“Mani was special, the kind of special that stays with people forever”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Mani Naraini seemed most at home in the kitchen – baking breads and muffins, making pasta from scratch, and tossing dough for pizza.

That’s how his mom will remember him.

“He loved to cook,” Michelle Naraini said, especially when he got to use the fancy cookware gifted to him by Make-A-Wish.

For three years, cooking was an outlet for his pain, a chance to do something normal when his life as a teenager was decidedly not normal.

He was just a freshman at Greenwood High School in the winter of 2023 when he learned that the left-sided weakness and seizures he was suffering were the result of a tumor pressing on his brain.

Glioblastoma is an aggressive form of cancer that requires equally aggressive treatment. In Mani’s case, that meant multiple surgeries with Riley Children’s Health neurosurgeon Dr. Jignesh Tailor, chemotherapy and radiation.

It also meant the Riley team – oncologists (including Dr. Scott Coven and Dr. Alex Lion), surgeons, nurses, child life specialists, therapists, teachers and social workers – became part of the teen’s extended family. That was the impact they had, said Mani’s mom, grateful for their care even as she copes with the loss of her son one month ago, just weeks after his 18^th birthday and his high school graduation.

“I don’t think we would have gotten through this without them,” she said. “They have all been so kind and caring toward us.”

Whether it was the Little Italy pizza-making party in the Child Life Zone with Chef Mani in his element, a cooking contest on the rehab unit (Mani won, of course), foot rubs in the hematology-oncology clinic, or countless games of pool in the CLZ, he found joy at Riley.

“He was a good trash talker,” recalled child life specialist Maddie Rodriguez, who developed a close relationship with Mani and his mom. “And he won every game.”

She remembers much more about the young man, who also loved playing tennis, going to escape rooms and hanging out with his friends. He was 14 when she met him the day he came into the emergency department at Riley on Feb. 27, 2023.

It was her job to help him make sense of the news the doctors were delivering to his mom. She used a 3-D Play-Doh brain mold to show him where the tumor was and how the surgeon would remove it.

“Child life brings a lot of the happy and magical moments for patients, but we’re also part of the really hard conversations,” Rodriguez said. “I remember sitting with him and the surgeons to help him understand what was going on with his body. It’s not a parent’s job to know how to do that. We’re lucky that our team works together to do it in a way that doesn’t need to be scary but in a therapeutic way where we meet children where they are.”

His mom remembers how her son smashed that brain, a rare display of anger that made complete sense in the moment.

But she also remembers how Rodriguez and the Riley team were always there to walk with them through the good times and the hard times.

From the beginning, they knew the prognosis was poor. Maybe two years, if he was lucky, doctors said. Instead, they got a little over three years, and they made the best of that time.

As she got to know him, Rodriguez said, Mani played it cool at first, but once someone broke through that wall, “he was funny, stubborn and sassy.”

He had a great sense of humor, others agreed.

“He always came into clinic smiling and cracking a joke,” said Whitney Cherry, neuro-oncology nurse navigator. “Mani was one of those patients who always took every bump in the road with such grace. I know his journey was hard, but he never complained, and he asked great questions. He was really involved in his care.”

The two would talk about tennis and cooking, two of his favorite subjects, but Cherry learned so much more from him.

“Life is hard no matter what you’re going through, but Mani really showed me that it’s important to stay positive and to advocate for yourself and to lean on the people around you and take every day with gratefulness,” she said. “He was a really special kid, an insightful young man. I’m honored I got the chance to know him.”

Everyone who knew him could see the incredible bond he shared with his mom. It was mentioned in every interview.

“She was his fiercest and biggest advocate. And he was always looking to her to make sure she was OK,” Rodriguez said.

“He and his mom had the closest bond between a parent and child I’ve ever seen,” said nurse practitioner Kelsey Knight, who supported Mani and his mom from the earliest days of his diagnosis.

“It was evident how much he loved his mom and felt safe with her,” agreed Cherry.

No surprise really because it had been just the two of them making their way in the world together since Mani was about 3, Naraini said.

The stress of his illness could have fractured that bond, but it did the opposite.

“One thing about his cancer diagnosis that always stood out to me was that through it all he was so brave and so caring,” Naraini said. “My friend told me while I was trying to be strong for him, he was doing the same for me. When I said I wish I could trade places with him and take it all away, he said he wouldn’t want that for me.”

He wanted to spare other people the disease that would take his life, so he agreed to donate a portion of the tumor removed from his brain for research purposes, his mom said.

Dr. Scott Coven, who was Mani’s oncologist through the end of last year, was struck by the teen’s maturity at such a young age.

“Michelle raised a really phenomenal young man. Seeing him grow up, seeing his kindness and compassion and empathy – they’re not natural traits that every young person has and certainly not every young male,” Dr. Coven said.

The physician, who is confronting his own serious medical condition, said his diagnosis brought a new dimension to his relationship with Mani.

“It has made me a better person. It has helped me understand their journey better. There are people and families who come along at certain times in life that have a deep and profound impact,” he added, “and I think we don’t always recognize what that’s going to look like.”

When he stepped away from his day-to-day clinical role, Dr. Coven wrote a letter to Mani and his mom, explaining his decision and sharing his gratitude with them.

“Words were kind of the last thing I could give them,” he said. “Our families trust us to provide the best care but also to treat them well and advocate for them. Michelle and Mani were no different. They trusted us to do those things. Even toward the end, they were so thankful for the care we provided.”

Losses like Mani’s take a toll on the care teams, who develop strong relationships with patients and families, he said. But they absorb powerful lessons as well.

“What continues to stand out and overpower the hard moments these last three years is that Mani's heart, strength, humor, smile and love for his mom was always there,” Rodriguez said. “It was there on the best of the best days. It was there on the worst of the worst days. In the end, it’s the good that always shines through.”

Just like the sun shining on Mani and his mom when Rodriguez and the nursing team helped bring him outside three days before he died. It was the last time he was alert, Naraini said.

As a gift to his mom for Mother’s Day this year, one week before he died, Mani gathered all of his strength while inpatient for the last time to write the words “I love you mom,” which Rodriguez framed.

There were so many other small, meaningful mementos that Naraini received from the Riley team, including mother and son handprints on canvas, fingerprints on a necklace and a stuffed dog with a recording of his heartbeat.

“Riley really was there for us and I am forever grateful,” she said.

She also received a gift of a sourdough starter from Knight, which she hopes to use eventually to bake bread just like her son did.

“Mani loved to make bread and bagels and muffins. This will be my first time doing it by myself.”

As she remembers the love and joy her son brought to the world, it’s comforting to know that his Riley team will carry his memory with them as well.

“I will never forget his love, his selflessness and his fight,” Rodriguez said. “Mani was so special, the kind of special that stays with people forever.”