May 31, 2010

Monday-well this is not the place I wanted to be for Memorial Day. Thanks to all those serving for us, especially my favorite soldier, Casey.

Cody had a rough 24 hrs which luckily improved around 1 today. He was very nauseous and vomited. He slept until around 1 and then he woke up feeling much better. Unfortunately, an organism grew from his line. They are treating it but we will find out tomorrow what the organism is and how to treat it. Most likely his port will have to taken out surgically and then we will discuss the next plan. It stinks that he still even needs one. I am hoping that we can find a way to do without one. Maybe this is a sign it just needs to come out.

I was able to get out a little while today but I think I walked too much in the wrong shoes. I do not have my sneakers here and my knee is really hurting tonight.

Tonight we watched a little of the hockey game and he went to bed feeling pretty well. Thank god for antibiotics.

May 30, 2010

Sunday-First of all I want to say congrats to Mary and Brian. Today is their anniversary and today Brian graduates from law school. I cannot believe how fast 4 years went by for him. What a huge success.

Unfortunately the news was not so good for us. Cody had a fever this morning, 102 and ended up vomiting. It landed us here at Sloan. Hopefully it is not his port. They ran cultures and started him on antibiotics. He was very emotional today. I know he does not feel well and it is scary to be back. He was nauseous here too but that seems under control. We got stuck with the dogs as our famous dog sitters are busy. Moira will get Xena later tonight and Jazzy is going to visit a new friend. Thanks guys, for stepping in AGAIN! Hopefully this is a short stay and nothing serious.

Enjoy the nice day everyone!!

May 29, 2010

Saturday-Nice day on Long Island once the clouds cleared. We headed to therapy this morning then to Chipolte for lunch. Therapy was ok and Cody had a much needed session with his dad. We hung out the rest of the day and all was quiet. Cody wanted chicken wings so I attempted to make those but that was not too successful. We watched some of the Stanley Cup hockey game and off to bed we went.

May 28, 2010

Friday-Cody had a good day. His diarrhea is def getting better which is awesome. He had his English tutor today but he is worried about the regents for english. He actually emailed the counselor and said he is worried. It will be good to talk with her. Cody went to the track tonight and stayed till 11:30. He went with his dad and had some time. His dad left him there which was not the best thing. He needs help picking up his car and stuff and I know he feels bad about asking the guys all the time. But he did it. I got a few movies and ordered chinese food. It was a quiet night for me but it was good.

may 27, 2010

Thursday-Well, today marks one year that we were admitted to Sloan for the transplant. Last night Cody was feeling rather mushy. I know it was because of the one year anniversary. He said "Mom, I could never do this without you." I know he knows that.

He had his math tutor and he did well with it. We only have a few more weeks until the regents which he is nervous about. We are trying to get his counselor here next week just to do a pep talk. He needs that. I am a little behind in my journal writing but I will catch up.

May 26, 2010

Wednesday-Today we got up early and went to Sloan. We changed our day this week so we could take mom to the airport yesterday. We had a very short and sweet visit. Cody's weight is the same so he is not losing which is a good sign. I think he feels better. He is def trying to eat more. It will come, we are told. We did not have to wait for his counts to come in which made the visit even shorter. All was good as we did not get any calls later that day. We came home and it was soooo hot. We both took a nap and boy, did that feel good. So a good day and I hope everyone stayed cool. Definitely time to put the ac on...

May 25, 2010

Tuesday-well, today mom left and went back to FL. I think she had a good visit. She got to see what we do on a daily basis. I am glad she won a basket.

We had a quiet day and then took her to the airport around 1 today. Cody and I went to see "Shrek" and we were both tired. He did eat a little more of a burger, 2 bites so we are getting there. I hate to keep pushing and it is hard. I hope he did not lose weight as that makes him upset.

Good day and nice weather too....

May 24, 2010

Monday-Busy day and yes, Cody was pooped. He had two tutors and he worked hard today. I spent a lot of time at the bank and had to open a business account with the checks. I was up there 2x but it is all taken care of. Cody tried to eat a burger today, one bite. I will take it. He seems to be getting so much better. We go to Sloan on Wednesday this week so all looks good.

