Dec. 31, 2012

Happy New Year.  As I sit here alone, my choice basically, I reflect back and really am thankful for what I have.  (Cody is in Canada visiting his dad and Casey is in GA.)  Cancer changes life in every way and it will always be different.  I know that I have a lot to overcome but each days gets easier. I do not constantly yell at Cody to drink anymore, for fear of dehydration which would land us back in the hospital.  It is there but it gets easier somehow.
We are trying to get to the bottom of his eye issues.  They are drooping and basically all tests are normal.  He had neurological testing last week and there is some nerve damage in his feet from the chemo but the eyes are good.  So we are looking into cosmetic surgery to lift the lids.
I am trying really hard to help Cody in the social world.  He has been out of it for a long time and it takes time getting that back.  He commutes to school so that does not always lend itself to the best of friendships. It will come, I know.  I help where I can.  Time...
Please keep my friend's niece in your prayers. She is battling a rare form of bone cancer and getting some strong chemo.  She is a sweet girl and having a very tough time.  Add Meghan to your prayers.  Thank you.
For now, Happy New Year.  Stay strong and healthy my friends.  Don't forget to add Casey to your prayers too, he deploys again in the upcoming weeks.

4 years, Dec. 14. 2012

I cannot begin to explain this feeling I have.  I woke you up this morning to see a HUGE smile on Cody's face.  Four years ago we spent this day at Huntington hospital only to end up at Schneider's with a leukemia diagnosis.  This past year has been a good one for Cody.  I do not think there have been any overnight hospital stays and Cody has  been gaining weight.  I think our biggest concern is the drooping eyelids which bothers Cody a lot.  We are on the path to getting this fixed.  The school year has been a much better one for you and I am pretty confident he did good this semester. Unfortunately there has been a huge tragedy here in CT.  A gunman went into a school and killed a large number of kids and teachers. It is unbelievable.  Very scary and sad to say the least.  My heart hurts for the families and teachers affected.
With that, I leave this blog with Cody's facebook post: 4 years ago today i was told that i has leukemia. And to think it would lead to a stem cell transplant, feeding tubes, brain swelling, and make my blood type change is crazy! 4 years strong and Im gonna make it 100 more!!!

October 15, 2012
6.6 Pounds!!!  Need I say more???  Way to go, Cody!! Keep up the good work!

September 17, 2012

Good morning.  It is so nice to have a 4 day weekend.  The schools close here for the Jewish holidays.
Thinking of all my friends that celebrate.
We started off the school year on a good note.  It has been very busy but Cody seems to like his classes.  Well, most of them anyway.
We were looking forward to the 4 day weekend.  I persuaded Cody to come to a fair with me and "That 70's Band" was playing. Those who know me, know I love this band!  It was a beautiful day and I was looking forward to just sitting out by the beach and relaxing.  We got the fair and Cody ate sausage and peppers and a funnel cake.  About an hour later, we were heading to where the band was and he said he felt nauseous.  He was sitting on the beach and felt sick every time he stood up.  He asked for my help to stand so I knew he felt weak and was most likely showing signs of being dehydrated.  So I got him a water and a Sprite.  He drank some water but said he could not make it to the car and that he needed to go to the hospital.  He knows his body so well and he knew he was dehydrated or else the food made him sick.  So I told the guy in the Beach Hut that we needed an ambulance.  He called and in a few minutes one was there.  They loaded Cody up and pushed him through the crowd to the ambulance.  Once there, he vomited and it was a lot!  He was really embarrassed and felt he let himself down.  I went to get the car and made my way to the hospital.  He was there when I got there and they were waiting to do bloodwork and to hook him to some fluids.  We were at Good Sam in Islip.  They were all nice there.  We actually saw Joe from Spuntino there.  His son had gotten a bump on his head.  We were there till around 12, 4 hours later.  Cody felt much better so we made our trip home.   He asked to sleep in my bed so I know he was scared.  It is always scary to me when we do bloodwork.  His white count was elevated but not enough to alarm Sloan.  So it is Monday and he is doing better.  I know he needs to stay hydrated and drink more!  He knows that too!
Thank goodness that was all it was.

