I want to tell you a story about a very courageous young man named Matthew LaRocca. When it comes to finding the right words to describe Matt there are a few that come immediately to mind – Hilarious peacemaker, fighter, brave, studious, thoughtful, a fabulous baker, funny tee shirt wearer and one that is not easily forgotten.
Every Dr that has been involved in his care has told us that there was just something special about Matt, he just had a way of getting into people’s hearts. Matthew has always been known by his doctors and clinic nurses as the best patient-baker they have ever known. He has his own cookbook, been in the newspaper, on TV, on radio and also helped create a website (www.braintumorhumor.com) with his dad to bring brain tumor awareness through funny tee shirts. Some of his favorites were “BRAIN TUMORS SUCK”, “I got the scars on my head while fighting off 12 ninja’s who were after my lunch money…yeah, that’s what happened” and “Certified Chick Magnet…Courtesy of my last MRI”. You could always count on Matt for a great laugh!
Matthew was born October 23, 1998. When he was born the first thing we noticed was his head full of dark hair and a crazy cowlick. Matt was a cute butterball of a baby and smiled all the time. Through his early childhood Matt had little quirks but they never seemed to be anything major. He had a hard time tying shoes (fine motor tasks), learning to ride his bike (balance), a cute lisp and unexplained digestive issues.
Then one day, in Nov of 2009, his pediatrician saw a bobble in his eye called a nystagmus. It too was thought to be not a big deal, maybe a sinus infection or due to his glasses prescription needing to be changed. We followed the eye doctor’s suggestion and had an MRI. Within an hour a doctor looked our son in the eye and told him “You have an awfully big brain tumor in there.”
Our world started spinning and within hours he was admitted to the hospital and preparing for brain surgery. That was a lot to digest for a 11-year-old 5th grade honors student who was so worried about missing school and band practice that he was back in his seat a mere 7 days after major brain surgery.
Matthew was diagnosed with a large brain stem ganglioglioma, a very rare brain tumor and even more rare in its location. The tumor appeared to have been there from birth and very slow growing. This tumor was benign by makeup, but malignant by location. He was initially given a 10-20% chance of making it 1 year.
I refused to accept that prognosis and that is when the fight truly began. More than one doctor has called me ‘A force to be reckoned with’ and my hope is that I made more friends than enemies along the way.
While Matthew began to heal from surgery we were encouraged to take trips, visit family and enjoy our time. We consulted with a few doctors, but chose Amy Smith at the University of Florida – Shands to care for Matthew. The 3 1/2 hour drive to her was well worth it…she and her team are amazing.
Matt began chemo in Jan 2010 but after one round we stopped due to tumor growth. We took a break, built his body back up with natural alternatives and waited for more feedback. Matt finished 5th grade – he graduated with honors and a standing ovation.
During late spring we moved our family back to Nashville, TN to be closer to family and a larger children’s hospital. Matt’s worst symptom was hiccups – horrid, constant, brutal hiccups – due to the location of the tumor. After more tumor growth in the summer of 2010, Matt started another round of chemo that went for 5 months and was also put on decadron (steroid) for swelling. While the MRI’s continued to read stable, he was showing signs of decline in several areas.
He was doing PT and OT a few times a week and school was being done mostly at home. He was granted a Make-a-Wish and due to him being hot all the time he chose a cruise to Alaska which our family of 6 took in Sept 2010. It was an amazing experience and a huge blessing to Matt.
During the summer and fall months, I consulted with doctors at Duke, Boston Children’s, Cedars Sinai, St Louis Children’s, etc… No one seemed to think his tumor was operable, at least not without major risk.
Then in December 2010 a connection was made with Dr. George Jallo at Johns Hopkins in Baltimore. They have an amazing track record with brainstem tumors and Dr. Jallo does more resections yearly than all the other doctors combined in the world. We decided through much prayer and thought that it was our best chance.
Matthew’s surgery was on Jan 7th, 2011. He did fabulous. While other facilities predicted he could be in the hospital for upwards of 3-4 months, we wheeled Matt out the doors just 6 days post-surgery. The most amazing part was they resected 60-70% of the tumor and Matt was hiccup free. A miracle! We were back home in TN a mere 8 days post-surgery and we began a 4 day per week PT/OT regimen.
Matt worked so hard to gain his strength, endurance and dexterity back. The steroids had been brutal and resulted in over an 80lb weight gain in 8 short months. Despite the success of the surgery, Matt was miserable and growing tired. In late March, Matt decided he did not want any more treatment, which included the last resort recommendation of radiation.
He woke a week later with a fever and what sounded like pneumonia that had set in literally overnight. The tumor’s location compromised his respiratory system and heart rate. He was admitted to the hospital for antibiotic treatments and observation but his body had all it could take. It all happened very fast from that point on. I heard ‘crash cart’ and saw people come running. He had just been watching Jimmy Neutron and eating a chicken quesadilla! The doctors and nurses at Vanderbilt worked tirelessly on Matt for 45 minutes to intubate him but in the end Matt decided it was his time to go home.
Matt won! He defeated the brain tumor that tried to defeat him.
We made a decision at diagnosis that life would not be lived with Why Us questions. Life isn’t always fair or painless, but God is good and we would trust Him through that journey. If God did not heal Matt on our terms, which would be to continue life here on earth with his family, then the only things I had asked Him was that Matt not suffer, He take him swiftly and that his little brother not be present. The events of April 6, 2011 that led to Matt’s passing were just as I had prayed. Not a thing was missed by our God.
Many weeks have passed since Matt physically left us but he is still a very important part of our lives. I’m sad he missed the season finales of The Office and Big Bang. That he hasn’t gotten to see his little brother play baseball this season or who won American Idol this year. But I know Matt got the better end of the deal.
He taught so many people so many lessons in his life. His impact has gone literally around the world. He is whole, free to run, free to play football again and free of a cowardly brain tumor that tried to take him down.
While our hearts are broken, we are at peace knowing we did everything we could for Matt. Thank you to the Brain Tumor Foundation for all the support, resources and encouragement you have given to our family. We are blessed to have been put into contact with you all. Fight on, brave kids, FIGHT ON!
The LaRocca Family – Dean, Kim, Jordan, Alyssa, Miracle Matt and Ryan www.caringbridge.org/visit/matthewlarocca