May 23, 2010

Sunday-Today was an amazing day! We hung around all morning. I took Cody to get his mohawk shaped up and then we headed to Dave and Buster's for the fundraiser. We met Richard Park and his family there early and Cody gave him his birthday present. Cody was so excited and so thrilled to see him. I knew he was nervous because he had to head to the bathroom and almost got sick. He hung out with him and played games while we waited for all the people to get there. At one point he was playing that basketball game and he beat all of them, Richard, Tom and Richard's son Preston. I was thinking I was going to have to carry him out of there. He would follow Richard and Preston would follow Cody. I know he had a great time. The room was amazing and our video montage was playing. I cried when I first saw it but I was ok there with everyone watching. A former parent, Dayle Dalia did this whole thing herself. She ran all over Long Island getting people to donate. There were 42 baskets for raffling. There was a TV, laptop, a signed Islander jersey, and so many good prizes. We hung out and I got to see a lot of my teacher friends. Cody's 3rd grade teacher came too. Pat and Frank Petrone stopped by and it was good to see them. There were a handful of Cody's friends there and he enjoyed seeing everyone. A parent from the school made a money plant loaded with 5's and another parent won it and then handed it to Cody. That was really nice. Then they did a 50/50 raffle and they pulled Cody's name. Cody said he did not put his name in it but everyone else did. He was so surprised. My mom won a basket of games and Richard Park won 2 baskets. It was a good time and we made some extra cash to help us get through the next few months. We are so lucky to be surrounded by this amazing community. I have a family here and I know that. I am sorry that I did not get to hang and chat with all my teacher friends but it was kinda hard to. Please forgive me. We are definitely blessed. Thank all of you for your help, donations and support. We love you all.

P.S. Before Cody fell asleep tonight he said, "mom, I can't believe all those people were there for me". To me, that about says it all.

May 22, 2010

Saturday-Well today was a relaxing day. Even though we were not at the track the whole time, we were all tired. We took a nice drive down to Huntington and did a few errands. Cody drove a little and we had a good time. Came home and Cody's friend Tom came over so he had some time with him. So good to see him hanging with his friends. We are keeping it quiet so we can save our energy for tomorrow...

May 21, 2010

Friday-Today Cody was feeling pretty good today. He slept late and then had his math tutor. He felt better about the math. I called the teacher last week after he felt so upset and stressed from their session. He said it was much better. Then he went to physical therapy. He got a massage and some heat and did a little stretching. We hung out and relaxed and he ate some pineapple. I am working up to feeds so he can go without for 6 hours on Sunday for the fundraiser. He is tolerating them well. He is not eating as I have to get him his 6 hour break so he will feel hungry again. I just hope he is not losing too much weight. Mary Picarello came by with Kevin today to show us the dvd she made for the fundraiser. It is perfect and of course I cried through it. Cody seemed to enjoy it too. We played with Kevin in the grass and Cody bought a bubble blower for him. It was a good day.

We went to the track around 6 and he hung out and I took mom to Target to get bathroom stuff and then to eat. Everything was crowded so we went to Panera for salads. It is hard for me here with mom but she is here and I know Cody enjoys seeing her. Her heart is in the right place but not to sound harsh, she is just a disappointment to me. But what can we do?

We left the track early as Cody said he was tired but kinda said he did not want us to sit there all the time. He did not nap and I know he was pooped. He wanted to go to the city tomorrow but just don't think mom can do the walking. So not sure what we will do. I have lots to do here so I would prefer just to get my stuff done for a change. We shall see.

