December 31, 2011

Happy New Year's Eve...been home with Cody. Debating last night and today on whether or not to go to Sloan so they can listen to his chest. He is getting better, slowly I think. Just an awful cough and trying to get stuff up. We go back on Thursday for a re check. Nice quiet night at home. We watched hockey today and about to watch a movie before the good shows start tonight.

Here's to a happy and healthy 2012!!

December 30 2011

So not the best day yesterday. After getting home from the port removal and g tube changed, we started up the feeding tube only to find the new one is leaking. They changed it under anesthesia because of what happened a few months back when they went to change it and it was off track and he went through hell until they finally had to put him out to do it. He got several immunizations including the dpt. So we used the feeding tube and had a washcloth to catch the leakage and then our plan was to go in in the morning for a change. We kept it without food or drink after midnight in the event they needed to put him out.

He was a mess anticipating the worst.

So we are driving in yesterday and he is telling me he is really thirsty, understandably so. So once we got in and were at the elevator after a long walk, he is feeling worse, and I am thinking he is dehydrated. We get up to the floor and he is not feeling good. His heartrate was high and his pressure was low. And then the fever comes. He does this huge cough in the exam room and they swab his nose and to see what that is from. So we start some fluids and his blood is taken. His counts come back pretty good, not really dehydrated. We checked the tube and it is not leaking. Surgery checks in on us twice and we find out that he cannot get anesthesia today. So he starts perking up little by little. Finally the dr that changed the tube yesterday convinces us that she can do it in under 10 seconds, which she does but he is a mental mess anticipating the worst from his prior experience. Two drs come in and set up. The change is not painful, just feels like your insides are being pulled out through this hole in your belly. He is silent. It is done and it is successful. He starts to cry once it is done. It was so stressful last time and he was so nervous. He talked to his dad and the plane was switched to Saturday supposedly. Then we are preparing to come home and his regular drs come in to say he has rsv virus. This is contagious and could get worse before it gets better. He is not happy and this was the day we shared a water bottle, great! So now we leave and he is upset about missing his trip but he really can't go. So he tells his dad and that is canceled and we make the ride home. His fever spiked again but he does not seem any worse. He is still sleeping of course, so we hope the day is ok...wish us luck and stay healthy. Hey, I am always better when he is here, but not when he is sick. :(

December 28, 2011

Mediport is out!! All went well. Still concerned about the non weight gain but working on it with the feeds. Still have the g tube for awhile. He had a long talk with Dr. Small today. She is great! He is worried about his weight but she gave him a huge pep talk.

Through one of the support websites, I connected with a family and they had a daughter Cody's age going through the same thing. She is the same age as Cody and actually did the graduation with him too but they did not really know each other. Anyway they connected on facebook and finally met today. She is from NJ, orginally from Israel and is a beautiful girl. She does not walk so well and is in a wheelchair. Maybe they will keep in touch. Sweet!

Home and he is sore. He also got some shots, DPT, one for meningitis and a inactive polio one. We did it while he was still groggy but he felt it. He feels beat up tonight.

Started his feeds early and guess what-they changed to g tube and it is leaking. We did a little test at home but nothing helped so we are going back in tomorrow to have them look at it. Not happy and he is very anxious about the change and not be under anesthesia. It is not painful but he had a really BAD experience. Since it was changed today, and all went well it should be fine!

We are not eating or drinking after 12 just in case they need to do it with anesthesia.

Cody's cousin's were there today too.

Long three years and glad we are moving ahead.

December 27, 2011

Tuesday-so the holiday festivities have ended. I was able to hold out the surprise and Cody did not know his brother was coming! Cody came to my school and then Casey and Nicole came there and surprised him! It was great. I think Cody was in shock. They had a very short visit but we had fun and it was great to have them here. We had Christmas dinner with Nicole's family and then said a tearful goodbye ( I always cry) when we left them. They are back home safely.

Tomorrow is a huge day for Cody. He is getting his mediport out! It is a huge milestone in his recovery. Next is the feeding tube so we will see what they say about that. He is taking ensure through it and no longer the recommended solution he was on for 2 years. It is time to get that out but he is worried so we will see what the drs say.

He did VERY well his first semester at Dowling! He got two A's and a B+ and a B-!! We will take it! He was very proud of himself as he should be!

He leaves Friday for a week in Canada with his dad. I already miss him. He is flying alone and he will be fine!

It has been a nice ending to 2011. I pray for good health and happiness for 2012!

December 20, 2011

Tuesday-Busy and hectic week. Tonight Cody went to the new race track. I am really trying to get him out there and to do more on his own. I realized something as I was talking to my dad. I think the reason he is not really making friends at school is that he does not have much in common with them. They are doing the partying/girl, etc thing and he is not there yet. He goes where he feels comfortable. At the coliseum, he has the Islanders in common. At the race track, he has the cars. He needs to have something to keep it going. The school thing might come but it will take a little while.

I am very excited about Casey and Nicole coming and I cannot believe I kept it a secret. I have their presents hidden upstairs. Cody has no clue whatsoever. I wish I was going to be here when he gets here. Trying to work that out.

Until next time....

December 14, 2010

Three years ago, my life changed forever. I battled the most difficult fight of my life. When I took Cody in for bloodwork, never in my scariest dreams did I think they drs would give him a diagnosis of leukemia. I did not even know what leukemia was. One could never prepare you for the moment when you hear those words, 'your child has cancer.' Cody faced it head on with so many challenges along the way but and I only heard him one time say "why me, mom?" He fought and struggled and dealt with all that came his way. He was upset, scared and sick. I know I could not have done it the way he has. We worry about the future as one does with this disease and continue to pray each night. I pray that his strength and our positive thoughts will always prevail.

We talked about what we wanted to do to celebrate his 3 yrs of surviving and he chose "The Melting Pot". We took Casey there back in June of 2008 for his graduation from high school. My brother, Roy was in town for it. He has not been able to eat there because of the raw food and his immune system. We had a very nice and quiet dinner.

I have a few emotional moments today as I do around this time of the year. I think back to all those that were there within hours of hearing the horrible news and it brings me to tears. I was not in a coherent state but I do know each and every one that visited or called or texted or emailed. This is what kept us going. I read the facebook comments and I am grateful. I read what Cody wrote today and then saw a response back from an Islanders player and I was so touched.

He has come a long way. Tomorrow will end his first semester of college, he interns, he took a trip to Canada this summer and will fly there later this month. He drives and is functioning on his own. He is lacking in the friends department but I am confident that will come soon. He has some catching up to do.

I hope someday that this will be behind us and I pray for the families I know that are dealing with this awful disease. There is hope.

Love you lots, Cody and keep going strong!!!

November 27, 2011

It is hard to believe that another year is coming to an end. I have been reflecting a lot and cannot believe what we have gone through. Our lives seem somewhat back to a sort of normal state and I pray it stays there.

Cody worked with the Islanders today and he looks great! I wanted to post the pics.

I hope everyone enjoyed their Thanksgiving!

We have our tree up and the decorations out..bring on the holiday season!!

November 23, 2011

Happy Thanksgiving!!

I am sitting here tonight and Cody is working at the Islander game. I left at 8 this morning for work and have not seen him. He had a busy night last night at the new rc race track and then all day today basically at the Islander game and then back again on Friday. I was just reading last year's post and the year before. So happy we are home and doing nothing. We were invited to go to a few friends but are choosing to be home. I am making the whole meal tomorrow for Cody and I.

I found out Casey is coming for a few days at Christmas. Cody does not know this. Casey and Nicole are coming for a few days and it will be nice to have them. It was be a huge surprise for Cody.

We have a lot to be thankful for and I wish each and every one of you a special Thanksgiving with lots of love and healthy thoughts.

November 12, 2011

Saturday-Yesterday was Veteran's Day. Thanks to all those that served and continue to serve to protect us here. A very special thank you goes out to my boy, Casey. Your job scares me every day but I am very proud of you and I know you will always do the right thing and stay safe.

