September 30, 2013

Monday morning-so one more week and treatment begins.  I feel my stomach turning as I am typing.  I really hate this.
Cody has been doing well other than some diarrhea which we are keeping an eye on.  I think he is trying to be strong and keep things from me.  I just hope he is telling me the truth about how he feels.  We went to the preseason hockey game on Friday and then to HSE homecoming on Saturday.  Beautiful weather.  Yesterday, he hung around and watched football.  He seems too young to be dedicated his Sundays to football.
Tomorrow is bloodwork out here at Commack.  Hoping for good numbers.
Hope the weekend was a good one!

September 26, 2013

Thursday-I am thankful for a quiet week.
Cody went back to the remote control race track today.  He spent a few hours there and I think he had a good time.  We had dinner at home and he is now watching a football game.  For some reason, he is a Rams fan.  He has his friend over to watch with him.
Praying the weekend is a good one too!

September 25, 2013

Wednesday- Good day today.  Cody is still dealing with a stuffy nose.  So he is on to Claritin now.  Hoping he gets cleared up soon.
I have a special angel at work.  We pay dues for the school each year and someone put in for me.  This kind of thing warms my heart and makes me feel so special.  I am truly blessed.  I mean it when I say EVERY day,  I am touched in some way.  It is truly amazing.   I am speechless...but can always offer thanks.  XOXOX

September 24, 2013

Tuesday-Cody went into Sloan for bloodwork today.  Thanks to my friend, Bernadette and her brother for the car service.  That saved me a lot of stress.  He did well and counts are recovering and he did not need blood or platelets.  He bounces back.  I do know he takes a beating and I think that might be starting to show.  He was on his own all day and went to the soccer game and then chilled at home.  I think he is suffering from allergies so trying to get a grip on that.  He is due to go in Oct. 7 th for chemo and they have scheduled scans for October 17.  I think the thought of that kept me up last night.
I survived another "Meet The Teacher" night. Glad that is over with.
Have a great day, my friends...xoxoxo

Sept. 23, 2013

Monday...Cody was home all day and seemed to be feeling ok.  I think he is a little bored so trying to get a few things set up.  He did say he played the drums.
He goes to Sloan on Tuesday for bloodworm.  Thanks to the Cahalane family for the use of the car service.  Bernadette, I appreciate all your help and offerings.  You are too kind!!!
Hoping for a good day!

Sept. 22, 2013

Sunday-Very quiet day.  Not sure if it is the medication or just that Cody is still recovering.  It is probably a combination of both.  He hates when I keep asking him how he is but this is what we do.  I try so hard to relax but kinda hard to. He ate well today but has just been lying around all day.  His friend did come hang out so I know he liked that.  He has been watching football most of the day.
I am just trying to get used to the new routine.  It is another busy week.  Let's just hope it all ends well and flies by.  I need another weekend!
Have a great night and Monday, my friends.  xoxoxoxo

September 21, 2013

Saturday-Once Cody heard that he might go home today (which he did!) he was up at 8 and ready to go.  All was well and we checked out around 1:00.  We got home and both took nice long hot showers.  Then we ran a few errands.  He needed to stay busy and he was just blah.  We will start back on the anti depressant tomorrow, thank goodness.  He has planned on trying to go to the hockey game tonight at the Barclay Center and that did not happen.  Probably would have been more than I can handle.  I still worry about him even working events.  It's tough, for sure.
Quiet at home tonight and hope it stays that way!  Enjoy your Sunday!

September 20, 2013

Friday-Cody did well today.  I know it was a long day for him.  He did not have any visitors until I got here around 5.  One of his old nurses came today and then another one came tonight.  I was not here for the first visit but enjoyed the second one.  Again, so many great people work here!! His counts are slowing recovering but now his body needs to.  All this trauma on his organs scares me for sure.  He looks tired today.  He said the patient next door had a rough night and day and he could not sleep much.  He had to stop his anti-depressant because of a drug interaction and I can see that having it effects too.  Trying to keep his spirits up.  He shared a dinner with me but did not eat all that much.  Not sure when we are going home, but it is coming. 
Thank you again for all the prayers and kind words...we are blessed.
XOXOXOX

September 19, 2013

Cody did well through the night and today.  I did ok.  I started to lose it as soon as I walked into the building.  I had my moments throughout the day. I made it through the day because of the support from ALL of my friends at work...thank you.  I am amazed that there is so much compassion and caring people all in one building.  Bernadette, you really are my right hand.  It is great working with you and we are an awesome team.  Thanks for having my back...literally.

