October 31, 2013

Happy Halloween!  This is Cody and his drum teacher.  He always dresses up and never forgets to visit us.  Thanks, Bobby!

Great day at work for me.  SH Peeps are amazing.  Before the day even started, a great friend came in and surprised me with a very generous donation.  It is really unbelievable.  I have a hard time with this. I will never forget each and every person's thoughts, prayers, donations, gifts, texts, emails, phone calls etc.  I mean that.  This is what helps me get through the day.  So many wore their shirts and other wore Islanders shirts all in support of Cody. Thanks to all that purchased them.  More are on the way!  I will post pics soon.  Thanks, Allison for all the pics and an amazing day. Thanks for the smiles!!!   One of the teachers I work with brought in an autographed Peca jersey for Cody.  He used to be a captain for the Islanders.  Cody was thrilled!!! Thanks so much to the Pinzino's.   I asked him to come at the end of the day and see everyone and to take a pic with us but he would not get out of the car.  I think he gets overwhelmed with stuff like this.  I really do.  But he saw us and there will be lots of pics to share.  Thanks again so much for the love.  

Tomorrow is a blood check for Cody to see if he is on track for chemo on Monday.  He is supposed to race his rc car tomorrow night and I might actually get out a bit.  Hope everyone had a great night and a nice weekend...xoxoxox

October 29, 2013

Tuesday morning-We have a quiet few days.  Cody found out yesterday that his platelets have not recovered enough for chemotherapy to begin this week.  So it is not starting.  This is part of the process.  His body dictates what we do here.  I get that.  It does not mean I do not worry when there is a gap in treatment.  I will continue to pray.
My peeps at SH are amazing.  So on Thursday, they are all wearing Cody's shirts or an Islander jersey in honor of him and to support him (and me)!  A flyer was sent out to the staff.  I am pretty sure Allison Saber had something to do with this and she is a beautiful person!!  Thank you.
 Last night we also found out the names of the schools that are closing in our district.  While SH is not one of them,  I saw fellow colleagues from the schools that are closing and my heart breaks.  Today will be a hard one for you going to work and facing your students.  There will be shifting everywhere in the district and I know that SH will welcome all teachers and students with open arms.  That doesn't make it much easier as our hearts are in our classrooms and we have all worked hard to get there.  I will be thinking of all of you.
Thank you.

October 26, 2013

Last night was amazing.  I was waiting all day for the game.  Cody and I had a great lunch and he left around 3:00 for the HOCKEY FIGHTS CANCER Islanders game.  He did an amazing job at the puck drop along with three other cancer kids.  He did not want me hanging around but I found a way to get close and take some pictures.  Here is the link from their website:

http://video.islanders.nhl.com/videocenter/console?id=468948&lang=en&navid=DL%7CNYI%7Chome

He loves being there and they all treat him like family.  After he did the drop, Josh Bailey, a super guy and hockey player stood up and shook his hand.  So touching.  

I was lucky to have a bunch of great friends to come to the game with me.  Most wore their Cody shirts.  I was really touched.  We are lucky that way.  

Today we rest...so tired!!

Thanks for the good times!

October 25, 2013

Friday- So we waited all last evening for a call about his counts from Thursday.  Nothing.
I tried this morning when I got up and I was told to call back at 9.  I know the team is there nice and early because we see them at 7:30 on chemo days.  I called at 9:05 and had to leave a message.  I worked all morning and did not get an email or a call back.  Finally Cody called and said he needed blood and platelets.  I was pretty upset that we waited almost 24 hours with him getting the products he needed.  So I had to leave work, thank goodness they were accommodating, and we got to Sloan around 2 I think.  He ended up getting one unit of platelets and 2 units of blood.  We did speak to the nurse practitioner about the way things were handled today and why we got the call so late.  Basically if you get blood work after 12 at Commack, it comes in the next day.  Guess we will need early appts there.  So we ended up getting back home around 9 and Cody went to see if he could still race his car.  He had his heart set on that.
We are still not sure if chemo will be starting on Tuesday.  He gets more blood work on Monday and we will go from there.  Have a good night all.
OHHHHH- Don't forget to watch the Islander game tomorrow, NY!  Cody will be doing the puck drop.  So excited to have friends going with me!!!!

October 24, 2013

So, we got a call today that we are meeting with radiation on Nov. 14 to begin the simulation for radiation.  I thought we were starting on the 11th.  So I made a call and found out that Cody's body needs to clear the upcoming chemo as one of the drugs can interact with radiation and cause burning to his skin.  Unbelievable.  So my guess is we are not starting till late November after Thanksgiving as that would be a disruption in the process again.  It is not something you can plan for.  It is crazy at work and we have Casey and Nicole coming so I am trying to figure all this out.  I ain't easy!!
Cody had blood work today and we did not hear back about his counts so not sure where he stands for tomorrow.  I am trying to 'like' this team and these drs but it is kinda hard.  We were so spoiled with the bone marrow team.  They are still there for us but not on a day to day basis.  I miss them.  It will all work out, just stressful and anxious.  I will keep you posted.  Thank goodness tomorrow is Friday!!