Yesterday we went to Sloan after not being there for 6 weeks. The weight is stable, not really gaining but we are trying. Cody gets only one can of feeds which is 250 calories. It is easy to cut that out. Do what I do, eat a bag of chips or a bowl of ice cream. We are allowed to cut that out and are slowly cutting back on the fluids. He is definitely drinking better. He got a few more immunization including tetanus and started hepatitis. He is a bit sore to say the least. He was a trooper and got all three at the same time, meaning three cute nurses and one assistant one.

On Tuesday, he had a tough day. A loose stool did not allow him to get to the bathroom in time while he was at school. He was humiliated to say the least. It was before class so he took the VERY long walk back to the car and I was able to meet him at home. Could have been caused by the senokot but not likely. More likely it was caused from the sugar free gummy bears he ate. Sugar free foods can do this because of the additives. He got the sugar free ones because he likes the texture better. We had to go back that evening for an alumni meeting and he was fine. I know some kids noticed and made a few comments as he walking but not any he knew. He went back to class on Thursday and we are kinda just not talking about it. He did tell the drs yesterday which I am shocked but this is where his support is. He continues to amaze me with his strong outlook.

We also got a call from Casey and he and Nicole are surprising him for Christmas. They are only coming for a few days and we will have to share that time with Nicole's family. Cody will be happy and any time I get with my son is appreciated. Now I have to keep it a secret!

Enjoy the upcoming holiday season my friends!

November 3, 2011

Well, we survived the wedding weekend and it was a stressful one!! Started with a changed fight and that day ended with Cody and I driving from Atlanta to Savannah-4 hours. We made it and did not miss the rehearsal dinner. Wedding day was beautiful. The weather cooperated and was perfect! Everyone looked amazing! Reception was fun but ended on a hectic note but everyone was fine in the end. I would have liked longer time there and to visit with my son and his wife but we will do that another time. We walked around Savannah and it is a pretty little town. Hope to get back. Hope Halloween was fun for all!!

October 27, 2011

Thursday-Well, we leave tomorrow morning, early for my son's wedding. He has actually been married for 3 years but went to the courthouse a few days after Cody was diagnosed. He has been overseas and guess this was a perfect time for a wedding. Cody is the best man and we get to see my dad and stepmom and my brother and his family. Should 3 days but good to be there to celebrate. Cody is pretty excited. He bought a fake mustache to wear when we get off the plane. Funny!

We went to the hockey game on Tuesday night when the penguins beat the Islanders. Richard is on the penguins and scored for them too. I did cheer and I was caught by our friend there. LOL

We waited and saw him afterwards and then he and Cody were texting.

We were waiting in the area with a few families. One child was about 7 with leukemia and had just finished his last round of chemotherapy. Another was a sweet little girl who was 4 and has an inoperable brain tumor. So sad. Some very rare tumor. Very sad. I don't get it. I pray for a miracle for her.

Enjoy your weekend my friends, I know I will. Just happy to be with my two boys, beautiful daughter in law and my family.

October 24, 2011

Monday night- Cody and I had dinner with Richard Park, NHL hockey player. I shared a glass of wine and dinner with him. It was awesome. He is an amazing man!! After we all greeted each other and were sitting, he said he needed to get a photo with Cody. I took the picture of he and Cody. He wanted the picture. He told Cody he was sorry for the embarrassment. I took one before we left. Somehow it was ok for him to take the photo in the middle of a restaurant-go figure!! It was a nice time and we learned a lot about his one year in Switzerland and now he is playing for probably his last year with the penguins. It was a night we will never forget!

October 24, 2011

Monday-Great weekend. Lots of games. The best part was going to HSE's soccer game and Cody was visiting with the team before the start. The coach comes over to me from across the field and gives me a hug and says "Thanks for bringing my good luck charm." So touching and so sweet and they won!! Undefeated!!

Last night Cody got a text from his hockey player, Richard Park. He is here in NY and has a game tomorrow. He plays for Pitt now. He wants to hang with us tonight!! So exciting. Cody texted him and told him it will be hard to go to sleep now and Richard wrote back "me, too." Another amazing person. Cody once verbalized that he felt getting cancer was a blessing. Not exactly what I was thinking but then he said "look at all the people we met". We have seen the greatness in so many and continue to. So thankful for his recovery and continue to remain hopeful that this is the end of that c word in our lives.

On Friday we head to Savannah for Casey and Nicole's wedding. Can't wait to see them!!!!

October 16, 2011

Sunday-Great weather this weekend! Cody had a class at the NY Aquarium so we went there on Saturday and then the Islander/R.....game on Saturday night. Islanders won too!!

We are adjusting Cody's meds a little for his anxiety or this weird feeling he gets. I think he still needs something because when I stopped it, the weird feelings came back and he could not eat either. So adjusting a few meds to get the magic potion for him. His uncle Jim came out on Friday and added some decals to his car. He is thrilled! All in all, things are pretty good! Getting very excited to see Casey and Nicole in 2 weeks!!!

October 5, 2011

Wednesday-So I am once again, touched by Cody's amazing character. He has been watching a youtube subscription video called "The ShayTards". It is a day to day encounter with a family. He apparently, has been watching it for years. Well, he was inspired by them. They had a weight losing segment and he used it the opposite, to gain weight. He made a video clip and they posted it on their site. Well, he has about 5000 comments and over 115, 000 views in less than a week!!

It is truly amazing and shows an emotional side that I knew was there but did not know it would come out in this form. I do not want to post it yet as he does not want anyone to see it. Once he does, I will or you can look for it.

My oldest is officially 21 and loving it!! Cannot wait to see him on the 28th!!!!

October 2, 2011

Sunday,

So I have been told that someone (Dayle) has been waiting for an update here. Sorry it took me so long. Thanks for always thinking of us!! :)

So busy few weeks with Cody's classes and all. We are trying to adjust to this new way for us.

He had that 24 hour bug and felt fine a day later. We needed to take a day off to sleep but he felt good, thank goodness.

We are up early and he actually gone on this Sunday. Cody is doing his first Islander intern gig at Adventureland. He is very excited!! He looked pretty good today leaving. I will meet up there at 11 to see him and make sure he is eating and drinking.

We had his monthly visit at Sloan on Friday. We are really looking to cut the feeds out. He is down to 1 can and the rest is water for hydration. The goal is for him to maintain his weight and learn to drink more on his own. I know we use it as a crutch. He is worried but I think if he focuses on it he will get it.

He has met a few people at Dowling. I am really hoping this helps. Looks like 2-3 of the interns are from Dowling too so he will have to chat with them today.

Tomorrow Casey turns 21!! He has been in FL all week and I really wish we had gone. He went to Disney with my brother and family. We fly down at the end of this month for his wedding. I really can't wait to see him!

Hope everyone has a nice day!! Thanks, Dayle! I feel the love!!

September 21, 2011

Well, last night was not one of our better nights. Yesterday Cody complained of being nauseous. He got home from school at 6 pm and then did not want to eat dinner. He ended up vomiting. He tried to go to bed and jumped again only to vomit and run to the bathroom for diarrhea. He told me we needed to go to Sloan. I got scared. We jumped in the car and he was just not feeling well at all. Once there, his vitals were pretty good and they took his blood. His counts came back really well, almost in the normal range which was really good. I had emailed our doctor after the first bout of vomiting and she said a stomach bug was going around. Well, it was concluded that this is what Cody ended up having. In a way, not a bad thing. He got a few bags of fluids and a stress dose of hydrocortisone so he felt better in a few hours and we were sent home. We got home around 4am. It is tough to sleep there so we both took today off. He is MUCH better and ate and no more sickness. Guess it was a bug!

September 15, 2011

Well, Cody finished his first full week of school! It is tough and I def have to help him and still not sure if he can do this but he is giving it one hell of a try! He is doing a lot, driving out there to Dowling, eating 2 meals out and is responsible for himself which is something he has not done in a long time. He is still adjusting to his classes and the routines and is complaining about not meeting anyone. However he did say today that he was talking to a Marine guy so that is someone! He spoke to his psychiatrist at Sloan today on the phone so hoping that helps. He is working out at the gym and my friend/trainer there is working with him one day a week so that is another huge perk. Overall Cody is happier than normal and sings and laughs and does not stop fooling around with me. He is going to have one happy relationship when he finds the right person. He is really funny too! We are getting excited about seeing Casey and Nicole. Casey has to deploy again around March so that is upsetting but this is what he is happy doing. I really want to get Cody there to visit him this December when he is off school. They need that!

