sloan to check on the appt and also some meds and they said we do not have to come until Tuesday. We are on once a week visits and I hope it stays that way. Cody ate fairly well today and in fact, ate too much tonight and it came up. We re learning what triggers this and trying to deal. He comes with me to the grocery store and picks out all kinds of things but then just eats the same when we get home. He is getting there for sure! Just slow. We were all excited to talk to Casey today on a webcam but he did not get the time to do it. We did get a call tonight which was nice. He is very exited about coming home for Christmas. I cannot wait for him to get here! Nicole and I were texting all day and waiting. She was in class today and could not get his call so she was checking to see if and when I heard from him. Thank goodness he was able to call both of us tonight! I will sleep a little better.

Wear red tomorrow or something red to support our troops!

Day 160 November 11, 2009

Wednesday-Veteran's Day. I am thankful for all the soldiers and veterans out there that continue to fight for this country, especially my two favorite ones, Casey and Preston!

I try to get Cody out everyday, even if just to go to the store. We went to get his new video game and to the mall for a short trip. He ate really well today and loves his new game. His friend Maxx Meyer came by to drop off some hot sauce his mom made for Cody. People are just too sweet and nice to us. We are seeing the good side of everyone. We watched the Islanders game and Cody tried to stay up to watch the whole thing but since he is up so early, he poops out early too. Nicole told us that we might get to video chat with Casey tomorrow. We are to be on the computer at 1:00 and maybe we will. So hoping for that.

day 159 November 10, 2009

Tuesday-Off to Sloan nice and early but first I had to make eggs. This was a first. I stopped for a bagel and he got one and nibbled on it all day. It was kinda his lunch. We had a short visit at Sloan and he gained a bit and that was all we needed to cancel tomorrow's scheduled line placement. Yahoo! We even got the news that maybe if things continue, we could go to once a week visits and not come on Friday. We left there and got a cab and went to NYU to begin some psychological testing for his academic needs. I want to make sure he is in the right place before he goes back to school if he goes in January. We have to just see where he is and where his immune system is. He was nervous for the tests but he did well. We will meet again in 2 weeks and then go over everything. I do not think there is much of an issue here but just making sure. It was nice to see our friends at NYU but most of the nurses were out on conferences so we will see them next time. Cody made sure to tell me that he prefers NYU to Sloan so once we get the OK we will go back there.

day 158 November 9, 2009

Monday- A busy day here for Cody. He had his English tutor in the morning and then Social Studies came in the afternoon. It takes a lot out of him but once we get caught up, it should be a little easier. He needed to squeeze a nap in too. He gets up early, showers and then eats his eggs, with tabasco sauce. Then he eats fried potatoes, like chips, with tabasco for lunch and usually dinner too. He manages another bath or shower in the day too. He snacks all day and sometimes his body tells him he has had enough and he vomits. This happened tonight. He wants to eat more but his stomach is not ready for it. He is not afraid to eat which is good. Let's see what the visit tomorrow brings.

day 157 November 8, 2009

Sunday-Today we both woke up pretty early. Cody felt much better and so we were able to make it to his drum teacher's house for a lesson. It was a different lesson and Cody did pretty well. He played along with Steely Dan and sounded pretty good. Now he wants a stereo set up of course. Thanks, Bobby! It was such a nice day so we decided to go to the outlets in Deer Park just to walk around. Cody bought a pair of sunglasses and we just browsed. Trying to get Christmas ideas. Casey called and it was hard to talk and I hope he calls back. It was a really good day! He feels good, looks good and we just have to keep the pounds coming on without letting any come up...good job Cody.

day 156 November 7, 2009

Saturday- Cody woke up feeling not so good. He had a headache most of the day. I went to the gym and did a few leaves..ugh! Cody took a long nap. He felt ok when he woke up. I met a few from work and for Mary Picarello's bday at Applebee's for an hour. It was good to get out, even for an hour. I got Cody all set upstairs in my room. I think he prefers to be there so he knows when I come home. He was awake because of his nap so we watched the rest of the Islanders game, which they won. He wanted to eat again and then he ended up vomiting. It was at the time when he got his pills so you can imagine that mess. We both slept upstairs. It was not the best night of sleep but he did not have a headache.

Day 155 November 6 2009

Friday- Today was the Yankee parade. They won their 27th world series. Pretty exciting. We were in the city but did not get near the excitement. Cody got an infusion of IVIG which is the intravenous immunoglobulin. He handled it well. Then he got a dose of another medicine tto give him added protection for RSV virus that comes with the flu. They could not stress enough how important it is to wash your hands and get a flu shot. The BEST news today was that Cody is gaining weight!!! Remember he has no IV or line so all the eating and nutrition is up to us and he is doing it!! A line is scheduled for Wednesday just in case. If he continues to gain by Tuesday, it will be canceled. He was so happy and he was singing and dancing in the car on the way home!! That picked him up for sure. He is back on track and we will get past this. ( Intravenous immune globulin (IVIG) is made of antibodies that have been extracted from blood donations from 3,000-10,000 healthy donors. IVIG is used to treat many autoimmune disorders, idiopathic diseases (disease of unknown cause), and infections.

