Dec. 30, 2013

Monday…typical Monday in the city but traffic was lighter than normal.
Cody got bloodwork and we met with his drs.  Then he went to radiation and then we had to wait for the surgeon to meet with us.  It is not the regular surgeon so the incision for the mediport will be a little different.  That is all set for Friday morning.  Hoping the weather cooperates.  We head back in tomorrow for just radiation.  Hoping it is a quick turn around.  Looking forward to staying home on Wednesday.
Thank you all for reading!  Special prayers out to a friend and her hubby for a procedure today.  Also my thoughts are with my other friend's family too.  Praying for all of you.
Happy New Year's Eve..hoping 2014 will be a better one for all of us!  xoxoxo

Dec. 29, 2013

Love having a weekend to do nothing.  Well it was kinda busy but no trips to MSKCC.  Today Cody did not get dressed and we just lounged.  I did a few things and am trying to figure out the week. Cody seems to be feeling pretty good.  He made his salsa today and ate really well.  We got to Skype with Casey and this is one happy mama!
Hope everyone enjoyed their Sunday.

December 28, 2013

Things are the same here.  We went to radiation yesterday and will go again on Monday to start the week.
Cody has slowly been feeling better and eating more.  He is still tired but is doing well.
Tonight I was able to go to a friend's (special friend's) wedding and it was so great to hang with my friends for a few hours.  I enjoyed myself and had a good time.  Thank you, Rich and John..so happy for you!
Hope everyone is enjoying their weekend.

Dec. 26, 2013

Scary words to hear from your son's oncologist- "Cody, you almost died from that infection."  Both of our mouths dropped open.  Scary to say the least.
Cody's counts are recovering but not enough to start chemo on Monday.  So that is delayed a week.  Cody's dr said once we resume chemotherapy on the 6th, it will be 25% less than the regular dose.  This is what the dr feared, that Cody's body would not be able to handle all the treatment.  We are continuing with radiation and will be heading in tomorrow but we have Saturday and Sunday off.  Thank goodness the traffic is lighter this week.  Next week, we will probably need to do the train with New Year's.  I am trying to work out the details of the week for the 6th and not sure how that will pan out.  Cody will get his mediport placement on Friday.  That will be in the OR and will require anesthesia.  Looking forward to a quiet night and easy ride in tomorrow.
Today once we were home, Cody wanted to practice with his rc car.  He has not been there in a while. He called my friend Bernadette and asked her to go.  She has been wanting to try it.  They both had a good time.  Then we joined friends Moira and her niece Meghan for dinner at Buffalo Wild Wings.  It was a nice afternoon and evening.
Sweet dreams all…night.

Dec. 25 2013

Home…and almost 2pm and still in my pi's and loving it!!!
We had a nice morning and Nicole joined us for part of it.  We exchanged gifts and had a good time.
Once again, thank you for all of the holiday messages..we feel the love.  Oh and SH family, the $$ wreath was more than anyone ever guessed!!!  So thankful.  Thank all of you.
I hope each and every one of you are enjoying your day with your families..that is what it is all about.  Hoping to Skype later with Casey.  Boy, do we miss him here!!

Dec. 24, 2013

Well, today started out great.  My neighbor and good friend, Sue was going to drive us to the train. She called in the morning and INSISTED that she drive us in.  Our plan was to take the train home.  We got into NYC in like 35 minutes, no traffic.  So we ran in and checked in early and hoped we could get in and out.  Cody sat with his headphones on so I walked out to find Sue who was waiting in her car to see how long it would be.  We chatted a few and then Moira's sister came out.  Moira's niece was there getting scans.  I walked back in with her after a few and Cody was not there, he was already getting his treatment.  Sue waited for us and she drove us home.  It was so awesome.  After my emotional night last night, it was good to have the company and not have to worry about driving.  It all worked out.  We left at 9:30 ish and we were back home around 12.  I made a big lunch for Cody and he ate well.  He is back on something for his stomach so maybe that helped him feel better to eat.  We relaxed and Nicole stopped over.  Cody feels tired and 'lazy' so we just chill.  He also ate a great dinner and then some snacks tonight.  I think he is feeling a little better, just exhausted…and me too!
Our plan is to stay home tomorrow but we might go to Nicole's.  Good night all and Merry Christmas!