So pushing along and continuing to encourage Cody hourly to keep up with his school and to keep him focused and not lose confidence. He may end up having difficulties and we will worry about this when that time comes. For now, getting him through this semester is my goal.

September 8, 2011

So the weekend was tough. I feel bad for Cody. He really wants to have his soccer back. We went to a Dowling game on the weekend and discussed ways he could start rebuilding his body back. It is tough.

He did have a better week at school. He is still trying to meet friends and I know he will. It takes time. He is adjusting to his work load and definitely needs my help which I will provide.

School is off to a good start for me too. Hope it stays that way.

We are very excited about the upcoming wedding!

Please say an extra prayer for Nicole's cousin. He was born with half a heart and had open heart surgery at like a week old. He is doing well and will need more surgeries but should be ok in the long run. Amazing what drs can do these days!

Hope all the kiddies have a great school year!! And the big college kiddies too!!

September 2, 2011

Friday-so yesterday was Cody's first day of college classes. He has been so anxious and overwhelmed the past few days. I think the whole hurricane/vacation caught up to him too. On Wednesday, he was truly not himself. He could not eat and followed me to work. Finally I gave him adivan and he began to feel a little better. Then on Thursday he went to his first class at 1 and of course it ended early. He is really worried about how to go about making friends. He said he did talk to one guy. He found a Wendy's to eat lunch at while he waited for the second class to begin. He did well but I know he is nervous and worried about keeping up. Last night we went to bed only to have him up at 1:30 with vomit and diarrhea. He exploded! I think it all caught up with him. Thank Goodness it was just the one time and today I made sure to keep him hydrated. That is one positive for still having the feeding tube. I can hydrate him through that. We are weaning him off it but he still uses it. He was pretty good today but I kept an eye on him.

He has been emailing the psychiatrist and she was great in writing back. She wrote such a beautiful email and I was reading it, I lost it. I think the whole college thing hit me. I will do my best to help him keep up and get through this.

Hope everyone enjoys their Labor Day weekend. This summer flew by!! Back to work on Tuesday for me!

August 30, 2011

Tuesday-What a weekend. Cody was supposed to come home on Saturday. Well, the hurricane was approaching and fast. I called to let he and his dad know that they needed to change the flight. Well, since that was MY decision that was just not happening. So on Friday while we were stressing about how and when to get Cody home, Casey got home!!! Back to GA, but not overseas!! So thrilled. I get one back in the states and the other one is stuck in Canada...typical!! So the plan was for Cody to try to come as scheduled on Saturday which I knew was not happening. So the storm roars through here and I lose power which makes it the cell phones weak too. So the plan to get Cody is for us to drive halfway on Monday and meet. I needed to get him home. He was stressing about not being here and I know he was worried about the storm and all. The storm closed one section of the trip so on the way home, we were re routed. Cody did well while he was away. I am proud of him. He gets in the car and says "I need junk food!" (His dad's family are vegetarians-not the way to gain weight!) He ate pretty good yesterday, Roy Rogers for lunch and Mc Donald's for dinner-LOL.

Today was his monthly visit at Sloan and he was upset because he lost 1/2 a kilo. His weight is a real concern for him. He is fine. He got 2 more shots and labs were great.

Tonight we were getting things set for his first day of classes and he is nervous! He will be fine! He is concerned about meeting people. I think he will be fine!

Good luck to all those starting for the first time!

So happy to have Casey back. Sending him a welcome home box full of candies!!

August 26, 2011

So it has been a few weeks since I last wrote. Cody is in Canada visiting his dad. He left Tuesday after his Islander interview which he will do doing the internships!!! He is thrilled!!! Basically he can do the game operations AND the community relations ones. He can do as much as he can. We will see how it all goes with his work load at school. We went to his back to school orientation and he was very excited!

Unfortunately today we are preparing for the hurricane. Hurricane Irene will hit us on Sunday. Not too thrilled and a little scared but will get things prepared more today.

Cody has been feeling great!! He is trying to eat more and is definitely keeping up with his fluids.

We are anxiously awaiting Casey's arrival back to the states, GA. Basically, it is any day now!!

(Can't understand why I have IBS!! LOL)

Well, let's hope the hurricane doesn't do too much to us. Be safe my Long Island friends!! XO

August 17, 2011

Wednesday-Well, summer is winding down. I am not too happy about it as I have enjoyed winging it and Cody has been feeling great!!

Next week he will go to Canada for a few days to see his dad. We have open house on Monday for Dowling and then he interviews for the internship with the Islanders on Tuesday. This weekend is another ride with the mini's.

Cody has been feeling good and is eating and drinking a lot too. He has had a couple outings with his friends. I think the kids are sad about leaving each other. One of his friend's, the Mincone family lost their dad. Cody knows one of the sons and I had one in kindergarten. We are going to a memorial service tomorrow night for that. I know he will see some of his friends there but not on a happy occasion.

I am worried about him going away but we both need this. He will do fine. He knows what to do. It is just an hour away by plane. Wish us luck, both of us!

Good luck to all the college kids that are leaving. I know how hard it is. I remember the day Casey left. Nicole is going to a meeting today and hopefully she will find out when Casey is coming home. He said he was packing when we last chatting so I hope that is a good sign!

August 10, 2011

Had an awesome time at the Yankee game!! Thanks to Rachel and the MSKCC!!!Thanks to Ben and Tom for making it a great night for Cody to just hang with his friends!

Cody got the call from NY Islanders to go on an interview for an internship! He is thrilled!! It is on Aug 23.

To end a great day, we just did skype with Casey!! We miss him and pray for his safe return!! Love you son!

August 8, 2011

Monday-Happy August..not too happy about being August.

We have had a great summer and I hate to see it end. I love fall weather though! Tomorrow we are going to the Yankee game. Cody's friends, Tom and Ben are going.

Today old neighbors from our block, Asha and Kushal stopped by. They moved to TX in 2004. The kids were so little. It was nice to see them. Good times.

We are enjoying our relaxing time and hate it to end. Cody is going to go to Canada for a few days with his dad in 2 weeks. I am nervous but he will be fine.

We are praying hard for Casey's safe return. Just read about another guy he knew that did not make it. He has to get out of there. 2 more weeks. I am waiting for him to come online to chat. We missed his calls 2x today! We really miss him and pray for his safely. Love you, son!

July 31, 2011

We did the press conference on Thursday! It was really fun. I spoke and messed up the diagnosis date, go figure. Cody did well and seemed a lot less nervous than I was. I mentioned at lunch later that he did not drink too much.

Later that day he went to work and called because he did not feel well. He tried to stick it out but came home and said he felt dehydrated. I started water in the gtube and then we called in because he was so nauseous with it. The fellow said to switch to pedialyte so we did that the rest of the night. We had our monthly appt in the morning.

So Friday we went in and labs were ok. His weight is up to pre transplant weight and that is what we were shooting for. He still is getting 3 cans of feeds and needs to drink to get caught up. It might take a little longer since we are catching him up at home. He is thrilled about his weight. We saw the boy, Karl and his family there. They live 10 minutes from us. Karl is having a tough time too. He was in the hospital for 5 months following his transplant. His mom is stressed and she has 2 little ones at home. I begged her to call me to even just talk. I think she will. We met Uncle Jim and Matisse and had lunch with them. Matisse looks adorable in his shaved head.

We are having a quiet weekend but a good one. Can't believe it is August tomorrow!!! Not looking forward to going back to work. Looks like a busy month too!

July 28, 2011

Very exciting day here for us. Cody and I were asked to do a press conference for the NY Islanders to help promote the vote for a new coliseum. While I was very nervous just thinking about it, it was something I knew we could not refuse. We both wrote little speeches and had fun with it. It was a fun experience and we learned how his diagnosis had an impact on the community at the coliseum. It was really special. As always, thanks to Ann!!

