Dec. 29, 2014

It doesn't seem real.
I am trying to figure out what to do.
Do I stay home?  Do I get out?   Always come home and it's heartbreaking to walk through the door.  Cody loved this house and it is so quiet.  There are signs of Cody all around.  Tonight I pulled up behind a car and the sticker simply said "F**k Cancer".  Yep, that says it all.
I just want to say thank you to all of you for keeping up with all this and for all the outpour of non stop support.  I am not sure how much more I will write here but will update periodically.   There is a long painful road ahead.  I will do my best, especially for Casey and we will get through.  Love you all.
Continue to pray for all of us and include Cody.  We need him to watch over all of us.  Thank you.

Saturday, Dec. 20, 2014

On Thursday, Dec 18 at 9:30 pm my son, my hero, fighter, warrior, my best friend, my baby, Cody Louis lost his fight to cancer.  He went peacefully while I was lying in bed next to him.  No more pain, needles, scans, MRI's, radiation, chemo, hospital stays, etc.  I will miss him each and every second.  I love you, pumpkin.

Wednesday, Dec. 17,2014

After a night of no sleep and pure restlessness, we decided to check into the Hospice Inn so Cody could get the proper meds to help him relax.  He's resting. My heart hurts.

Monday, Dec 15.

Not much to report.  Cody has been sleeping since Saturday night.  He slept all day yesterday and today.  He wakes up to take his pills but that is it.  "It's all part of the process," they keep saying.
Casey was here and it was so hard.  My dad comes tomorrow.  Thanks for checking in with us….xoxoxo

Saturday, Dec 13, 2014

Long days and long nights.  After a day of sleeping, Cody was up and actually played video games with my friend, Mike from SH.  And he beat him, I might add.  He took a nap after that and it was then that we noticed his breathing.
Cody's breathing changed last evening and he had me very scared.  He was pausing between breaths and it looked like his whole body was working to get a breath in and out. Very scary.  He was sleeping and I called the nurse.  All of his vitals were good and we added a nebulizer if needed for the wheezing.  We got some drugs delivered in liquid form in case we need them.  He was up in the evening and seemed ok but weak. His nurse from Hospice is so nice.  We met with his social worker and she is equally as sweet.  They are special people.  They both called us today to check in and that was so special.  I do not know how they do it.
Trying to keep the house quiet but that is hard with his dad's family.
Casey got here today and his friend Preston and his wife are here too so that is nice.  They have not seen each other in a few years.  I wish Casey could stay longer but we will go from there.
Working on plans for my dad to get here this week.
Pray for us.

Wednesday, Dec 10, 2014

Cody spends most of his day sleeping.  He nibbles food and drinks very little.  I know this is all part of the process but it is so hard to watch and I feel helpless.  I do make him get up each day and I am wondering if I should be doing that.  I will check with his nurse tomorrow.  He is weaker when he walks and it breaks my heart to see all this.  I am so lucky that I always have someone with me and appreciate all the caring texts, emails and phone calls.
It is probably close to the time when I will be limiting visitors.  I apologize but it is overwhelming and I just read it can make for more confusion.  I think he is ok with the shorter visits but just know we are all trying to help Cody through this difficult time.
He is a fighter.  He got washed up today and while he persisted to get himself dressed, he exhausted himself but…he did it.  He pushes me away and wants to do most things by himself.  I get it.  It is heartbreaking.
On Sunday, Dec 14, it will be 6 years since this horrendous battle began.  I remember it like it was yesterday.  Cody fought every single minute and he continues to fight.  He has endured what most of us will never come close to even thinking about it.  He is the strongest kid I know.  He is my hero.

Dec 7, 2014

Cody is sleeping a lot more and eating and drinking less.  He was up and joking around but is in and out of sleep.  He finally went back into his bed at 5:30 after eating a little soup and some fruit.  We had a quiet day with his dad stopping over for about 30 minutes.  My heart is breaking.

Saturday, Dec. 6

Long day again and a tough one.  Cody did finally urinate at 7 this morning but not all day.  He woke up around 1 and said he did not feel right.  We called Hospice to get the nurse here.  She took longer than usual and he went back to sleep while waiting for her after I gave him pain meds.  He sipped here and there and tried to use the bathroom but he could not.  He woke up and seemed a little better.  I was going to cancel the nurse around 5 and see if he could urinate and go from there.  After a couple of calls, she decided to come anyway to just check on him.  She said his bladder did not feel distended and she did not think he was full of urine.  He is supposed to be drinking but kinda hard to do when sleeping so much.  He wanted Chiplote and came to the table to eat with Moira, Bernadette and myself and he was even joking.  He tried again to use the bathroom and could not so he just went to bed.  It was 7pm.  I started the IV fluids and he is still sleeping.
So much is running through my head, so much.  It is all so unfair and this should not be happening.
Praying for a restful night and that my son feels better.

Friday, Dec 5

So I guess I needed to push the drink issue more.  Cody appears to be dehydrated.  He only urinated once yesterday.  He had difficulty going last night and did not go till this morning.  Sometimes pain meds can do this.  But the good news is he did go, so thinking more that it is dehydration.  His nurse came today and we will run IV fluids tonight and for the next 3 nights and re check on Monday.  He drank a good portion today but has not gone yet.  He is scared, I know, but he fights on and does not want a catheter.  He is stubborn and so strong willed so she showed us he could go and hopefully will go again.  He wanted hot dogs and tater tots for lunch and he ate well.  Not the best choice, I know, but he ate.  Thanks for your help, Moira.  Having the support of another person here is comforting.  Moira got me thinking about him locking the bathroom door especially when he gets frustrated with me so I am changing out the doorknob with the help of his dad.  It's too scary to think he could fall or pass out in the bathroom and if he locked me out, well, I would panic, to say the least.
He will have a few visitors today and the IV nurse will come at 5:30.  He is getting a quick nap in now. The IV fluids will run 8-10 hrs and then I will take it down until tomorrow.
Praying for a miracle…I know he is thinking non stop.  Last night in one of his twilight sleeps, he asked me if I had the paddles…he said the paddles for his chest.  Needless to say, I watched him like a hawk last night.  My heart is broken.  Pray for us.

December 4, 2014

Thursday and a quiet week.  On Tuesday, Cody's hospice nurse Amanda visited us.  The only requirement right now is that she has to visit once a week.  She is very sweet and I like her.  There have been some tough conversations this week too.  Cody's dr from Sloan wanted to come to the house to visit and to discuss the DNR.  Cody told me that scared him and he did not want him here so we will wait.  It is all conversations we should never be having at this age.  I spoke to the Social Worker from Hospice and she came too on Tuesday.  I had her here to talk to me last week but she wanted to come to just meet Cody. The meeting went well and I think he liked her.  He showed her his dogs and fish tank.  After I spoke with Dr. Wexler, he informed me about how Cody can have a day of energy and then a day where he does eat much or do much.  He is def sleeping a lot more and some days he eats and some days he just nibbles.  It is all so scary to me and I am thankful for my visitors and company and for my sleepovers.  The quiet time is good too but also nice to have company.  Cody has not had many friends this week since the kids went back to school but I think a few are coming today.  That always makes him smile.
It is definitely a hard time for all of us.  It is a very sad time too.  My heart hurts.  I think Cody feels it is different but he still fights on each day as he should.  I support him in every way and we will remain hopeful.  Thank you all, again, for your help.  A special shout out to CFK-we are proud to be a part of your family, thank you.  We love you all.  xoxoxoxo

Dec. 1

I forgot one thing.  On Thursday, we were cuddling in bed and there was a knock on the door.  It was Bea Reiser.  She came in with a package.  She said Cody texted her and asked her to get me something for Thanksgiving.  So with tears, she came in with a package for me.  It was so thoughtful and sweet.  Bea, thank you.  Cody, you are amazing and you melt my heart.  I love you.