December 23, 2013

This is tough…
Today we got in about 1 and Cody needed platelets.  He took a nap and I took a walk and chatted with some of my support there.  Love those people at MSKCC.
We then made our way down to radiation.  We had a visit with the dr there too.  All looks good, other than the site is actually red.  That is what she is keeping an eye on.  I notice Cody seems to favor that area and I think it is irritated already.
We have been doing the antibiotics and going bed at 11-12 which is late for me and then up at 6-7 takes it toll on  ya.  Then add going to NYC every day.  So I am looking forward to Christmas day to have nothing to do.  I want to chill.
Tomorrow we are getting on a train around 9:30 and and get in and get out. We are hoping the train makes it less stressful.  Hoping….I just want to get back home and chill.

Dec. 22, 2013

(Yes, Rosanne it is 6:23am on Sunday-I am now Cody's home care nurse and doing his IV antibiotics!)
YES, we are home!  My dad and stepmom said I did not seem excited when I called them.  I am happy to be home, just that it adds another stress level to me.  When you are in the hospital, all seems to be taken care of.  Once home, it is me!  Just added stress but we are home.
We came home to lots of surprises!  Apparently when I came home Thursday, there was a money wreath hung on the wall near my tree and I did not notice it.  Well, I did today!  It has cash, scratch offs and gift cards!  Once again, it is from my family at SH!  Amazing and so thankful and full of love.
I had all my teacher gifts under the tree.  It really looked like Santa came.  Moira was on her way to her sister's so we met her about the same time and Cody got his dogs back which made him VERY happy. As I sit here writing, my suitcase is still in the car.  I did a few things here, got his meds and made dinner before I sat down.  Then the delivery came with the IV meds.  The visiting nurse came at 10:15pm because that was when his next dose was.  So we were up till 12:00.  His antibiotic is every 8 hours so that makes me up now doing it.  But I plan to dose once it is all done.  We have to do this until the 30th I think it is.  Anything to keep that bug away!
So today looks like a chill day.  Maybe a movie later but not much else on the agenda.  Cody did well, rested, ate some steak and then some snacks.  He needs some time to bounce back.  But great to be home!

December 21, 2013

Saturday-Hoping we get the winning ticket to leave here today.  Cody ate a bunch of snacks last night so I know he feels better.  Lots to work out as I will be doing IV's again at home till the 30th.
Last night I did stay at the Ronald House.  NYFD was there giving out gifts with Santa.  I think they have a party there every night.  Beautiful people in the world for sure.  It was nice to see.  I know we collect a lot of things at work but really nice to see donations bringing smiles.  Maybe next year SH can do a donation to Ronald for Christmas?  Who knows?
Sitting in room 929 and waiting.  I do feel bad for all those that have to stay like the little sweet one we have come to know next door.  She is young enough to not hopefully remember all this but it is hard for her family.
It will be REALLY nice to have tomorrow at home without having to be at MSKCC.  I hope the plans work out.  We are back here Monday for bloodwork and radiation.  The next day off would be Christmas.
Keep praying for us…thank you.

December 20, 2013

Cody was fever free all night and no positive cultures.  So we are killing klebsiella.  He is down to one antibiotic and will need to go home on it for another 10 or so days, IV.  They are working on getting a visiting nurse for home.  He is allowed to have milk shakes and ice cream today so working on seeing how that works.  He needs to get back on his zoloft-antidepressants as he is really blah and snippy, of course only to me!  I do not blame him and I will take it.
Hoping to get home this weekend!!  We still have to come here every day for radiation but will be home with our dogs and sleeping in our beds.  Christmas day there is no radiation so we will have that day home to relax….all day.
Hoping all goes well today.

Dec. 19,2013

The days are starting to blend into each other. Cody has not had a fever all day so that is good.  There is some talk about going home with IV antibiotics which I will need to give.  Infectious disease is now added to our team of drs. They stressed how bad the bug is/was.  If Cody has any pain in that area even without a fever, we need to come in.  Unfortunately, this bug comes back.  He was told he could start on clears today so he had a cup of water and a lemon ice.  He did well.  Maybe tomorrow we try something a bit more solid.
I went home to gather things today and to check the mail.  Thanks again, Sue and Bernadette for your help!! I came back and Cody was in radiation.  He went early.
Let's hope for a good night and a better day tomorrow.