Cody did not drink enough today and I knew that. He came home and relaxed and went to work for a little while. He came home and said he felt dehydrated. I started water here and pedialtye and called the team. Our appt is for tomorrow so hoping we get through tonight and can just go there tomorrow. He is really doing so well and the fact that this is not an emergency is a huge step. Keeping fingers crossed for a restful night!

July 24, 2011

Sunday-Busy week. We went to the kidney specialist on Wednesday. All was great there. He is still going to stay on the enalapril to protect his kidneys from the damage of his treatment. Enalapril is a blood pressure med but it works to protect the kidneys. His urine was negative, no evidence of proteins which is perfect. We stopped in at Sloan and Cody visited Karl and looked for the girl he knows from graduation. I actually connected with her dad on a website and we found out that our kids both did the Sloan graduation and then we connected the kids. Cody wants to meet her. She lives in NJ but hopefully we can see her the next time we are at Sloan which is this week on Tuesday. On Thursday we went to our good friend, Dr. Pliskin to take a look at Cody's toe. I had a feeling he would need it cut and he did. Dr. Pliskin gave him a few shots in his toe which were pretty painful and then he cut the nail. We called Sloan first and spoke to Dr. Boulad to make sure if was a go and he is just so awesome. Cody had some pain later in the day and was upset about not working. He did try to go to work on Friday but it was 100+ degrees here and he called me about 30 minutes after he was there. I brought him his anti nausea meds but he really just did not feel well so he came home. He felt really bad because he wanted to work. He is really trying. We went there yesterday and he told them he feels better. I am so proud of him and how hard he is trying to get back to some kind of a regular life.

We talked to Casey yesterday and he sounds amazing. I am so happy each time I hear his voice. He was talking about Cody coming there around Christmas-to Savannah. I think it might be good for Cody to go visit him. I am not sure when I will get there but maybe in February. I really miss him. When we talk about Cody and his care, I realize how far he was during all of his treatment and scary times.

To all my NYer's, stay cool.

July 18, 2011

Monday-Great weekend!! We went swimming on Friday and Cody finished the camp. Then Saturday we went to the Islanders scrimmage with the new players. A few of the people that work there came up to him and said how well he looked compared to that awful night back in the spring when he was whisked away by ambulance. That was the night he ended up needing blood because of a medication. So we watched the game and then got up early Sunday for the mini rally, the pirate run. It was a long day and fun. Cody loves that car and he enjoyed being around all the others that love their cars too. I am working on him and helping him to make new friends.

We got tickets to a Yankees game for August. We get to have a special dinner there, go in the dugout and have great seats. Cody wanted to ask "Neighbor Bill" from the race track. He is a Yankee fan. I talked him into asking his friends Ben and Tom. He needs to be with kids his age. Ben can go and we are waiting to hear if Tom can go. It will be a fun night.

He feels good, acts so silly and he looks good too!! Thank God.

July 14, 2011

Thursday-So Cody is doing the rowing camp this week at Dowling. He is doing well. He is the front guy in the boat screaming out the commands. The crew rows backward. I think he likes it. He missed today to catch up on his sleeping. We went to Riverhead Aquarium today. It was beautiful out there. We took a boat ride and had a great time. It was a really nice day. Tomorrow is the last day of camp this week and we are going swimming afterwards at my friend's Corinne. I know Cody will be exhausted but he will catch up on Saturday. It has been a great week!!

July 10, 2011

Sunday-Cody is doing so well. He jumped on the scale tonight is 50 kilos!! He is thrilled. He is really eating and we are working on the drinking. We talked today about how he needs to drink more so we can get ready of the g tube. Yesterday he went to a graduation party for a little while. I am glad he went but he was bored and came home early. It is hard for him to get in with his friends. I know he will make new ones too.

We went to a mini club meeting today. We met some nice people and will do a rally with them next weekend. It sounds fun and we just need to meet some new people too. Tomorrow Cody is attending a half day camp for rowing at Dowling. He is pretty excited and is driving out there alone. We met with the coach last week and I feel better about it and I think he will be ok. He needs to get into something for sure.

All is good. I have been thinking about the McGowan's this week. It is already a year since Dina passed. Tough time but they are getting through. Extra prayers out to them.

Have a good week friends.

July 3, 2011

Sunday-Things are good. It is the weekend of the 4th and Cody and I are keeping busy. We got a call from Casey yesterday which was awesome. Cody started back at McDonald's this week and he loved telling his brother about working. We ended up going to Riverhead Raceway and we watched fireworks there. It was definitely an experience. Today we just rode out east and did a lot of nothing. It was crappy weather here so hoping tomorrow it is nicer.

We booked our tickets for Casey's wedding so we are looking forward to that.

Happy 4th to all!

June 29, 2011

Wednesday-So we had a great report at the drs yesterday. Cody is very slowly gaining weight and we will continue the feeding tube to get him over the hump of his pre transplant weight. He is not officially off his steroid which is HUGE news. We have stopped his acyclovir and hope he does not develop chicken pox or shingles. (20-30% chance). Dr asked us to stop the anti nausea med too. There is really no need for it. He did well last night and today without it. He also began his immunizations. He is getting shots like newborns do now. Crazy. Today he went back to work at McDonald's. I am so proud of it. I went through the drive thru to get an ice cream and just to see him. It was so good to see him there and he seemed so happy. This will help him in a lot of ways. He worked just 3 hours and he will do that again tomorrow. His back was hurting a little but he did it.

We are hoping to hear from Casey again..missing him like crazy!!

June 26, 2011

Graduation day...it was a super day and full of emotions. The whole weekend was.

Friday night was prom for Cody. He did great and looked even better. He made it through all of prom and went to after prom for about an hour. The drinks and whatnot came out and he was done. I picked him up around 12. I went to dinner with my brother and we went to listen to my fav band, That 70s band. It was fun. Cody was pooped. On Saturday we went to Chinatown and had fun there. Then to dinner again. Then today, we were up nice and early for graduation! I am so proud and so emotional right now. It was such a HUGE accomplishment for him. He did not think he could do it and he did ! I could not be prouder. I wish Casey was here! Missing him and it was nice to have Nicole here too!! Love you Cody and Casey...xoxo

June 20, 2011

Monday-Today was a feel good day. A good friend from worked organized a dinner for the Ronald McDonald house in New Hyde Park next to Schneider's Hospital. It was amazing. Cody went with Nicole and got there before me and helped out with the prepping and cooking. It was a nice time and good to see so many of my SH peeps there. We stopped at Mc Donald's on the way home and Cody is going to start working again, slowly. He came home and tried on the clothes and is very excited. It has to feel good. I am proud of him.

Today was also the airing of the Sloan graduation, nationwide! There were several glimpses of Cody and his dr was on. It was cool!!

Looking forward to my brother coming on Friday. Good to have that family time. I think I need that more and more. Looking forward to that and to the last few days of school!!

Here is the link for the Today Show: Cancer survivors beat the odds, graduate high school

today.msnbc.msn.com

June 14, 2011

Tuesday-Well, the car is here! I did not think Cody was going to make it through the day. It is a nice car and a little scary too. He does better when I am not in the car. I think it will help him become more independent too. He is a little nervous but I think he will do ok with it. Now all we need is graduation!

June 9, 2011

Thursday-Well, today was an emotional one. After telling everyone about the graduation from Sloan and then seeing Cody's yearbook. Our good friends, the Reiser's did a whole page for Cody. They did a collage of photos of their son, Jimmy and Cody. They played soccer together since kindergarten. I saw a photo of Cody actually playing and that made me very upset. It has been a long time since he played. I remember his last indoor game like it was yesterday. It was the Wednesday before his diagnosis on a Sunday. He was not playing well and his teammates were yelling at him to move faster. He was winded and had trouble running. Little did we know how sick he was. And look how far we have come! I am so proud of him. One of his classmates wrote a quote and wrote Cody's initials underneath it: "We all take different paths in life but no matter where we go, we take a little of each other everywhere". Thank you, Jess Golden.

Cody is excited about his last day of high school tomorrow. It is bittersweet. He never thought he would get there and he did it! I could not be more proud of him!

June 8, 2011

The photo is Cody and his miracle worker, Dr. Kernan.
Graduation day at MSKCC. It was a really nice ceremony. The kids are amazing! Cody did really well. He had some family there from his dad's side and Nicole came too. I am so proud of him.