Immunoglobulins (Ig) are glycoprotein molecules that function as antibodies. During an immune response, these antibodies, which are present in the bloodstream, detect and bind to antigens (foreign substances that are capable of inducing immune responses). Examples of antigens include bacteria, viruses, mold spores, dust mites, animal dander, and fungi. Once the antibodies attach to the antigen, white blood cells are stimulated to destroy the antigen. Since antibodies are present in the bloodstream, they are considered part of the humoral immune system.?

day 154 November 5 2009

Thursday-it was a good day of eating. Cody had three small meals and lots of snacks. He was able to keep everything down, that was important. He met with two tutors, took a walk with the dogs and then got a haircut. He did take a little catnap but overall, he did really well. It was a busy day too. I am proud of his eating efforts and we will see tomorrow how he is doing.

day 153 November 4 2009

Wednesday- Well the day started off with Cody up nice and early and showering. He ate pickles for breakfast! Then he had his Science tutor. We were messing around on the computer and went to the Islanders sight and lo and behold, there he was!! It was a beautiful article, a touching video and more photos of the great night. I cannot watch it without tears streaming down my face. SO amazing. And to top it off, he got an email from his favorite player!!!! That made him smile even bigger!!!!!! These players are so compassionate. You would have thought he and Cody were long lost buddies! I guess you can't top that for now. Cody had his social studies tutor and we got a call from Casey too. He is eating more and wants to get out to eat tonight although he can only nibble and not really eat restaurant food. Not sure if we will go or not. He feels good and looks even better. I hope we continue on this track....yeah!!!!!!

day 152 November3 2009

Tuesday- We got up really early today to get to the clinic. We wanted to be out in time for the early soccer playoff game. Cody had a good visit and we talked a little about the feeding tube but I am really hoping we avoid it. It is not a huge deal other than being surgically implanted but it would be nice to not have it. It would help him with calories if he continues to lose weight. He is dropping down to nothing, so thin underneath all those bulky clothes. We left there and got to the game. Great game but after 2 overtimes and a shoot out, they lost. It was sad. But we were glad to be there...

day 151 November 2 2009

Monday-We started back with the tutors today. We missed 2 weeks but will get back into it.

It is so good to be home and just relax. He is doing ok eating. I stepped out today to take the pup to the vet and that is when Cody vomited. Honestly, I am glad it happened while he was alone and he handled it well. No mess and he did not get upset. The dog is fine too.

We took a walk later in the mall, just to get out and all seems good so far.

day 150 November 1 2009

Sunday-Happy November to everyone. Hard to believe it is here already and we have to start Christmas shopping.

Today was a good day. Cody is eating a little in the morning, snacking and then more later in the day. He feels great. He enjoys his baths and showers, sometimes 3 a day.

We are still high from our Islander experience and hope you all got to see the video clips.

day 149 October 31 2009

Happy Halloween to everyone!

We had a great day today and it was beautiful out! We hung around most of the morning, did a few errands and then went with the SooHoo's for a special birthday celebration for Angel Tyler.

We got the last surviving fish settled. After I transferred all the fish to the not leaking tank last week, they were doing ok. My neighbor checked on them, tweaked a few things and when we got home Friday, everything looked ok. Well, when I woke up Saturday morning, it was a horrible scene. All fish were dead and floating. Now these are big fish, I could not just flush them. So it was kinda gross. But the little crayfish made it. So we went to PetSmart to get a smaller tank for him to get settled in. He seems to be pretty hardy. As I am sitting here writing, I am in the kitchen with the dogs and Xena must be glad to be home. She is actually snoring! So funny.

We waited in the afternoon for Xena's return and had a nice visit with Moira. Thank God for Moira! Cody had fun handing out candy and scaring with bigger kids with his ugly mask. We watched most of the Islanders game, I watched it all, he went to bed. GREAT game!

We both are pretty tired so it should be a good night of sleep....Happy Halloween!

P.S. We realized that last Halloween we were with Casey for his bootcamp graduation. Hard to believe that has been a year already!

Day 148 October 30 2009

Friday-Cody had a good night and a good morning other than being poked. He nibbled in food and I will continue to 'force' that in a some small way. Someone from peds (we were not on the peds floor) brought him a huge bag of Halloween candy. That made him feel a little better and he ate a few pieces. The drs came in around 2 and asked if I was sitting down. I started to sweat. But then he says he is kicking us out of here. You can't do that to me and have me panicking even if for 2 seconds. Then we discuss and find out that we are going home without any kind of IV in and that he is on his own for eating! YES, a little happy and a little nervous. He told Cody he was counting on him. I hope he can do this. I have to push the issue and I will but it is hard. I said a few bites of something every hour to get his stomach back in shape. When he does nibble, he does not vomit. At the hospital on Thursday, he ate 3/4 of an ice cream bar and that came up. I know it probably tasted so good and was nice and cold but it was too much. The little bites definitely work. So we will get that into place. We got home around 6:30 and Bobby his drum teacher came and showed us his very ugly costume. It was great!!