So I had wanted to sit down with the drs today and thankfully one of the drs on the team was there for me.  I needed to try to piece all this together.  So Cody has/had sepsis.  It is a BAD blood infection.  He was in septic shock. Don't google it or you will be as sick to your stomach as I am.   Thank goodness, he is strong and pulled through.  Thank goodness for the team there that knew what to do and reacted quickly.  Scary to look back and think about all this.  This caused the blood pressure drops and heart rate acceleration. This caused the hemo to drop.  His cramps are from the c-diff.  We are still waiting on the cultures which can take up 72 hours to grow anything.  He will be in the hospital through the weekend.  I went after work today and will go tomorrow after work and stay for the weekend.  We will take it from there.  I will actually be happy once I am there chilling with him.  He needs his independence and I get that.  But I need to be a mom too.  It's tough.

Thank you to our friends that we met through CFK.  The cubscout cards were adorable.  Cody enjoyed reading them, perfect.  Thank you for the gift card too.  He was thrilled!!  

Again, I am so lucky to have all of you.  I wish my family were here but I know they are a plane ride away.  Soon, we will have visitors again.  

Have a good night all!  XOXOXOXO

September 19, 2013

Thursday-  This is hard.  Cody was texting me until 12:15.  I know he is adjusting but once I leave, he feels it.  Not sure how this will work but we are trying it.
I need to try to get some answers today and tomorrow.  His pressure was dropping again in the night and he still has stomach cramps.  I am concerned.  I will email the drs and hopefully see them today.
They are saying the cramps are from the c-diff.  Not sure about the pressures.
I am going to work so have a good day all!

September 18, 2013

Hi. I am keeping this brief because I cannot keep my eyes open.  No sleep in ICU.
Cody is back on the 9th peds floor.  He got there around 5.  He had a pretty good day and everything leveled out and is consistent.  I am proud of myself and of him.  I am home and he is at the hospital alone tonight.   It was his idea.  We will see how it goes.  I am planning on working tomorrow and will see how that goes too.  I hope I keep the tears hidden, yeah right!  He is in great hands with all of our fav nurses.  He had a welcoming crew there when he got to 9!  He has his primary transplant nurse tomorrow so that will work out well too.  I will go after work.  Sweet dreams to all and thank you.

September 17, 2013

Here is what the day brought:

Cody became extremely nauseous at around 11pm last night.  I gave him every med I had in the house.  Then at 3 he got up with stomach cramps.  When I woke up at 6, he was not well.  Emailed and called the drs and they told us to come in. His bloodwork from yesterday did not indicate a need for a transfusion.  The first cbc this morning did not indicate the need for blood either.  So he was accessed and the fluids started.  Once here at Sloan he also had a fever.  So antibiotics were started.  The concern was his blood pressure.  It was low and dropped even lower.  After a few low reads, the hospital's rapid response team was called.  Within 2 minutes, his room was flooded with drs from different parts of the hospital including ICU.  New cultures were done and more blood was drawn.  The new cbc said he did need blood.  He was severely dehydrated and sometimes the counts get messed up.  The hope was after a blood transfusion his pressure would recover.  When this did not happen, it was best to transport him to ICU for round the clock monitoring.  We already knew he was being admitted for the fever but did not anticipate ICU.  They did a chest xray, ultrasound of the heart, stool cultures, urine cultures and just trying to find the source of the infection.  His only pain is still in his belly.  He is getting meds for that.  So here we are in ICU.  It is a scary place with a lot of sad people here.  I hope we can leave in the morning and go to the peds floor.  He got a second unit of blood and platelets and his pressures are creeping up.  I am thankful for that.  I am thankful for a few other things today too.  Thanks to all those that covered for me at work.  Thanks for all the messages.  Thanks for Mary Grace for the company.  She was here with Meg and was anxiously waiting for scans to be done.  Thanks for the hugs and so glad Meg for great news! Thanks for Moira for getting the dogs and thanks for the Silvino's for watching the house and the fishes.  Thanks for all the messages, emails, texts and LOVE from all of my family and friends.  We appreciate ALL of it.  Prayers for a quiet night and for better pressures.  

 

 

9/16/13

Monday, Monday..is over.
Cody was supposed to go to the local lab for bloodwork this morning.  When I called to check on him, he said he was exhausted and he had just gotten up. I was so worried that he needed blood. The last time we did labs out here, we did not get the results until the next day!  During my break, I called the Sloan in Commack.  They said he could do it there.  They said we just needed the drs to call for the appt.  I called Cody's drs and within 4 minutes, Cody had an appt today at 1:30.  He went and was done in 10 minutes.  He got his results before 4 and his hemoglobin was fine so no transfusion needed. He is neutropenic again as expected.  I met him here at 4 and we went to the soccer game at HSE.  He sat on the bench.  It breaks my heart.  He loves that sport and I really wish he did not miss out on that.
Yesterday I had emailed the president at Dowling and told him the circumstances and why Cody needed to drop the classes.  I was worried about not getting a refund.  Well, I had an email from him and the registrar this morning saying it was taken care of and no penalties.  Thank goodness that was easy.
Cody will go back for blood work on Wednesday.  Keeping fingers crossed.