He saw lots of drs and nurses and NP's. It was a nice day! He has 2 more days of high school left and then he graduates on June 26! Busy few weeks for sure!

Missing Casey through all this. I know he is proud and smiling seeing his little brother graduate. I miss him!!

June 4, 2011

HAPPY RE-BIRTHDAY to Cody. Two years ago today he received his stem cell transplant. He is a fighter all the way!! It has been a tough 2 years and hard in so many ways, but look at him now. Graduating with his class, prom, driving and Dowling College. The drs at Sloan always gave us advice and when things were tough, Dr. K said, "In a year from now, you will not be worrying about this." She is so right. We worry about little things, piece of cake kinda things. Tough any way you look at it but it is all great in so many ways. Now I need to focus some energy on my soldier. He needs to get HOME! He is having his wedding in October and we need him home!

Thanks for all the support!!

May 31, 2011

Tonight was HSE's award night. Cody got an award for 'overcoming obstacles and challenges' presented by Steve Stern, Suffolk County legislator. Then he received three scholarships. I am so proud of him!! Nicole came and so did Margo from work. I was glad to have them both there.

Been a while since I updated but that is all good. Cody is doing well!! Other than occasional nausea and dry skin, he is good. We rode bikes this weekend. He goes about 3 miles and does it with ease. He is getting stronger every day. He is eating better and feeling good. I will continue my job on helping him to gain strength and gain some weight. He is my hero!

Thanks for all your continued support and prayers!!

May 20. 2011

Friday-So the MRI was negative. There is some sinus issues there but no evidence of virus, thank goodness! That is a relief. Nice way to end our week.

Heard about a few sick people this week so sending out some extra prayers. Those that are involved are very close to me and it is their parents. Hoping they find the strength to make these tough days ahead a little easier. Love you, Roy.

Long week and looking forward to a quiet weekend.

May 19, 2011

Wow, I cannot believe how fast May is flying by. It is such a busy time too. We just went to the pre prom meeting tonight. They really try to scare the kids with the drinking and driving issue. They scared me so I hope it works. I have been talking to Cody. I do not feel like he will have a good time going to the Hamptons with everyone. He will not be able to drink and I really think he will be bored. I have it worked out so he can just get his car after the prom and come home. I am hoping this is the case so he will not need me to come get him.

He has been feeling pretty good although today he did not feel like eating lunch. He did eat dinner so hoping it was just a fling for today and passes. He gets so worked up over it and feels so bad. He really worries about things quite a bit and I understand this.

Little Matisse is doing ok. He gets little setbacks but is doing well.

May 14, 2011

Saturday-Great news yesterday! The biopsy is clean! Coming down even more on the steroids which is awesome! He is really doing well and I am so happy!

Today we went to Sloan for his MRI of his brain. They are checking for any inflammation from that dreaded virus which they are thinking might be a source of his nausea which is gone now. Isn't that the way it works? He did well and went in alone and had it without me sitting next to him. He took his valium and came out goofy but he did it! I am so proud of him. He is really trying to be 18 and to take things into his own hands. He gets to sign all of his consents which makes him feel grown up too. We came home and napped and are just chilling here tonight. Weather is kinda yucky so just staying home. Hope everyone enjoys their weekend.

May 14, 2011

Saturday-Great news yesterday! The biopsy is clean! Coming down even more on the steroids which is awesome! He is really doing well and I am so happy!

Today we went to Sloan for his MRI of his brain. They are checking for any inflammation from that dreaded virus which they are thinking might be a source of his nausea which is gone now. Isn't that the way it works? He did well and went in alone and had it without me sitting next to him. He took his valium and came out goofy but he did it! I am so proud of him. He is really trying to be 18 and to take things into his own hands. He gets to sign all of his consents which makes him feel grown up too. We came home and napped and are just chilling here tonight. Weather is kinda yucky so just staying home. Hope everyone enjoys their weekend.

Wednesday, May 11, 2010

Glad today is over.

Yesterday Cody went to NYC for his appt via car service. He did well and signed his own consent forms for his procedure today. He felt proud I know! His potassium levels were off but with some hydration, he was fine. As a result of that and from today's numbers, we are adding fluid to his tube to get an extra liter in.

He did well today with his endoscopy. The surgeon, Dr. LaQualia said it all looked fine inside and asked why we needed to do this. We still have to wait for biopsies to come back but it looked good. His fistulas are healed which says a lot. He is making his own b and t cells which is also a good sign. I feel very relieved and know this great path will continue. We had a long day, with getting up at 4:30am. We both napped today and are pooped tonight.

To be continued....

May 10, 2011

Monday-Happy Mother's Day! I had a great day. It started on Thursday when I got flowers from Casey and Nicole. It ended late last night with a phone call from Casey. So happy he called even though I was out of it. Cody and I went to Belmont racetrack for something different to do. We walked in and did our $2 bet and Cody won $11 on the first race. He is that lucky! We made tacos for dinner, his choice and called it a day pretty early. It was a nice day. Wish Casey was here but so happy he called.

Cody has a busy week. He is having an endoscopy on Wednesday to check for any inflammation. The drs are worried about him not gaining weight. He is maintaining his weight but not gaining. I am worried too but I think this is just him. We shall see on Wednesday. They are hoping that is there is anything wrong that it is not GVHD.

On Saturday, Cody is having an MRI. The nausea has gotten better but is there a little bit. The drs want to check out his brain to make sure that virus is not visible. Again, I do not think this is the case but just need to make sure.

He feels great and looks great too! That is what I base it on.

With that, have a good week everyone!

May 3, 2011

Crazy days and busy ones. We have been busy doing the college thing and car shopping. Yesterday Cody took a car service to the city for his appt. He did well and Uncle Jim was there to help him and to sit with him. He went to lunch with Jim and decided he wanted to take the train home. Jim got him to the subway and at that point Cody felt nauseous and dizzy. Not sure what is going on but an MRI is scheduled for the 14th to check his brain. He had a good visit other than not really gaining weight. He is not losing but not gaining. The drs ordered an endoscopy just to make sure there is no GVHD. This is all upsetting and scary for me. He seems really good in every other way. I am praying it is all just a precaution. Not sure if this is the pattern and what we can expect but it is tough.

We have been chatting online with Casey and he did call for Cody's birthday too. Yesterday we heard of Bin Laden murder by the Navy Seals. I can imagine how they feel over there. I pray for everyone's safely and peaceful return.

Nite all!

April 27, 2011

HAPPY BIRTHDAY to my baby! Cody is 18 today! What an accomplishment. Where did the time go? He woke up with a smile and feels pretty good about himself. He went to school as usual and had a great day. He wanted to go to Gasho's tonight, the hibachi place. It was nice, just he and I went. He is such a mature young man. I am praying tonight REALLY hard that he passes his driving test tomorrow. We went driving tonight and he is really nervous. I hope he holds it together. We got a call from Casey today too and that always makes us both smile. He sounds great!! I actually started looking at 'mother of the groom' dresses for his wedding in October.

On Monday of this week, Cody and I went to Dowling and registered for his classes. He is thrilled! I am hoping for a smooth transition for him.

We spoke to Uncle Jim and little Matisse was admitted last night with a rash and a fever. Doesn't sound like much but hoping he gets home and soon.

I heard a sweet story today from a colleague of mine. I have worked with her for all of my time at SH and she has told her daughters about Cody. They knew him from his visits to SH years ago. Anyway she said her girls were praying in church this past weekend for Easter and her youngest made sure to say, 'don't forget to pray for Cody'. It brought me to tears. There is some power up there. Not sure why these things happen or why these things happen to certain people and I am sure I will never know. But I do know, it makes us all stronger and there is power in groups and in praying. God Bless and Happy Birthday to my boy!! Love you lots!

