Carlsbad family with son fighting cancer shares story — ‘I wasn’t alone anymore’
It’s been a tough journey for Ori Singer and his family since he was diagnosed with a brain tumor at age 5, but then came hope in the form a group who call themselves the MaxLove Project
Its been a tough journey for Ori Singer and his family since he was diagnosed with a brain tumor five years ago on July 24, a day that’s still sharp in his mom’s memory. Ori was 5. The tumor is still there, it couldn’t be operated on.
Ori went through a slew of other surgeries and chemotherapy. Just as things were looking up, there was a new growth two years ago. There were dark places the Singers had to get through, but there was healing in the form of a group of people who call themselves the MaxLove Project.
The healing came through talking with other parents fighting for their kids’ lives and nurses, nutrition specialists and doctors fighting alongside them. They’re all part of MaxLove. The nonprofit’s mission is to help families beat the odds as they fight cancer and other rare diseases.
After Ori’s cancer treatments, he kept having to go back for MRIs every three months.
“This is where I fell apart. I couldn’t sleep for at least a month leading up to the next MRI and my mind would be flooded with all the possible outcomes,” said Ori’s mom, Sophy Singer. “I really got to a low point where I realized I was just functioning and walking through the motions, but not actually living.”
Then someone brought her to a MaxLove support group, where parents shared their struggles and triumphs.
“It was the feeling of ‘Oh, my gosh, I’m not alone in this.’” Singer said. “We are all constantly exchanging ideas and talking about how hard it is with one another. It is a dark situation to be in, but yet, this community showed us that there is light and love.”
The nonprofit offers care through culinary medicine, mental wellness tools, therapeutic social support and educational resources.
When it came time for Ori to do his second round of treatments — 14 weeks of chemo — the Singers chose to give Ori a modified ketogenic diet lower in carbs and higher in fats in an effort to boost improvements from the treatment.
Singer reached out to nutrition specialists at the MaxLove Project, and they provided nutritional guidance and a ketone monitor to measure Ori’s level of ketosis.
Other parents shared links about their kids’ favorite keto snacks and constantly kept in touch with the Singers.
The tumor started to shrink.
“As the tumor started to shrink more, his smile came back as the pressure on those nerves came off, it was really miraculous,” Singer said.
There was healing for the whole family.
“The community support saved our lives,” said Singer, who also has a daughter, Ori’s twin.
Singer also started to see how her distress affected the family.
“I came to understand that parents are the central nervous center of the home — if I’m scared, it seeps through to the whole family,” said Singer.
But when she was able to talk it through with others, she came to terms with the situation and was able to overcome the fear.
“What gives us hope is that the community itself is the foundation of love at MaxLove Project,” said Ori’s father, Michael Singer. “It’s the connection with these other families and meeting them in person at events. Just seeing smiling faces and loving support come from all different walks of life. You suddenly are surrounded by people who care and understand the struggles you are facing,” he said.
A large part of the family’s healing came from a MaxLove program called “Parents Rising,” which includes educational resources and support from a cohort of several other parents. “You start it together and walk through all the levels together in eight weeks at a time,” Sophy Singer said.
“The healing that has taken place has rippled into my entire life — my family, my friends and my work,” said Singer, who runs a matchmaking dating service called Sophy Love.
As of last year, Ori has been free of cancer. He loves to go to Disneyland and Great Wolf Lodge. He is a film aficionado and loves everything about movie-making.
“So, while Ori is doing great and thriving, he does still have a brain tumor and there is a very good chance that it will start growing again at some point. It is something we will have to manage for a long time,” Singer said.
It might stop growing after he stops growing. It’s unknown and unpredictable, but for children living with these tumors, the goal is to get them through their growing period in hopes that it becomes dormant over time, Singer said.
But the family is equipped to deal with it and they are not caught up in fear.
“Every six-month MRI is another grace period for us,” Singer said.
In the meantime, the good vibes are coming through.
Ori got two awards this year at school. One was for “Most likely to spread joy” and the other for “Most likely to have a smile on his face.”
Singer, who joined the board of the nonprofit MaxLove this year as a way to give back, is leading a fundraising team to support MaxLove Project’s Parents Rising Emotional Health & Wellness Programs.
Singer’s team, called Team Love, is one of four that are part of the nonprofit’s Fork Childhood Cancer Challenge.
“Today, we’re facing a national crisis in philanthropy. Along with many other small nonprofits, we’ve experienced a 50 percent decrease in revenue at a time when our services are needed most,” says Audra DiPadova Wilford, co-founder of MaxLove Project. “This is why innovative peer-to-peer fundraising like this is critical,” DiPadova said.
Other teams include Team Green, Team Hope and Team Ohana. Each team hopes to raise $25,000 to pay for programs that are offered free to families with children fighting cancer.
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