May 20, 2010

Thursday-Well nice and early ride to NYC...we hit a lot of traffic. We got in to see the orthopedist right away and he really did not seem to concerned with Cody's back issues. He said he could not really see much on the xray but the radiologists did. He is going to do an MRI and a bone density test to check him out that way. Also testing his levels of Vit D and a few other things to make sure he is getting the appropriate dose. We saw the gastro dr too as they were nice enough to squeeze us in so we do not have to go next week. All is ok there except with the weight loss due to him not eating. We left the city around 3. We got lunch there because we thought Cody wanted to eat but he did not. He nibbled once we got home but not much. It is really making him upset. He is trying but it is just not happening. Hopefully tomorrow will be better. Mom got a purse on the street so she was happy. Quiet night here at home just chilling. Hope everyone enjoyed the nice day.

may 19, 2010

Wednesday-It was a good night and the day was ok but with his back bothering him. I called this morning and they said he has some bone loss and demineralization which I will find more out about tomorrow. We are meeting with the orthopedist tomorrow morning. He is in pain and it scares him when it pops. Mom got in today at 3 and I attempted to make chinese food. Cody really wanted it and I thought it tasted pretty good. But he just had one bite. We are trying. I am worried but they said it will come. He feels bad when he can't eat too. We got a HUGE delivery from my friend from work, Laura Kelley. She brought lots of groceries and a HUGE bag of dog food. Soooo nice! We are so lucky!!! Have a good night everyone....oxoxox

May 18, 2010

Tuesday-amazing night in that Cody did not wake up for the bathroom at all. First time ever. There was no more vomiting either. We were up early and headed in to Sloan. It was a long day there. He got IVIG and pentamadine-an antibiotic for a particular strand of pneumonia. He also got an xray of his back too. I guess I will hear about that tomorrow. He was disappointed because he did lose some weight. We have to work on that for sure. He just nibbles. He talks about food all the time and wants to eat but just nibbles. We are trying. Long ride home with the rain and traffic and we are tired. I am going to bed right when behind him. Night night.

May 17, 2010

Monday-The rest of the night was ok but then he had more diarrhea this morning. I stopped the feeds last night and ran to get pedialyte nice and early. He is on that now to keep him hydrated. I stopped for a bagel and was so touched. The girl there handed me an envelope from her and the workers there. Now you know they do not make much money as workers there but they gave me a nice envelope. I was so touched and walked out in tears. Very touched by that. I saw a post on Mary P's facebook and she is asking anyone and everyone to come to the fundraiser. I spoke to Corinne and she and a few friends are working to help out at the fundraiser. SOOOOO sweet.

Keeping a close eye on Cody today. Hoping we do not have to go in but will if necessary. I canceled my new therapy appt to stay close here to monitor him. I am hoping to get a little nap in too. Hope your Monday is not so stressful. I will update later.

May 16, 2010

Sunday- We got up nice and early and went Belmont State Park for a dog walk for leukemia. We did not walk but just wanted to check it out. It was a beautiful morning but we were a little disappointed with the turn out. We stayed a little while, took a short walk and left for the race track. Cody's car was being repaired. We hung out there a little while then came home and Cody's friend Tom came over with his puppies. We sat out back and watched them play. It was cute. We were supposed to go see one of the car guys launch a rc plane he built but it got too windy. Cody wanted pasta and sauce so we made that and Tom ate with us. Cody had a few bites. All was a great day until about 11 pm. He started vomiting and had bad diarrhea. Something did not agree with him. He vomited 2x and then settled down around 3 am. Have to make sure he does not get dehydrated. The rest of the night went ok, so let's home tomorrow works out too.

May 15, 2010

Saturday-Today was a good day. Cody's back is still hurting and I think it may be time for an xray. Have to talk to drs this week. We went to our family therapy. Honestly, not sure what will work out from all this but but if it makes Cody happy to see us there and doing this, then I will do it. I am not holding back as I am beyond that. We stopped off for lunch and then we all came here. We met Casey on ichat and talked to him and Nicole. It is so good to see him but makes me realize how much I miss him. All he talks about is when we are coming to see him which I cannot wait for. He really misses his brother too and wants to show us his new place. I hope he gets through it all and that we can see him in July.

Cody and I took a ride to Target. Kate Schmitt came by with my pretty pots (from Dayle Dalia) filled with pretty flowers. Cody wanted a pepper plant so she brought us that and also a few tomatoe plants. So we got some planters, can't dig in the rocky soil here, and hopefully they will grow!