9/15/13

Sunday-quiet and calm day.  Cody feels 'lazy' today.  He was on the futon pretty much all day.  I am glad that he is still eating.  He woke up with his tongue coated (a side effect of the chemo) so he did some swishing with a few things to get it under control.
He withdrew from his classes and I know this was not easy.  I think he is better off.  I am trying to think of things to keep him busy.  I know he seemed to be interested in his drums again so hoping he will play those more.  I know he loves soccer and he is going to see his coaches tomorrow and 'help out'.  Maybe he will get back into the car racing again at the indoor track.  We will see.  I just worry about him getting depressed.
He was supposed to go to Sloan on Tuesday and was really upset with me when I told him I was taking off work to take him.  He really wants me to save the days.  I know he cannot control much and he does not have much in the way of decision making so I am the one he controls.  Aren't I lucky?  Well, we both emailed the drs and they said he could do bloodwork out here tomorrow.  They anticipate him needing transfusion support so I am sure that will happen this week.  So we will see what happens tomorrow.
I hope everyone got to enjoy the nice weather this weekend.  Here's to another week.....

9/14/13

Saturday-Beautiful day here on Long Island.  Feels like fall!
Cody got up early.  He signed up to work the computer board for the coliseum for the Sesame Street Show.  It was just sitting but it was a long day.  He is trying to keep going the best he can.  I want him to keep busy so he does not get depressed.  As soon as he came home, he took a nap.  He is a bit cranky and mellow. He tried canning some of his peppers today but we did not have the correct pot to seal them so he kinda got mad....at me.  We are hanging in tonight and just relaxing.
Here are a few photos from my visit in NYC when Cody was at  Sloan.

9/13/13

Hello and Happy Friday.  I am glad this week is behind all of us- with school starting, the heat and the routines and then Cody being gone for chemo.  It was too much.  I was thankful and glad to be back around all the amazing people I work with.  I cannot thank you all enough.  I feel the love and the support and I am blessed and appreciate all of you.
Cody is chilling on the couch as I sit here and type.  He is tired.  He sounds like he is wiped out.  I am thinking that the chemo will build up and he will become increasingly tired.  He seems very mellow.
He is excited to work an event for a little while tomorrow.  It is a Sesame Street show actually and he is doing something with the lighting and he will be sitting.  I know he will need a long nap when he returns.
Tonight I think Cody is coming to the realization that he cannot do school.  It is too much right now.  He missed this week of assignments as he was getting chemo.  I told him when he was diagnosed that he might have to take a year off, but he had to decide that himself.  He said he is afraid he won't go back but we all know his determination and he will.  I feel bad for him as this is a huge decision.  I know he emailed his professor so we will go from there.
Looking forward to a quiet weekend and one with relaxing in it too...have a good one!

9/12/13

Thursday- Cody is home..Need I say more?
He and his dad rode the train home and he and I went to dinner.  Just stopped to get ice cream and now can relax at home, where he belongs.  I missed him.
He had a pretty good week and did well.  He is exhausted and I know he will be glad to sleep in his own bed tonight.
Tomorrow is Friday and I am looking forward to my weekend!!

9/11/13

Such an odd feeling today...sadness for sure.  It is a day of reflection too.  It was nice to see colleagues wearing patriotic pins and colors.  Touching.
Cody did well today as far as I know.  He is hoping he might get home tomorrow!  That would make mama happy for sure!
Another long and hot day in the classroom..I am too old for this!
Looking forward to Cody getting here!!!

9/10/13

It is actually the morning of 9/11.  I will never forget those lives and families affected by this horrific tragedy.
It is tough to get back into the work routine.  At times, my mind is so occupied with Cody.  He slept a lot during the day.  I think he just wants to not sit there and think of what is really happening and that is good.
I left work and met his friend, Nikki and we drove in to see him and to have dinner.  He looked good, a little puffy from all the fluids but seemed in good spirits.  He said his drs were happy that he is holding his weight and not losing any.  He has been eating ice cream so that helps! He had OT and PT and they did recommend a rolling backpack for his IV fluids.   I am hoping he will order one today.
I actually think he missed me!  I know he will appreciate me a little more once he comes home.
After dinner, we hung out at the Ronald house.  It was nice to be with him but hard to leave him.  He is really amazing and so strong.  I know I could not be like he is if I were in his shoes.
Friday cannot come quick enough.  He needs to be home.
Thank you all for your concerns and thoughts.  I really wish he knew how many care about him....xoxoxox