September 7, 2012
Stand Up 2 Cancer is on and I am sitting here crying, some happy tears for Cody and those surviving but so many sad tears for all those lost to this horrific disease.  Too many, too young.  
School started this week for me and Cody.  It was fun and tough being back in Kindergarten.  I do love the little ones but it is hard.  Cody did well and really likes his Science class.  I am proud of him and happy for him.  I just wish his social life would kick off!  
He is into setting up his saltwater tank.  He is very excited and is bugging me to help him.  He is trying to make some money but it is hard with his busy schedule.  Hopefully we will get something started tomorrow.  
Casey is busy with his new house.  He and Nicole bought one and are busy decorating it.  Hopefully I will get to take a weekend and go see the house.  I miss him!!  
Have a good weekend everyone and I will be back soon...thanks for reading!

Sunday, August 26, 2012

Wow, the end of August.  Crazy!
Today marks 7 years that my sweet Tyler passed away.  He was a former kindergarten student that died of a terrible inoperative brain tumor.  He is missed each and every day.

Last Wednesday we spent the day in the city at Cornell Eye Institute to try to get to the bottom of Cody's drooping eye issue.  After a 4 hour visit with a very good neuro-opthamologist, we still have no clear answers.  It could be this and it could be that.  After more blood tests and another visit in the next 4 months, maybe we will get some answers.  No worries, just yet.

We had dinner Thursday night with a friend of mine, Moira.  She is the one that takes our dogs and we have become even better friends now.  Unfortunately her sweet niece, Meghan was diagnosed with a rare form of bone cancer.  She had it removed but will be starting chemo soon. She and her mom came to dinner too and we talked a little about the medical issues and tried to ease some of her fear of chemo. It is not easy.  There is no way around it and it is scary.  I wish she and Cody would become better friends and hang but we can't force that at this age.  I pray for her and wish her luck in the upcoming months.  She is lucky to have her Aunt (and godmother) Moira.

Here's to the last week of summer 2012.  I hope it is a good one for all of us.  Enjoy the long weekend. Stay safe...xoxoxo

August 12, 2012

Well, Cody has been doing awesome!  He traveled most of the past few weeks.  He went to Canada to see his dad then went to TX for his cousin's wedding.  Then he came home and we flew to FL for a 10 day visit with my family. It was perfect!  Casey and Nicole met us there for a few days and we were so glad to see Casey after his stay overseas.  He looks good. He and Nicole bought a house so they had to go back to close on it.  I am so proud of him.  We stayed with Uncle Roy and Aunt Veronica and cousins, Christian and Alex.  Roy did a pig roast for us one night and we had a lot of fun.  We did the beach, snorkeling in the inlet, jet skiing on Hutchison Island and of course Grandpa and Grandma's 30th anniversary party.  It was a nice time and good to see my stepbrother and his little girl.  I also saw my nephew, PJ and met his wife and kids.   We had many dinners out and went to a little water park too.  It was a great vacation.  We spent the last day having lunch with my aunt and uncle and cousin and met their new baby.  It was a lot of family time but we also got to enjoy ourselves too.  We paid a special visit to the Botolino family.  I have been corresponding with Donna after my dad read me an article about them.  Their little Denali passed away in June from a long battle of pancreatic cancer.  It was nice to finally meet them and to pay our respects to the family.
On a lighter note, I also got to spend some time with good friends, Tracy and Gregg and also one of my cousins.  We had a great night at a Tiki Bar on the Inlet and laughed about old memories.  Good times.

I almost have Cody convinced to move back with me one day.  He has 3 conditions, he wants a surf board, a wave runner and college if he is not finished when we move.  We have a good deal here with college so will consider it once he is finished.  I really miss it and think I would like to move back one day.  I am actually kinda torn but think it is just an easier way of life.  Hey, my LI family would always have a place to stay!!