We were kinda lazy later in the day and wanted to do something but could not find anything to do. We took the dogs for a walk and called it a night. Tomorrow morning we are going to "Canine's for A Cure". Just bringing the little dog as it would be too hard for me to handle both and Cody with his back. Sorry Xena but you get to stay home and sleep without a nagging little pup bugging you. Enjoy your night friends!

May 14, 2010

Friday-Cody did not wake up too well, nauseous but the day went better. He slept a long time and woke up to have his tutor. He did not eat today which has me concerned. He wants to and asks for food but just not interested. We went over to his friends. Their was a group getting ready for the junior prom there. Thanks Ally for inviting him to come. I felt bad because I wish he could have gone. He was happy hanging with his friends and taking lots of pictures. He was so cute. In the car on the way home, he was quiet. I offered to take him for a suit and to drive him to the place. He said it was ok. We came home and were getting ready to go to the track and he went to the garage and tried to open it. His back popped again. I was in the house and he made it to the front door and was white as a ghost. He fell into my arms and just stood there crying and shaking. Craig the neighbor and fireman hero just pulled in and saw us. He came and held Cody and I went to get a chair. He calmed down but he was so upset and so scared. We waited a while and he calmed down and we took a ride to the track. He was not comfortable and not able to move too well. His dad was not around as he promised. He chose to go to dinner in the city instead. So Cody was stuck with me again. It is fine, the guys there are really nice. During the 2nd qualifying race, I realized I forgot his pills so I drove home. Cody called to say he broke his car and pretty badly. He wanted to race his truck so I brought it back. Once I got there, he was tired and called it a night. The guys offered to let him run their cars and he felt so honored. He was happy to come home to relax. Tomorrow we have an early morning therapy session with his dad. I am thrilled-NOT!

Nicole is on her way to see Casey. He gets a pass for tomorrow. I hate her driving so late and she stays alone in a room most of the time just to see him for a few hours. I am looking forward to talking to him.

Tonight I told Cody that I have 2 soldiers. I said both are fighting a war. His reply "and we are both winning!". I will call it a night there.

May 13, 2010

Thursday-Well today was a tough one as far as the tutor goes.  Cody felt pretty upset after the math guy left.  The math teacher is good but overwhelming and intense.  Nothing else matters but math to him.  He is putting a lot of pressure on Cody about the exam because it is the last time it is being offered.  He is worried about not passing and feeling upset.  I will talk to the teacher about this and have not problem with Cody whether he passes or not.  

He ate some chips and salsa and then took a nap so he would be ready for Spanish.  He did well with her.  Then he went to the movies with his dad and I got to get out for dinner.  It was really good to get out and be entertained for a change.  I am hoping to get out for dinner tonight with another friend while Cody is at the race track.  

Enjoy your Friday tomorrow...oxoxox

May 12,2010

Wednesday-Today was a yucky and lazy day. I could have stayed in bed all day. Cody slept till 12:30 then got up and did some homework. He had a tutor today then he went to physical therapy. We went to the mall for a few errands and ate at Chipolte. He ate a little of the chips and salsa. We saw a former student of mine there with her sister and dad. She is in 8th grade. Hard to believe I had her in kindergarten. It was good to chat with them. We came home and Cody did some homework and went to bed around 8. It was a nice and relaxing day.

May 11,2010

Tuesday-We had our weekly appointment at Sloan and all was good. He did lose a tiny bit of weight but I feel the eating is coming so we are still going to keep him off the feeds for 6 hours. Today he ate pretty well and was in the kitchen looking for food which was a big change. We met with the psychiatrist too and he is very mature and articulate when he speaks. She said he always asks the right questions and is a mature young man. I do worry about his friends and his mis-connect but he assures me he is connected. We got back and relaxed and he ate and then we went to the lax game in West Babylon. What a cold night it was!! Brr...not typical for mid May.