December 1, 2014

All quiet here.  It was so hard, again, saying goodbye to Casey.  He is having a hard time too.  I wish he lived closer.  Just have to work on getting him back here and soon.
I feel like Cody's brain is slipping more.  Each day he seems weaker.  He sleeps a lot too.  It breaks my heart.
We called the nurse here for Saturday night.  His pain was worsening so we decided to increase his patch.  I think it is kicking in now.  I think he starts to feel pain when he is in the same position.
We did our tree with Casey on Saturday night and Cody was a trooper.  He got up and put his ornaments on the tree.  He was into it and that made me happy.  Casey found his and he put them on.
It was last minute but we went to the new hibachi place last night.  Cody wanted to go and we rounded up some friends.  Thanks for joining us, Moira, Bern, and the Picarello's.  Even Kevin came!
Thanks again for dinner!
So thankful for the support of my family and friends.  I do not know how I would be able to get through this without all of you.

Sorry Xena did not make the picture but she was on the floor. 

Saturday, Nov. 29

Quiet morning here and nice to know my boys are still sleeping.  Casey got here Thursday and it has been bittersweet.  We have had to have some very tough conversations with Cody.  It breaks my heart that 2 brothers have to do this.  Cody adores his brother and now he has to speak to him about the hardest decisions ever.  We are enjoying our time together, nonetheless.  Cody was quiet and slept most of Thursday and did not eat too much.  He was better yesterday and we got out.  He wanted the new game system, PS4 for Christmas so I bought it for him.  He loved playing it.  Casey leaves tomorrow so we will make the most of today.  I will get him here whenever he wants to come. It's tough, any way you look at it.
Cody had blood work yesterday and his counts were ok.  He seems to be breathing a bit better but still is in pain.  Maybe the lung radiation dried up a little of the flood.  He still uses oxygen at night.  We have to tweak the meds every day or so to try to get it right.  He is eating ok but not a lot of snacking which he used to do.  He gets wiped out easily and he does ask me to lie with him at night.  The three of us crowded in there last night.
Thank you all, once again for all of your constant support and love.  We feel it.  We are so lucky that way.  I am speechless.  My sleepovers are the best.  Just need someone here at night or I would never sleep either.  Thank you.

Wednesday, Nov. 26

I am finding it hard these days to say "happy" anything.  I do hope you all enjoy your Thanksgiving with your families.  I will have my boys here and that is all that matters. Casey gets in tomorrow.  We are going to go to Cody's uncles but we will not spend the whole day there.  I would have rather it just be us and be at home, but……
My heart is being warmed by the entire HHH community.  We are blessed beyond words.  Thank you to all of you!  You left us speechless.  I have the perfect place for the framed photo (great job, Saber!) and cannot wait to show it off.  Your thoughtfulness and generosity is deeply appreciated.  We love all of you and thank you.
Cody has been doing ok.  He wanted to get out yesterday so we ate lunch and dinner out.   He seems to be getting winded easier and he coughs from time to time.  He relaxes and sleeps a lot of the day but he needs that.  I know he is excited to have Casey here tomorrow and I cannot wait to hear their laughter again.  It gets harder when he leaves but we make the best of our short time together.  I will get him here every weekend if I have to.
The hospice nurse visited Cody yesterday.  She is sweet.  I am waiting for the social worker to come now.  I actually miss our visits to Sloan, crazy I know but it is comfort.
A special thank you to all my sleepover guests.  I need that support and my friends are here.  We are more than friends.  I never knew what it was like to have a sister but now I do.  Thank you.
Enjoy your day tomorrow and stay warm today…xoxoxoxo

Monday, Nov. 24, 2014

Last radiation.  I do not feel so good about this.  Cody asked the dr what is next.  His reply, I do not know.  Breaks my heart.
We met with psychiatry too with his dad and tried to work out a few things.  Yeah, that did not go too well.  Not going to get into here because I know those of you reading already get it.  I do what Cody needs me to do and will always do that.
Trying to figure out our plans for the next few days.  Cody said tonight he wants to just stay home on Thanksgiving so hoping we can do that.  I suggested we go to his uncle's for dessert.  I was thinking we could have some quiet time with Casey and do our tree this weekend.   My heart breaks to think of Christmas but Cody might want to do that.  I will continue to pray and hope you will too.

Sunday, Nov 23…some photos

Cody with my dad

Cody with a gift basket..thanks, Liz and Dan

Uncle Roy

Cousins

Sunday, Nov. 23, 2014

Very busy weekend.  We left the hospital on Friday and came home to a long time friend's visit for the weekend.  We have had some very nice visits with so many of you and some very generous support too.  I have someone with me every night.  I am scared and I just do not want to be here alone and have to make any decisions or have to drive him in the event of anything.  I am thankful for all of them!
The Long Island Raceway where Cody races his rc car did a fundraiser for him.  We were able to stop in and I think Cody was overwhelmed.  We only stayed about 20 minutes but it was long enough to see tears and the huge support of the friends Cody has made there.  I was so touched.  It was a really nice event that Don, the owner did for us.  Very special.  Thanks for representing us, Corinne, Michael and Bern.  We appreciate it.  We love you all!!
On Saturday, against my wishes, we took him to the casino in CT.  I was so scared and so worried but he toughed it out.  He actually came in 10th (which he was paid for) in the poker tournament and knocked out 5 players which he was compensated for too.  He was in it for 5 hours!!!  He took plenty of pain meds but he did it!  Jean and Mike joined us there and Cody played craps with Mike and he won there too!!  He came out way ahead!!  It was a crazy long day but he did it.
He is making up for it today, he is sleeping most of it.  I made my chicken soup and he is eating it which is good since his appetite has slowed down.
Tomorrow is his last day of radiation.  He will have completed 67 rounds of radiation in the past 6 years.   That is hard to grasp for anyone, let alone a 21 year old.  But he fights on and does it, like a champ, no complaints whatsoever.
I am hoping for a quiet week.  Almost forgot it is Thanksgiving.  Casey comes on Thursday so that will be nice.
I am thankful for everyone.  We have had food deliveries, cards, gifts, gift cards, texts, emails, donations, visits, sleepovers, lots of hugs and tears and we appreciate each and every one of you.  There is no way I could do this alone, never.  Thank you.

Cody and Don, the owner of the race track on Friday night.

Wednesday, Nov. 19

I am so thankful for all the support we have.  I will continue to update this when I can.  Thank you.
Yesterday was long.  Cody was in a lot of pain and they tried 2x to do the X-rays to calibrate the radiation to his right lung.  We finally decided to go upstairs to get some IV pain med and that would help him relax.  We ate a little in the cafeteria and he was able to get through it in the afternoon.
We made it home in time for the Hospice consult.  It was very hard to talk to your son about a DNR.  That is what they need in order for him to join their program.  We asked questions, cried a lot and he was a trooper.  We did not sign at that point.  It was a lot to take in and I wanted to wait.
About an hour after she left, Cody spiked a fever.  Thank goodness, our NP from the transplant, Julie, gave me her cell number.  I really did not know what to do.  My gut was to go to Sloan but then Cody said he wanted to stay home.  Our lives for the past 6 years have centered around a fever as being an emergency and a need for antibiotics. But things are different now.  Sloan is definitely our comfort area and we feel safe there.  Cody wanted to stay here so that is what we did.  So we called and signed him into Hospice.  The nurse was here in 20 minutes, he needed oxygen and that was delivered in 30 minutes.  We called Sloan and Dr. Wexler was on service so I spoke to him and he said just give Cody Tylenol.  He did not seem to have a fever the rest of the night.  Julie explained how it could be an infection in the fluid but more likely to be from the tumors.  Fevers happen this way.
Sue, our great friend and neighbor was here and came again this morning.  Casey was still here too.  He left this morning and will be back next Thursday as originally planned.  Dad leaves tomorrow.
We are so lucky to be surrounded by so many loving and caring family and friends, near and far.  Thank you.

Monday, Nov. 17

Another restless night.  It is hard for Cody to get comfortable. We started on the couch sitting up, then went to lying down, then went to his bed.  Today we increased the pain patch and yesterday I doubled the oral pain med.  He finished 9 rounds of the brain radiation.  Tomorrow he is finished with that.  The 5 days of the lung radiation begins tomorrow.  I also have hospice coming tomorrow.  He seemed ok with the conversation today and I think he knows it will offer help.
Casey is here and helping and I know it is hard for him.  He is going through his own stuff too.
I am enjoying all the support and visits from all of my family and friends.  It is all overwhelming but good to have everyone around.
Actually sitting here waiting for my dad.
Cody just got a call from Mark Messier, a Ranger player.  That was special for sure.
Thanks to the Scarpati family for arranging that!!

