What do you tell your child with cancer when they ask, “Am I going to die soon?” Kary wrote in her online journal in August 2022.
The question wasn’t new; she’d heard it before. Kary’s 10-year-old daughter, Rinoa, had a brain tumor.
August 25, 2022
Today she asked me this again. Probably the third time and I never know what to say. I just hug her and tell her we’re killing the cancer. I hate this so much.
Kary chronicles the ups and downs of the family’s cancer journey in regular social media posts. The posts keep friends and family, here and overseas, updated on Rinoa’s treatments and progress. For Kary, the posts serve as an online journal that helps her sort her thoughts and express her fears. And on this day, her precious daughter was at St. Jude Children’s Research Hospital instead of at home playing with her brother and sister.
“It hit me pretty hard,” Kary recalled. “I tried not to cry. I just told her they were doing everything they can. I know you’re supposed to say ‘no,’ but I told her we’re here (at St. Jude) so that doesn’t happen.”
It’s frank talk for a kid, but real talk. Despite the progress in cancer treatment and advances made at St. Jude, one in five children in the U.S. who are diagnosed with cancer will not survive. Little kids don’t understand what’s going on. A 10-year-old like Rinoa knows.
July 22, 2022
How it began: Rinoa suffered from extreme headaches and vomiting and was referred for an MRI by her physician.
At first, doctors thought she had migraines. After an MRI, Rinoa was rushed to a children’s hospital about four hours away from their tiny North Carolina hometown, population 1,600. Rinoa had a mass in her brain. Over the next 24 hours, she’d have a drain inserted in her brain and undergo surgery.
She was diagnosed there with medulloblastoma, a cancerous brain tumor.
Kary doesn’t really remember getting that heart wrenching news. “Apparently, I completely shut down. That’s what my sister-in-law told me,” Kary said.
Her husband, Wayan, was standing outside in the rain on the telephone. “I heard from my sister-in-law because my wife couldn’t talk,” Wayan said.
His employer let him join Rinoa and Kary, but the restaurant chef couldn’t stay. He had to work and had two younger children to take care of.
After her brain surgery, Rinoa needed proton therapy, and was referred to St. Jude Children’s Research Hospital, which is home to the world’s first proton therapy center solely for children.
Oddly enough, just weeks before, Kary had started a St. Jude video gaming fundraising challenge. She didn’t know anyone who had been treated at St. Jude before Rinoa, but for years she had known about the hospital’s mission to cure childhood cancer. She wanted to help.
“I’ve always donated to St. Jude when I could, even as a teen,” Kary said. “I just thought it was so sad that kids got cancer, too, and wanted to help cure them.”
Her little girl’s referral to St. Jude brought a sense of hope.
“I was happy. That was the only thing that made it all feel a little bit better. Because I knew that St. Jude was the best place she could go,” Kary said. “I was like ‘Yes, yes, yes, please send her there.’”
July 25, 2022
IV number…. I’ve lost count. My poor baby is bruised up and down her arms with some scars from all the pokes.
Pokes and pain — these are things you can’t do anything about, other than to keep up a brave face.
“Some days, as soon as she was sleeping, I was crying nonstop while she slept. It was just like a roller coaster,” Kary said.
Kary hid her tears, but Rinoa didn’t hide from Kary. Once a port was surgically implanted in her chest, there were far fewer needle pokes. Treatment stole Rinoa’s silky dark hair and left her tired and nauseous. But there were good days too, when Rinoa would go outside to blow bubbles or attend classes at the St. Jude Imagine Academy by Chili’s.
By September, with radiation over, Rinoa and her mom were ready to go home to North Carolina for a few weeks before chemotherapy began.
It was good to be back with the family for at least a little while. But they hadn’t left cancer behind.
Chemotherapy started as soon as they returned to St. Jude in October.
November 11, 2022
Cycle 2 isn’t going well. We didn’t get much sleep last night. She was up puking a lot and now has horrible stomach cramps and diarrhea. Plus she has a headache.
Days after this post, while on a video call with her dad and younger sister, Rinoa burst into tears. With her family so far away, the sound of her young sister’s laughter, which should have cheered her up, instead brought her down.
Tears were a constant for a while, as Kary helped Rinoa through their unpredictable days. One day she’d feel fine, the next, there were headaches that made her cry and more nausea. Rinoa might spike a fever or suddenly have low blood pressure. She’d feel great one minute and nauseated and debilitated the next.
Oddly enough, sushi, her favorite comfort food, became an acceptable breakfast option for her queasy stomach.
At Christmas, Rinoa and her mother celebrated at St. Jude while her dad, brother and sister celebrated at home. She didn’t ask for anything special and her pile of gifts included squishy stuffed animals, games and a dollhouse.
Rinoa is quiet, like her mom. She’s a caring kid who wants the best for everyone.
“She’s the sweetest person ever. And is always happy and trying to put a smile on everyone’s face,” Kary said. “She has the best imagination and is super artistic and just an overall great person.”
Her art was one of the first things Rinoa resumed after brain surgery and whenever she’s feeling better. She’s known for the little creatures she draws. One has been reproduced on a T-shirt to raise awareness about childhood cancer.
January 30, 2023
Rinoa has no evidence of active disease. I’ve never felt happier hearing a single sentence in my life….
With those words, “no evidence of active disease,” Rinoa’s months-long stay at St. Jude was coming to an end.
Grateful good-byes were followed by a long road trip home. They’ll return for scans later in the year and Kary is hoping the entire family can come with them.
“I’m happy and glad because I don’t have my tumor anymore,” Rinoa said.
Now, the child who for months was so tired that she was asleep by 8 p.m., stays up past midnight to read and play video games. She’s getting stronger, regaining her appetite and is eating more. She’s in fifth grade, but not well enough yet to attend school in person. Her mom is hopeful that if her chest port is removed, she’ll be able to go from virtual school to in-person classes this fall.
Rinoa reads her mom’s social media posts now and loves to see the comments of support and encouragement from family and friends. Kary doesn’t try to hide much from her, just her tears and the sad prognosis for some of the children they’ve met at St. Jude, like those who go into hospice care.
Last fall during their only visit home, Rinoa was too weak to lift her 2-year-old sister. Now, if she struggles, it’s because her baby sister is growing up healthy and strong. And now when she hears her sister laugh, Rinoa laughs, too.