April 21, 2020
         Its been 4 months since my son, DJ, had his brain tumor removed.  No, it wasn't cancer and yes, they got it all out.  Here we are, 4 months later with clear scans and a bright future.  Who knows where we'd be if it were not for  his pediatrician, Dr. Griffin and ENT, Dr. Takoudes, who did not dismiss symptoms.
It goes without saying that it is because of Dr. DiLuna and his dedication to his career that DJ will live a long,  healthy life.   We owe so much  to the entire surgical team and all the doctors and nurses at Yale, not only for all they are doing through this pandemic but for all they do every day; save lives. 


December 19, 2020 -  Day 1
       It's hard to to explain the mixture of helplessness, disbelief,  fear and love that  go through you.  It's a parent's worst nightmare.  The "what ifs?"   I think the most difficult part for me was to look at my beautiful boy‘s face and know that I couldn’t fix it for him, to look at my beautiful boy's face and realize that  he, a 14 year-old boy, is about to deal with such a major setback.  

        DJ 's first MRI showed a 32mm X 54mm tumor in between the brain stem and his cerebellum.   It needed to be removed  as soon as possible.  Its' location was preventing the normal circulation of CSF (cerebrospinal fluid).  Because the fluid wasn't draining properly, it was building up in his brain, causing inter-cranial pressure (hydrocephalus).  

       Day 2- DJ needed another MRI of his spine to get a bit more info on what we were dealing with.  His 8 hour surgery was scheduled for 8 a.m. on day 3. 
Before  getting to the tumor out  through a 5/6 inch incision in the back of his head, they had to first drill a small hole for a tube in the right back corner of the skull. This drained some fluid out and slowly released the pressure.    It  was very reassuring knowing  DJ was in the hands of Dr. DiLuna , Chief of Pediatric Neurosurgery and his team, who answered all of our questions with such confidence.    He was optimistic that DJ had a JPA ( Juvenile Pilocytic Astrocytoma, a grade 1, slow growing, benign tumor).   Pathology results a week later confirmed this.  He was also quite certain he would be able to remove all of it without damaging vital brain tissue.  We went from DJ having a tumor that could take his life, to hearing from the doctor after surgery say, “It all went great your son is going to be just fine.”

     We can only describe  Christmas week in the hospital as the worst, and the best, week of our lives.      We thank God every day, every moment, for his prognosis.  While he struggled for the first 3 months post surgery with chemical meningitis (which put us back in the hospital for three days) and the loss of 20 pounds, he  is now feeling more like himself, emotionally and physically.  He is a better, stronger person because of this.   
 
   As you can imagine,  I spent a lot of time researching brain tumors and everything DJ was going through.    This reading led me to so many stories of other children  going through the unthinkable.  It opened my eyes to the inadequacies of funding; not only for brain tumors, but all pediatric cancers.    Only 4% of the billions of dollars that are annually spent on cancer research and treatments are directed towards treating all childhood cancers.
     May is brain tumor awareness month .  As a  small way of giving back , we will donate all fundraised money to brain tumor/cancer research so  doctors can save more lives, and  more families can hear,  "they'll be okay."   

#BTAM    #gograyinmay     #Chadtough    #nationalbraintumorsociety    #curedipg 
  #braintumorawareness  #braintumorsurvivor   #team.cure


We also want to make donation to a foundation that help children and their families who are battling each day.  
 In our time spent at Yale, DJ saw  Don's Hat Rack a few times around the hospital, and he was surprised to hear that it was the motorcycle run that we attended a few years ago.  It was founded 16 years ago in memory of my cousin Donald Perrotti who lost his 6 year battle with cancer.  He was diagnosed at 16. Click the link below to hear how they help local families battling a pediatric cancer diagnosis.
   
https://www.wtnh.com/on-air/gmct-at-nine/15th-annual-motorcycle-rally-to-support-dons-hat-rack/ 



We know it was hard for many of his friends who wanted to come and see DJ after the surgery - thank you for understanding that he was just not ready.  It especially touched DJ to see his basketball team wear these cool ass socks “WE PLAY FOR DJ” to support him as he missed the season.   

•The messages, gifts, food and gift cards sent from community friends, RSD 13 and family was appreciated more than you’ll know - we are very fortunate to be surrounded by such generosity.

•My Lyman Hall and Breakfast  Nook families went above and beyond with support and concern for our entire family; thank you for giving me all the time off I needed without question, throughout it all ( hopefully he will still get to see Paul George after COVID)

•The Wallingford Rod and gun club - wow!  We received card after card from so many members who we’ve never even met encouraging DJ with such positive words!  He enjoyed opening every single one.  And Doug's hunting group sent healthy prepared meals to us for weeks; it was beyond generous. We all thank you !

•To all our doctors and  the Yale PICU nurses- You are incredible at what you do. Not only now during this pandemic, but each and every day! You are special people.

•And to Dr. DiLuna and our entire Yale New Haven Pediatric Neurosurgical team...it goes without saying that our hearts are so full because of you.    You saved our son’s life - something that can never be repaid-  we are forever grateful for your knowledge and skill!

Thank you to everyone who has supported us through this hard time.  We are so lucky that DJ is healthy again and to have such a loving support system. 



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