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.