So we are glad to be home and tomorrow is Halloween!!

day 147 October 29 2009

Thursday-we are tired after that late night but we have a pretty good day. The culture from yesterday was negative. Hopefully tomorrow's will be too. The IV that was put in yesterday was not in a good place and caused some pain and swelling and had to be pulled. His veins are so small and are weakened. He had to be poked again and it is so painful. He is a trooper for sure but so hard. We are trying to decide what the plan is. It looks like he will need another temp in so he can get his nutrition while we get him back into eating. I am scared of them because of this infection in his blood but hopefully we can get by without it. We will decide on the plan tomorrow. He did eat an ice cream today but too much and he vomited it. Have to go slow.

Day 146 October 28 2009

Wednesday-Today started out a little stressful but ended with the best night we have had in almost a year. We had another positive blood culture so that line had to be pulled today. An IV in his arm was started after several trys and with Cody handling it the best he could. In the morning, I went to scout out the drs. We had the Islander/Ranger Puck Drop for scheduled for the night and I had to know if we were going. I waited to get them when they came out of report and got the news that we could go to the game!! It was an emotional time and then trying and hoping and praying that the infection was from the line and not from something growing somewhere else in his body. We got an IV in, got his antibiotics and we were on the road at around 3:15. It was yucky weather and even at that time, we hit lots of traffic. We went to McDonald's and he got the OK to have chicken nuggets which he has been wanting. He had a few bites and it stayed down, thank goodness. We got to the coliseum and I called our connection. She met us downstairs and the fun began. Cody was presented with his own Islanders jersey and his favorite number on it. So cool. He immediately put it on. There were camera guys and a photographer there with us too. We met the contact person from the Feldman's, Jeff Picker. We were escorted to the area where the players come out of the locker room and go on the ice. Cody got to stand there and do the high 5's to them. It is amazing how focused they are before the game. It was definitely amazing. I snuck in a few too! Then we went to the ice and watched them practice. We followed them back to the area to wait for game time. We could hear them roaring in the locker room. So cool!! Then they came out for game time. Cody was briefed by the MC guy about walking as even with the carpet, he could slip. I was so nervous. So after the national anthem was played, he started his trek onto the ice. He walked along the side and past the players and they all high 5'ed again. He made the walk to ceneter ice. I could not hold it together any longer. The flood gates opened as I was snapping the photos. Cody was great!! He stood still and waited for the two players to come meet him. They made this huge announcement about him, about how he was released for today to do this and how he is fighting this cancer. He was given the command. He dropped the puck, shook hands with the players and one was his favorite player, Richard Park. He then made his walk back to the player bench, high 5'ed again and safely, returned to his mama...PHEW! We went to do an interview and we hear the scoring. The Islanders scored in the first minute of the game.

We get to our seats and are ready to enjoy the game. Intense game, Islanders win, fights break out, crazy fans! We wait for Ann, our connection and are escorted down to the locker room area again. We stand waiting for the players to come out from their showers and whatnot. Well, they come out and they come right to Cody, calling his name! He chats with them casually and even conversed with the coach. DiPietro was there, the famous goalie that is out on injury. We met a few of the wives/girlfriends too. He got a nice hug and conversation with Richard Park and lots of photos. He got them all to sign his new jersey and then Tavares comes out with a signed stick for him. I think we all became speechless at one point. Cody was on cloud 9 and had one of the best nights he has had in a very long time. He was very tired and barely made it up the stairs and to the car. I got him back to Sloan in 30 minutes. I wish someone would have taken a picture of us. Here we are in Ranger territory, he is decked out in Islanders gear, stick and bag of goodies in hand, in a wheelchair with me pushing him at 11:30 in MSKCC. He made it into bed and took a huge breath before going to sleep. It was amazing, as we keep saying. Thanks to all that made this happen!

day 145 October 27 2009

Tuesday-Not a good day. The new temp line tested positive. I sent out a thorough update so I am going to include that here now:

Hi everyone,

Hope everyone is enjoying the beginning of the fall season. Unfortunately, we are not. Cody was admitted last Monday with a fever. It was a line infection in his temporary line. Let me explain what that is. He has a temporary IV line inserted in his chest with a tube running to a central artery near his heart. It has 3 lumens or lines hanging from it. This is where he gets all of his IV's here at the hospital and I do it at home. He does not have to be poked every time to do blood cultures and to do meds. He is due on Nov. 9th for a more permanent one that is more secure. So when he gets a fever, the first thing they do is take blood from all three lumens or lines to see if they are infected with bacteria. Sometimes, depending on the bacteria, they can treat with through the line with antibiotics or sometimes they have to pull the line to clear up the infection if the cultures are positive. (Did I lose you yet?) We got here late last Monday and tried to treat the infection. It presented itself as one that could be treated and the line left in. But on Saturday he got a positive culture back so the line had to be pulled. He then was given an IV in his arm for his meds. Not fun. On Monday, yesterday, he got the new line placed. The doctors heard some wheezing in his chest and are treating that but wanted to give him 24 hours before he could be released. So today, Tuesday we were discharging when the doctor came in to tell us that one of the new lines tested positive. He is being treated with several antibiotics and we could go home but we would have to be under careful watch. They do not usually send patients home with positive cultures. There are a few problems, one being that the infection could be around his heart because of the line placement, but an echocardiogram confirmed that to be negative at this time. The other problem is that we have to find out where the infection is if it is not the line. So they poked him again so they could check blood not using the lines to see if it is in his blood which means we will have to find out where the infection is. Complicated I know and scary. So while we were discussing leaving and with me doing antibiotics at home which is now problem, I get upset. That made the doctor keep us here. I was nervous to take him home with a positive culture. But I am the bad person now, according to Cody. It is ok, he needs to take his anger out on someone.