September 9, 2013

Monday (but it is Tuesday morning...I passed out way too early last night but guess I needed it!!)
A day of firsts...
Cody did his first dose of chemo today without me...I am sure it was harder for me to not be there.  I do think he might miss 'the comforts' of mom.  I can kinda hear that in his voice.  That won't hurt him but maybe when he gets testy with me, he will step back a little.  I missed him, that is for sure.  And I missed being there!  I will see him Tuesday for dinner!!!
The first day of school ran smoothly.  I do have some challenges this year.  This is a cute story I wanted to share.  I do not want to spoil the story but know that we got our class list a few days ago so I knew the kids' names in my class.  It is the first time that I have a "CODY" on my list.  My Cody and I joked about this and I just knew there would be something special about the Cody in my class.
So I am outside on the bus platform and the kids are being escorted to me. So far so good, I have about 12 kids on my line.  I look up and see the school psychologist and another teacher scooting, kinda escorting a little boy.  He is crying for his mom and resisting. The other teachers and I are looking and secretly hoping he is not in our class.  They make eye contact with me and I knew he was in my class. They get it to me and I join in on the 'escort' and we walk the boy into the hallway away from the other nervous little ones.  Once the kids see someone crying, then they will join in! I am trying to hold on to him and finally ask who he is .....The school psychologist smiles and says "Cody".  I knew it.  My Cody came into my world kicking and screaming so it only seemed fair that the next Cody I meet would do the same to me.  He hung out in the classroom by the window and I shut it once he saw his mom.  I did not want her to hear him.  Another teacher offered to stay with him and I went back out to meet the kids.  We all came into the room and I just left Cody standing at the window.  Once he heard me engaging with the kids, he started to listen and stopped crying.  I finally asked him to join us and he came over and he was fine!  He knew that I had a Cody at home and I shared a few stories and of course, he smiled.  He is adorable and would not stop talking the entire day.  Hoping today is a better day for him.  Thanks to all those that helped to make that transition go smoothly!!  (Thanks, Jenine and Jodi!!)
Thanks too to everyone asking about how my Cody did today.  I do appreciate it.  xoxoxox

September 8, 2013

Sunday-So not ready to go back to school tomorrow.  Our summer was not really a summer.
Tomorrow I will go back to work.  Cody will be going to the city for round 3 of chemotherapy and lots of ot/pt appts.  It is killing me not to be there.  I am praying I can do this.  He is fine and can handle it all by himself if needed, his dad will be with him.  We will see how long this lasts.
I am planning to go in Tuesday after work and have dinner with him so that will break up the week.  I miss him already.
Wish us both good luck this week!!  Thanks!!

September 6-7, 2013

Hello all...Can't believe it is Saturday night and school starts on Monday.  We have been keeping busy. Cody got a henna tattoo from his friend, Meghan.  It looks great.  The process is that it now fades and will appear as a stain.  We are waiting.  We then went to the tattoo exhibit.  Meghan, her friend and Moira, her aunt joined us. It was fun.  Cody was trying to talk me into another tattoo but I held out.
Today we went to the Contractors for Kids picnic.  It was an all day event.  There were pig races and great music and food.  Thanks to Cody's friend, Nikki and for my friend, Mary and her son for joining us.  I think everyone had a good time.  The weather was beautiful!!  I know I am pooped!
We are so lucky to have the amazing friends from CFK!  We are always treated as family with them around and I feel so blessed.  Thank you all!

September 5, 2013

Thursday-Beautiful day!  We said goodbye to my sister in law today.  We were both glad to have her here.  All worked out perfectly!
We have a busy weekend planned and hope it goes by real slllllooooowww!!!

9/2-9/4

Monday, Tuesday, Wednesday- It has been busy.  Veronica, my sister in law got in and and we have been so lucky to have her here.  She and Cody went to the city for his dentist appointment.  All went well there, of course.  Today he took her to Dowling to see the campus and then he worked for an Islander player signing for a few hours.  He loves it there.  I was at work the past few days, setting up and getting ready for the kids.  Can't believe we are going back.
Tonight we are just relaxing.  Veronica leaves tomorrow.  It was great to have her here for sure!!

8/31-9/1/13

Hard to believe it is September 1st.  Busy summer and not such a good one with Cody's diagnosis.  I am glad for the time we had in FL after Cody's biopsy. It was great to have Casey and Nicole there and to see my family. It was a nice relaxing time.  I am glad I had my brother and dad visit here in NY and and my sister in law comes tomorrow from FL.  Family and friends are most important right now.  Sometimes we feel like nothing is wrong and other times I cannot get a word out with a tear.  Cody continues to challenge me and also keeps me laughing.  Casey got a weekend home to be with his wife, Nicole and he seems happy.  Wish he lived closer.
Looking forward to a busy week but free of medical issues.  Teachers are back Tuesday and Wednesday.  The kids come on the 9th.  That will be Cody's chemo week.  Hoping to get to the city Tuesday when Cody has his dental recheck and then do something fun with Veronica, my sister in law.
Welcome back teacher peeps!