Saturday, Nov. 15, 2014

It has been a busy few days.  We were at Sloan each day and made an emergency trip there last night.  Cody had a lot of pain around 11 and so we drove in.  We stayed till around 4 am.  Pain meds were increased.  He was good today but still out of it from the pains meds.  He did make it to the movies today with everyone and a few friends came too.  We all hung out this afternoon.  He pushes himself so much.  I just sit and watch him breathe.
Tomorrow Roy and the kids leave.  It has been great having him here.  It will be a tough goodbye in the morning, for all of us.
Casey got in yesterday too.  So glad he made it.  It is comforting to have an EMT in the house too.
We are thankful for the HHH community.  Some very nice families made us food dinner and then we got another delivery from a great bunch of people involved with CFK.  We had a houseful so it was perfect.  Thank you all for that.
I do not have much else to say.  I am scared and feel hopeless.  Please pray for my boy.

November 12, 2014

Riding home after a long day. Met with Dr. Wolden. She is the radiation dr. She said Dr. Wexler asked if she could radiate Cody's lungs to help dry up some of the fluid. So on Monday we will add that.
A new seizure drug was added due to the mini seizure he had on Monday.
We met with surgery team and the plan went as followed. Dr. Heaton, who is another amazing dr there, removed 800 cc's of fluid. He said the tube kept getting clogged so we pulled it out. Cody was very nervous but I was there the whole time.  We will check and of course he will be closely monitored.
I am scheduling hospice but we keep getting home too late so trying again for Friday.
Thanks for checking in on us.

Tuesday Nov. 11

I am so proud of my son, Casey.  He even got his formal helicopter pilot license today.  Cannot wait until he gets here Friday.
It has been a long few days.  Today we got radiation and went up to get the tube unclogged.  Dr. Heaton, Cody's surgeon worked on it and we got it unclogged and changed the contraption.  It is flowing nicely tonight.
As we were driving, I contacted a good friend, Joanie Notarantonio.  Cody mentioned a Ferrari today.  Well, he got to ride in one, a very fast one, and it was a convertible!  Thank you so much for doing that today!!  And I loved seeing Ronny, my fav Kindergartener who is now 16!  Cody had a blast.
My brother and family got here and it is quite busy.  Good to have family but I am overwhelmed.
Cody is getting tired.  Hope he can slow down.
Thank you all for your continued support and love and help!!!

November 8, 2014

I am beyond words and heart is shattered.  The week came with lots of scans, PET scans, CT scans, MRI's, X-rays, and radiation began on Cody's brain for the tumor there.  He has had 3 rounds and we will continue on Monday and he will get 10 and maybe a boost of 5 more.  The chest tube is in and draining nicely which will make breathing easier and make Cody more comfortable.  So the plan is to go home today.  It is day by day and he wants to get home to see his dogs.  We have told him that we can bring them here but his doctor said there is no reason he can't get home.  His surgeon figured out a way to give him a drainage system that he can go home with. So we are leaving shortly.  I have lots of drugs, including the rescue wafers needed in the event of another seizure.  He had the grand mal on Tuesday and two more smaller ones on Wednesday.  His seizure medicine was increased and a new drug added so hopefully that will all work.  It is so scary and so heartbreaking.
The support has been amazing and so deeply appreciated.  I am lucky that way.  The support from Sloan and the preferential treatment has been unbelievable. Cody has a huge family here and the love is beyond words.   Cody has spent 1/3 of his life here.  It's our safe haven and we can come back any time, any day and whenever we need to.
We are working our schedules and visitors.  My brother and his family come Monday and Casey comes Friday and my dad and stepmom come next Monday.  I cannot be alone with him so all is being worked out.  There will be lots of sleepovers at my house.  All are welcome.  All are welcome when we come back to Sloan too.  Open door, always.
Cody has been such a fighter for almost 6 years now-Dec 14th will be 6 years that he has been fighting cancer.  He continues to amaze me every minute.  He is scared, worried, and petrified but still manages to enjoy his hot wings and smiles.  I want him to get home, even if for a day, to see his dogs.  Yes, my heart will be breaking but we will do this.
Thank you all so very much!  I will do my best to stay in touch here.  Love you all, more than you know.
PS. Huge thanks to my great friends that left work to come see us, those that just did not go to work, those that came after work, and to Tracy and Gregg thatt flew in from FL last night!  I did not want to write names here because I knew I would forgot someone.  Our days are blended together.  Love you all.  xoxoxoxo

Tues. Nov. 4

This is hard to write.
After a good night, the day did not end well.
We went down to xray around 9 am. While sitting in the wheelchair, Cody had a grand mal seizure. It is beyond describable. Uncle Jim was there and we both freaked and started yelling. In a matter of seconds, he was flooded with help.  We landed in icu. A cat scan of the brain was ordered. It is not good.  The cancer has spread.  Cody now has a brain tumor in the left frontal lobe which caused his seizure. I am speechless. The conversation with his dr was heartbreaking.  Cody will begin radiation tomorrow to try to stop the growth. He had an MRI tonight which only showed the one tumor. He will have a petscan in the morning to look in the rest of his body.  My heart is shattered.  And to think Cody apologized to me for putting me through this. We talked a bit tonight.  He now knows he has to stop school and driving.  I feel awful. Sick.
Cody was up to visitors today.  I am thankful that my friends came up. Tomorrow and Thursday more are coming. It breaks it up and Cody seems ok with everyone.  I pray and ask all of you to do the same.

Nov 3 pm

Chest tube is in. Drain is in place. Dr removed a liter and a half of fluid. The fluid did not appear to look cancerous but pathology will confirm. Dr was not sure if this will help with the pain. He may need this again.  He's very comfortable now. They are giving him a pain pump to help keep him comfortable. Let's pray it's a short stay without any more news or complications.

Monday, nov 3.

So things are not good.  Cody came up to me around 4 am. The pain was unbearable. We are at Sloan. He got an xray and his lung is full of fluid. We are waiting for surgery to place a chest tube in. We are both so nervous and scared.  We are here for a few days. Pray for us!!

Nov. 2, 2014

Sunday-Sitting here watching the marathon with my boy.  He loves seeing the roads near Sloan and the runners are the bridge that we take every time we head in.
Yesterday he tried his luck at another poker tournament.  He was not focusing and got out after an hour.  Thank goodness I had company, Moira and Bernadette.  He is having trouble breathing.  He was emailing the drs and finally spoke to his dr in the afternoon.  We will be going in tomorrow or Tuesday to get an X-ray and see if it is the fluid causing him to have difficulty.  He has to sleep a certain way and now is having some back pain.  It is so heartbreaking to watch.  He is in control and we will get him checked out in the next day or two. Not sure what the next step is.  I spoke to the nurse practitioner that we are friends with and she said it is always hard to take that next step when you have had no symptoms and now you do.  That is where Cody is.  He seems very nervous and he has to be scared too.  I know I am. I hear a cough every now and then.  It really can't get better without some intervention and the realization is hitting me that the chemo is not working.
That's all for now...

Oct 30, 2014

The breathing thing is worrying me.  Cody called his dr today ( and I have to leave it in his hand right now-that would be another reason for him to get mad at me which he does a lot of lately) and he did not get a call back which is unusual and has me kinda pissed.  He will be calling tomorrow.  I am thinking it will not get better, especially if he needs to get some of the fluid out.  He is not in pain, just needs to take deeper breaths.  I know he is worried.  I actually thought he was going to break down last night.  He was mad at me and he saw me upset.  He gets very upset with me and seems to have a very short temper these days.  I am not sure if it is the meds or the chemo or stress.  I am thinking it is prob a combination of everything.  I am trying to do my best here and keep him busy.  It is just hard.  It is hard for me because I sit and watch everything.  He is still pretty active and doesn't sound winded when he talks.
Hopefully we will get an answer tomorrow.  I am thinking we will have an appointment in the next day or so and I hope it is sooner rather than later.  I did speak to a nurse practitioner today and I asked her to call him tomorrow to check on him before I knew he was calling.  Praying for a good night.  xoxo

Oct. 29, 2014

So far so good but blood work is making me more worried.  Platelets are lower since the week of chemo.  I pray this is not the trend, that they will bounce back up.  The plan is for Cody to continue the drug and do blood work on Tuesday and we will go from there.  I think he could be slowing down a bit but not sure.  He does seem quiet.
Looking forward to a good weekend, he does not work and wants to go to the casino again.  He loves those poker tournaments.  He tells me he will make it big one day as a poker champion.  We will go on Saturday as your wish is my command, my boy.  Only wishing I could do more.
November is here this weekend and I am looking forward to our visitors.  Enjoy the rest of the week and Halloween with those little ones!

