Carson is his name: baby to big boy BT SURVIVOR!

  1. Baby Carson is the youngest GMFbrainbuddie.   His family and I  connected the very first time we met. The story started  when I watched CBS5 news and their pay it forward story. I then reached out to the family and started speaking with Carsons Uncle Nick. I shared how GMFoundation mission is to encourage and educate.   From that call we  set up a day to meet Carson, and the rest of the family.  Like a typical graymatters visit I planned to decorate the room and share some Brain Tumor educational information.  I learned Carson is a Spiderman fan so I went on my mission to purchase SPIDEY decor.   All the fun set aside this was not easy.  Watching this baby fight for his life was something I had only read others do.  I have seen photos on social media  and supported and encouraged those living it but this was up close and personal, This just got REAL.  It’s great to support the walks and the rides and all the great work the other NPO’s are doing for research because I get to  meet  these kids in person at the events.   It is a whole different scene when you are on the cancer floor and see these little ones  in bed sick.    I visited just about everyday once I met this family for over a year.  This journey was now part of me, I lived it.   I held Carson, played with him, I helped clean him & myself after being pooped on while holding him.  POOP AWAY!  I’d  say just live little dude just live.  I was there when the doctors talked to the family,   WOW ! I still say in ANY environment there are AWESOME communicators and there are those who need to take communication 101.  It made the family very  happy when I was able to have some of my friends & contacts in the brain tumor world aka experts to help explain some of the information that was being given to them so they could make educated decisions.  This part of my journey CONFIRMED that every person especially a parent with limited resources deserves to understand what the choices are.   They should not just be given a piece of paper  or book and told to read and get back with us with what you would like us to do.  TGEN and CarrieTreadwell from NBDA  were awesome resources in helping this family become better educated to choose their next steps.   Carson is not my child but all of my brain buddies are like family.  This peds journey  was a whole new walk.    If you have been a fan or a friend on my social media over  the last 2 years you knew about Carson.   You knew when it was good, when things were bad, or just the day to day.  My biggest lesson on the BABY CAR journey was this: Hope never grows old  &  it never starts to young.   Carson was diagnosed with Medullablastoma and was not expected do very well.  He was dischared the first part of 2016  with clean scans and no sign of it spreading to the spine.  No more chemo or treatment for brain cancer.  Oh how I think back to when  I watched him get so sick  from all the treatments and infections in his feeding tubes.  I would stay late to rock him to sleep  or arrive  early to play with him and his toys before he became over tired from mutliple therapies.   I am so GREATFUL for knowing Carson and his family.  He may be the youngest but I have learned so much from such a little dude!  I was able to see him over the holidays and his grandma has had him call me and he now says HI auntie lanette.   My heart melts and is for ever changed.  I will never forget watching him leave that hospital.  I cried happy tears.  I am awaiting his 3rd birthday in a few weeks when I get to see him again.  I am told he has a full head of hair.
  2. May 2017:  He is now in preschool and will soon be 4 I see him when I can. He is growing and getting to be a kid.