The good thing is that we are asked by the NY Islanders, (thanks from a little help from our friends, the Feldman's -thanks Sabrina!!!) to do the ceremonial puck for tomorrow's Islanders vs Rangers game. We have been talking about this since Friday. This is Islanders Fight Cancer month and they are 'hosting' us at tomorrow's game. We are going either way, we will get a pass to leave here if we are inpatient or we are being discharged tomorrow morning. We are VERY excited. That part will not be on TV but we will have lots of photos.

So back to the medical part. Let's hope for a negative culture. If not, we will have to find the cause of the infection which will involve lots of tests and the line will have to be pulled and we will be here for awhile. Thank goodness, there is no fever. I will keep you posted on that issue.

I did get a call from Casey yesterday. It was delayed and a bad connection but he sounds good and it was great to hear his voice. Unfortunately Cody did not get to talk to him. He called when I was home to take care of a leaky fishtank.

So with that, I will say goodnight. Thanks for listening and keeping in touch with us. Thanks again to SH for all that they did Friday night. We love you all.

Mary

day 144 October 26 2009

Monday-Well, we are still at Sloan. We got the new line in first thing this morning. This doctor is very thorough and wants to wait until tomorrow to see that the culture is still negative. The line is placed close to your heart so they have to make sure no bacteria grew there. He had an echocardiogram today too. The dr heard some crackling in his lungs, I actually heard it too, so we are treating that. He got a few nebulizer treatments today. With all that, we should be discharged tomorrow.

I had to run home today to clear out a leaking fishtank. What a mess. Cody's friend Tom came and helped me. The fish are in a crowded tank in the living room for the time being. What a pain. I am wondering if they will make it through the night. While I was home, I did get a call from Casey. It was a bad connection so it was hard to talk. But it was good to hear his voice. It was when I was home so Cody was not able to talk to him this time.

So sweet dreams and extra karma this way so we can be well enough to go home tomorrow.

day 143 October 25 2009

Sunday-A quiet Sunday here at MSKCC. Nothing new here. It appears like we are scheduled for tomorrow for the new temp line but we are an add on so who knows? It would be nice if it is for tomorrow and then we can go home and relax a day or two before the big night. We are outta here Monday or Tuesday. Our big night is the Islander/Ranger game on Wednesday. Cody has made another friend on this floor. We are not on the peds floor but the nurses are just as nice and compassionate. We just click with some. He did eat a little today and took two showers. Without the temp line, he can do that. He has developed a heavy cough so he was put on a different antibiotic in addition to the others. He feels good and we just get bonding and getting closer and closer. Lots of quality time to say the least.

I found out that my school did a "Fall Fair" on Friday. My friends there, the staff and teachers did a bake sale and a few other things and raised a nice donation for us. It brings tears to my eyes. They are truly special people there and I am so lucky. THANKS SH!!!

Day 142 October 24 2009

Saturday-Well, we learned this morning that one of the lines grew the bacteria again so not leaving. The plan is to pull the line, put a new temp one in on Monday or Tuesday. They know about the Islanders game for Wednesday night so we will go to that. The line came out and an IV put in his arm, which he is not happy about it. He got to take a long shower tonight. He ate a few bites of food so we are working on it. While the IV is in his arm, he cannot get his IV nutrition so it is important that he try harder to eat. He does get some extras in his fluids but needs to catch up. The nausea is under control so that is good. I actually feel better that the infected line is out. Better chance of getting to the game. We are still scheduled for around Nov. 9 for his more temporary line. Not sure if we are doing the feeding tube at that time just yet. We will see how it goes.

day 141 October 23 2009

Friday-Cody feels pretty good and is fever free. The cultures are negative so hoping to go home tomorrow. He did not feel like eating today. We watched a few movies and all seems to be looking up. Dr. O'Reilly came in later and said we are preparing for discharge tomorrow so that made us happy. We shall see....

day 140 October 22, 2009

Thursday-Today was a good day. There was no gagging/vomiting and no fever. There was some conflicting reports from the doctors but by this evening it was worked out. The cultures from today are negative so they have to stay negative. It looks like home on Monday if everything goes according to our plan. We got out and took a walk to the lounges on this floor. We talked with a man and his friend was just diagnosed with leukemia two weeks ago. His wife, 36, just had a mastectomy. Crazy and sad. Cody ordered chinese food from here today and had a few bites. Thank goodness.