May 10, 2010

Monday-Today Cody did not eat much, a few bites. I am hoping this is not the new path he is taking. He was texting Richard Park today so that made him happy. He hit the jackpot when he met him. We worked on his speech today for the Relay for Life event on June 6. He had 2 tutors today. He did well. It was a sunny day so we took a ride, he drove down by the beach in Huntington. He did well. It was nice to get out although it was rather chilly.

May 9, 2010

Sunday-Mother's Day

Happy Mother's Day to all the moms out there. It was a great day for me. We had to go to Sloan this morning for blood work and got great results. The electrolytes are improving so no changes. We came home and Cody cooked dinner for me, macaroni and meatballs. He made the meatballs himself. It was good and he managed to eat a bite. Later he ate sausage and peppers. He eats more each time which is good. He wrote me this amazing letter and I have read it several times and cry each time. He is really amazing. Nicole called me which was so nice and I got my first mother in law card. That felt weird!! Richard Park texted Cody and told him to tell me ' Happy Mother's Day ' and that was sweet too. I got a lot of special texts too and it is great to know so many are thinking about me. I got a call late last night from Casey. He sounds good and begins his training again next week. Say an extra prayer for him, I really want him to pass. He sounds focused and motivated so let's hope. It was a very special day! Looking forward to an awesome week!

May 8, 2010

Saturday-Good day today and Cody ate more! He got up at a decent time, even after the late night last night and did not nap today. He seemed stronger. We ran a few errands today and we went to the movies later in the day. It was part of our Mother's Day weekend. He nibbled a few times today and seemed so happy to be eating. He does not have the feeds for 6 hours during the day so I think that really boosted his confidence and is making him hungry. His stomach can actually growl for food now rather than the constant feeling of fullness. So let's hope this continues to progress.

May 7, 2010

Friday- Today was a good day. We planned most of the day around the track. I got out this morning and went to the mall for a little while. I came home and did a few things here and Cody got up. He had his tutor at 2 and then we sat outside visiting Mary Picarello and Kevin. He is walking now. It is so cute. It was a beautiful day out too. We got to the track around 6:30. I left Cody for a little while and went to run a few errands. We stayed at the track till around 11:30. He came in 3rd for one race and he said he was not feeling it tonight. We got home, he showered and we did his meds. He was pooped. He is feeling better so maybe this concoction is working!! Hope everyone has a good weekend.

May 6, 2010

Thursday-Well, we had to go back to Sloan today to get bloodwork so see how he was doing. He is still off so we had to change the fluids again. The drs are concerned that he is not eating and we worked out a plan. We cut back on the feeds to see if he could be hungry. We are hoping they are making him feel full and not want to eat. So the hope is maybe with them off during the day, he might eat a little. It was upsetting and frustrating and we are so tired of it. He did well without many trips to the bathroom and now we just need to get him back to eating. The steroids are down so we are hoping that they will not go back up to increase eating. We got home early and went to Chipolte again, his choice this time. He managed to eat 2 bites. Better than nothing and it is a start. I am hoping tomorrow is better. We went to the barber and Cody got a mohawk again. it is really cool! We came home and took the dogs out again and then the Spanish tutor came. He really likes her too. They had a good time. She works well with him.

I got a package today from my friend Corinne's family. It was from her husband, Michael's mom and his sister. What a surprise and so sweet. It was a bracelet and gift card for Mother's Day. It is amazing to know how many people that think of us and that care about us. It was a beautiful card and I cannot wait to see them to thank them personally. Thanks again!

Have a good night everyone. oxoxoxoxo

May 5, 2010

Wednesday-Happy Cinco de Mayo...today my grandfather, my dad's dad would have been 99. I bought lottery tickets for today, first time ever and thought maybe he would shed some luck down but he did not. He was a cranky man so maybe I have to do it again.

We hung around today and went to eat at Chipolte, hoping that maybe Cody would eat. He did not. He had his social studies tutor today and did well. We took the dogs for a walk and he really seems to enjoy that. We went to HSE's lacrosse game. I was happy to sit outside as it was a picture perfect day here, minus all the pollen and blooming.

Off to bed pretty early too.

