March 31, 2014

The day of weather extremes-crazzzzzy!!
Cody got blood work here at the Commack Sloan and his counts are steadily going up!  So far so good..we will take it!  He will go back on Friday.
Looks like I will be accompanying him next week for chemo week if he has it.  Looks like he will with all the counts going up.  I still have sick days left but they are dwindling!  Hoping I can make it through June but will deal either way.  He is my number one priority right now.
I love hearing him playing Xbox.  He plays live with Casey and sometimes it sounds like they are both in the same room.  Oh how I wish!  Hoping we will get there this summer!  Sure do miss him!
Have a good night all and happy April!

Sunday, March 30, 2014

So all is good here on the home front!  We went to NYC yesterday for the Hot Sauce Expo.  Pure craziness.  Why would you want to eat something so hot???  Cody follows this guy from Washington state and he met him there!  He was pretty excited about that.  He saw him as soon as we walked in.  He was a nice guy and Cody hung with him for a bit.  He was in a pepper lollipop contest and Cody video taped it for him.  (I will spare you the gross details!!)  We sampled some sauces, well he did!  Cody took home a few and we had a fun day.
Now today's project is the fish tank.  It is finally up and just about running.  It keeps Cody busy for sure and he enjoys it!  Thank goodness for Jean's fiancé-he helps fix everything!!
Hope everyone enjoy their Sunday!

 This is the hot sauce guy Cody met-Ted Barrus.

March 28, 2014

So on Thursday we went in and more platelets were needed. Cody is feeling better, thank goodness and his counts are coming in nicely.  He amazes me that way!  He was published in the American Medical Neurology Journal.  When he had that brain issue back in 2009 a month after the transplant, I was video taped and interviewed.  It was very rare what happened to his brain.  If I can scan it (left it at work) I will see if I can put it on here.  There was a lot of medical stuff in it, and I surprised myself by understanding most of it.  He went through so much.
Looking forward to a quiet weekend.  There is a hot sauce expo that he wants to go to this weekend so we will be going.
Please add Sam to your prayers.  He is a young man (26) that traveled to Sloan from Missouri….alone. He stays at the Ronald house and is going through some tough times right now.  It breaks my heart to think he is doing this alone.  Thank you.

March 26, 2014

Casey is home!! He is back in GA from his 5th tour overseas.  Thank goodness!!

Cody ended up needed platelets.  Sloan never called so I started the emails yesterday morning.  Once we got there, they apologized and made sure to tell Cody to follow up.  His platelets were very low and he got a transfusion.  He is neutropenic, again very low which explains why he is so tired.  We have to go back tomorrow and I am guessing he will be need blood by then.  He has not had these chemo drugs for a while, before radiation.  They are tough on him.  (Remember we alternated cycles.)  He did seem to feel a tab bit better as he was smiling more.  He just feels like crap.  I am sure he will smile bigger when he knows Casey is home.

He is also frustrated.  He is trying to do his new fish tank and has hit some bumps.  I hope we can get that worked out this weekend.  He lost 5 and a half years of his life.  Going from 15 to 21 without experiencing what normal kids experience is tough.  In a lot of ways, he is still 15 but his brain is feeling 21. He cannot do what kids his age are doing.  He missed a lot.  He will catch up and end up being more mature than most his age which in some ways, he already is.   We do have some interesting discussions, to say the least.  I am trying!

Monday, March 24, 2014

So yesterday Cody did not move off the couch except to go to the bathroom.  He just did not feel well.  He was exhausted.  Today, the same.  He is still having jaw pain.  He was up early and got blood work and we did not hear back and he does not want to call.  Guess we will hear in the morning.  I suspect we will be in before Thursday but you never know.  He ate a nice dinner tonight and I am pushing the ice cream.  He is crabby but understandably so.  Here's to a good night for all.

March 21, 2014

Cycle 9 is complete.  Cody got the 2 day checmo this past week and got home yesterday.  He has some jaw and bone pain from the vincrisitne.  He seems a little wiped out which I am sure he is.  Looks like a quiet weekend here for him and I have lots to do here at home.  Been kinda neglecting things.
TGIF friends..enjoy the weekend.  Hoping it is a quiet one here.

March 17, 2014

Long and early day.  We were at Sloan at 7:15 am.  Bloodwork was fine so chemo started around 9.  He got three drugs today and did well.  We had a quiet day and then they had a St. Patrick's Day party on the 14th floor (recreation room for adults).  We played a few games and had a scone.  It was fun and keep us laughing for a few.  I hated to leave him but his dad was there.  He will get 2 more drugs tomorrow and then hydration Wednesday and Thursday.  He may even get home on Thursday.
We had an amazing time at the event Friday!

