Happy Thanksgiving

November 28, 2013
Finished the short week with a surprise from a great friend.  Thanks, Bern for the beautiful bag!!  You need to stop now!
Nice day today home with my son.  I wish both were here but made the best of it with Cody.
He worked the hockey game last night and I watched.  We went to the Saber's after the game to pick up our cooked meal.  We got 2 turkeys!!  Thanks, Allison for always thinking of us.  It was all great!!
We relaxed most of the day, I do not think Cody even got dressed which is always good.
I hope everyone enjoyed their day with their friends and families. We have a lot to be thankful for.
Special prayers and thoughts headed out to my friend, Danielle and her family through this difficult time.
The picture is not clear but this is how I spent my day. The dogs are in it too..

November 27, 2013

Good morning.  It is the day before Thanksgiving.  I has been a good few days here.  Cody is in between cycles and feels fine.  He is actually going to work a hockey game tonight, I will get to be a spectator.  We will go together on Saturday which I am looking forward to, like old times.
We are trying to work out the schedule for the next 6 weeks.  If anyone could help with a ride one of these days, we would definitely appreciate it.  We do not have the times for the radiation just yet but the actual appointment would be less than an hour.  The week of Dec. 2 we start but he will be there all week with chemo too.  So those next few weeks if you are driving into the upper east side and could take a passenger, let me know.  We would appreciate it for sure!!
Yesterday we had visitors!  Casey's great friend, Preston and his fiancee (SOOO HAPPY) came by.  Enclosed are some photos.  He is getting married in September in Colorado.  Hoping we can make that one!!

Tomorrow we are home and that is fine with us.  Cody prefers that.  Since I cooked last week for Casey and Nicole, I will not be cooking a turkey again.  Cody wants a ham so I will make a small one. I have heard we are getting a delivery for dinner so I am fine with that.  We are lucky that way.
Enjoy your day of preparations and be careful out there my LI peeps.  It's nasty out.

Friday morning, Nov. 22, 2013

Cody has been feeling great the past few days.  He really tries to do lots while he feeling well.
He did not know he was getting a surprise yesterday.  Our great friend and his drum teacher of about 15 years, brought him new drum heads which he desperately wanted and needed.  I was not here (parent teacher conferences) when Bobby came to the door but he said Cody told him he did not have money to pay for them.  He was saving up and/or hoping he would get them for Christmas.  So cute.  We are thankful for Bobby and I  know Cody will be playing them today.  Thank you, Bobby!
Looking forward to a quiet weekend...enjoy yours!

Nov. 20, 2013

Wednesday- Sorry to say that my son, Casey and Nicole left today.  They are headed to VA for a few nights to themselves.  I have reason to believe he is being deployed at the beginning of December.  Prayers needed for his safe return.
Cody is feeling better and got to spend the day with Casey yesterday.  He looks tired but I think he just wanted to hang with him.  It was good to see them together.  He would not let me take any pictures so I do not have those to post.  I do have one but Cody does not look so great in it so not going to post it.
We are looking forward to a few quiet weeks at home.  Thanks for reading!

November 18, 2013

Monday..Cody went in nice and early today. I dropped he and his dad off at the train and the plan was for him to get platelets that they thought he needed.  Turns out, he did not need any blood products.  He was able to do the stimulation for radiation which means we do not need to return until Dec. 2nd when the chemo resumes along with the radiation.  Not the way to go into the holiday month but we will do it.  We will make the most of our time in NYC as much as we can.
I was, once again, touched by the great friends and support I have at work.  As soon as I walk in, everyone asks about Cody.  I know they genuinely care too.  I was only in tears once today!  I am blessed to have such a great co-teacher.  Bernadette not only helps me and makes sure everything functions the same when I am gone but she leaves me little presents to get me through too.  Thank you.  Allison is another one that works behind the scenes.  Allison has a sneaky way about her and she offers up things too.  She was the one behind the "Support for Cody" day.  She told me today that her good friends "The Grill Scouts" are making us a turkey dinner for Thanksgiving.  I won't have to cook again.  I continue to be touched and thankful for everything!!  So blessed that way.
Tonight was dinner with Nicole's parents and my ex was there too.  A bit awkward to say the least.
Big day and a long day tomorrow...sweet dreams.

November 17, 2013

Sunday and I got to have my Thanksgiving with my boys and Nicole!! This is one happy mama!
We had a lot of laughs and just hung out.  I took Casey shopping for his Christmas present and he got a cast net and some fishing gear he wanted.  I feel accomplished.
Cody is feeling ok.  Sloan called this morning and scared me when I saw the number.  They are concerned about his platelets.  He will travel in tomorrow with his dad who is here all week for some reason.  I am the lucky one who gets to drop them off at the train.  Takes a lot off me for this week and it is a busy one with my observation on Tuesday and parent teacher conferences Tuesday night, Thursday night and then on Friday.  Busy and stressful week.  Tomorrow we are all going to dinner and then Wednesday morning Casey and Nicole are leaving.
So here's to a good night to all....