Wednesday, October 23, 2013

Not sure what time my boy will wake up today.  He worked his first Islander game last night, well the first for the season.  He has done little things here and there but this was for the longest duration.  I had our friend, Jill who was actually a nurse for Cody back at LIJ (Cohen's) way back in 08, keeping an eye on him.  She has season tix and I felt a whole lot better knowing she was there.  Our GREAT friend, Ann was there to keep a close eye too.  I think he did well.  He got home at 11 and crashed.  I am so proud of his strong will and endurance.  He pushes forward.  He needs to do these things now because in a month he will not be able to.  I am trying to work the radiation/chemo plan out and also Casey's visit.  He comes on the 11th too.  Things will get crazy for sure.  But we will get through it.
Already wishing it were the weekend...come on Friday!

Monday, October 21, 2013

Monday-So today Cody was up very early and he trekked into the city via a car service.  Thanks to his friend, Leah for the company for the ride in.  I know he liked that!  He ended up needing platelets and he got a bolus of fluids because his pressure was a little on the low side.  He did well, got lunch (no longer neutropenic) and came home on the train.  I am always proud of him when he does it alone.  It is a huge deal in my book.  He took a nap once he was home and then we went to eat.  He is very excited to be working the Islander game tomorrow night.  I am a little nervous about it but he will do fine.
On Saturday night, a bunch of us from work are going to the game.  It is Hockey Fights Cancer Night.  Cody will be doing something and mostly likely will do the puck drop with a few kids.  Pretty exciting!!!  Love that organization.  Thanks, Ann for always thinking of him!! Be sure to watch on TV for him.  I'll remind you on Friday.  :)
Let's keep up the good work for this week!!

October 20, 2013

Sunday-Nice day today.  Cody got to go race his rc car.  He got 1st place too!!  I hung out with Moira today and went to lunch. We went to see the race after we ate.  Even the pups had a good day-Moira brought Dewey over for a playdate.
Hoping for a quiet week.  Cody goes in for counts tomorrow.

October 19, 2013

Lazy day.  Just chilled most of the day.  Cody is just laying around.  I think he might need blood.  He is going in on Monday unless I can convince him to go tomorrow.  He wants to try to do the car race with r/c car tomorrow.  Not sure how long he will last.
He is on the couch and we are watching the Islanders play.  Hoping for a restful night...for all of us.

October 17, 2013

Scans...and the GREAT news is that the chemo is working.  Cody is 80% better.  Some tumors are not visible and the primary one in the groin is smaller.  Cody will still continue with the chemo and radiation will be added.  Surgery is not needed at this time.
Cody asked to see the scans and it was hard to look at it.  His torso looked like someone splattered ink all over it.  He had so many tumors, his lung has a significant one, his lymph nodes, his liver, his pancreas, his lower back, his hip, his chest wall and his groin muscle where the primary tumor is.  It was unreal.  The groin one lit up like it was on fire.  Once we compared the scan from today, some were smaller and not visible.
We will work out the details for the radiation which will begin around the time Casey and Nicole get there and will last for 6 weeks.  Chemo will continue as well.  Tough days ahead.  But we are moving in the right direction.
Cody's counts have dropped.  He is neutropenic and needed a platelet transfusion.  They give him Benadryl in case he has any reaction and he passes out.  There is a photo of him below taking a nap.
There is power in prayer.  While he was in the first scan, I visited the church across the street from Sloan.  It is the first time I walked in and did not cry.  There is a photo of the church below.  I held it together for the most part today.  We are lucky to have so much support here and at Sloan.  I thank all of you!  We are blessed that way.

October 16, 2013

Good day....scans tomorrow, CT scan, PET scan, MRI and blood work...meeting with drs at 4 to discuss findings...please pray the chemo is working.  Thank you.

October 15, 2013

Tuesday-So Cody had a pretty quiet day.  His energy is low but he keeps pushing himself.  He hung out here all day and then went to his high school's soccer game.  I could tell he was uncomfortable and he said he was just exhausted standing there.  It hurts me to watch.  I am there for support and if he needs me.
So Cody designed a shirt for his clothing line he is dabbling in.  He is selling the shirts for $20.  They are a guy's athletic type shirt.  If interested, please let me know.  Hey, you never know.

October 14, 2013

Not such a relaxing Monday.  Cody's ear got clogged and he has been cranky!  We got the bloodwork this morning and then tried to unclog the ear again.  Finally around 5 he called and asked if he could go locally to get it unclogged.  Boy, was it ever clogged.  He gets a wax build up and it gets stuck.  Need to stay on top of it.
He actually made me dinner.  His taste buds are shot so he was looking for something with a lot of flavor.  His mouth is yucky so hard to find food to eat.  But we try.
Hope everyone has a good night.