So let's hope for negative results again tomorrow.

day 139 October 21, 2009

Wednesday-The day started off pretty rough. After moving to the breast cancer floor at 11 pm, we were tired again from last night. They needed our room on the peds floor for a baby.

Weird being here, a woman passed away today and to see her family was heartbreaking. The next time I walked by I saw them covering her. So tough to see that.

The antibiotics kicked in this morning and Cody was very sick. He got very upset and honestly, I am glad he cries sometimes. He needs to get it out. He has infections in two of his lines. He is on four antibiotics. This time it is treatable bacteria and so far, the lines can stay in. We got the nausea under control, watched a few movies and he is really a lot better. The gagging seems to be gone for now and the diarrhea is much better. Maybe these antibiotics are working for other things too. He even ordered food tonight and ate 2 bites of it. He stayed up all day, no naps and showered. We missed the Islanders game tonight but hoping we can go next week. I know we are not going home tomorrow but maybe Friday or the weekend. That is, if we continue on this path and nothing new brews. Say an extra prayer for us please...oxoxoxox

day 138 October 20, 2009

Tuesday-Not a good day and we are exhausted. Cody was able to sleep most of the day. We met with the team and this dr wants to get to the bottom of the gagging issue. She is talking it over with the surgeon to see if he wants to do another endoscopy or a study to have him drink something and watch it go down. Not sure if we will hear back tonight or not. The cultures are still negative which is good. Fever comes and goes but not as high. Thank goodness again and I do not know how to keeping thanking everyone, but the dogs are taken care of AGAIN, thanks to the Morello's and to Moira AGAIN. So we have to give up our Islanders game. I contacted the reps and explained and they have offered other tickets. Then I got a call this evening and there is a game next Wednesday, Islander VS Rangers. It is the Islanders Fight for Cancer Night. They want Cody to do the 'ceremonial puck' that night. I cannot tell him (keep it a secret) in case we can't go but I did tell him we have tickets to go to the game. Maybe he will work harder and get us out of here quicker. He is pretty low right now. Hopefully tonight will be a better night. We have to leave the floor, too crowded here and a baby needs this room. Says he is stable enough to go so not a problem as long as we can sleep. Have a good night everyone.

day 137 October 19, 2009

Monday-Nice sunny day. Cody woke up early to have his chem tutor. Then hewent back to bed. He was scheduled for the spanish tutor in the afternoon and wanted to go to the soccer game. I thought maybe he seemed a little bit more tired than normal but I know you need your energy for the game. Well, the spanish teacher was coming late, we actually forgot she said she was coming late. We were headed to the soccer game when she called. We went to the game and it was chilly out but they won so worth the cold. All seemed pretty good. Home, bath and then it went down hill. Cody was up to the bathroom and vomited twice. I do not know what made me take his temp but glad I did. It was 101 then quickly rose to 102.3. I even checked it in my ear, trying not to believe this was happening. I made the call and knew we would have to come in. We went to Urgent Care and arrived around 11pm. It was a long night to say the least, we got to our room around 4:30 am. No sleep for me. They did the blood cultures and started heavy antibiotics.

We will see what the drs say in the morning.

day 136 October 18, 2009

Sunday-It was a rainy, dreary day. I made chicken soup so I could put your noodles in the broth. We both chilled most of the day. We did a little homework too. Just a relaxing Sunday.

day 135 October 17, 2009

Saturday- I knew Cody would be tired today so I let him sleep as best as I could. The plan for today was some homework, a haircut and then to Schmitt Farm's haunted cornmaze. We had it all worked out with Kate Schmitt and we were allowed to go first before anyone came. She was great and Cody and about 12 friends got to go in before anyone else. It was so nice of her. I even got roped into going in too. It was cool and a little scary. Cody enjoyed himself and loved being with his friends. Thanks to Kate and everyone at the farm that made it happen. The kids thank you too Kate! Cody made it through but was pretty tired and crashed when we got home. That cool fall air wipes him out! Good day!

day 134 October 16, 2009

Friday-Well, we got to the city in great time this morning. We went to the third floor for an EKG to check Cody's heart. A side effect of the new anti fungal affects the heart so thank goodness, all was good there. We met with Dr. O'Reilly. After the chat and visit with him, Cody says he is his favorite doctor. He kinda made us both feel at ease after a rough week. It was a down week for sure. The gagging/dry heaving from his dry throat/thrush is so upsetting. I think we have it under control. He is drinking more and we got a new artificial saliva spray to use and it seems to help. Unfortunately Cody is one of those patients that just takes longer to get over this hump. It is coming but it is slow. This doctor says that by Christmas he should be feeling better. We made it home and we both took a nap and then went to HSE's soccer game and it was cold. It was at 7pm and just damp and cold but Cody wanted to go. It is his social life and I will do my best to get him there. We bundled up and went to the game. Thank goodness they won!Cody fell asleep in the car and had his vomiting episode when we got home. But this time he knew he gagged.