November 16, 2013

Yes, we are home.  We got here around 8pm.  The early morning blood count was not so promising with ANC at .4.  It needed to be .5 to go home.  Cody convinced the team to do another cbc in the afternoon.  We were waiting for an MRI anyway and the EEG was on.  Lo and behold, it went up to .8 so we were discharged.  Good to be home....have a good night all!  Thanks for checking in on us!

Nov. 15, 2013

Friday- Cody felt pretty good today. He's tired but getting better. His counts are still too low to go home. He did not have any pressure or fever issues during the night. Neurology came in and said the EEG was negative for the night. She wanted it on for today and also tonight. She is less concerned about an MRI but will do one soon.
We were able to do the simulation for radiation. Cody was nervous but did well. He got 5 little tattoos and they made a mold for him to lie in. They want him in the same position and need to beam the exact area each time.  We go the day after Thanksgiving to set up everything and will most likely begin on December 2, 2013. It will begin with a week of chemo. There will also be more transfusions during radiation. It all makes me so nervous.
Casey and their dad were up this afternoon. I wanted to come home to check the dogs and actually sleep so Cody is alone tonight. He's tired and off to sleep too. I will go back in the morning and hopefully he can go home. Prayers, my friends!  Thanks!

Thursday, Nov 14, 2013/Friday morning

Today was a busy day.  Cody has been experiencing some possible seizure activity. So the neurology team was here bright and early.  Dr. Khakoo told us that Cody's case from the brain swelling and the HHV6 reaction during transplant will be published in a journal.  Pretty cool, I think.
So once his symptoms were described as best as he could, an MRI and EEG was ordered.
The sarcoma team came in and we were able to make the 12 appt with radiation.  It was basically a consult and she is trying VERY hard to get him in today (Friday) for his simulation.  They will make a mold for his body so everything gets targeted at the same place.  They are only beaming the primary tumor.  Interesting that she said the tumor will always be there but there hope will be that it is dead cells.  So praying that will happen today.  That would save me a trip here for that.
He got the leads put on his head and he is wearing the EEG for as long as he can.  They will take it off for the MRI.  We will see if there is any seizure activity there and then look at the brain with the MRI.  A bit nervous about this, I must say.  Hoping that is all clear.
We have enjoyed seeing all of our friends/nurses/nurse practitioners/bone marrow team drs and I think one of our nurses  is coming today from Cohen's. We met her when Cody was first diagnosed 5 years ago.   She knows nurses here and she is coming to visit.  She is the nurse at Cohen's that took me in her arms when I was so upset that Casey was not a bone marrow match and I felt our lives crumble.  She begged me to go to Sloan.  She gave me her number and as we talked I learned that her 3 year old passed away from leukemia many years ago.  I hope she makes it today.  It will be great to see her.  We have a great nurse here this round too, Sue and she keeps Cody smiling.
So here are some photos from the yesterday.  There is one of the scans and it is hard to see.  Cody actually posted it on Facebook.  The black spots are the cancer tumors in case you did not see it on facebook.
I will update later today.

Wednesday, Nov. 14, 2013

We had a good day with Casey and Nicole on Tuesday.  They came to my school and met all the kids. Casey looked so handsome in his uniform.  Cody was not feel 100% and was not really wanting to eat. I felt something was brewing.  We all hung out in Cody's room laughing at you tube vidoes.
Today I was up early with Casey.  He went to the high school to play his violin so we got to have breakfast.  It was nice.  I went home at lunch to check Cody.  When I called to tell him I was on my way he said he did not feel well and that he had a 99.4 fever.  He has also been having some mild seizure activity.  By the time I got home, his temp was higher, 100.4 sends us in. I let him handle it and went back to work for him to call me on my short ride there to say it was higher and we needed to go in.  I walked in the office and walked out. We waited to see Casey and Nicole and got here at Sloan at 3:30.  The routine begins and hopefully antibiotics kick in.  He got a unit of platelets but red cells are good.  I had planned to do Thanksgiving early with Casey and Nicole on Saturday. That will not happen but maybe we can shoot for Sunday if Cody gets discharged hopefully Saturday.  Never cooked a fresh turkey, always frozen, so that might be our option.  I am assuming you do it the same way??? Keeping fingers crossed for a short and uneventful stay.

November 11....evening

Feeling very loved and lucky this way.
Today the Kids 4 Karing group from St. Matt's came to do my yard today.  It was Grace SooHoo and her friend, Kara Lulley who coordinated it all.  There were about 25 people in my yard raking, weeding and blowing leaves.  Sr. Kay came to say hello too.  Guess this is my message to get back to church on a regular basis.  Well, there is not anything regular here but I will do my best.
No news on the blood which I am hoping is a good thing.  If they call tomorrow and tell me he needs something, I will be a bit upset.  He feels ok just too tired to move off the futon.  He needs to let that body heal.
Casey and Nicole are driving and are in the Maryland area.  I wish we would see them tonight but they will come to my work tomorrow.  Casey brought his uniform and the kids love that.  Looking forward to their visit.
Again, thanks to all those that came out today.  I was truly touched and your hard work is deeply appreciated.