Oct. 25, 2014

Glad the week is over and we can relax a little.
So far, no effects from chemo, thank goodness.  We are keeping the anti-nausea meds going.  He seems to be a little more sore than usual from the biopsy.  Could be because a different doctor did the biopsy or maybe his body is just tired of those.  He did take some pain pills here and there, but overall, he's a trooper.  He is working the hockey game tonight and I am going to relax there with Moira.  We get to have dinner before too so I am looking forward to that.
We try to keep busy and that keeps our minds off it.  I cry first thing in the morning and before I go to bed.  That is my time.  It comes and goes.  It's normal.  I am numb in a lot of ways too. I am lucky to have such amazing support from my family, in FL and at work.  So lucky and would not be able to get through this without all of them.  Thank you.

Oct. 23, 2014

A bit of good news in all this…the preliminary bone marrow results do not know anything significant.  So that is good….

Oct. 22, 2014

More cancer…this is from his dr today:

Cody’s CT scan does confirm what we saw on the chest x-ray, but provides much greater detail: specifically, there’s been a significant amount of tumor growth in the right lung over the past month (things that were there have enlarged and new tumors that weren’t there have appeared), but more significantly there is now a “moderate” sized fluid collection (called an effusion) between the lining of the lung (the pleura) and the lung.  This is probably why he has been having discomfort when he lays down.  It is not yet significant enough to cause him to be short of breath though he might experience discomfort with deep breaths.  He should continue to do whatever he feels well enough to do.  I would not place restrictions on him simply because of these findings. 

If the pazopanib (the new chemo) works as we hope it will, this fluid collection should go away on its own over the next week or two or three.  If the pazopanib does not help, I fear that he will develop worsening breathing symptoms over the course of the next 2-4 weeks and that we might need to do a procedure to remove some of the fluid to temporarily alleviate his symptoms.   

I thought I would be ok with any new findings.  Well, I was not.  I planned to come home at lunch to tell him.  He is a very strong young man.  His response to me was : "Mom, we will get through this." He saw my tears and I think he sensed my worry and fear.  

We did start the new chemo today and Cody took the day to relax.   He did get out in the rainy, windy weather to watch the last home game for his high school soccer team.  His coaches, Carcone and Choilfi are amazing. They let him out on the field with the team and he beams.  He looks up to these two coaches and they are so good and supportive with him. I stayed and sat in the car.  It breaks my heart to see him there, knowing he cannot play. He took a pain pill for the biopsy pain and did manage to kick the ball a little while the team was warming up.  

Just booked Casey's ticket for Thanksgiving. It will be nice to have him here and with my brother and nephews.  Lots of testosterone in the house, oh boy!

Thank you all for today…there are no words…xoxoxoxo

Oct, 21, p.m.

Long day but we are home.
So where do I start?  The X-ray showed some tumor growth.  Not sure yet if it is new growth or the tumors they saw before are growing.  A ct scan was scheduled for later in the day to get a better picture.
We do not have results of that yet.
Cody's bloodwork was good and the platelets are up.  We will start the chemo in the morning.  That is good news.
The bone marrow biopsy was performed.  Cody is sore but doing ok.  They are looking to see how the marrow looks, is it just worn out?  Or is it some kind of leukemia or are there Ewing's cells there?  We will find all this out in a few days or early next week.
Cody's dr is still hopeful that this drug will help and that a clinical trial will open.  He was very understanding and compassionate today.  He did the biopsy himself and gave Cody a hug when he saw him walking out.  We discussed other options and other places to go.  He knew of the dr that I had researched that is from MD Anderson but is in NC.  He said if he knew a place for us to go, he would tell us and I feel he would.  I asked about supplements and he wants us to hold off until we see how the chemo works.  I really feel we are in the best hands and that we are on the right path.
Praying for a miracle…..

Oct. 21, 2014

So we are heading to Sloan today.  Cody will have bloodwork done and a chest X-ray.  I am guessing at that point they will decide of the bone marrow biopsy is necessary.  They are still saying they think he has fluid in his lungs so we will discuss that and figure out a plan.
He was busy yesterday and I was anxious to see how he did after lying around all weekend.  He was good.  He stayed up to watch more football.
Casey called late last night and he wants to come for Thanksgiving too.  My brother and nephews are coming the day after Thanksgiving so we will have dinner on Friday.  It will be so nice to have them here.  I know Casey is getting worried too. I can hear it in his voice.  All of this breaks my heart.
So send us healing vibes today….xoxoxox

Sunday, Oct. 19, 2014

So thankful for this weekend at home with my son.  He loves his hockey and football so we watched that.  The dogs were right by our sides.  He was quiet and on the couch all weekend so thinking he is not feeling so great either.
Last night, Cody did tell me about the chest pain.  I was able to reach out to our friend and NP from Sloan today and she thinks it could be fluid in his lungs from the tumors.  Not sure if that will change any biopsy plan (not sure about anesthesia) or if there will now be scans.  I am getting anxious and more nervous but the minute.  He gets mad at me if I ask him about his health, I know this is his frustration and worry and I get all that.  I really want to get to the drs so we can talk to him.  We are hoping he can start the chemo once we know what his platelets are.
I wish this was not happening.  Sometimes I feel numb.  I do not know what to do with myself.  I just try to keep busy and to keep him happy and fed.  (Made more chicken soup last night and he is eating it all!)
Keep praying…for a miracle.

Saturday, October 18, 2014

I only wish Casey were here with us tonight, home with the dogs and blankets, watching the Islanders play.  Unfortunately, Cody is starting to have some mild chest pain that has me very worried.  I know he emailed his drs and did not tell me but tonight he decided to tell me.  If it gets worse, we will go to Sloan.  Otherwise we wait till Tuesday at which point I hope we get more information.  He is quiet, I think he is tired and he does not feel so great.  We stayed home last night and did not do much today and have no plans tomorrow.  I know he is scared, he has to be.  I am a mess.  I am trying to stay strong for him.
Yesterday was very special at work.  Everyone wore Cody's shirts and we had a nice bagel breakfast.  The new teachers in my building even bought them. Cody met me for lunch and I think he was kinda shocked to see everyone wearing them.  I work with some amazing and special people.  They are my support here when my family cannot be here and it is so comforting.  I am so truly lucky to have them.
Looking forward to when my brother and my dad and stepmom come.  Just trying to handle that so Cody is not overwhelmed.
Enjoy your Saturday night…xoxoxox

Wednesday, Oct 15, 2014

So his folate and B12 levels are normal.  Biopsy is scheduled for Tuesday.
Tonight Cody went to Alumni Night at Dowling to be award an academic scholarship. A huge thank you to Mary Picarello and Corinne Short for writing such amazing letters on his behalf.  I am so proud of my son, as always.

October 14, 2014

Still waiting to hear from the drs.  They are waiting on folic acid and B12 results before they can do biopsy.  Not really sure of the connection but should hear something tomorrow.  Guess it takes longer to get those results back…until tomorrow.