He did get 2 bites of soup down today. We are trying.

day 133 October 15, 2009

Thursday-What a gloomy day. Today Cody slept most of the day. He was up waiting for his math tutor this morning and he gagged and vomited. So we canceled that for today. He went back to bed and woke up in time for his English tutor. He made it through most of that. It is hard to stay focused with someone for 2 hours at a time. He is trying and I am trying to keep him caught up. Not always easy. 11th grade was boring for me. He ate one bite of noodle soup today. He kept it down and I knew he would be able to get it down. He gets his pills down. It is not his stomach but that thrush in his mouth. I did a lot of reading online (good and bad, I know) but this med is supposed to help and there are some herbal things I can try but not sure. We go tomorrow and he will have an EKG to make sure his heart is ok because this med can trigger some abnormal beats. Then we have our regular visit and I hope it is a short one. There is a soccer game but due to the weather I am not sure we are making it. I hope everyone is nice and cozy tonight...yucky out there.

day 132 October 14, 2009

Wednesday-We have hit a low point. The night was not that good and we have this feeding tube issue hanging over our heads. If we have to get it, we will. Cody tried again this afternoon to sip a milkshake. It made him gag and he got the heaves. It did not come up which is good. It is just getting it past his throat. I am hoping this new med works and he can eat. He is upset a bit and just down about the whole thing. I do not feel it is a mental issue and I did read that this can happen. He got up for his tutor and then went back to bed until the next tutor came. I try to get him out each day so we went to get stuff for a care package for Casey. He is going to be overseas till Christmas. He lost a guy in his platoon so he needs to stay. I cannot wait for him to get back. He has called this week and even called grandpa Pete. I see him on facebook so we get to chat there. Cody likes to do that with him too. Let's hope we can get on this 'up' streak and put this all behind us.

Day 131 October 13, 2009

Tuesday-We had a bit of a rough night with diarrhea and then a bout of vomiting. The vomiting is from his thrush infection first causing him to gag then vomit. We left for the city around 9 and as soon as we got on the LIE we turned around to come home to use the bathroom. We stopped one other time on the way and it made the trip feel like forever. We waiting a long time today there too. We have seen this young man there a few times and he and Cody talked. He is there for his 2nd transplant. His brother was there today and he is the donor. So we met the whole family. He and Cody exchanged facebook invites and maybe they will connect with each other. He is 23 but still going through it just like Cody.

We had a long talk today about Cody's not eating and the idea of a feeding tube came up. He is scheduled for one on Nov. 9th but hoping this will not have to happen. He is starting another anti fungal tomorrow that will hopefully help his yucky mouth and then help him to eat. We tried some Insure drink tonight and that was no good. He did have a little of a smoothie I made with fruit and ice cream. We are going to try hard and get him to eating. Then if we are not successful, we will do the feeding tube in his stomach. He is not happy about it but he is wasting away as far as weight goes. We will try harder.

He was upset this evening and then we had to try to do homework which made it worse. I do not know how I could be working through this. I started his meds early tonight so I can go to bed soon too. We need to get a break and move ahead! Soon, I hope....

Day 130 October 12, 2009

Monday-Columbus Day-We thought today would be a good day to go to an Islanders game. It was a good day but it was Kids Day. Cody rested up all morning and we were able to stay for the whole game. They lost but it was a good game. We enjoyed ourselves and we loved seeing our nurse from Schneider's, Jill and her hubby. She is a die hard fan and she and her husband have season tickets. Last season they gave us them for one game and we are going to go next week with them for another game! It is a night game so Cody will have to rest up before the game.

It was great to see Jill and we are looking forward to next week's game. Let's Go Islanders!!

Day 129 October 11 2009

Sunday-Cody woke up and seemed to look more rested. We had planned to do mini golf with his dad and family so we did that. We did not get to finish the course as Cody was pretty tired. Some days he has more energy than others. We left there and had lunch then Cody and I came home. He took a bath and was resting. Everyone came here to say goodbye and we played a few games. He was pretty tired and I know he pushes it sometimes. He is in bed now (7:30) and we hope he feels rested enough to go to an Islanders game tomorrow. Thought it might not be a crowded game and not so rowdy. We will see how he feels in the morning...good night all and thanks for reading.

Day 128 October 10 2009

Saturday-Cody seems to need some days to catch up. He needs to just sleep and relax. So today he slept till around 12 and then we went to HSE's soccer game. He loves going and it is so nice to see the players and coaches and teachers there interacting with him. He leaves there smiling. Everyone makes him feel so special so it is worth going. It is getting cooler so not sure how many we will go to but we will try. They won again and I am pretty sure they are going to the playoffs now. (More games!) We came home, he took a bath and was in bed at 6pm. The colder temps knocked him out. It was a good day for sure! Thanks to all my friends there. It is support and therapy in a sense for me too.

Day 127 October 9, 2009

Friday-Long day at Sloan. We had a normal visit but he needed his IVIG, gammoglobulin. It is for his immune system. We talked about the diarrhea issue and he will be taking an antibiotic for a few days. It is not absorbed, just goes right to the gut so it should help him. We will start it in the morning. We met with the neurologists and they were happy with his progress. They are getting to know the real Cody since he was so out of it when they were treating him before. Cody's big concern is when can he drive again. The seizures and medicines are preventing him. We are going to try to get some kind of clearance for him.

