September 29, 2014

Relapse…the phone call came to Cody and they told him to come in.  When he asked if it was bad news, the NP said, "yes".  He called me immediately and I rushed home.  Thankfully, my job and the people I work with are so understanding.  Cody has new tumors in the right lung and chest wall.  It is so heartbreaking.  I am really speechless.  The plan is to stop current chemotherapy and start a new drug if all is ok with the EKG today.  The drug is pazopanib for those that are interested. Comes with side effects, including liver damage.   It is oral so we do not have to travel in.  Our options are limited.  If this works, scans in 4-6 weeks, we continue.  If not, we pray a clinical trial for new drugs opens and he can be a part of that.  The drugs are being tested now and hoping they are not too toxic for those on the trial now.  Cody is scared, he had a few questions.  He wants to continue with life, school and his internship.  It will keep him busy and he won't be home thinking about this every second.  Right now, he is not showing any symptoms.  So until he complains of shortness of breath or pain, we continue to live life, as we were told today.  Casey is coming and I think my brother will come too.  Trying to work that out.  Thank you for all your continued texts and calls and support and most of all, thank you for the love.  We need prayers, lots of them.

September 27, 2014

Today is the first birthday for my mom in heaven.  I cannot remember the last birthday I spent with her which is sad but I do miss shopping for her and calling her. Happy Birthday, Mom.

Long day yesterday.  We were on the road at 7 and got all the tests in.  He had a really long MRI, felt like it anyway.  His platelets were not high enough for chemo.  It has us both concerned and Dr. Meyers said this happens.  It is a lot of chemo.  We discussed it and will try again this Friday.  He will do a count check during the week and see if he is trending up which I am sure he will be.  He is worried as I am too.  He is having some pain in the leg so we are watching that.  They can't feel anything but there is some pain.  Hoping to do some physical therapy out here too.  Praying he gets on track soon.

Enjoy this beautiful weather here on Long Island.

September 25, 2014

They call it scan-xiety…well, I have it.  Tomorrow we have scans, PET scan, CT scan and an MRI in addition to bloodwork and hopefully cycle 3 will begin.  I ate a small bowl of soup for dinner and Cody sucks down 6 tacos.  Guess he does not worry like I do.  I hear him singing "Don't you worry child, heaven has a plan for you".  I walk away with tears.  While I definitely feel we will only get positive results tomorrow (hopefully tomorrow) I cannot begin to think about how parents deal with their own loss.  I know 'heaven's plan' for Cody is to show the world how he can beat this.  He shows me each and every day and I admire his perseverance.  He is taking classes again and working back as an intern with the Islanders.  Not sure how long he can keep it up, but he plugs along.  So pray for us tonight…all good things.
We got great news today that Casey is now an official helicopter pilot.  Unbelievable.  He has so many titles under his belt and I am so proud of him.  He passed with flying colors and sounds so happy about it.
Wishing all of you a great night and a restful one…xoxoxoxo

September 19, 2014

Friday…well chemo did not start today   Platelets were not up to par.  So we do it next Friday which is also scans day.  I already feel the anxiety settling in.  Cody is feeling well and life kinda seems normal.  School is in full swing for both of us and Cody is doing an Islander event here and there.  I am exhausted from the week and am looking forward to a quiet weekend. Enjoy the beautiful weather!

September 7, 2014

So we are trying to get back into the swing of things…with school.  Only now we have a few other challenges.  We are trying to schedule Cody's chemo and appts so that he does not have to miss school. He does not have class on Fridays so he is going to do his appts at MSKCC on Friday and see how that goes.  That would mean chemo over the weekend but hopefully we can get it done early and he can enjoy his weekend. He completed round 2 and will start the 3rd cycle on the 19th which is a Friday.
He had a pretty good week and will have a full week of classes beginning tomorrow.  It should all work out.
Today we went to Port Washington to give his little cousin, Matisse a remote control boat that my friend, Margo gave us.  Matisse was so very excited.  It is perfect for him.  Below is the photo.  Thanks, Margo!
Here's to a great week for all of us!!

September 1, 2014

Today starts the beginning of Childhood Cancer Awareness Month.  I hope, in some way, you should your support.  A simple gold ribbon will do!
Lots of scheduling to do.  I know Cody is not feeling so great so that does not help.  His appetite is down but he is trying.  He pushes himself in ways I know I could never do.  I am proud of his perseverance but also want him to take care of himself.  Today is a day of rest.  We went to the casino yesterday and he entered a poker tournament.  He knocked out 2 players and came out ahead.  The tournament started with 119 and he was number 15.  The top 15 got a pay out.  He loves it and he was so nervous.  He has always played online and watched it on TV.  It was a long day but a fun one.
Cody heads in to NYC tomorrow to begin the 2nd week of the 2nd cycle.  He will miss his first day of classes.  This is where it gets tricky.  I have tried to persuade him to just take 1-2 classes but he is pushing for 3.  He might be late and have to miss a few but he wants to do it.  He also wants to continue with his internship.  He has a meeting there tomorrow evening.  It's a lot and I am worried.
I will continue to pray that he can manage all this and that I can too.  I start back tomorrow, teachers for 2 days then kids on Thursday.
Enjoy Labor Day and relax…xoxoxo