Dec. 18, pm...

Nice day with the festivities.  The carolers were great, Santa and his elves were fun.  I actually cried when they carolers sang "Jingle Bell Rock".  He asked for that song and the moment was sad for me.  They sang "The First Noel" to the little girl next store who goes by Gigi.  She is the granddaughter of a teacher at VB-small world.  She is precious.  She could not come out of her room so she watched the elves and Santa through the window.  Breaks your heart to know that this was the first time she saw Santa and she was in a cancer hospital behind a door.  There is a lot not right in this world right now.
Very sad time to be here.
I got a special quick visit from a great friend from work.  Thank you for the movies, LOVE them and for dropping by to say hello.  So good to see a familiar face, for sure.
Cody is improving.  The drs this morning said it is likely he will be home for Christmas but not sure.  We will do what it necessary.  He still has to come to radiation each day but Christmas and New Year's day are off.  Chemo will not start on Monday as he needs time for his body to recover.  It might start on the 30th but not sure of that yet.
I might actually go home tomorrow night to sleep.  Cody suggested it so I think he is ready for me to go and it is good for him to have his independence even it is in the hospital.  I could use a comfy bed too.
We are in the thought process of that decision.
Thank you all again for the continued love…I feel it!!  XOXOXOXO

December 18, 2013

Wednesday-So Cody went to radiation last evening.  He was sore but he was able to get through it.
He had a pretty good night.  He still has fevers from time to time but they are ok with it.
Cody's oncologist just left.  Chemo will not be next week and it is likely he will get home in time for Christmas but he is not sure.  Have to see how he does.  It would be nice to have a day of rest at home with all this daily radiation.
We are anxiously awaiting Santa's arrival today..I will update again later..

December 17, 2013

A long day here on M9.
Cody still had fever during the night but not any today.  The mediport came out this morning around 10 and a temporary one is in place called a central line.  It is on the outside of the skin and not embedded.  This is for easier and quicker removal and allows meds and fluids to be administered rather than an IV in each of his arms.  His veins are shot.  He did well with the procedure but needed platelets on the table.  He was pretty groggy so he basically sleeping today.  He had to get an x-ray to make sure the line was in place.  I spoke to the dr and this is what they think happened.  It happens often in neutropenic patients (patients with no counts, no white blood cells due to being knocked down from chemo and radiation).  He got a slight inflammation in the connector for the small and large intestine.  The inflammation became infected, leaking out into his blood causing sepsis-blood infection.  The organism that grew from the bacteria likes plastic so attached itself to his mediport which is plastic.  Once the organism was identified -klebsiella pneumoniae- it was then urgent to get the mediport out.
He is on 3 antibiotics and pain meds as his abdomen is sore.  He has to rest his bowel which is no eating and drinking.  They will probably start IV nutrition tonight.  The doctor said he will get better, thank goodness. What a whirlwind to say the least.
I am still so amazed by the outpouring of support from my family and friends.  My heart is warm from each and every one of you.  Thank you.
Prayers going out to my friend at work.  She is going through some hard times right now.  Thinking about you and your family.

Dec. 16, 2013 pm….

Cody seems to be in more pain.  He got the CT scans and they found out it is typhlitis.

Typhlitis (from the Greek word "typhlon," or cecum) is a life-threatening, necrotizing enterocolitis occurring primarily in neutropenic patients [1]. Other terms that have been used to describe this syndrome include "necrotizing enterocolitis," "neutropenic enterocolitis," and "ileocecal syndrome." Typhlitis occurs most commonly in individuals with hematologic malignancies who are neutropenic and have breakdown of gut mucosal integrity as a result of cytotoxic chemotherapy. “Typhlitis” describes neutropenic enterocolitis of the ileocecal region; the more inclusive term, “neutropenic enterocolitis,” is appropriate when other parts of the small and/or large intestine are involved.

They are treating it with antibiotics, they are adding more and bowel rest, no eating or drinking.  Tomorrow we are on schedule for port removal and to add a central line.  Everything else is on hold.

Prayers needed.

