By Theresa D. McClellan
For The Fort Bend Star
The bright-eyed blonde-haired boy who loved Batman, cooking with his father and cuddling with his mother blew out his four birthday candles in November 2014 and gave that trademark big grin as he told his parents, Peter and Alexis Olympia, that he wished for a baby brother.
“Connor wanted to be a big brother so badly. It wasn’t part of our plan but it was a blessing from above,” said his mother. “Such a beautiful blessing,” she said as she kissed the cheek of her smiling 9-month old son, Ryan Henry Olympia, while he bounced on her lap and clutched a fistful of hair.
Connor chose Ryan’s middle name and gave him a virtual “high five” as he went to his mother’s doctor appointments and traced the baby’s outline on the ultrasound monitor. But he never got to meet his baby brother.
Connor died Oct. 29, 2015, six days before his brother was born – snatched away from his family by a rare, fast-growing brainstem cancer called DIPG that affects about 200 children a year between the ages of 5 and 10 years old.
They thought he had the flu
The Missouri City parents brought their son three times to the hospital emergency room with a flu diagnosis until doctors finally did a cat scan and returned with the devastating news.
Connor had an inoperable brain tumor. There wasn’t much they could do. Within five days of the diagnosis Connor lost his ability to swallow, speak and move the right side of his body.
The cancer moves that fast and treatments haven’t changed in more than 40 years.
“Neil Armstrong’s daughter – the man who went to the moon – she had this and she got the same treatment as Connor, nothing has changed” said Peter Olympia.
This is the story of a little boy who made an Olympian effort to survive and shine a light of joy while fighting a devastating, rare cancer. He endured radiation treatments and chemotherapy and had a brief reprieve. To make matters more difficult, while Alexis Olympia was carrying Connor, her parents were battling cancer and husband Peter was serving in Afghanistan. He made it home eight hours before Connon was born.
This is also the story of a young couple that did everything they could to fight the cancer that took their son – including donating his tissue to continue research to find answers – and the community that supports them.
Restaurant owners Ron and Claire Brandani of Brandani’s Restaurant and Wine Bar, learned of Connor’s story through neighbors, as they both live in the Sienna Plantation community. Ron lost his mother to pancreatic cancer and her paintings adorn the walls of his restaurant at 3340 FM 1092 in the Missouri City Town Center Square.
“I know loss,” said Ron Brandani whose eyes well up thinking about his mother who painted a picture foretelling of his restaurant ownership but did not live to see his success. “But when you think about kids getting cancer, you get goosebumps,” he said.
They started off offering small help. The restaurant owners provided the family food for six weeks as her parents were going through separate cancer treatments.
“We wanted to be a blessing and didn’t want them thinking I was peeping in on their grief,” said Claire Brandani, who has been volunteering in the community since she was a teen.
After Connor died, they learned about the Defeat DIPG Foundation created by the Olympia family and their website www.Connorman.org.
The Brandanis decided they wanted to help make a bigger financial impact. Since August is Restaurant Week, when businesses donate $5 per customer to the Houston Food Bank bringing exposure and funds to the charity, the Brandanis said they decided to do one better. There are five Tuesdays in August, so every Tuesday in August he donates half of his restaurant sales from lunch, dinner and carry out orders. They want to raise $20,000 for the family foundation. All monies raised go to research.
“The thought of giving half your sales for five days is scary but if we can help bring exposure to this disease,” said Ron Brandani.
It’s an ugly disease that took the Olympia family on an emotional rollercoaster.
“There is nothing like seeing your child sick. But to see what the disease and tumor had done to him, no one should have to go through that. We don’t want another parent to go through that,” said Peter.
To combat the swelling from the disease they gave Connor high doses of steroids but that caused more complications that severely increased his appetite and changed his outward appearance. “He couldn’t even smile, it robbed him of his beautiful grin,” said his mother.
But she could still see the smile in his eyes, As he lost his ability to walk, his father carried him. A neurosurgeon said he had a month to live.
“I couldn’t believe what was happening to us or him. How is that possible? Five days ago he is riding his bike at pre-school. We are living our life, how can this be? It was just shock and disbelief,” she said.
Alexis said she went into “mommy mode” just holding him, reading to him, talking to him. Peter’s father started researching clinical trials and options. At one point he pushed a tablet toward her to read something.
“He thought I knew it was such a rare cancer. It hit me. Oh. My. God,” the mother recalled.
After receiving the diagnosis at Memorial Hermann, they were transferred to MD Anderson Hospital where they spent 51 days at their son’s bedside from December through February.
“They said to say goodbye. The radiation was increasing problems and causing complications. That Christmas they told us to say goodbye and two days later he stopped talking,” recalled Peter.
After 30 radiation treatments Connor came home. They said he had hydrocephaly and the tumor was not shrinking. The family refused to give up at home and met with a neurosurgeon who suggested a procedure to alleviate brain pressure.
“They did it and three days later we heard our little boy laugh. He regained his different functions from laughing to talking. He worked hard with his physical and speech. He was 4 years old but he was all in. We called it our new normal,” said his mother.
But the honeymoon of health didn’t last.
As her oldest son was deteriorating, her second baby boy was growing bigger inside her. She credits Peter’s forward thinking with deciding to donate Connor’s tissue for research. Their donation was the 13th in the nation. In addition to helping researchers find the missing connection that could set them on the path to a cure or give better odds for new patients, providing a tissue donation is way of keeping Connor alive.
“If we hadn’t done that, I would have a big regret. Another family we connected with did not donate and they regretted it. We decided to create this foundation to carry on his fight and make a difference,” Alexis said.
“With DIPG only 4 percent of federal dollars go to pediatric research for ALL pediatric cancers and a fraction of that goes to DIPG. Affected families make up 90 percent of the dollars going to research,” Alexis said.
So they created the DIPG Foundation using Connor’s beloved Batman logo with the words “Connor Man.” They connected with another family in Bethesda, Md., and plan to join forces to make the foundation grow.
“We want people to know there is hope,” Alexis said.
She also wants to thank her community for standing behind her.
A bowling tournament raised $30,000. The Brandanis hope to raise $20,000. The family wants to be able to give a local researcher $100,000 to focus on DIPG.
“I didn’t know Connor had such an impact on people he never met. Despite all the bad we’ve been through, and it’s a lot, there are good people out there. We are grateful for this opportunity to raise money from everyone who walks into the restaurant,” Alexis said.
She talks to Ryan Henry about his big brother.
“I feel as if he knows him already. I tell him how badly Connor wanted to meet him. How brave he was and what an amazing big brother he was even though Ryan was still in mommy’s tummy to him. He was so excited to share the news with people. He’d call him ‘our baby.’ I will tell him how much he loved him.”