April 24, 2011

Happy Easter! Well, we did it. We survived a trip to FL and there were no complications whatsoever. We had a good time seeing the family. I enjoyed my early morning beach walks and relaxing and Cody enjoyed sleeping in. He caught his first fish, matter of fact he caught 5 and no one else did! He was so excited. He got to swim in grandpa's pool and saw all of his grandparents. He played with his cousins and loved his time with Uncle Roy. We saw Roy in a SWAT competition and Roy is a great shooter. His team actually got first place! We were all proud. I got to see a few old friends from high school. We went to a tiki bar and had a ton of laughs. I spent some time with my buddy Gregg and it was nice to see him again. I had a birthday dinner with the extended family on my dad's side. The highlight of that day was getting a call from Casey! I miss him. It was the first time Cody was down there without him too. It was a fun time and I really miss south FL. A lot has changed but I do have the urge to go back. Always good to get home and so thankful for being off tomorrow. Heading to Dowling to get the loans and classes straightened out. Busy week with Cody's bday on Wednesday, BIG 18 and he is taking his driving test on Thursday. Hope everyone enjoyed their Easter and Passover holidays!!

April 18, 2011

Monday-So today we had our visit at Sloan so that we can be all cleared for our trip to FL tomorrow. We are flying down till Sunday. I think Cody is nervous but he will be fine. He has been enjoying riding his bike and is doing well. He rode 4 miles the first day and it took him a day to catch up. It was a lot. Today he did 2 miles and that was more his speed. He got a great report at the hospital and just a small concern with the nausea. They wanted to maybe do an MRI to make sure there is not swelling in his brain. He is nervous about that for sure but I do not think that is the issue. He ate better today and was upset that he lost a little weight. He will catch up. So flying out VERY early tomorrow but will be a nice few days in the heat.

Happy Passover and Happy Easter to all. oxoxoxo

April 13, 2011

Wednesday-Today was Cody's MAKE A WISH! He got a sweet bike and tons of accessories. My friend Moira came with us. Cody got fit with pedals, helmet, clothing, shoes, etc. He had a blast. We went to dinner in Huntington and had a great time even though Cody did not feel like eating. He had a great night. Thanks to all of those at Make a Wish for all your patience and support. Thanks to Bill at Cycle Fast for all your help!! Fun night!! Love you, Cody.

April 12, 2011

Tuesday-So we had a few rough days with Cody getting sick on Sunday but we are hoping it is just a reaction to stopping the sirolimus. He feels much better after a day of rest on yesterday. He went to school today and is just dealing with some sick rashes. Hoping we get the right cream for that.

So I was just sitting here tonight and looking through the photos of the past few years. I keep trying to look and see if there were any signs of Cody getting sick. Back in Sept. 08 when we were in GA for Casey's bootcamp graduation, I know that Cody was sick. I actually took him to the dr in GA and he got an antibiotic. He was more tired and continued to be crankier than normal but who would know? Aren't most teens like this? The past 28 months have been full of pain, emotions, questions, and uncertainties. I am full of worry and I hope some day this too will be behind us. I don't want to worry any more. Tomorrow Cody is getting his wish for "make a wish". What an amazing foundation. We found out the hard way how important foundations like these are. The Ronald McDonald house is another one. We are going to the bike store and he gets a shopping spree. He is getting a racing bike with accessories. We are getting picked up in a limo and then to the store then out to dinner. Our friend Moira is going with us. She is the one that keeps our dogs for us and with her, we would not be able to have our pets. It will be a fun night but sure makes me reflect back. It brings me to tears but so glad we have come this far and that Cody remains to be cancer free. I will keep praying. Thanks again to everyone who reads this and for your continued support. We love all of you.

April 8, 2011

Wow, this week flew by. Today was a HUGE milestone for Cody. He took a car service into the city and went to his dr appt. His Uncle Jim met him there but he did most of it by himself. I am so proud of him! And he was told he could discontinue the anti rejection medication! This keeps him from being allowed to eat strawberries and cold cuts. He is thrilled!! We are moving along. We went to the last home game for the Islanders. The lost in a shootout. I am off to bed. Long day and Cody is doing his 5 hour driving course tomorrow. Sweet dreams all!!

April 5, 2011

SO home now and it was a short stay. We stopped the linezolid and there was not any nausea while we were inpatient, thank goodness. I think we have it under control. Cody looks great and feels good. He went to talk to a patient about gtube placement and he did really well. We got to see Matisse yesterday too as he was there for more chemo. He is doing well too. We got home around 6 last evening, got settled in and went to bed early. Cody decided to stay home today and I should have stayed with him. I am dead tired. It was a very busy day back at work. We got the dogs back. We went to dinner with Moira and just are so thankful for her. The dogs do well there and love her and her pets. We are very lucky to have her. And Cody got to ride in her mini cooper so he was thrilled! So just worked on report cards and getting into bed here shortly. It is almost 9pm and all is well here. Back to school tomorrow for Cody. All is good here on Piermont!

(One pic is of Cody and his cousin, Matisse getting ice here in cafeteria at Sloan and the 2nd one is one of the units of blood going in.)

April 3, 2011

So not great news. Here we are back at Sloan. We had been adjusting Cody's feeds and trying to make it so he is not nauseous in the mornings. So the plan for Saturday was to run the feeds Friday night till around 12 and then see how he is in the morning. He woke up without nausea and we started the feeds again. He looked and felt fine. We had a full day and he ate lunch, took a nap and did a driving lesson. Then we went to the hockey game. He seemed a little tired but had a few busy days. We took the walk down to the locker room after the game. We were standing talking with Josh, his player and he asked to go to the bathroom. He did not have to go but did not tell me this, he needed a place to sit down. He came out and was white and said he was dizzy and that he needed to sit and kinda collapsed in my arms. Josh scrambled for a chair for him, then Ann, our good friend there, called the paramedics that were still there. We got Cody to a chair and checked his pressure which was low. I called Sloan and he was in the ambulance being transported here. They had to put an IV in while in transport, his pressures were not good. Once here they did bloodwork and his hemo was low and platelets were a little low. We were in Urgent Care till around 5am. He got some antibiotics and a stress dose of steroids. We both tried to sleep and got a little but then go to the room and he needed a transfusion of whole blood. No reactions, thank goodness. It has been a long time since he needed it. So I am sitting here now, waiting for the drs to give us the plan. I will be back later...

March 29, 2011

Wow, it has been 9 days since my last blog. Cody had an appt last week at the kidney specialist. All is good, urine is free of protein so his body is really working hard. All good. We stopped in to see his cousin as he was being admitted with a fever. It is good to be there and to see everyone. Cody is gaining weight and feels great other than an occasional bout of nausea. We booked our tix for FL!! We go 4/19. So happy about that. Cody can swim in my dad's pool but not in a public pool and not in the beach because of the feeding tube. Def looking forward to some warm weather. We are winding down the hockey season and will go to see the players this weekend. I love surprising Cody at the game. The look on his face is priceless when I tell him.

All in all, things are good.

We heard from Casey the other night. It was a short call and he sounds good. His lips are chapped, poor baby and he asked for chapstick. I sent one box over and my school did a great job of donating some goodies. I will send another box over this weekend. I am waiting for another call and hope he continues to be safe and do his job and get out of there.

March 20, 2011

Well, I did not book the tix for FL, well, I did but booked them wrong so got a refund, thank goodness. Just waiting till Tuesday and hoping the prices go down again. The rest of the week was quiet. I went to a fundraiser for a friend that passed away this summer. My friends came and it was a fun night out. Cody did well and did all his pills and hooked up his feeds. We did not have any hockey games to go to this weekend so we relaxed. I was not feeling too great on Saturday night so taking it easy. Hoping it just passes and does not actually develop into anything. Busy week ahead. On Wednesday, Cody has to go back to the kidney specialist so I am taking a half day to take him. It is right near his uncle's so I guess we will stop in to see his little cousin who is doing well. He is responding well to his chemo, thank goodness.

Hope the weekend was a good one for all...good night.

March 16, 2011

Wednesday-Good day...just booked tix to FL for Easter break. It has been over 2 years since we have been down. So excited just to get away for a few days. Cody is nervous about it but will do fine. I know he will. It will be our first step in getting away.

He had a good visit yesterday. He gained weight and the dr noticed that he is working out too. He was proud of that. He is still feeling nauseous but I really think it is more anxiety related. He was not nauseous all weekend and then it hit him Monday morning. We tweaked a few meds and he was much better today. He is doing well. I am happy. He may not need to go back till April 5th is the weight stays up. Nice job Cody.