May 4, 2010

Tuesday-We had a long day. We were at Sloan most of the day and then at the end, his electrolytes came back off. They did a quick urine test and found out that he is getting too much fluid with the feeds and then the IV fluids at night. So we are cutting back on the fluids and we have to go back on Thursday (ugh) to get checked. We had changed a few meds and added one that he was on and we will see how he does. He has been tired more but I think that just comes with the disease. It is hard now sitting there all day and we do not have to be so confined. We are seeing all of the other kids with cancer and it is hard to take in. It is really sad too. We have seen it. Cody does well there and talks to the therapists. Today it was a music/dance therapist. He likes his nurses and is pleasant. So let's hope the new dosage will clear up the thrush in his mouth and maybe he will want to eat more. He is such a trooper. Tonight while tucking him in, I said to him how strong and amazing he is. I said I know this sucks too. His reply "mom, it could be worse". This is the way he gets through this. Stay that way, my boy.

May 3, 2010

Monday-Today we left rather early. They started on my bathroom repairs so we needed to be out of the house. I stopped for a bagel and Cody ended up vomiting while I was inside. He had a little blood today in his stool so I made a few phone calls. I know it could take a long time for the GVHD to heal, even years but I will not tell him that. So just keeping a close eye, once again, and seeking out other doctors too.

We were able to get a room at a nearby hotel and just chilled all day. Cody had a new Science tutor this afternoon and that seemed good. The best part of the day was he got a text from Richard Park! He was thrilled!! Off to bed and an early start tomorrow for Sloan.

May 2, 2010

Sunday-Well, I think I will be spending a lot of my Sundays at the rc track as we did today. We were there for a few hours and one of my former students came with his family. Always good to see familiar faces. Cody had a good time and just hangs with the guys which he needs so desperately. He ran his new truck and had a good afternoon. We did not stay the entire day but he enjoyed his time there. He actually was hungry today and ate 2 croutons! Hey, it is a start.

May 1, 2010

Saturday-Hard to believe it is May! I think I say that every month but time sure flies. We heard from Casey today as he had a pass for the weekend. It is always good to hear from him. Nicole was there with him so he did not want to spend too much time talking to mom.

We hung around all day and just chilled. Last night was late and emotionally draining so we did not do that much. I always try to find things for us to do and things that would make Cody happy. There was a lacrosse game today, HSE vs HSW and we went to that. It was a bigger event than I knew so it was crowded and Cody sat with a few friends. It is always good to see him with his friends but I still can see the mis-connect. He tries and he tries hard. It will come. We stayed for the whole game and then went home and relaxed for the rest of the night.

April 30, 2010

Friday-Not a good day. Cody got up late and the math tutor came. Just before he came he went to the bathroom and there was all blood and clots. Cody was so upset. Well, it happened 2 more times and the 3rd one was significant so we had to go in. Tonight was the night he was planning on racing his new truck. He was so upset with me and cried. He was mad first and was yelling at me which I know he needs to do. Unfortunately I am the only one he can get mad at. He finally conceded in going and we got there around 7:30. He cried all the way there and we did not say a word to each other. He came around a bit when we were there and then on the way home he just blasted the music which is ok too. I have to let him vent. Once there I warned everyone that he was pissed. We had to make sure he did not need a transfusion after losing that much blood. Thank goodness, he did not and we were sent home. All of his counts were good. He felt fine and we got home around 10:30 I think. It makes for a late one for me with the IVs running late but it was good to be home. I felt so bad. The rest of the night there was no blood, thank goodness. Tomorrow we hope to go to the lax game and enjoy the nice weather.

April 29, 2010

Thursday-I let Cody sleep most of the day. We were up a lot last night. I got a nap in too. I got him to physical therapy at 3 and he got a massage and some heat for his back. He felt a bit better but still in pain. I feel so bad for him. It is so hard to see the 17 year old go through this. He was so healthy before and now all we see is sickness. We are both getting so tired of it. He was up and did a few things here with me and we just stayed quiet most of the day. He is still not eating or drinking anything on his own. We have to get back into that.