Sunday, Oct. 13, 2013

Love a 3 day weekend..Cody basically relaxed on the couch all day.  We did get lunch out but back to being neutropenic now and eating at home.  The drs said to assume that his counts are down.  We will get blood work tomorrow.   He did not do his usual eating but he did ok.  Good day to stay in, football and catching up on his dvr shows.  Hoping for a quiet night.  Relax!

October 12, 2013

Saturday- Good day.  Cody is tired but feels ok.  We ran some errands today and he did well as long as he got to rest in between.  He ate ok but woke up with his mouth and tongue coated, a side effect of the chemo.  He has lost his eye lashes and eye brows now.  He notices but it ok with it.
Quiet night watching hockey and hanging with the pups...good night.
Oh yeah...I did the de-acessing without a problem..just sayin'.

Friday, Oct. 11, 2013

Cody's home!  He did well.  It was a long day.  I did make it in for the dr visit but it was brief.  The plan is for him to get blood work out here Monday and then in on Thursday for scans and more blood work.  We are hoping to the report back at the end of the day Thursday.  It was good today at Sloan seeing all of our friends.  We are lucky to have everyone there.  They genuinely care!  We are still getting to know the new team.  So tomorrow I have to do the de-accessing again and they changed the needles.  I should be fine but I don't love this stuff.
I was talking to a young guy there, 26.  He was sitting by himself getting his chemo and we started talking.  He was telling me about his medication and where he was from.  Turns out he is Missouri and travels to Sloan for his treatment.  He is living at Ronald now.  I asked him what his diagnosis was/is and he said "Ewing's Sarcoma".  Ewing's is rare.  We started sharing treatment plans and then he said this was his second time with it, it came back.  He did surgery and radiation too.  I think this is pretty standard.  I introduced him to Cody, who is a HUGE Rams fan so they chatted for a few.  They have a few things in common so you never know when you need a friend.
I hope everyone has a good weekend...enjoy!

Wednesday, October 9, 2013

Home after a long day.  I wish Cody was.  It was so good to be with him.  We played a few cards games and it was pretty quiet there.  I know he forgot his antidepressant this morning and it was the first time I heard him complaining.  I know he has EVERY right to complain but he seemed a little depressed.  It could be just everything building up and kicking his butt.  He gets a steroid so he was eating a bunch of snacks today.  He ate a great lunch and then he nibbled at dinner.  I know he is bored there too.  Friday cannot come quick enough.
Saying prayers that he has a good night and a good day tomorrow.

Tuesday, Oct. 8, 2013

Cody did well yesterday.  He sounded good.  I sure miss not being there.  They did do a culture of his stool from the frequent diarrhea.  I kinda figured that was an issue.  Hoping it is nothing significant.
I will see him tomorrow and I cannot wait.  I had a hard time holding it together for a little while yesterday.  Not sure when it hits me, but it does.  My support at work has been amazing and continues each and every day. Love all of you!! My family checks in and would be here the second I asked.  I am lucky that way.
Thank you all and here's to an uneventful day.

October 6, 2013

Sunday-so glad the bike race is over!  Cody was with his dad's family today and did a 30+ mile tour around NYC for MS.  He did it with his uncle's wine company and his aunts and uncles.  I am so glad it is over.  I was really worried about him but admire his determination.  He is so strong that way.  I went in nice and early so I could be at the meeting spot.  He looked ok but is tired now.  I am so proud of him.  Tomorrow he goes in for his chemotherapy.  This is the tougher round.  I plan to be there a few days.  Continue to keep him in your prayers.
Casey graduated on Friday and enjoyed his birthday weekend.  I am counting the days till we see him!
Can't wait!!
Thanks for keeping up with us and for reading...xoxoxo
That man is the pic is Cody's Uncle Mike.  And of course, me...too early in the morning and then Cody and Matisse!

October 3, 2013

Happy Birthday to my son, Casey.  He is 23 today!  He graduates from sniper school tomorrow.  I am so proud of him and his dedication.  He had a lot of on his plate too and he still kept going.  I can't wait to see him on Nov. 11.
Cody is ok but still dealing with diarrhea.  He is calling the drs again today. It gets him up at night and it is annoying.  I am hoping all is ok so he can still do the bike tour on Sunday and then chemo on Monday.
Have a great Thursday everyone.

October 1, 2013

Tuesday--So Cody went to Sloan in Commack for blood work.  We actually did not hear back so I am assuming all is good.  He did talk to the drs because of his stomach issues but all is getting better and they were not concerned.
He went to the race track tonight!  He is there now and I have to wait for him to come home.  I need to sleep but it will hard to without him here.  With 110 closing, he will have to find his way home too.
We are working on plans for the weekend so he can do this bike tour around NYC with his uncle's wine company.  I am planning on going to the city on Wednesday to be there a little bit with the chemo which begins on Monday.  Praying for a good week and that his body can handle it all ...again.
This is Casey's last week of sniper training.  His birthday is Thursday.  He will be 23!
He has a sort of graduation on Friday.  He will have another title to add to his name.  Way to go, my boy!
I hope everyone is having a good week and enjoying the nice weather.