Monday, Oct. 13, 2014

Good and bad, happy and sad.  It was a tearful goodbye for sure.  Just left Casey and Nicole at the airport.
Blood counts are not high enough.  They are creeping but not enough to start chemo.  We are waiting for the next plan of attack.  We will continue to pray for a miracle.
Not much else to report.  Cody is napping now.  I know he is wiped out.  He had a good weekend for sure.  He pushed himself as he always does.  Not gonna keep writing since I am shot and this probably will not make any sense.  I will conclude once we have a plan of action.
xoxoxoxo

Sunday, Oct. 12, 2014

Busy and tired. We have been having a great time with Casey and Nicole.  We packed it in today.
Cody loved seeing his friends tonight at dinner and was thoroughly surprised. We miss those that could  not make it. Thank you to those that did come, Leah, Renee, Jimmy, Tom, Nicole and Jessie.  It was nice to have Sue and Emily there too.  We love all of you. We had dinner and then all went to the Schmitt Farm Haunted House and the Haunted Corn Maze.  Thanks so much to Kate and her family for letting us all do that.  It was fun and it was full of laughs.  His childhood friend, Jimmy and his sister, Mary came back to the house and we played games. It is kinda bittersweet.  I see these healthy and strong young men and then I see Cody.  It is not fair.
Going to bed now.  Pray for good counts tomorrow.  Thank you.

Wednesday, Oct. 8, 2104

So we are trying to make sense of all this when there is no 'sense' in it.  Cody's dr has been so good and answers each and every question with so much detail.
I will do my best to interpret.  So there is concern that the Ewing's cancer cells are in his bone marrow.  It is not blood cancer like leukemia but that his blood is sorta a highway and the Ewing's cancer cells are flooding it.  This could be the reason they platelets are not recovering.  He gets blood work on Monday so we will go from there.  Last week I tracked down the new med and now we have it and he can't take it.  Disturbing.
We are also asking about options and other places.  His dr prepared a report without me even asking and said we can send it anywhere.  I kinda am leaving that up to Cody.  He asked me to help him today and we will begin looking to see if we want to try anywhere else. His dr is searching and I am confident in that.
For now, I will focus on my time with Cody.  Casey and Nicole come tomorrow.  Casey wanted to do something for Cody so he planned a little dinner party that Cody does not know about.  I tracked down some of Cody's friends and so did Casey so it will be fun to have them altogether.  Cody will be surprised too.  We are going to the hockey game Saturday and Cody will work it.  It is the last home opener at the coliseum.
Cody was beaming yesterday!!  He got a call from his hockey player, Richard Park..from Korea!  He could not stop smiling.  I had emailed Richard and he then he took it upon himself to call him.  Such a special person.
I am so blessed to have all my support from my work family each and every day I drag my butt there.  I love all you and I am so lucky.  I cannot say it enough.
Love that my neighbors are some of my best friends too, love those Silvino's.
My FL family, my dad and stepmom, my brothers and Veronica and all my extended aunts and uncles and cousins…I wish we lived closer.  I am anxiously awaiting your visits.
I am going to read these emails again that the dr wrote and add more when I can…have a good night all.
Praying for a miracle…..

Tuesday, Oct 7, 2014

So we cannot start today.  His counts are not high enough.  His platelets are 88,000.  They are creeping up.  Just spoke to our NP and she emphasized that his body is tired.  She does not feel he has cancer there but the fact that his body is tired is why it is taking so long to bounce back.  I know he called MD Anderson today. We had a talk about options and there is just not much out there.  Sloan is looking, NYU is looking and we pray.  I just feel helpless.

Tuesday, Oct. 7, 2014

Prayers for good blood counts!  Thanks!

Sunday pm….

No skydiving today.  The weather conditions were not good (wind) so it did not happen.  The season ended today so we will have to wait.  I am happy and sad about this.  I know Cody wanted it more than anything and that makes me sad.  I am happy because I have to think that this happened for a reason.  He was not supposed to skydive today.  Thanks for all checking in on us.  Hopefully we can make that happen another time.  Good night all.

Sunday, Oct. 5, 2014

Well, I am the mom to a 24 year old now.  I feel OLD!  Glad Casey and Nicole will be here on Thursday.
Things are quiet here.  We did get the chemo but we cannot begin it until his platelets recover.  The sad fact is that they might not recover.  Cody's body is tired and is kinda resistant to chemo now since he has had so much.  I am really leaving it all in God's hands.  It he recovers, then we give it a whirl.  If not, then we know how tired his body really is.  We have been doing some different kinda things.  Just yesterday while it was pouring we hung out in his bed and watched silly videos.  Last night he asked me to lay with him.  Precious time and I would not change it for a second.
I just dropped him off at Adventureland so he can do the Islander Meet and Greet with the players.  He is a trooper.  He had to be there at 7!!  Now we are waiting to see how the wind fairs out today so he can skydive.  Last night, winds were going to be an issue.  Seems very calm out there now but you never know how it is out east or up in the air.  So I will wait for the confirmation.
Yesterday he went to the movies with Moira.  I decided to do my hair appt and she took him to a movie.  I am not such a movie person but Moira and he is so it works.  It saddens me that he does not have those few friends to hang with but I am so grateful for all of mine.
I will update tonight regarding his skydive experience.  I am sure it will be tougher for me on the ground.

October 2, 2014

So we are getting the drug.  It will be delivered on Saturday.  Once platelets are over 100,000 we will start the pazopanib.  Pray.
Tomorrow Casey turns 24!  He is the reason I am called 'mom'.  I am glad he will be here next week so we can celebrate.  Happy Birthday, Casey!!
Spirits seem to be ok tonight.  There are definitely more quiet times but we do talk and Cody seems happy about the drug.
Sunday is skydiving.  I am excited for him but I really want that behind us.  Lucky to know some friends will be with me and one, MOIRA, will be diving too!
Again, I am just saying that my family, my work family and friends are amazing.  I feel so loved and everyone is so supportive, even when it is hard to say anything.  LOVE YOU ALL!

October 1, 2014

To say Monday and Tuesday were a whirlwind would be an understatement.  The tears have not stopped.  I am trying to be there for Cody, as I always am.  He has questions, here and there but I do not think it has fully hit him.  I do see a complete change in him but I am trying to make sure he keeps his core-his amazing, sweet, humorous character in him.  He is trying to keep busy and went to school and did a presentation.  I went to work till 12 and cried.  Thank goodness I work with the most compassionate teachers and administration in the world.  Casey and Nicole are coming next Thursday for the weekend.  Trying to figure out when my brother will come and then my dad and stepmom.  Right now, Cody just wants to be home and do his things so not asking him to travel to FL to see them.  He loves being home with his fish tank and his dogs.  We will try to do a few things here to make his 'hang out' room more comfy.  He loves watching his fish and hanging with his pups in that room.  He is eating great, actually finally he likes my chicken soup.  Made the 2nd pot last night for him.  We are working on getting the new drug, waiting for insurance approval.
He was given the all clear to go skydiving.  He is going on Sunday with some of his dad's family and his dad.  Of course, I will be there and will be so glad when his two feet are back on the ground.  He has asked each and every time we are at Sloan when he can do bungee jumping or skydiving.  He has been waiting for his platelets to be stable and they are now before he starts chemo again.
So for now, we enjoy life.  We do things Cody loves.  It has kinda been that way for almost 6 years now but there is a different plan now.  He wants to continue to do his internship with the Islanders  He loves that so I will support him.  I might be sitting alone at a few games but what the heck.  He feels good now, without symptoms and we can only hope that he remains that way for a long time.  When that changes, we work on another plan.
Thank you all so much for everything…there really are no words and I know that.  Being there is what matters.

September 29, 2014

Relapse…the phone call came to Cody and they told him to come in.  When he asked if it was bad news, the NP said, "yes".  He called me immediately and I rushed home.  Thankfully, my job and the people I work with are so understanding.  Cody has new tumors in the right lung and chest wall.  It is so heartbreaking.  I am really speechless.  The plan is to stop current chemotherapy and start a new drug if all is ok with the EKG today.  The drug is pazopanib for those that are interested. Comes with side effects, including liver damage.   It is oral so we do not have to travel in.  Our options are limited.  If this works, scans in 4-6 weeks, we continue.  If not, we pray a clinical trial for new drugs opens and he can be a part of that.  The drugs are being tested now and hoping they are not too toxic for those on the trial now.  Cody is scared, he had a few questions.  He wants to continue with life, school and his internship.  It will keep him busy and he won't be home thinking about this every second.  Right now, he is not showing any symptoms.  So until he complains of shortness of breath or pain, we continue to live life, as we were told today.  Casey is coming and I think my brother will come too.  Trying to work that out.  Thank you for all your continued texts and calls and support and most of all, thank you for the love.  We need prayers, lots of them.