Dec. 16, 2013

Monday at Sloan….
While Cody is better, he is not himself.  Today he complained of pain when he urinated.  He is still feverish.  Because he still has a fever, the port needs to come out and that should be tomorrow.
Dr. Chou from the team came in and wants a CT scan today so he can make sure they are not missing anything in his gut.  He will know something today.  This is all very scary to me and I am worried.
I will update later today when I know the results of the scan.
Pray and pray hard.  xoxoxox

Dec. 15, 2013…pm

We are settled back at Sloan…will update more tomorrow when we speak to the drs…thanks for all the prayers…night all.

December 15, 2013

Pretty good night.  He did spike a 102 fever but did better most of the night.  He slept and even snored. I guess he is trying to heal and to catch up.
Drs rounded and I really like this Dr. Howell.  We met her a few times at Sloan.  When a patient gets very sick she comes over to evaluate and we all know that has happened to Cody a few times.  She is sweet, she in intelligent and explains things very clearly.
She is pleased with his progress and feels he is stable enough to go back to Sloan.  Problem is there are no beds at Sloan.  They are at capacity.  So still hoping that today, tonight or tomorrow we can get moved back over.  We will then know what the plan is from our team of sarcoma drs.  That totally perked him up and he says his stomach is feeling better too.
So we will continue on the up track.  All  of the prayers and thoughts and karma are working!!
I am scared with the new organism that was identified but he seems to be responding to the new stronger antibiotic.  Let's hope it continues.  Thank you for the texts, calls, help, emails, etc…so lucky to have each and every one of you…xoxoxox

December 14, 2013

So this is the news from tonight:  the dr here said they have identified the bacteria in his intestines.  Unfortunately, because of all the antibiotics he has had, the organism is resistant to most of them so they had to get a more potent one.  This one is tougher on the gut and that is why he is having pain and there is something else we have to watch for.  It makes life scarier.
The plan is usually 10-14 days of IV antibiotics.  Radiation will need to be stopped as that lowers counts too.  I see that this has taken a toll on him and while he is responding, he is taking longer to bounce back.
He had a good day.  He was up early and did not nap although he is fast asleep now.  He is really a trooper when they come in for new cultures and have to poke him again.  They have to fish around because his veins are mushy.
Nurse just came in and he has a temperature.  I will see what the plan is next.  Hoping it is not the mediport.
Today marks 5 years since the leukemia diagnosis.  And this morning we got word that Casey left last night..not a good day for that kind of stuff.

December 14, 2013

That had to be the longest 24 hours yet.  Just found out that Casey shipped out.  My heart is jello.  I think with that hitting me and the reality of how sick Cody was, it will make for an emotional one for me today. Might be holding back on the phone calls to keep the tears in.
Well, Cody woke up without a fever which is a good sign.  He slept well without chills and woke up in a good mood.  He ate before bed and had a visit last night from Caitlin, the IV receptionist that is always there for him and comes to hang with him when she finishes work.  That is what she did last night.  Cody was all smiles!!  Sweet girl.  She is 27 but a young 27 and there is definitely a crush between them.  I was happy for him.
We are waiting for the drs.  I actually think they came in early but we were both sleeping.  There were no beeps during the night as you have a nurse outside your room so she was on it.  I got out of bed once to help with the bathroom and that was it.  Definitely needed sleep but doubt if I will ever catch up.
I will post again later if anything new arises.  The plan from yesterday is to use the mediport with antibiotics and see how he reacts.  They will be looking for pressure drops and fever.  Praying that goes smoothly.  Don't think we will be going back to Sloan today but maybe tomorrow??
Thank you all and enjoy the day…it's snowing here in NYC.

Friday the 13th again...

Sorry the last post was hard to read…It looked fine when I typed it.
Soooo, finally Dr. Wexler came in.  My ex emailed him last night and told him that we did not see anyone sarcoma drs at all yesterday.  So the first thing he asked Cody was why he was here.
He then went on to explain.  Cody had septic shock again.  The bacteria that showed up in the mediport was one typically found in the gut and somehow leaked out and traveled to his mediport. The main concern was not the high fever but the low pressures.  He then explained that he needed to be here in ICU to be managed more closely.  His hope is that he makes a full recovery and will be back over at MSKCC this weekend.  I hope so too.  I prefer it over there to here, for sure.  I hate what I see here.
So Cody took a nice nap, is sipping some water and will try some snacks.  Moving in the right direction…thanks for ALWAYS thinking of us and caring for us!!  Love you ALL!!