July 12, 2012

We had our visit to Sloan today.  Cody was anxious about it last night but today was prefect.  He did all of his tests, pulmonary, echo and EKG and then it was off to see the neuro team.  This is when I get nervous and our concern is his droopy eyelids.  He has always had the left one drooping but now the right one is and especially when he is tired.  The neurologist wants him to go to a neuro opthamologist to rule out a few things.  Then we can proceed from there.  Nothing seems serious, just concerning.  SO good news, more immunizations, his weight is up and it was good to see some of the doctors and nurses that we have not seen in a long while.  The head of the team was so happy to see Cody.  Everyone hugs him too which brings me to tears, happy tears though.  It brings it all back when you hear the head of the team say 'you really scared us kid'.  I will never forget what we went through but it is scary when you hear from the professionals how sick he really was.  It was a long day but a good one.
We stopped off on the patient side of M9 to see Meghan and her mom.  Meghan is the niece of my friend, Moira who takes care of our dogs when we could not, when Cody was inpatient.  Unfortunately her sweet 21 year old niece has a very rare bone cancer and just had her knee and thigh bone replaced last week.  Prayers go out to them as they await pathology results tomorrow and hope that the cancer was contained to what they removed. She has some of our old nurses and we got to see Nurse Liz today!  Meghan has her!!
It is an uneasy feeling to be back and causes me to reflect on all this. It is so sad and unfortunate and unfair when you see a child with cancer.  While we were talking in the hall, the stretcher comes out of a patient's room with the mom lying on it, with her child glued to her body and they wheel them down for some procedure.  VERY sad and hard to see.  No one should have to go through this.
I pray for  Cody tonight and that his great news continues.  I pray for Meghan tonight so that she may go home tomorrow and for all good reports.  For all others with this terrible disease, I pray.

June 26, 2012

So here it is summer, 2012.  Things are good, nice and quiet.  Let's hope it stays that way.
I was sitting here tonight looking back on the blog from 3 years ago.  Cody's friend, Lauren needed some info for a paper she is writing so I was looking back at my notes.  It brings me to tears to see what all we went through.  It brings it all back to reality.  Cody has still not read this but when he is ready, he will.  Some day...It makes me look at how far he has come too.  It is truly amazing.  He is amazing.  I wish I had half of his strength.  I continue to pray for his good health and for safety for Casey.  He is still overseas but due home soon.  Life goes on and on.  I just hope and pray we stay on this path...prayers to all.  God Bless.

June 9, 2012

Today Cody worked for the Islanders.  Well, he did his intern job.  He had a long day and was craving KFC wings.  So he was eating and he says to me, "I am loving life right now!"  It brought a tear to my eye.  He feels good, looks good and is relaxing this summer.  He has his first year of college under his belt.  He has his feeding tube out and gets to swim in the ocean now.  He has his car, his dogs and his family.  I guess he is right.
I feel kinda guilty writing all this goodness when I know a few out there not so great.  I pray for Denali, the little boy in FL that is suffering from pancreatic cancer at age 11 now.  He is really not doing well and the family was told a few weeks ago that his days are limited.  I pray for peace for him and strength for his family.
I pray for Meghan.  She is my friend's niece and she is 21 and just found out a week ago that she has some kind of bone cancer.  I visited her with my friend on Thursday to see if I could offer any help or answer any questions that I could.  They are at MSKCC too so I know they are in good hands.  Hopefully it will be over in a year and she can get on with her life.  It is all so unfair and I question it every day.
So add my friends to your prayers and keep Cody and Casey (still overseas) in yours too.  Thank you.

June 4, 2012

Happy Re-birthday!! 3 years ago today Cody received his stem cells. We are very grateful for the donor. Amazing!! I continue to pray each day and am thankful for each day we have. Stay strong, my boy! I love you!!

June 3, 2012 ...3 years ago

Three years ago tomorrow was a huge step in Cody's battle with leukemia.  It was three years ago that he received his stem cell transplant.  Time sure flies.  We went to dinner tonight and talked about the process.  Just last week he had something that was a muscle strain but caused him a lot of scare. This is our life.  When something out of the ordinary occurs, we think the worse. It is something we will live with and Cody mentioned it tonight at dinner.  He is doing well, the feeding tube is gone.  He is doing his best to eat and gain the weight he needs to.  He wakes up with a smile on his face and he is so upbeat and happy with life!  He continues to amaze me each day.  We have an amazing relationship and I will not trade that for anything.  We woke up around 1am last night and did a quick video chat with Casey.  We were both so tired but so proud of his promotion!  He is a sergeant now!!!  Another strong soul but in a totally different way.  I could be happier!
Sending special prayers to a good friend's niece as she begins her battle with bone cancer.  She is at Sloan and will be under the best care.  Please add Meghan to your prayers.  Thank you.