September 27, 2014

Today is the first birthday for my mom in heaven.  I cannot remember the last birthday I spent with her which is sad but I do miss shopping for her and calling her. Happy Birthday, Mom.

Long day yesterday.  We were on the road at 7 and got all the tests in.  He had a really long MRI, felt like it anyway.  His platelets were not high enough for chemo.  It has us both concerned and Dr. Meyers said this happens.  It is a lot of chemo.  We discussed it and will try again this Friday.  He will do a count check during the week and see if he is trending up which I am sure he will be.  He is worried as I am too.  He is having some pain in the leg so we are watching that.  They can't feel anything but there is some pain.  Hoping to do some physical therapy out here too.  Praying he gets on track soon.

Enjoy this beautiful weather here on Long Island.

September 25, 2014

They call it scan-xiety…well, I have it.  Tomorrow we have scans, PET scan, CT scan and an MRI in addition to bloodwork and hopefully cycle 3 will begin.  I ate a small bowl of soup for dinner and Cody sucks down 6 tacos.  Guess he does not worry like I do.  I hear him singing "Don't you worry child, heaven has a plan for you".  I walk away with tears.  While I definitely feel we will only get positive results tomorrow (hopefully tomorrow) I cannot begin to think about how parents deal with their own loss.  I know 'heaven's plan' for Cody is to show the world how he can beat this.  He shows me each and every day and I admire his perseverance.  He is taking classes again and working back as an intern with the Islanders.  Not sure how long he can keep it up, but he plugs along.  So pray for us tonight…all good things.
We got great news today that Casey is now an official helicopter pilot.  Unbelievable.  He has so many titles under his belt and I am so proud of him.  He passed with flying colors and sounds so happy about it.
Wishing all of you a great night and a restful one…xoxoxoxo

September 19, 2014

Friday…well chemo did not start today   Platelets were not up to par.  So we do it next Friday which is also scans day.  I already feel the anxiety settling in.  Cody is feeling well and life kinda seems normal.  School is in full swing for both of us and Cody is doing an Islander event here and there.  I am exhausted from the week and am looking forward to a quiet weekend. Enjoy the beautiful weather!

September 7, 2014

So we are trying to get back into the swing of things…with school.  Only now we have a few other challenges.  We are trying to schedule Cody's chemo and appts so that he does not have to miss school. He does not have class on Fridays so he is going to do his appts at MSKCC on Friday and see how that goes.  That would mean chemo over the weekend but hopefully we can get it done early and he can enjoy his weekend. He completed round 2 and will start the 3rd cycle on the 19th which is a Friday.
He had a pretty good week and will have a full week of classes beginning tomorrow.  It should all work out.
Today we went to Port Washington to give his little cousin, Matisse a remote control boat that my friend, Margo gave us.  Matisse was so very excited.  It is perfect for him.  Below is the photo.  Thanks, Margo!
Here's to a great week for all of us!!

September 1, 2014

Today starts the beginning of Childhood Cancer Awareness Month.  I hope, in some way, you should your support.  A simple gold ribbon will do!
Lots of scheduling to do.  I know Cody is not feeling so great so that does not help.  His appetite is down but he is trying.  He pushes himself in ways I know I could never do.  I am proud of his perseverance but also want him to take care of himself.  Today is a day of rest.  We went to the casino yesterday and he entered a poker tournament.  He knocked out 2 players and came out ahead.  The tournament started with 119 and he was number 15.  The top 15 got a pay out.  He loves it and he was so nervous.  He has always played online and watched it on TV.  It was a long day but a fun one.
Cody heads in to NYC tomorrow to begin the 2nd week of the 2nd cycle.  He will miss his first day of classes.  This is where it gets tricky.  I have tried to persuade him to just take 1-2 classes but he is pushing for 3.  He might be late and have to miss a few but he wants to do it.  He also wants to continue with his internship.  He has a meeting there tomorrow evening.  It's a lot and I am worried.
I will continue to pray that he can manage all this and that I can too.  I start back tomorrow, teachers for 2 days then kids on Thursday.
Enjoy Labor Day and relax…xoxoxo

August 26, 2014

I think I put the date wrong yesterday.
Today was the first day the nurse came.  She was very sweet  but it took a long time for her to get through everything.  We are trying to work out a schedule.  She will work us in for tomorrow.  The original nurse could not come because she wanted to come at 8 and that was too close to this infusion this evening.  We will meet her on Thursday.  She seems really nice on the phone.
I feel like this last week of vacation and we are trying to cram everything into it!  I need to get work done.  Hopefully tomorrow I can get some things done.
Thanks for reading and checking in with us!
Special thoughts today for the SooHoo's.  Today is Tyler's angel day.  For those that do not know, he was a former student and passed away from a brain tumor.  He is watching down on us.  RIP Tyler.

August 25, 2014

So we were in and out of the city by 12 yesterday.  We got up early to get a jump on the traffic.  We got the meds and we were off.  We had the whole afternoon home.  I was able to get into work and he was able to nap. All went well.
Today is the first day the nurse comes.  I really wish I could do this myself as I am more protective.  I will see how it goes.  His port is accessed so just have to watch and make sure it is cleaned.  Wish us luck.  Today's nurse comes later but the next three days, she will be here early.  I was kinda hoping it was the same one but guess that is not happening.  We are also working on Sloan in Commack.  They still consider him a pediatric patient so they will not treat him there.
Hope everyone has a great Tuesday!

Sunday, August 24, 2014

I sure hope that someone is looking down on me to help me get through all these scheduling issues with Cody.  He made it through the weekend in Canada.  While I admire his will and drive, I just do not know how he is going to do everything.  He plans on attending school and doing his internship while getting chemo.  It is a lot to work out!  He is meeting with his advisor this week to work out some kind of schedule.  We are not even sure how he will end up feeling.  I am really worried about him.
This will be a busy week for us!  Tomorrow begins cycle 2 and work and then Tuesday we will see how the home care works out.  Should be interesting.  Somehow he will be going to class and working through that too.  I will try to keep my sanity and do my best at my job too!
Here's to a challenging few months….good luck to all of us!!

August 20, 2014

Wednesday-Looks like we have the diarrhea under control.  Cody seems to feel a bit better today.  He is worried about his appetite but I think it was ok today.  I know he emailed his doctors.  He is excited because he is going to be on WPIX tonight with that boxer.  He mentions Cody in the report.  Pretty cool.
Yesterday we went to a trade show in NYC.  He is trying to get ideas for his business.
Today we hung out and did a few things here.  Tomorrow he is going to the Yankee game.  Hoping Uncle Jim makes it back in time or I have to go.  Not thrilled about going.
Have a good night everyone and watch WPIX at 10….thanks

August 17, 2104

Sunday-Quiet and relaxing weekend.  We ended it tonight with a bike ride.  Our friend, Moira drove out there to go with us.  Cody did ok but was pushing himself.  He was tired but he did well.  He barely moved all weekend so this was a big deal.
I want to thank my Aunt Mary for sending me the cassettes she found of my mom and family.  My grandparents are on there talking too.  It brings you right back.  Thanks to my friend, Bernadette for letting us borrow her cassette player.  Hard to find one these days!
Tomorrow is blood work.  We are planning to go visit Corinne and her boys after.  We have not been out there this summer, just once.  It has been a busy one.
I might stop by work in the morning and just see what it all looks like.  It will be here before we know it. It was nice having off and being able to focus all my energy on Cody and his treatment and appointments.  Busy week ahead with lunch date and then Cody is going to the Yankee game with his uncle on Thursday.  Friday morning he is going to Canada for the weekend.
Here's hoping for a good week for all of us.

August 16….

Here are the clips from the fight:

https://www.youtube.com/watch?v=AuNUX6qlBdM&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw

https://www.youtube.com/watch?v=n6zDNtFIRx8&list=UUvcdHSQ8H5Yb3tC7Hxz6bbw

Enjoy!