We tried to see our little friend Patrick. We met him from NYU when he was just diagnosed with cancer. He had a tumor on his kidney so it was removed. He came to Sloan and we see him from time to time. Yesterday he had a portion of his liver removed. He and Cody call each other the favorite roommate. Cody wanted to see him but was not allowed. We went to leave a gift and he is in ICU but doing well, his mom emailed me to say. Please add him to your prayer list. He is this sweet 8 year old and has a rough battle ahead too.

Casey called tonight and it was hard to talk to him. He lost a guy in his platoon last week. Scary. I know Cody misses him and is worried. We are trying to work out Christmas plans.

I get off the phone and cry. I am trying to find out what I did to deserve so much pain to my heart? I will get through all of this but so painful. Thanks to everyone and continue to pray for Casey's safe return. xoxooxoxox

day 126 October 8, 2009

Thursday-Today was a busy and productive day. First we met with Cody's guidance counselor. She came over to discuss his schedule and ways we could make school a bit less stressful for both of us. I think we have something worked out so he can feel less stress and not be so overwhelmed. We cut back a few and are helping him review with some regents exams. After she left, Cody worked with his math teacher. He took a little break and then the English teacher came. He was still going strong. And after that, we went to the soccer game. We were 5 minutes late, and I think that is why the team lost. They played a very 'dirty' team and should have won. We saw a few teachers there and it was good for Cody to see one of his favorites, Dr. Stabile. He sat with a friend and it is so good to see him smile. We hung around for the pizza but he did not eat any. Then home for bath and bed. He was tired but had a GREAT day!

day 125 October 7, 2009

Wednesday-Today we decided to go to the mall. It was windy out and we took a stroll in the mall. We hit the two big stores. I am telling you this because when we got home, Cody had a bad headache. Any little thing worries me! I was thinking it could be from the wind or perfumes in the store. Anyway he basically slept all day. Or could it be he just needed a catch up day? He woke up for a little while but was back in bed early.

day 124 October 6, 2009

Tuesday-GREAT day! We got super results today. The diarrhea is caused from a bacteria of unknown origin. It is not GVHD!!! We are cutting back on meds and not adding any for the diarrhea. We will see how he does, as Cody and I think he is getting better with it. We are VERY happy with these results. We went to the soccer game and they won again (undefeated!).

Good day for us and I hope for you too. Thanks for all the prayers. There is some power coming from them. Someone is looking down on us from above. Thank goodness.

Day 123 October 5, 2009

Monday-We had a pretty good day. We got a few things done with the car and then Cody had Spanish today. He was worried about it but he did pretty well. We went to the mall to get his finger sized. He wants a ring. We decided to take a stroll and while we were walking, he put his arm around me. He is just so happy with life. He said he loved me and is just happy. I know these are all good signs. I got a visit from Mary Picarello and Kevin. We kinda just hung in the driveway as to keep Kevin away from Cody. Have to be careful until Cody gets his shots.

We head in tomorrow morning and we will be discussing any new findings and what our course of action will be. Wish us luck.

Day 122 October 4, 2009

Sunday-It was a beautiful morning. We woke up feeling kinda empty. Casey did call us during the night and he was unclear but I think they lost a man. I know there is something going on but I try to avoid that part of the news. We were very lazy today and enjoyed just hanging out. A friend came over to help me do a little bathroom work, we went to get ices and that was our Sunday. Isn't that what Sunday is about?

day 121 October 3, 2009

Saturday-Today Casey turned 19. We were hoping to hear from him last night but did not. Cody slept VERY well and did not wake up for the diarrhea at all. We found out today that it was not over but at least it seemed like we could control it so he can enjoy some things. We had a busy morning with Xena's return (THANKS MOIRA!!!), the nurse and the cleaning guys were here. We went to HSE's homecoming game today. They won! Cody got to sit and chat with some friends and it was so good to see him doing that. He did have a hard time sitting and used me as his "recliner" but he enjoyed himself. It started to rain in the last 5 minutes. We came home, he took his bath and ate a few bites of soup. He came over to me and just hugged me. He said "I don't know what it is, but I feel really good". He then sat on my lap and we just hugged. There is that special spirit I have made reference to before.

day 119 October 1, 2009

Thursday-We had a rough night of several bathroom visits and little sleep. We were told we would go at 4 but lo and behold, they came for us at 11:30. Cody was in the procedure room at 1:00. He was upbeat going in. We heard about an hour and 15 minutes later that they did several biopsies on inflamed areas of his stomach, colon and intestines. It was not a horrible looking outsome but something is wrong. We will know from the biopsies whether it is an infection, virus or gvhd-graft vs host disease, the rejection. Once we know, we will begin proper treatment. When we talked with the doctor, she and I both agreed it was best to stay here tonight. It was 5:30 and one more night here would not be a bad idea. Well, this did not sit well with Cody and he was very upset....with me. He cried and was being short with me. Once he settled down, he apologized and it took all I could to get it out but I told him I know he is scared and I know I am the one he takes everything out on and it is ok. He cried and asked me not to cry but it was hard. I made sure he knew it was ok to cry. In a way, I am glad he cried and that he saw me cry.