We have been seeing and chatting with Casey on FB from time to time. He sounds good. I got a lot of donations from some of the teachers so I am sending a box out real soon. I hope to have a few boxes to send. He will be happy to get those handwarmers.

Looking forward to tomorrow, St. Patrick's day and going to a fundraiser and going with some great friends. I have not been out in so long with these guys so it will be a blast, I just know it. Getting up for work on Friday will not be so great but I will do it.

Have a good night everyone!

March 13, 2011

Sunday-it was a quiet weekend for a change. We had tons of running around to do and did not get to the yard work..oh well.

We went to the hockey game on Friday and after Cody's tough week, I asked our girl if we could come down and just say hi. Cody did not know until we were in and watching the game. He was so cute, saying he got butterflies. We saw Josh, his player for a few minutes and had a nice chat. Then the other fav player, Gillies was there and welcomed Cody like an old friend. Such a good guy and a good looking guy at that. Cody was thrilled and it made a rather crappy week, end well.

He made arrangements on Saturday to test drive a mini cooper. It was fun and I do hope I can work it out to get him one. It looks like he is not getting much help from his dad so as usual, I will do what I can do to make something happen. Today was more running around, haircut for him and just doing some cleaning out again.

We got a few emails from Casey and he is asking for goodies. We were hoping to get a call today but guess he ran out of time. Maybe tonight..... Looking forward to an uneventful week.

March 11, 2011

Thursday-Well, I now have a son overseas. Casey left last night. I spoke to Nicole today and she said she dropped him off last night. I thought I was ok but it was tough to hear it officially. I know Cody was upset too. We pray for his safe and fast return.

Cody is focusing on getting a car. He is obsessing over it to be honest but it will all work out.

Both of us are really tired tonight and looking forward to the weekend. Night all.

March 8, 2011

Tuesday-Long day at work but all is good otherwise. We decided against the hockey game, the week night ones are too tough. Cody joined my gym so he and I went and worked out. It was good. It really wipes him out but he loves it.

Cody's cousin is doing well and responding. His counts are coming up and he is home.

All in all, a good day but a long one.

March 6, 2011

Sunday-Crazy weekend, ups and downs. We had the hockey game yesterday and it was fun. We always have a good time there. The weather was nice so Cody was out helping his uncle work on his car again in the morning.

I had a dinner date and it was great. I enjoyed myself and all in great company! Stayed out till 12 which was a first for me, at least in the past 2 years.

Today was the down side. We did not go to the hockey game. Cody said he could not sit through the game knowing we were going to the wake afterwards. So we went early today and drove to Yonkers. Cody drove the whole way too. There was a line to get in to see Ralph and I tried to prepare Cody but as soon as we turned to get into the room, there he was. His brothers were up there and they were so upset, understandably so. Ralph's mom was so glad to see us and a cousin came up to see Cody. We walked closer and one of Ralph's brothers took Cody in his arms and was giving him this huge pep talk. It broke my heart. Cody stood there and did not say a word just stared at Ralph. It was the first time he saw a body. Ralph's dad saw Cody and lost it too. It was really hard. We did not stay long, it was crowded and uncomfortable for Cody. It was raining when we left and the walk back to the car was kinda nice. It was a quiet ride home but we are glad we went. My prayers go out to his family. I do not know how you go on without someone missing. Cody always checked for Ralph when we went to the hospital. He will missed and the peace is knowing that he is not suffering anymore.

Say a prayer for Casey. I am pretty sure he is leaving tomorrow to head overseas. I miss him already and pray for his safe return.

March 4, 2011

Friday-Well, Cody surprised me and went to school after his ordeal yesterday. He felt fine. We got good and bad news. The good news is that his cousin, Matisse is coming home tonight. His counts are up and he is doing well and strong enough to go home. We continue to pray for Matisse and hope he continues his strong path. The bad new is that a family we became friends with, especially Cody and the young man, passed away. Ralph was 23 and endured 3 transplants from his brother and his leukemia came back and reached his spleen and his spinal column. He was a fighter and had 15 months in remission. I feel so bad and it was heartbreaking to tell Cody. He went in to see Ralph on Tuesday which I really did not want him to do but I was not there. Cody wants to go to the wake and we will do that this Sunday. We have a hockey game on Saturday and on Sunday, both during the day so it will keep him busy and occupied. It is really sad when this happens. We are too close to the disease not to be affected and not to be afraid. I cannot imagine what goes through Cody's mind. I pray for the Califano family.

March 3, 2011

Thursday-Well, yesterday was good until the evening rolled around. Cody was complaining that his g tube was hurting. I looked at it and was oozing and red. I started emailing the dr and she said to start him on another antibiotic and plan to bring him in tomorrow. Well, this created a lot of anxiety last night. I knew that the tube would need to be changed and Cody was freaking. It does not appear to hurt but it is very uncomfortable and makes you feel squirmish. He insisted on stopping his feeds at midnight so he could be put out today to do it. I did not do that as he could not be without any food or fluids for over 12 hours with any IV going. The plan was set for him to go in after school today since he did not want to miss it. So his dad picked him up and took him in today around 1:30. Well, from what I heard our favorite NP talked him into some valium and tried to change it. It came out but the new one would not go in. It was sore already so this only made it worse. Once it is out, it can start closing up right away. So he was whisked away to the procedure room and got anesthesia to put a new one in and thank God it was all successful and working. Long and emotional day and I was thinking I should have been there. I was pretty stressed from last night so maybe it was better I was not there. The bottom line is he got through it and we will make sure it gets changed when it needs to. He got a stress dose of steroids tonight and I will do it all again tomorrow and he should be fine. He is having dinner with his dad and I am looking forward to the end of a long week. TGIF!! We have a busy weekend with 2 hockey games and I actually get to get out on Saturday night...whoo hoo!

March 1, 2011

Tuesday-Wow, March already!! Crazy.

Cody was up nice and early and took the drive into the city for his long day with his dad. He did well and the one thing that I asked was that he not go see his friend, Ralph. Well, he saw Ralph's mom and he went to go see him. Ralph is the 23 year old that received 3 transplants from his brother and he is dying. Very sad and upsetting. Cody said he looked bad and he was upset tonight. On a good note, he got a great report at the dr. He is making his own antibodies and if he keeps it up, he will not need the IVIG (blood plasma product) anymore. He might be able to start getting his immunizations in 6 weeks if he keeps up the good work. He looks great and feels good although he is worried about what he saw today. His cousin Matisse is still there so he visited him too. We are waiting to hear how his biopsy went from yesterday.

All is good here, just tired. Say an extra prayer for Ralph. I pray that his family gets through this and that he is no longer suffering or in pain.

Night all.

February 27, 2011

Sunday-Quiet day and a nice end to the winter break. I wish I was somewhere warm but then it would have been hard to come home. I have been doing a few things here and Cody is just relaxing. He needed the week off for sure. He spent yesterday with his Uncle Jim. He came out to work on his car. Cody actually helped him put new brakes on and we went to lunch. Today we just ran around and are ready to go back to school/work. We are waiting to hear from Casey. We talked to him today and we know he is leaving to go overseas within the week or next week. His friend Preston is already there and we are putting together a box to send over. It is so hard to get a grip on this but I know both of them will do the right thing and will come home safely. Keep them in your prayers.

February 24, 2011

Thursday-Today was a long day but a good one. We took a ride to see Matisse. Cody wanted to spend some time with him and not be rushed. Matisse's other grandparents were there but Cody got to play with him. I went to donate blood with Jim, Matisse's dad. Then Jim, Cody and I went to have lunch. Cody actually ate lunch which was impressive. He saw some of the drs and team there that he has not seen in a while and everyone was so glad to see him and commented on how well he looked. He snoozed in the car for a little one. He really feels close to Matisse. We took a walk around the mall. Cody has decided he wants a new IPOD since he gave Casey his ITouch to take overseas with him. We shall see.

Quiet night here at home and watching American Idol with Cody.

