April 8, 2014

Is it Friday???
Cycle 10 is in full swing.  Cody is doing well other than being puffy from the fluids.  He is eating like crazy.  I am here with him and we are staying at Ronald.  Today I actually commuted in and went to work. I am already in PJs and ready to crash here but glad I am here.  I was with Cody yesterday and will take Friday off to drive him home when he finishes. I will commute tomorrow and Thursday too.   I am glad next week we are all off.
Cody was asked tonight to be an ambassador for the International Car Show this Thursday.  It is Press Night and Hyundai will be doing the handprints on the car for cancer.  Matisse, Cody's cousin that had leukemia too will be there also.  Cody is definitely excited about it!
Hope everyone is well and enjoying the milder temps today.  Until next time…xoxoxox

April 5, 2014

So the week flew by and was a quiet one.  Cody's counts are recovering and we did not need to get his blood checked on Friday.  All looks like he is set for chemo on Monday.  Change this time as his dad cannot go with him so I am scrambling and will work it all out.  I am going to do the reverse commute this week for Tuesday, Wednesday and Thursday.  At least I will try to.  We will be sleeping at the Ronald House all week.  I will take Monday and Friday off.  I am so thankful for my colleagues that said they would step up for me and help out, as they always do.  My friend, Moira is the best dog sitter ever.  My dogs actually come back fatter after a few days with her!! We would not be able to keep the dogs if we did not have her to get them at the drop of a hat.  My boss and the administration have been amazing through all of this too.  No questions asked and they work it all out with me.  It definitely helps me with my stress levels.  I think at this point, I am more stressed than Cody!  I definitely see a pattern with him and when his moods change so I am trying to deal with all that and trying to help him too.  Last night he went to the race track and had a good time.  I stayed home.  Sometimes I need to do that too!
Looking forward to this beautiful weekend weather.  Looks like a bike ride could be in the plan.
Enjoy and I will update this week.

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.