Friday the 13th...

So pretty close to midnight last night, Cody's fever spiked to 105.3 and the shakes came with it.  His pressures were consistently low.  The rapid response team was called which meant we were flooded with doctors.  So much for sleeping.  They stopped using the mediport and more IV's were put in in. I think he had 4.  Lo and behold, the mediport is infected with gran negative rods. (One of the several unique characteristics of gram-negative bacteria is the structure of the outer membrane. The outer leaflet of the membrane comprises a complexlipopolysaccharide whose lipid portion acts as an endotoxin. If endotoxin enters the circulatory system, it causes a toxic reaction, with the sufferer developing a high temperature, high respiration rate, and low blood pressure. This may lead to endotoxic shock, which may be fatal.)
Mediport:n medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.

The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a winged needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.

If a port is used infrequently, it may be necessary to access the port, flush it with saline, and inject a new heparin lock every month to prevent clotting between uses.

The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.

A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.

Soooo, the mediport will need to come out and he needs to go to ICU.  After trying to shuffle around patients and beds, it was determined that he would need to go to Cornell PICU which is across the street from Sloan.  So around 5 a.m. an ambulance comes and we are transferred.  We are settled it in this depressing hospital with so many sick children.  Very sick children.  We are now waiting for platelets.  

So the doctor just left here.  She would like to try to salvage the port.  Her plan is to run antibiotics for 24 hours and see how he does.  He is stabile now and this is her recommendation.  

He is worried about the mediport.  He wants it out but we are going to see.  So we will get through the day and see how this goes…pray for us.  I know this is confusing but for now we are here getting antibiotics and trying to salvage the mediport.

Thursday, Dec. 12, 2013 4pm

What a scary day!  So let me see if I can get it all down.  So once we got here, Cody's temp was 102.6. He had one of those seizure activity episodes (and because of the ones during the night) so an EEG was ordered STAT.  That went on for 20 minutes.  His fever then spiked and peaked at 105. 3.  Two peripherals (IVsg  in the hand and arm) were accessed.  It was not easy finding a vein but one of the nurses got it after 3 tries.  Then I stepped out to get him a drink and I come back and he is shaking.  Trembling to be more correct.  That was the peak of his fever.  Another antibiotic was started.  He was out of it and near tears.  He was really scared.  I know this because he was not pushing me away.  Oxygen was started to keep him cooler.  He finally got to take a nap and woke up and ate an ice pop.  He was actually sitting and talking.  His temp was coming down.  Finally just a little while ago, and after lots of tylenol, he has no fever.  The neurologist just came in and said they EEG did show some seizure activity.  It is most likely related to the fever but she wants to increase the anti seizure med.  We will do it gradually and there should not be a huge side effect other than maybe a little tiredness.  I am hoping the keppra helps as he is nervous about it. So he is being admitted and let's hope the fever stays down!  Thank you to everyone for being in touch and caring about us!  I mean that!

December 12, 2013

So Wednesday was a long day.  I took half a day and drove him  in for bloodwork and radiation.  Blood results indicated he needed a unit of blood and a unit of platelets.  We were on a rush to get them in before radiation at 6.  We got to radiation at 7:30 and were done in minutes.  We got home around 9 and I was exhausted.  While we were eating, Cody was cold but did not spike a fever.
This morning I woke up to get ready for work and checked him.  I always just put my hand on his head and then I use the thermometer if needed.  Well, he was burning up, 102.6…so here we are.  He slept in the car and we are starting antibiotics and cultures. We know the drill, unfortunately.He just goes down fast.  It was a gridlock alert day and rush hour so it took us a while to get here.  He asked for a wheelchair to get him upstairs. Once we get here and are checking in, he tells his nurse that he had 2 episodes of the seizure activity during the night and one made him nauseous.  He had one in the car too.  So right now he is doing an EEG to check his brain.  One thing about MSKCC, they are on it!!  Looks like he will be admitted for a few days especially that he is neutropenic and has a fever.  I have neglected everything the past few weeks and was looking forward to a quiet weekend.  Everything can wait.
I will update if I have anything new to write…still waiting for the call to say Casey left.  He is still here as of this morning.