August 15, 2104

Long few weeks.  Glad it is behind us.  Now we just have to figure out the rest.
One of my biggest challenges to me personally is how to let him go?  I know he needs to do things without me and he does (he is flying to his dad's on Friday and going to a Yankee game with his uncle on Thursday) but I hate when he goes alone.  I worry and worry and worry some more.  It is a different challenge for me.  I was speaking to our new friend from MSKCC, David.  He is probably in his late 40's.  We shared a few tears.  He said he worries about his wife and how she feels and deals with all of it.  He has 2 young kids and that is another worry for both of them I am sure.  Different for all of us, but somehow we get through it.
Cody did well.  He had a few days of nausea but we got that worked out.  It was better to nibble and not have a big lunch right after the chemo.  So he had some crackers during the infusion and we had later lunches.  Both days were much better.
He is off next week with just blood checks and then we head back on the 25th.  We will have to see how the home care all works out.
Hoping for a quiet and relaxing weekend.
Enjoy yours!

August 11, 21014

Day 6 was today.  It is just one chemo drug.  Cody's counts were actually very good, best they have been in a while.  He did well.  It was kinda a long day as they were busy there and the pharmacy was backed up.  We saw our friends today, Meg and her mom and as always, we wish them continued great health and positivity.  Cody hung for a while with a kid from Lebanon and he does card tricks. That is the attached pic.  Also got more pics and the actual air time for Cody on Showtime at the fight on Saturday.  I can email the link.  Still trying to figure out how to get it to Facebook.
We will drive in again tomorrow.  All is good, so far and we will pray it stays that way.

August 10, 2014

What a long week.  Cody completed his first round of maintenance chemo yesterday.  He had it from Tuesday-Saturday.  So far, he is doing well other than being tired.  We are doing round the clock meds for nausea and we are prepared with tons of Immodium for another other issues.  He is still eating but his cravings are a little odd.  Keep praying!
Last night was amazing!  The fights were something to see.  It was more than I ever imagined.  I always like seeing behind the scene stuff so there was a lot of that.  The camera was on him and he was on Showtime and we will get a copy of the tape to see that.  We went down after the game to meet the boxer, Danny Jacobs.  He was so personable and hugged Cody when he saw him.  He thanked us for being there.  He was joking with Cody and was truly a nice man.  We met his mom, son and his fiancé too.  The girl and guy that came with us from Ronald House were so nice.  We had a great time!!
We got home today around 12 and we are pooped.  We will go back in the morning and see if the 2nd week of chemo will be starting.  We are going to commute this week.  There is a lot of down time and this way we can be home in our own beds each night.  It is just for the 5 days if it is a go.  We can do this.
Have a good Monday, my friends…xoxoxo

August 9, 2014

What a slow, long week.  It has been going smoothly, thank goodness.  I think I see a difference in Cody's cravings.  He ate Chipolte 3x this week.  I am fine, he is eating and he is actually slowly gaining!  We took a ride down to Chinatown yesterday.  It was a beautiful day and we had a nice walk which we both needed.  We crashed early last night.
Today we are headed for day 5 and we will come back Monday to check his counts and see if we will continue for next week.  I think we might commute next week.  Maybe break it up, not sure.  It's nice staying at Ronald and being close but it is not home and there is a lot of down time here and that gets $$ too.  I know I will have the gas expense commuting but we can sleep at home and eat at home.  We will figure it out, we always do.
Tonight is the boxing event.  The limo is getting us here at Ronald at 5.  There are two employees here going too.  It should be a fun time.  I know Cody is looking forward to it.  I am hoping he gets a nap in before we go.
We are off to Sloan.  Should be a quick and easy infusion.  He actually gets a few, nausea med, a steroid and then the IV chemo and then two pills of chemo too.  Crazy when I think I of the big picture.
Enjoy your day, my fiends and family.  We love all of you!!

August 6, pm...

So a little bit of a hectic day.  We finally spoke to Cody's oncologist and he said the plan is that Cody returns on Monday and then we will check counts.  He is not sure how Cody will do.  These drugs are not supposed to be so immunosuppressive so he may continue with chemo next week, after all.  Crazy few weeks for sure.
Today I stood in for Jim.  He called me around 12 and said Matisse had a fever of 104 and that is non speaking english grandparents were bringing him to Sloan.  Jim is in NC and Matisse's mom was working downtown.  (No further comment needed there.)  I waited for them to come and Matisse got his bloodwork.  He sounds like he has some kind of bug.  His counts were good so they quickly sent him home.  He no longer has a mediport and is off treatment so he did not need to be there.  He was more dangerous to the patients there.  Cody had left and came back to take a nap.  Matisse was ok and left.
I am proud of Cody for sitting in a focus group tonight.  He was with his social worker and another coordinator and about 10 teens/young adults with cancer.  He enjoyed it and offered lots of feedback and maybe made a new friend.  He is so good with all that.
Still figuring out plans this week but may go home tomorrow for the night and return Friday.  Not sure as he is trying to meet a friend here tomorrow evening.  Just working out details.  I could use to go home.  I have to go get clothes for the big fight on Saturday anyway.
Hope everyone has a good night…..I'm pooped!

August 6, 2014

Wednesday-Sorry for not posting yesterday but the reception was bad.  So maintenance chemotherapy did indeed start yesterday.  Cody is getting irinotecan by IV and then temozolomide orally.   The original plan was for 10 days of this but with his history from the last drugs, the team decided to do 5 days of it for this cycle and see how he does.  I think he was a little nervous but so far so good.  He is on another antibiotic and now charcoal to help his gut adjust to the new drugs.
Tonight he was asked to be in a teen/young adult focus group.  They will have dinner and then have a discussion.  I think that will be great for him.
He was asked to be the honored guest of the boxer, Daniel Jacobs for his title fight this Saturday night.  Daniel is a 2 year survivor of osteosarcoma and work with the Ronald House.  We will be going with 2 people that work here and they are getting us a limo.  We might go home for tomorrow because now we will stay here Saturday night too to go to the event.  He gets VIP access, whatever that means.  Here is the link for the article about Saturday: http://www.thesweetscience.com/news/tss-press-releases/19091-golden-boy-fighter-daniel-jacobs-to-make-cancer-patient-wish-come-true-on-fight-night
If you google his name, there is more info about his illness.  We are looking forward to it.  I am not much into boxing but the experience will be awesome.
Ohhhhhh and last night, we stopped in the little candy store for my ice cream addiction.  I know it was someone but could not place the family.  It was Neil Patrick Harris with husband and the most adorable twins.   He did not say much and was kinda keeping to himself so I did not pressure him for a picture.  His nails were all polished different colors and he had a hat on. When he stepped outside he put sunglasses on.  It was kinda neat!  I get star struck and Cody gets embarrassed by me…LOL
So today we are heading back to Sloan around 11.  Cody is still sleeping and I guess I will go get some breakfast.  Keep your fingers crossed for a smoooooooth week.  Love you all!!!
Special thank yous to our neighbors for taking care of the fish and for Moira for taking our pups.  I know Bern offered too, so thank you.  We are so lucky to have ALL of you at our fingertips!!!
And Happy Anniversary to my dad and his bride, Bonnie…(it is either today or tomorrow, I always forget the day!)

August 2, 2014

SO we do not know yet about chemo beginning Monday.  We will do blood work nice and early and go in if we need to.  I will pack and be prepared.  We want to stay Monday and Tuesday night and then come home Wednesday and drive in Thursday and Friday.  We have to do this for the first 10 days and just for the first cycle to see how Cody does.  I want to get it out of the way before school starts.  Then we will do the rest of the infusions at home.  He needs to get his port accessed on a Monday and then chemo at home.  We have a lot to work out as he is scheduled to start back with his classes on September 2.  I hope he is not doing too much.
Last night Cody raced his car which he has not down in a while.  He was home around 12.  I think he had a good time.  If nothing, he got to hang with the guys.  This weekend we have no plans.  I kinda like a rainy day every now and then.  Makes me get stuff done here.
Today marks 3 months already since my mom passed.  I actually think I saw her here the other night. I was getting into my car and she was on the other side.  I was afraid at first because I knew someone was there.  My heart started racing.  It was all of 3 seconds.  I still have a good portion of her ashes here that I plan to scatter when we get the first snow fall.  She loved the snow.  Maybe then I will see her spirit more.  Yes, I believe in that.
So with that, I need to get moving.   Enjoy your weekend, my friends and family.  Love you all. Thanks for always reading!