November 11. 2013

Happy Veteran's Day to my son, Casey and to all those in the military.  Thank you.
Good day on Sunday. Cody was mellow all day and just chilled.  During the night, he became nauseous so that made me worried.  We got it under control and slept the rest of the night.  Just gave him more anti nausea meds and he said he feels better.  Blood work today in Commack.
Waiting for updates from Casey and Nicole, they are driving here!!!  Won't see them tonight but will tomorrow!! Safe travels!!!  XOXOXO

Saturday evening, Nov. 9, 2013

Pretty lazy day here but one that ended well.  Went to Buffalo Wild Wings with Cody and our friends Jean and Mike.  Mike is the one that is doing Cody's t-shirts and Jean has been my friend for 15 years.  We enjoyed watching Cody inhale his wings and ordered a huge dessert that was amazing!!  We got to pay and the waitress, who provided us great service I might add, said that it was paid by someone, it was a random act of kindness....I was shocked.  I asked if the person left and I was looking around trying to see if anyone looked suspicious.  It was really nice and I would have liked to thank them.  Brought tears to my eyes.  Very special people out there....don't ever forget that.
I think the chemo is starting to hit Cody as he seems to be slowing down a little. Hoping all stays well!
Enjoy your Sunday.

November 7-8, 2013

Cody did well this week and kept very busy.  On Thursday he and his dad (free tix again!) got to go to the Rockettes show.  Cody was bored with that but it was something to do and to occupy the time.
I drove in Friday around 12 to get him.  He finished up early and I did not even go in.  He had physical therapy and met with his psychiatrist this week.  He stayed busy.  We got home around 4 yesterday and we both took a snooze and then he wanted dinner and then the race track.  He tries to do all he can do while he feels good.  He loves it there.  When I checked in on him, I texted one of the guys there.  He wrote back "he's as happy as can be".  That actually brought me to tears.  I went to hang with him for a bit and took him to eat...again.  Glad he has an appetite.  Hope that doesn't change.  I see how different this experience is from the leukemia.  With that, he could not eat and needed a feeding tube.  Keeping my fingers crossed nothing changes.  We are busy getting things organized for Casey and Nicole's visit.  They come in late on Monday night.  We will see them Tuesday.  It will be a mellow week, just visiting as Cody will be neutropenic again.  We go in Thursday to radiation.  We are all going for that.
Enjoy the 3 day weekend, my friends.  Don't forget why we have it..thank a soldier!!

November 6, 2013

Wednesday- I drove in to see cody after school. I was glad to have my friend, Jean's company. We got to the 9th floor and Cody was just finishing up for the day. We took a walk and found a place for dinner. Cody liked showing Jean around although I sensed that he was tired. He ate really well and was craving fried ice cream which we could not find. We hung out at the Ronald House and had a few laughs watching you tube videos. Cody seemed to feel pretty good but is tired. Just hoping tomorrow gets here quick so I can get him home. Have a good Thursday!!

Tuesday, Nov. 5, 2013

Today was the start of a round of chemo for Cody.  He was up early and took a car service in to meet his dad.  I hate not being there!  He did well and sounded good when we talked.
So this is how it happens.  He gets 2 tickets to the Knicks game from the Ronald McDonald house....and they are floor tix and $900 each!!  Now that should have been me and him going!! It always happens that way!!!  LOL  I know he had a good time so that is all that matters.  I will go see him after work and I can't wait!!
I got a text from our friend at Contactors for Kids.  Cody is trying to help them for their dinner dance.  She was so impressed that he was still helping and from his bed while at Sloan getting chemo.  This is what he does!!!  He is amazing and loves to help and give back in any way he can!!  Love him!
Have a great day all!

November 4, 2013

Monday-So chemo starts tomorrow.  It is the shorter week so he can start tomorrow.  Apparently Mondays are busier at Sloan too. He is taking a car service in and meeting his dad.  I will go Wednesday and have dinner with him and then back on Friday to bring him home.  Already waiting for him to come home.  Then we can focus on getting ready for Casey and Nicole's visit.
Here's to an uneventful week for all us!

November 3, 2013

Sunday-Good luck to all the runners today in the NYC marathon, especially Fred's Team from MSKCC!!
Good weekend and blood counts from Friday are improving so chemo starts on Tuesday.  I am not sure if I am heading in with him yet or he is meeting his dad.  I will do what I need to do.
Thanks to Jenine, the lucky buck winner at work! And she handed it over to me!  What a warm heart.  Thanks, Jenine!!  Thanks too, my SH peeps for the donations for the t-shirt day.  I really appreciate ALL that you do.  I had a special delivery from a SH family and I grateful for that too.  I continue to be amazed and moved to tears.  Thank you...xoxoox