December 9 and 10th…2013

So we had a long Monday that ended with us meeting Bruce Springteen!!  Pics below.
We drove to Queens to get Cody's cousin, Matisse since he needed blood work and was invited to the party too.  Both boys got checked and then we got lunch and Cody got his radiation.  We hopped into a cab and heading to Sony World on Madison Ave for the Sloan/Kristen Ann Carr Foundation Party.  I was there about 15 minutes and I hear "Mary Byrnes".  It was Trish from NYU!  We met here there with her sweet son, Patrick just after he was diagnosed.  Cody was the trooper he always is and was showing Patrick his mediport.  We were roommates for a few days.  Then we hooked up with them a few months later at Sloan.  Patrick is doing well and is so handsome and so tall.  Trish offered her support when Cody is in the city alone as she lives nearby.  It was nice to see them!
As I was standing at the back elevator, in walks Bruce Springsteen!! I was so star struck.  Cody and Matisse were involved in something and I could not drag them away for a few so I went to check him out on my own!  He was conversing and just kinda hanging with families and posing for pictures.  He was not stressed and was very friendly.  Matisse talked to him and shook his hand and Cody chatted with a few too.  I got my own photos and he was sweet.  His raspy voice is what got me!  It was a fun time and we were all exhausted.
Cody took the train in today (Thanks SooHoo's for the ride to the train!) for a casting to be made.  It is a protector of his chest so he can get back to soccer training with the mediport when he feels up to it.  He got his radiation and took the train back home.  As for me, I had an emotional day.  Just hard to juggle it all.  I want to be with Cody. I am taking him in tomorrow so I will feel better.  I already do.  Making it an early night and hoping for a good night of sleep.
I have to say this again, but I have such an amazing family and such awesome friends!!  I work in place full of genuine caring people!  Thank you!!!

PS..pictures are not loading…I will try again in the morning!!

December 8, 2013

Sunday morning.  All is quiet here and I hope it stays that way.
We decided against the game today.  I know it would be too cold and too exhausting for Cody.  Of course he blamed it on me, saying I would stress him out.  We finally found a home for the tix.  We gave them to the BBQ guys that work with my friend, Allison.  She is the one that organized the RMH meals and also brought us all the bbq and then Thanksgiving dinner.  So it was a good payback moment.  Cody was not happy but feels good about giving them to the guys that are always thinking of others.  He did not do the car race today which tells me he is losing steam.  I hope he is up for tomorrow's event for the Sony party.  It will be fun.  We don't have to stay long either.  We are bringing his cousin, Matisse with us. He needs a blood check and his parents are in India.  (Not going there…)
Relaxing day ahead.  Cody plans to watch football and stay warm.  I will run errands here and there and get laundry done.  Fun.
Hope everyone enjoy their Sunday.
The pictures are of Cody and his nurse, Sonya as he gets ready to give himself the neupogen injection.  This helps boost the white blood cells.  He does the shot to himself.  His friend from high school met up with us at Sloan on Friday and hung out and we gave her a ride home.  Glad Cody has some interaction with friends his age.

December 6, 2013

We are home!  I spent the afternoon with Cody.  He seems to be doing well.  Thank goodness.  He is a bit edgy but that is expected.  Just glad to be home.
One of his high school friends was in the city so she came up to visit.  She got there just in time for radiation.  I actually went into the room and watched them set him up.  It is insane and something unbelievable to see.  Cody looks so vulnerable just lying there while they are adjusting him.  They move him a centimeter to get everything lined up.  Setting up takes longer than the actual radiating part.  He said there is an outline of the tumor that they use.  They are that exact.
His friend rode home with us.  Thank goodness traffic was not too bad.  He has to be there Monday and radiation is at 3.  Then we can try to make it to the party.  Hope he feels good enough.
He got tix to the Jets game on Sunday.  We are going to try to go.  He has never been to a football game.  Hoping he has the stamina for both.
Off to bed early tonight and looking forward to doing nothing tomorrow…have a good night my friends.

December 6, 2013

Cody comes home today!!