 Contractors For Kids knows how to throw a party!!  They had over 1000 supporters there!  It was so fun. Cody gambled and I got to dance a little.  They put us up in the Hyatt for the night and we were treated to a yummy breakfast in the morning.  We made some new friends and enjoyed seeing all the professional athletes and actors and an actress too.  We love our CFK family!!! Thank you!!
Happy St. Patrick's Day my friends and family!!

3/10/14

Monday- so we were up at 5 and in the city by 7.  Cody got his bloodwork done and his platelet count is not up enough for chemotherapy.  He also has a cough and his chest did not sound so great so we did  a chest X-ray.  It was clear other than showing signs of a virus.  So let's hope all stays quiet here.  Hoping to keep him strong so we can go to Contractors for Kids event on Friday.  Keep us in your prayers.  Thanks!

3/5/14

Best news we have had in a long time!  Cody's tumor is dead tissue and there is no evidence of cancer. The treatment is working.  The challenge now is to keep the cancer away.  We could not be happier!!  While I was at work, I was in on the conference call with Cody, his dad and the doctor.  Some parts were hard to hear and I will need a discussion again but I did happen to hear what I needed!
Cody's platelets are still recovering so chemo will wait until Monday.  So he has a nice little break to celebrate.
The love and support from each and every one of you is amazing! I am so blessed.  I know there are lots of you praying and you have your extended families doing it too.  We feel it!  My son is an amazing fighter but with your help, he succeeded.
He has a long way to go, more chemo and more scans in 3 months.  He will do it!  We need to keep this cancer AWAY!
Thank you all, near and far, family, friends and those we do not know.  We appreciate all of you!  XOXOX

3/4/14

No news yet..but should happen tomorrow morning and of course, I won't be there.  Not happy about this but will be waiting for my phone call.  I will update when I know..thanks for all the support!!!  XO

3/3/14

Scan day.  We got into the city last night because of the impending snow that never came.  Oh well, what can you do?  Yesterday we went to the hockey game.  Cody wanted to give his player a shirt and bracelet.  So I called our sweet Ann and asked her if it could be arranged for him to personally give it to  the player himself.  It was really a pick me up for Cody and he was beaming!!  Pics are below...
We got up early and got to Sloan around 8 and the bloodwork started.  Then we were off to the 2nd floor for an echocardiogram.  Then off to another part of the 2nd floor for CT and PET scan.  Then up to the 11th floor for the MRI.  Cody was good but seemed nervous.  He did well.  I noticed it was taking longer than normal for the MRI.  I heard the radiologist talking about a patient and it was Cody.  Apparently they did the wrong MRI so he needed to do another one! Yep, 2 MRI's.  It was now past 1:00 and he had not eaten and we would miss our appt with the dr.  We were set to see the dr at 3:00 so we left to get a slice of pizza.  We finally got into the dr around 3 and no results yet.  Well, the CT was back and there was one spot there but it appeared to be an infection and not Ewing's sarcoma.  We will get more results tomorrow, hopefully.  Cody's platelet count was not high enough to start chemo.  So he came home with me and he will go back on Wednesday morning to check again.  This is the 2 day chemo so he could do it Wednesday and Thursday and hydrate over the weekend.  So hoping that all works out for all of us.  I am pooped beyond words.  I am sure he is too.  Will update again when I know something.
Thank you for all the prayers today…I know they are working!!  XOXOXOX

Saturday, March 1, 2014

Cody's counts were good yesterday and he did not need anything.  We are still trying to work out the details with his drs regarding the protein in his urine.
Cody raced his cars last night and was there for a long time.  I had a nice dinner out with good friends, Jean and Mike.  It was nice to just relax.  Today will be a busy day here just doing laundry and such.  Tomorrow we are going to have to get to NYC and stay over due to the snow coming.  Cody has his scans beginning Monday morning.  Lots of positive energy and prayers needed.  I already have that knot in my stomach.  I am hopeful that the radiation did help shrink that tumor even more and perhaps even kill it.  It will always be there but in time, hoping that it is dead.  Some time when all this is over, I think Cody will want to get it totally removed.  I have to agree with him there.
I will update once we know the results.  I am hoping too that I can get back home on Monday night..thank you all for your continued prayers, thoughts, and love.  I mean that.