STEVE REID
Editor & Publisher
sreid@lbknews.com
What is a lifetime and how long is far too short?
And what length will a mother and father go to save their child from danger, much less death?
And what emotions does a mother feel when one day their six-year-old child is a firecracker of energy, laughing across playgrounds, chasing friends through Southside Elementary hallways and swimming at a birthday party only to hear later day the cruelest of diagnosis: “We found an inoperable brain tumor and your son, Lucas Ticola, has four months to live with a possibility of a year with intensive treatment.”
In moments like this all time and goals and pettiness and routine halts. Adrenaline and panic resolve into a fighting spirit — a spirit of pure perseverance to save the child at any cost, using any means and every avenue.
This is the world the Ticola family found themselves in only 10 days ago.
On Sunday, August 18, mother Andraya and father Pete Ticola heard this diagnosis following what started as a cautionary visit to the ER.
It began as a normal day for Lucas, who happily swam at a friend’s birthday party in the morning.
Lucas, perhaps the most active child on any playground — his nickname is superhero MIGHTY ROBOT TIGER LUCAS — fell that Sunday and seemed uncharacteristically imbalanced. The parents thought he must have hit his head and like all concerned patents they went to the ER. Soon, this ordinary moment turned into a life-changing event.
That trip to Sarasota Memorial morphed into an ambulance ride to All Children’s Hospital in St. Petersburg, FL. And after further testing, they received MRI results, which ultimately provided the news that no one wanted to hear. Lucas was diagnosed with Diffuse Intrinsic
Pontine Glioma (DIPG).
DIPG is a highly aggressive brain stem tumor located on the Pons. Due to the location of the tumor, it is considered inoperable with very limited options for treatment.
The disease is one of the rarest forms of cancer. DIPG affects 200-300 children per year and holds a very-low long-term survival rate.
The heartbreak and devastation that Andraya and Pete are experiencing is on a scale that no one should ever have to endure. But the family, and in fact the entire community of friends of the family and the Southside Elementary community are a testament to how the very best of humanity is instigated by the most tragic events.
As a ray of hope, the parents found a case where one child in Europe has survived for years — a miracle — after treatment. They are determined to make Lucas, with all of their life energy and all of their son’s life energy and the best of the medical community, a second miracle.
The parents are fighting and resolute that their son’s life is not resolved as a statistic claimed by this disease.
And in many ways their prayers are being answered with financial support, medical support, spiritual support assisting this couple that is, as anyone would be, financially and emotionally unprepared for this twist of life.
Lucas’ mom wrote the following immediately after the diagnosis.
“How were we on a road trip and cruise less than a month ago having the most amazing family vacation time with a healthy vibrant boy to where we are today? …It’s unfathomable to us that this is really happening. Lucas is a ray of sunshine and makes an impact on everyone he meets. For us, he is our everything; our world. Our son has been diagnosed with a rare, aggressive form of brain cancer – DIPG. Reading about it is horrific. We will ONLY accept a miracle and are not accepting anything less. I am asking everyone if you have connections, resources, know of the best of the best treatment for this, we will go ANYWHERE and are prepared to do whatever it takes to save our little boy. Please, please, please pray for our munchkin. Because there is no other option than for him to be by our side and have the chance to grow up and experience life.”
Within days, the best of humanity started to emerge. A GoFundMe was set up. His father, Pete, took on the task of finding the best care, whatever the effort, the cost or the sacrifice and he found results.
Here is what he wrote on a Facebook page a friend set up to inform the community.
Peter Ticola wrote: “My mission has been fully focused on connecting with top doctors, researchers, and finding the BEST plan A for our beautiful boy. We have spoken with Dana Farber, Sloan Kettering, UF Health, St. Jude’s, and many others. We knew in our hearts and gut that St. Jude’s was the best place for Lucas and will be under the care of one of the top doctor’s in the world dealing with pediatric brain tumors, Dr. Amar Gajjar. The other hospitals we have connected with will be reviewing his case as part of a tumor board throughout his treatment. Our goal is to have all these amazing doctor’s remember the name Lucas Ticola if a plan B, C, D, or E is ever needed. We want to thank with our entire hearts and souls Samantha Swann Crespo for linking us directly to the top at St. Jude’s
We will be heading to St. Jude’s on Monday. And Lucas will be part of a clinical trial that includes radiation. Today was the most special send off at his school Southside Elementary that included donuts, a morning prayer, all the students lining the halls cheering and chanting “Let’s go Lucas”, a giant robot, Daddy reading one of his favorite books to his class, hugs with friends, and popsicles. We felt the love and support fully. And wow, did they make Love for Mighty Robot Tiger Lucas feel so special.
Our hearts are filled with love and hope. And soon we will have that miracle. So thank you, thank you, thank you! Keep those prayers coming!”
Many people have reached out asking to assist and support in any way possible. Bird Key Tennis Director Jackie Bohannon called Longboat Key News seeing if we could help get the word out, help generate support.
Anyone who finds it meaningful to give $5 dollars, or $500 dollars or $5,000 dollars or a small or big present or gift should know they have made a difference. In many ways the act itself is what makes a difference in moments like this for a family that is fighting against the fear each and everyone of us who loves anyone fears.
If you wish to make a donation, either make it at GoFundMe and type in Lucas Ticola, or, drop off a gift or a check made out to the Ticola Family to Jackie Bohannon at the Bird Key Yacht Club and she will bring them to the family.
And if it is not apparent, the Ticola’s are hard working normal people with normal healthcare and fully vulnerable in their jobs and their everyday stability. Traveling and being present for their son during treatment is their focus. Every other part of their life must fall away as they make every moment available to their son and make every opportunity a reality.
So the support will offset but a small part of this dark slice of life and might take even a drop of pressure off of this precious and fragile time in the community.
Every donation will go towards medical expenses including chemotherapy and radiation treatments, clinical trials, airfare, rehabilitation programs, and other essential resources that will help him as he battles DIPG. It will allow them to focus on their son and not compound the problems like things falling apart on the home front.
The family, both mother and father say that even if nothing else is possible, to flood the skies with your infinite prayers.
Go to this Facebook Page for updates: Facebook Page – Love for Mighty Robot Tiger Lucas
You can also click on the image below to get to the GoFundMe link.