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.