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...