In June 2008, a few weeks after Thomas turned 8 years old, he started to experience some blurred vision and dizziness.  Although these symptoms went away after two days, he subsequently started vomiting about once every three days.  With no other symptoms to track and after several doctor appointments, the episodes of unexplained vomiting gradually became more frequent.  Vertigo was ruled out and we moved forward with an MRI of his brain which revealed a tumor located around his cerebellum.  Thomas was immediately admitted to Children’s Hospital of Los Angeles (CHLA) on July 8, 2008.

Thomas was diagnosed with a rare variant of medulloblastoma brain cancer, called medullomyoblastoma, with metastasis to his central nervous system.  He underwent a full tumor resection on July 9, 2008.  Two weeks later, he began the Phase III Head Start Clinical Trial, written by Dr. Jonathan Finlay, Thomas’s primary oncologist at CHLA.  Unfortunately, at the onset of chemotherapy, Thomas started having seizures which led to an emergency surgery at his bedside on the oncology floor to place a ventricular drain.  He spent the following days in the PICU in a stupor, while intubated for three consecutive days.  Chemotherapy continued, while TPN, lipids and anti-seizure medication were added to his long-term regimen to sustain his life.  We learned with time that the seizures, which occurred early in Thomas’s treatment, were the result of the dissemination of cancer throughout his central nervous system.  The seizures were also a sign of the intense aggressiveness of this particular variance of pediatric brain cancer.  It would be a long, uphill battle.  Thomas wouldn’t be discharged from CHLA until March of 2009, one week before he passed away.

Thomas received the full gamut of treatment:  several months of chemotherapy, countless antibiotics, blood and platelet transfusions, port replacement surgeries, two ventriculostomy surgeries, radiation to his brain and spinal cord, and several apheresis procedures in an effort to harvest his own stem cells for transplant.  His entire treatment journey was a series of ups and downs.  Every time we thought we made progress with two steps forward, we would take one step back.  While preparing for the next series of apheresis procedures, we learned that Thomas had developed a small fluid collection in the lining of his lung.  The harsh reality was that Thomas’s subtype of medulloblastoma was one of the very rare forms that can spread outside the central nervous system.  The fluid rapidly increased and caused respiratory distress, leading to several thoracentesis surgeries to keep him breathing comfortably.  Because the fluid was filled with cancer cells, we all came to realize that there was no further anti-tumor treatment that could save our boy’s life.

During our 8-month stay at CHLA, we grew to love the hospital staff like family, especially Thomas's wonderful Dr. Finlay and his amazing nurses.  On his "feel good" days, Thomas would share stories with each of them, always mentioning his two siblings, Lauren and Paul, who he adored.  Excitement was written all over his face every time Lauren and Paul visited, as they would often hop right onto his bed for big hugs and special chats.  Our time at CHLA was filled with every emotion.  We were living on a terrifying battle zone, and yet CHLA was also a place of beauty and hope.  We remember our intimate and precious moments together:  wheelchair rides to the CHLA gardens, being silly and laughing out loud, reading books, playing games, exchanging thoughts and stories, snuggling while sleeping in the same hospital bed, escaping to “the outside world” with one special trip to the Griffith Observatory, and most importantly, having the opportunity to be still and hold hands as we exchanged our hearts in prayer.  All the while, our beautiful friends and extended family rallied behind the five of us and took care of the rest.

Thomas was and will always be our true hero.  His heart remained full of hope during his entire battle at CHLA, and his courage deeply touched us all as we watched him put the needs of others before his own.  He continues to be our teacher of remarkable strength while his attitude of never giving up has inspired us for a lifetime.  Thomas was the youngest of three children, as well as the youngest of his 19 first cousins.  With his great sense of humor, he filled our home with laughter.  He was smart and had a positive energy that was contagious, as he loved to learn and share new ideas.  His two favorite team sports were soccer and baseball, and he enjoyed being a team player with his many friends.  Most of all, Thomas had a special way of making others feel good as he comfortably connected with people, both young and old.  He was a great listener, and while he could attract attention with ease, he soon became known for being capable of lighting up a room with pure joy.  Thomas frequently shared his thoughts and feelings with his family.  Sometimes, he would express himself to each of us individually in the form of a love note or drawing.  His heartfelt creations would often be "delivered" in a marked envelope or hidden in our home as he intended to surprise us at any given moment.  His character was uniquely shaped by his old soul, his comedian-like antics and his thoughtful, caring ways. 

We believe there is no better way of honoring Thomas's legacy of hope than to continue helping those who are currently in the fight.  We will never give up on hope for the cure until there is an end to this devastating disease. 

Hero quote:  "I love you more."

Information provided by Tish Hearne, Thomas’s Mother
June 2016

Pictured:  Thomas with his siblings, Lauren and Paul