May 14, 2012

Happy Belated Mother's Day!!
I had a nice day with Cody and then did a skype session with Casey.  It made my day!!
Today marks a huge accomplishment.  Cody finished his first year of college!!  HUGE, I know!  I could not be more proud.  Tomorrow he heads to Sloan via the train and is hopefully getting his feeding tube out.  He is quite attached to it but it is time for sure.  I know the drs will help with that.  He is meeting his dad there and is staying overnight with his uncle Jim too.  I am so proud of this tough year of schooling he has endured.  He continues to amaze me each and every day.  He will continue with his internship with the Islanders and is beginning to lead somewhat of a normal life. It is about time.  I love you both, my boys!!  XOXOXOX

May 14, 2012

So Happy Belated Mother's Day!! I had a good day with Cody which ended in a short skype session with Casey.  It made my day!!
Today marks a huge accomplishment!! Cody finished his first year of college.  I could not be more proud!   It was a tough year but he did it!
Tomorrow is Cody's visit at Sloan.  He will most likely get his feeding tube out.  He is taking the train in and is meeting his dad and uncle.  I cannot wait to get the call saying it is out!  Keeping fingers crossed.
Please say a prayer for Denali.  He is a 10 yr old in Fl battling pancreatic cancer and is not doing so well.
Thank you.
That is Cody and I on Mother's Day...not the best but having a good day.
The pic of Casey is via skype..miss him!!

Have a great month everyone.

April 12, 2012

SO things are good! This past week (we are off from school) Cody had a physical at a regular dr out here. We need to get a regular dr for him so that he can get medical attention when he needs it for things like strep, etc. We no longer need to rush to Sloan. It is a great feeling! Yesterday we spent the day with 4 drs in NYC at 4 locations in NYC. Very long and exhausting day. Cody saw the doctor, still a MSKCC dr, that will follow him yearly for long term issues. It was good to know we had graduated in a sense. He had some concerns and spoke to the dr about them. We will see this dr in a year. Then we went to an endocrinologist. This is basically a dr that deals with hormones and also things like calcium and bone loss. Cody has some bone loss but hopefully this can regrow. Amazing right? He will watch Cody for any changes or imbalances on any levels. Then we went back to our bone marrow transplant team and we are working toward taking out the feeding tube!! Cody is attached to it in more ways than one. He is kinda dependent on it so we are working toward decreasing the feeds. He smiled even though I know he is very nervous. He can do it. Then we went to the kidney specialist to check for that level of protein in his urine. All is hopefully good there too!

Cody spent Easter in Canada, well sorta. Not much of an Easter celebration so he came home to a basket from me! I miss him when he is not here.

Speaking of missing, Casey is away now and we did get to Skype with him which always makes me smile! He got a promotion so he is feeling pretty good too. I pray for his continued safety and is speedy return to his home!

April 3, 2012

Wow...time sure flies! I am proud to report that even though Cody got strep, we have not had to so to MSKCC the entire month of March. Big improvement!

Busy here with Cody's 5 classes and projects. He is doing ok but needs a lot of help! It is tough on both of us.

We are finally doing a few home improvements which is always fun.

We go to MSKCC on the 11th. I am really hoping they can convince Cody to take his feeding tube out. He is getting one can of insure and a little water. He is definitely eating more and pretty normally. He is kinda attached to it, no pun intended and worries.

Cody is still dealing with anxiety which causes him to get upset and vomit at times. I really think it is anxiety related. This too, shall pass.

Cody is heading to Canada for this weekend of Easter. I really miss him when he is gone.

I know he is moving ahead...today he went with 'friends' from Dowling and got breakfast. I was so happy!!! Big step again.

We got to see Cody's player last week after the Islanders played the Penguins. He is a Penguin now. It was so good to see him and Cody still gets star struck and forgets how to talk. It is so cute!!

Happy Passover and Happy Easter to all my friends that read this. And to my teacher peeps, enjoy the vacation!!

PS. Keep Casey in your prayers...

March 10, 2012

It has been about a month since I wrote..things are good!!

We had a nice visit with Casey and Nicole. The three of them went skiing in Canada and visited their dad. We had some good laughs here and the visit was too short. Not looking forward to hearing that Casey is leaving. He is going overseas again.