Now we have to wait until tomorrow or most likely Monday. We'll keep praying and he will keep fighting. He has to win this.

day 118 September 30, 2009

Wednesday-today was a long day of waiting and frustration. We were told the procedures, endoscopy and colonoscopy would be at 11. Then we were told at 1 then we were told in the afternoon. We got called to come down around 5 and finally at 7pm, they canceled us due to an emergency. A day of no eating and drinking and frustration. Cody was not a happy camper and I cannot blame him.

Day 117 September 29, 2009

Tuesday-Last night was rough with the diarrhea and vomiting. It was 4 times in one hour. I knew in the back of my head we would end up being admitted today and here we are. Tough ride in with stops along the way and then a long day of waiting but we are here. Tomorrow we are scheduled for a colonoscopy and possibly an endoscopy to rule out GVHD-graft vs host disease. It is treatable so I am told but I feel scared. I hope they are telling me everything. Say an extra prayer tonight.

day 116 September 28, 2009

Monday-We had an uneventful day and went to physical therapy. That wore Cody out but so good for him to get out. Kate Schmitt from school stopped over and brought us a pumpkin and a pumpkin pie! It was a nice visit. Good to see her and to catch up. Thanks Kate.

Day 115 September 27, 2009

Sunday-We woke up to rain here today. It was kinda nice for a Sunday and a day to do nothing.

We relaxed most of the morning. We worked on Cody's homework and then took a ride to get ices. He seems to eat a little of the Rita's lemon ones so off we go. We rented a few movies and just relaxed most of the afternoon. I try to get him out a little each day, no matter what it is. I wanted him to watch "Old School" since he loved Will Ferrell and never saw it. He enjoyed it.

He actually took 2 baths today. He managed to eat a few bites of soup and toast today. I will take it.

day 114 September 26, 2009

Saturday-The morning did not start off too well. Cody was sick to his stomach. He was up a lot last night with diarrhea. I am worried. We planned to go to the soccer game and do the pizzas Cody wanted to do and we did make it. It was perfect weather out and he was good through it all. He got to hang with his team and he smiled a lot which made me happy. Some other friends were there and he sat with them too. We had a great time. We got home and he took a nap. I went to get his meds and it just hits me at odd times and I lost it. I feel so bad for him. I do wish it was me so he could have a normal life. I am scared and I keep praying. He was up for an hour, took a bath and is back in bed as I write at 6:24. He said it was a perfect day!

day 112 September 24, 2009

Thursday- we started with the math tutor today. He was the same one we had last year so we were thinking it would be a good thing. However, Cody was overwhelmed and not so sure this is going to work. We were supposed to have Spanish later but we cancelled it for today. I do feel bad and emailed the counselor so we are working on a plan. We ran a few errands today and walked around at the mall. I am trying to force him to get out a little once a day. We took a ride over to the school and saw the soccer team. He saw one of his friends too and we we went to see her. I will do anything to brighten his spirits.

day 111 September 23, 2009

Wednesday-Today we did a little visiting. We went to get pizza with my 2nd grade teacher friends. Cody did not eat but he wanted to come with me. Then I stopped over at the SooHoo's to meet Mary P and to see her baby. He sure is cute!! Then we came home to have Social Studies. We met this teacher last week and Cody was anxious about the workload and wanted me to talk to him without Cody in the room. I had already emailed him and explained the situation. It is all good and they are more than understanding. We have math tomorrow and spanish. Hopefully that will go ok too. We are still dealing with the diarrhea but the nauseous is much better.

day 110 September 22, 2009

Tuesday-We started out very early to get to the city on time. With all the world leaders at the UN building, we anticipated a long ride in which we got. We were seen right away and we started with our diarrhea concerns. We saw Dr. Boulad this time and I feel like we got some answers. We are coming down on the med that is supposedly causing it. We are adding another anti med to help with the nausea which reappeared. We think this is from the anti viral that we stopped. Poor thing but hopefully it will be under control.

I did not speak to the psychiatrist. We were in and out by noon so she called me later and I discussed my concerns about his social interaction and his attachment to me. I am not rushing things but I have noticed that he is still very dependent on me and that it is hard for him to socialize with his peers. It will come in time. He has a lot to worry about and some things would be so devastating if it happened in front of his friends, nausea and diarrhea. It would be devastating to me! So we are watching this closely and we will go from there. There is still the memory loss and he looks for me to fill in the gaps. He and I have been through this 24/7 and it makes sense. I know the infection set him back and it just takes time. I have reached out to some support from CancerCare so hopefully that will give me some guidance.

We went to the soccer game and they won, again. Cody is becoming their good luck charm since they lost the game we did not go to. He has fun and goes on the field with the coach and team and he is all smiles for that. I am not sure he likes sitting in the stands with all the parents but he does it and he is fine with it. Such a good boy!!!