February 23, 2010

Wednesday-Everyone left and Cody and I are chilling. We got up at 4am to say goodbye to Casey and Nicole. It was hard to say goodbye. I know he will be safe. I will be counting the days till he is back on US soil. Today I spent the day cleaning up and then Cody and I went to the gym. He is deciding whether or not he wants to join. It is really a tough workout for him but he does it. It is fun for me to have him there. We have a good time together. Tomorrow we are going to the city to visit Matisse. His first biopsy was not too promising but he has time. Another week and they will check him again. Cody wants to just hang and play with him. Heading there for tomorrow.

Hope the week is good for everyone.

February 21, 2010

Monday-Hockey game was awesome!! Not only did they win but we had the perfect veteran salute for Casey and Roy was picked to do a trivia game. It was so fun. The kids had a good time. We have been busy with everyone and it has been fun. Cody's uncle and cousin came from PA and then all of us so we had a huge crowd.

Cody has been able to keep up and hang with everyone. He is tired at night but is doing well.

Good times....

February 17-19, 2011

Fun few days...my brother and family got in and been busy ever since. My nephews will not leave Cody alone. So cute. Saturday we all went into the city and stopped in to see Matisse and then to the Museum of Natural History. Everyone had a good time although it was a little too cold and windy. Cody did well and walked a lot. He is passed out now and I am sure he will need to sleep a loooong time in the morning. Casey and Nicole are with us tonight and are off to a late movie. Not sure what the plan is for tomorrow but looking forward to the hockey game on Monday and for the Veteran salute to Casey. I know I am proud!

February 16, 2011

Wednesday-We got some great news today. Cody is allowed to dorm at Dowling in September. He is so excited!! I have to get the application for residence in. Very exciting. Not sure I am ready for this but I am not preparing myself.

We are excited about the family coming tomorrow.

Tonight we ended up selling the sugar glider to the guy that cuts my hair. It was a lot of work and we just did not have time for it. It needs a lot of attention. Cody was ok with the decision. Trying to keep him distracted. All good!

Have a great day!

February 15, 2011

Tuesday-Well today it was confirmed. Matisse has the same ALL that Cody has but with a B cell type while Cody's was T cell. His prognosis is good and he is getting the best treatment possible. He is at Sloan and using the hematology team there. He has all of our nurses and Cody and Casey went there today for Cody's appt and they saw Matisse too. Cody got a great report and some meds were decreased and even more were decreased tonight. So happy for him. It was good for Casey and Nicole to see this and to meet everyone. We went to dinner with Nicole's parents tonight and got a few laughs. It was a good day. Include Matisse in your prayers.

February 14, 2011

Happy Valentine's Day. Not much of a holiday for me but glad that Casey and Nicole enjoyed their evening. It was nice of them to come visit me at work. The kids were so excited and loved seeing 'an army guy'. He wears that uniform proudly. He looks great too.

Little Matisse, Cody's cousin has his biopsy today and his first round of 2 different chemos. He did well and also got his temporary line put in. He is a sweet one. My heart breaks to think of him going through this.

Hope everyone enjoyed their days...

February 13, 2011

Sunday-Today Cody popped out of bed at 8am. He was up and showered and ready to go see his cousin. We went to get a few presents. He also wanted to see another boy, Karl that he had met. We unfortunately saw another guy he knows, Ralph and he is not doing so well. Matter of fact, his leukemia spread to his spleen and now there is nothing left to do. He looked horrible. He is 23 and his family was there. His mom found me and she was a mess. I did not tell Cody. They are taking him home and it is just a matter of time. Awful.

Cody's cousin, Matisse is 3 and he was sleeping when we got there. He woke up and was feeling pretty good. He is going to have his bone marrow biopsy and spinal tomorrow. He is getting a central line in. I would imagine they will start chemo in a day or two. Just so sad and so unfair. I had to offer help today to get bloodwork for him. He was not a happy camper. I was sitting with him and he was complaining that the tape was hurting his hand. He asked for the dr. He said "get the dr and ask them to fix it." He is just 3. So cute. Just pray that he has an easy ride and that he responds to chemo.

Long emotional and exhausting day. We went to dinner with Casey and Nicole. Off to bed and saying a lot of extra prayers tonight...

February 12, 2011

Saturday-Well today was great and then not so great. Casey and Nicole and pups got here!! It was soooo great to see them. The pup is cute and so far so good. We are the ones watching Emma, the new pup.

The awful news is that Cody's Uncle Jim called me. He is the uncle that has been a huge support for Cody and I through this leukemia battle. Very sad news. His 3 year old son, Matisse was diagnosed with leukemia today. So strange. Very upsetting to say the least. Cody feels awful and somehow feels like he caused it. He keeps asking if it is contagious. Now Casey is asking about the hereditary issue. I quickly sent out emails to our team at Sloan. Dr. Kernan, Cody's main dr asked me to call her. I quickly did and she took down some info and also called Jim. Jim knows most of the drs too. She was going to go see him but worked on her part and got him admitted to Sloan. She is a great person. We are going there tomorrow and Cody is allowed to visit him. We feel terrible but we know he is in the right place. We are waiting to hear on the type as to what the course of attack will be. We are so lucky to have to staff at Sloan and they are very compassionate people. Cody has been emailing a boy he met and we actually saw him do the puck drop a few weeks ago at a hockey game. He is in our old room at Sloan and Cody wants to see him too. He knows we may not be able to but he wants to get him a present. Very sad and so unfortunate. Not fair...

February 7, 2011

Monday, Tuesday and Wednesday went by...but this is a slow week. It is good that I do not feel the need to write every day. Unfortunately Cody has to stay out of school the rest of the week. Someone in the school has 5th's disease and it can cause his red blood cells to shut down so very dangerous. The good news is he does not have to go to Sloan this week and he does not need the MRI as his knee is much better. I feel bad that he has to sit home all day but it is just for a short time. I don't think he would have ever imagined he would be upset about missing school. He is trying to stay caught up. He can do it but with my help.

Casey comes Saturday and we are excited about that. Then my brother comes next Thursday with my sister in law and my nephews. We are looking forward to it!!

February 6, 2011

Sunday-Superbowl Sunday- Steelers against Packers. Cody and I are here watching. I did the pool at work and we are both hoping for a win...

Good day today although we did not do much. Long week ahead and it ends with Casey and Nicole coming in...with a new puppy!! Good times....night all.

February 5, 2011

Saturday-Hockey game tonight. It was a good game too. I am a little concerned that Cody is not drinking enough. Might have to run some fluids tomorrow. He gets mad at me too but he has to learn to drink more for sure. I am tired tonight so off to bed...night all

February 4, 2011

Friday-Cody got himself on the bus this morning. He came to my school after his. We did a childhood cancer fundraiser. It was a nice event. He hung out in my class and enjoyed the kids. Quiet night here at home.

Febraury 3, 2011

Thursday-Long day for Cody. He went to school and had his tutor at home after school. He did well, just pretty tired. Thank God tomorrow is Friday...

February 2, 2011

Wednesday-Good day at Sloan. I had a delay so got a few things done today. They are tapering meds and Cody called to tell me he spoke to a boy that is going into transplant this week. He felt so proud.

Last night before bed I told him how upset today. It was an emotional day for me, not worried just emotional. He knew I cried once I got back to work. He was concerned and wanted to know who was with me. I told him Mary and Corinne were there. Then he said he needed to be honest. He said he cried the day I went back to work. So sweet. No one can understand this connection or all that he and I have gone through. So proud of my boy!!!

February 1, 2010

Tuesday-BACK TO SCHOOL FOR CODY! He was up and ready to go before I left. The bus came at 10:30 and I was able to make it home in time to see him get on. He would not let me take a pic but he was pretty excited. I ended up balling my eyes out. He did not see it but I told him this evening. It is hard. I am very happy and proud and was not crying because I was worried. Hard to explain but it was a milestone and after two years, it was an emotional one. He will get to finish his senior year and be with his friends!! That I am very happy for! We were talking tonight and he said it was a weird feeling and he just kept thinking....finally! I cannot imagine what he was thinking on the bus ride. His friend Matt brings him home so that is good for him too. Tomorrow is a long day at Sloan and he is going with his dad. Things are definitely looking up!!