Cody just came down with strep. We were actually not sure what to do when he spiked a fever. So we called Sloan and then were directed to go to a dr out there. We went to PM Pediatrics which is wonderful. I do need to find him a dr out there now. He has a functioning immune system so we are good to go out there. I have an upper respiratory virus and am under the weather. I got the stomach virus the day the Feb vacation started and now this. I never get sick!! I think this weather is too blame and too many are walking around sick! I had to miss Friday which is so unlike me. I am exhausted but should be good by Monday, hoping anyway!

So next month we go back to Sloan on the 11th and then we meet with the long term follow up dr. Big day of appts for us. Looking forward to some nice Spring time weather too!

February 7, 2012

Good morning.

So Cody is off for another semester. I pray that he can do this. I know he can. He was anxious that first day but that was it. He does have a lot of work to do but with my help, he will do it.

He seems so happy and that makes me happy!

We are anxiously awaiting Casey and Nicole's visit this month. Casey will be deployed again and I am hoping this is the last time. He is there for 3 months. Cody and I are planning a trip to FL this summer and we will get to see him there. I miss him already and wish it was over.

Nothing new to report which is good.

Extra prayers needed for the Botolino family in FL. Their 10 year old is battling liver and pancreatic cancer and not doing so well. Just not fair.

Have a good day everyone!

January 29, 2012

Well, hard to believe that January is almost over. I guess it kinda is.

Cody has recovered completely from RSV, thank goodness and starts back to school tomorrow! He is anxious. We took a ride yesterday so he could find his way around and buy the books...ugh!

He feels better. He is taking 5 classes since he took January off to work the hockey games. He was able to work a few but was sick for most of it. Funny how things work out.

So he is sleeping in today and we will organize his stuff so that he is all set for tomorrow.

We are excited about Casey and Nicole's upcoming visit at the end of February.

My brother and his family usually come to NY around the Feb break but they are not this year. It already seems weird without them. But they always hope it snows when they are here so looks like they made the right choice with the winter we are having.

Hope everyone had a nice start to the new year!!

PS. really love this pic of my handsome boys!

January 20, 2011

So here comes our first snow this year. I would like a little.

Cody is returning tonight from a short visit to Canada. He did not do much there but at least he was able to go away and fly on his own. I missed him for sure.

He has recovered from his virus and is back to eating on his own and hopefully gaining weight. We are trying to get a follow up appt with the new long term drs. For some reason, they really want him to see the long term dr. It is really hard scheduling it.

He is back working with the Islanders which he LOVES. Casey was away this week doing training and he is due back home to his wife this weekend. He and Nicole are coming on the 24th so it will be nice to have them here too.

Enjoy the weekend and the snow, my LIer's.

January 16, 2011

Monday-Martin Luther King Jr day.

Well, we are back on track. Cody is better and worked the game on Friday and all day today. He is pooped but he did it! Not happy that he did not eat today but will catch up tonight with the feeding tube. So glad he is feeling better.

He is going to Canada on Wednesday to see his dad. He will be returning Friday night. Not a long visit which I am glad about. This is the first time he is flying alone since he has been sick. He will be fine. I will be at work so that will keep me busy.

Hope everyone enjoyed their 3 day weekend.

January 11, 2012

So here it is the 11th of January already!! Crazy.

Well, we did go back into Sloan last Monday because Cody sounded so horrible. We had to go to Urgent Care there but the good news is that it was not pneumonia. No new meds, we are told it is just part of the recovery period from RSV.

So it was a slow week so far and with Cody still getting a tiny bit better each day but now with head and ear pain. So after numerous emails to his doctor, he took a car service and went to see his main dr yesterday. We saw several doctors on the team but now I think his primary dr wanted to see him. SO he does have sinusitis now and fluid in his ear. He is back on another antibiotic and nose sprays and there is a cough medicine with codeine that I did not even fill because I know he will not take it. He is nibbling on food so thank goodness we still have the feeding tube. Thank goodness he took January off! He did not get to work the hockey game last night but maybe Thursday?? He missed his trip to Canada and maybe he will go for a few days next week.

Casey is back and in the swing of things. He is doing extensive training as he will be deploying again. Doesn't make sense to me but who am I? He is coming to the NY area at the end of February and we will see him then. He and Nicole are going to Canada for a few days too with her parents. I am really looking forward to some time when we can just be 'us'. I am planning a cruise next year for my birthday so that might be the best time. I worry each day about him but he is smart and doing what he likes.

Work is good. I have a great class. I enjoy seeing my great friends each day. Hoping this all continues for 2012.