December 5, 2013

3 treatments down.  27 more.
I drove in with my friend, Jean last night to see Cody.  We got there just in time for his radiation appt.  We hung out on the 9 th floor and then took him to radiation.  I hate being away from him when he is going through all this.  Surprisingly,  he looked great!  He was not puffy, did not look tired and his dry skin on his face cleared up thanks to his steroids.  He is eating and chowed down at dinner.  Of course, it was tacos and that is one of his favs.  I think he was tired so we did not hang out much.  We had dinner, stopped for some candy, and walked him back to RMH.  He seemed tired.  I checked on him when I got home and he said he was going to sleep.  I am going to pick him up tomorrow.  Next week will be hectic with a few appointments and he will not be feeling so great but we will work it out. It will be a tough few weeks getting him there everyday but we will do what we need to do.  One week is almost over.
Thanks for all of your continued support and thoughts.  I am blessed to be surrounded by amazing human beings.

December 2, 2013

One day down, 30 to go!  Just want this behind us.
It was a long day but Cody did well.  He finished up chemo around 5 and then we went to radiation.  The reality of all this bites and to see all those people going through this routine is heartbreaking.  It is like a cult.  Your name is called, you get a key to go get changed, you go to the back and come back out and it is over.  Most treatments do not last too long.  You can see some very sick people waiting and others are doing ok.  Cody looked relieved when he came out.  Just trying to work this all out.
He got an early Christmas gift.  I bought this magic sand from Brookstone before he started mentioning it.  I knew he would love it.  So Sunday when Jean delivered our tree and he kept talking about it, I went up and got it.  I told him not to buy it that I had it so just decided to give it to him.  He sat all day with it.  It is therapeutic and relaxing.  He showed everyone that came in.  So one less gift from Santa...LOL
He also is wrapped in the prayer shawl in the picture too.  He does not know exactly what it is, as that stuff freaks him out.  But he knows Jean made it...thank you!
Another long day and I am working through it.  I will work tomorrow and go after school.  This might become a pattern once we get a schedule for radiation.  It could work.
We are hoping he feels good because Monday there is a party in the early evening at Sony World and it is put on by a foundation.  Only Sloan patients are going.  Lots of gifts and one person that usually stops by is Bruce Springsteen.  I would like that.  Hoping...
Have a great day friends and family...

December 1, 2013

Happy December.  Gonna be a hectic one for us.  Chemo tomorrow and radiation starts tomorrow.  Long 6 weeks of radiation.  I think I am more nervous than Cody is.  It is just something a parent goes through.  It is tough when it is your son.  Pray for him.
Good day today.  We visited his good friend, Jimmy Reiser and his parents.  Cody and Jimmy played soccer when they were 5.  It is always hard for me to see those that are Cody's age and how strong and healthy they look, especially next to Cody.  As you can see, it is an emotional day for me.
My friend, Jean came by and brought us a tree. My old one was history last year.  We used a small one last year and now we will get some lights and decorate this one.  Cody doesn't love doing it so I can have it ready for him when he comes home Friday.   She also brought me a prayer shawl that she knitted.  Her pastor and church group prayed on it and it is very special.  I will sneak and wrap it around Cody when he sleeps tonight.
Early morning tomorrow and it begins again.  Need the next six weeks to fly by.

Happy Thanksgiving

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

November 27, 2013

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

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

Friday morning, Nov. 22, 2013

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

Nov. 20, 2013

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

November 18, 2013

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

November 17, 2013

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

November 16, 2013

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

Nov. 15, 2013

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

Thursday, Nov 14, 2013/Friday morning

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

Wednesday, Nov. 14, 2013

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

November 11....evening

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

November 11. 2013

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

Saturday evening, Nov. 9, 2013

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

November 7-8, 2013

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

November 6, 2013

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

Tuesday, Nov. 5, 2013

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

November 4, 2013

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

November 3, 2013

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

October 31, 2013

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

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

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

October 29, 2013

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

October 26, 2013

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

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

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

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

Today we rest...so tired!!

Thanks for the good times!

October 25, 2013

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

October 24, 2013

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

Wednesday, October 23, 2013

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

Monday, October 21, 2013

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

October 20, 2013

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

October 19, 2013

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

October 17, 2013

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

October 16, 2013

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

October 15, 2013

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

October 14, 2013

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

Sunday, Oct. 13, 2013

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

October 12, 2013

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

Friday, Oct. 11, 2013

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