August 1, 2014

I cannot believe it is July is over.  How did that happen? It is really nice to just chill and not have to worry about work.  We have lots to do with Cody's treatment but at least I do not have to worry about work.  Today he goes for blood work to see if platelets are high enough to begin treatment on Monday. I really hope they are so we can get this all done before I have to start thinking about school.  We will know shortly.
Enjoy your day and your weekend, my friends….

July 27, 2014

Sunday-So Cody had a good weekend.  I am happy for him.  Yesterday he went to ride go carts with 2 friends from high school.  One was his neighborhood friend, Tom and the other was a guy he keeps in touch with.  He needs that sooooo much.  I got teary eyed as he drove away in his car with his friends in tow.
Today he is at the movies with Moira and her niece Meg.  We all went to lunch but I just do not like the movies they do.  Today they are seeing "Hercules".  Not for me at all.
I am glad he is out and is away from me.  He seems to have a little cold but he feels good.
Tomorrow is blood work so hoping all is good.
Enjoy your Sunday.

July 24, 2104

Thursday..so Cody got up early and went to Sloan in Commack for bloodwork.  By the time he got home, his phone was ringing.  His hemoglobin was 7 which indicated he needed a transfusion and his platelets were 9 which indicated he needed platelets.  It was in the critical value mode.  So off we went.  It was a long day.  He did well and ended up getting 2 units of blood.  He should be feeling pretty good tonight.  He is tired from the day and he gets benadryl to counter any reaction so that keeps you groggy.
We are both looking forward to a good night's sleep.
Prayers tonight for the sweet girl we met today.  She is going through a tough time right now.  She will be fine but has a long road.  Prayers for the nice man we met too.  He has Ewing's also and is a dad to a 3 and 4 year old.  Sweet man.
Good night all.

July 21, 2014

I would have bet on the chances that Cody needed blood today….and I would have lost.  He did get platelets but no blood.  He is getting hoarse again and I am beginning to think that is linked to the chemo.  Could be, right?  We will check with the drs.  Pretty easy drive in and a little traffic this afternoon.  Next blood check is out here on Thursday morning.  Keep praying….
And add Sam to your prayers.  He is getting his mediport out tomorrow!

July 20, 2014

Sunday night.
Quiet weekend but we did get out for wings last night.  Today we stayed home as I think the chemo is kicking in.  We are scheduled for blood work out here tomorrow afternoon but Cody thinks we need to head in tomorrow.  He emailed his drs so we will see.  He was up a few times with an upset stomach but he is still eating so that works for me.  Always stressful and worried, always.
I talked to both of my aunts today and also one of my cousins.  We talked about my mom and it is still so sad.  I looked through more pictures today and that always brings tears.  My aunt took these cassettes that my mom had.  We did not know it was her singing and talking on them.  They are supposed to figure out how we can get copies made or at least get them to me so I can listen to them.
I will keep you posted on my boy.  Good night all.

July 18, 2104

Friday-Long week!  We had two nights at the Helmsley and two nights at the Ronald house.  There was lots of moving which is tough.  Cody did well.  It was his LAST cycle for this protocol.  He will begin maintenance the next round.  He is amazing.
We hung out with Sam on Wednesday!  He was back and is supposed to get his port out.  He is amazing too.  He could not go to dinner with us and it is hard for him to sit.  So we brought it to him.  He is such a sweet guy and is doing this alone.  He does have a friend in Poughkeepsie he is staying with.  I wish I could do more for him.  I am trying to kinda push he and Cody but Cody is kinda shy about it.  Sam always asks about him and they did talk a little.  I am hoping to get him out here one weekend.
I did a lot of talking this week.  I saw the family I met on their day of admittance.  The mom is Asian and the dad is Irish.  It was the first transplant taken from both parents.  They were not a match but it is working!  Their son is having a tough time and sounds like the same route Cody went in a lot of ways, feeding tube, GVHD, C diff, nausea….so Cody and I both tried to offer our support.  I also met a family just starting out with their son with Ewing's.  Their parents are sweet and very scared, understandably so.
It is tough to see families going through this tough time.  I know I am in it and when I really think about it, I get upset.  The support from all those that work there is amazing. We had a different nurse and she was a doll.  Very caring and she had a tough childhood, growing up without parents.
Long week and I am glad to be home.  Looking forward to chilling all weekend.  Praying for all good stuff!

July 16, 2014

Wednesday-So today started out a little shaky.  Matisse, Cody's little cousin came to Sloan today to get his last dose of pentamidine.  It is a preventative medication for pneumonia.  He has gotten it before but this time it just did not agree with him.  We are sitting on Cody's room and his IV was going and he said his throat was bothering him.  He got a drink and then he just said he was tired and that he did not feel well.  He said on his dad's lap and became lethargic.  I ran to get his nurse and then the rush of drs and nurses came in.  It was scary and Cody was on his bed and was just watching.  Matisse said he couldn't breathe and so oxygen was started.  The pentamidine was stopped and fluids started and he slowly started to perk up and his color resumed.  He was moved to a bed and rested a little while and then he was back to himself.  It was strange because the reaction happened pretty much when the infusion was ending and he has the med several times.  Thank goodness it was his last dose.  He is doing VERY well and leading a pretty much normal life now.
Cody was fine and is doing well.  He is eating and even the drs are impressed that he eats through his chemo.  I met a family today that is just starting out with the same cancer.  Their son is 16.  It is just so sad.  They are so scared and I tried to fill them in and offered my help when they might need it.
I am happy to say that my buddy Sam is back in town.  He is doing well too!  He is actually scheduled to get his port out.  He is the 27 year old that had his first diagnosis of Ewing's at 21.  We met him last year.  He relapsed but seems to be doing much better.  He is staying with a friend in Poughkeepsie I think.  I met him in the hallway and he looks good too!  We tried to plan dinner but he has a hard time sitting.  So we decided to pick dinner up for him and bring it back to Ronald for him.  (We got bumped out of our hotel.) We hung out in the 'living room' here at Sloan for a while.  He is a great young man and has no family support. So sad to me.  He is doing this all on his own.  He was so helpful to me when Cody was first diagnosed, telling me about this cancer, etc.  I ran down to get ice cream and made a delivery to him.  He is very thankful and appreciative.  He seemed so happy to have us to talk to.  I wish Cody would be more interactive with him but you cannot force that.
Sweet dreams to all...

July 14, 2014

Cycle 14 is underway.  This is the last one before maintenance.  We are hoping for a smooth week here at MSKCC.  Thanks to all those that include us in their prayers. Thanks for all the encouraging words and posts.   Thanks, too for our continued help with the fishes (Silvino's and Bern) and for the doggies (Moira, you are the best!).  We are lucky that way.  Cody adores all of his pets and we would not be able to have them without the support and help from all of you!
We were hanging out and there is this adorable 16 year old here with osteosarcoma.  He is from Lebanese.  He is here with his cousin.  He met Cody a few weeks ago, doing card tricks.  He and his cousin hung out with us and it was so cute to see he and Cody interacting.  With the card tricks they both know, I was encouraging them to go on "America's Got Talent."  If the rubbed their bald heads together, Howie would surely pass them through.
I will update later this week, so far so good!

july 13, 2014

World cup final!!  Cody is glued to the TV!
Tomorrow we are scheduled for cycle 14 which is to be the last one in the protocol then we begin maintenance.  We will be staying in the city.  They tell us the Ronald might be booked so we will get bumped to a hotel..sigh.  (Not really!)  There are positives and negatives to a hotel.  You do not get the meals and the hoopla that the house brings but with a hotel, you do not have to clean the room when you leave.  Either way, we are good.  We will get up and get blood work nice and early and go from there.
We had a nice quiet week.  Nicole was here so we had lunch with her today.  She looks good, as always.
I will keep you posted….thanks for reading!