Ronil’s story is one of the hardest for me to write, maybe because I so clearly remember being 13, but more likely because of how he lives his life—with devastating beauty.

His father wheeled him into the living room where we could all meet and chat. His 9-year-old brother Sahil sat at his side, catching the drool that escaped the corner of Ronnie’s mouth. Despite his almost complete inability to move, Ronnie was entirely present—focused on the conversation, indicating in subtle ways that only his family could understand if he needed anything, and cracking up when something struck him as funny. In January of 2016, Ronnie felt dizzy and collapsed unconscious on the floor while getting ready for school. An MRI showed he’d suffered two strokes due to a tumor in his brainstem. He fell into a coma, which he wasn’t expected to come out of. The doctors encouraged his parents Manisha and Milan to take Ronil off of life support, but they fought them, saying, “He will wake up.”

Each day, the neurosurgery team came in, putting a catheter down Ronil’s throat to test for a gag reflex and touching his cornea to see if he’d respond. One week later, Ronnie did wake up, blinking to communicate that he understood what was happening and later explaining to the doctors that he’d felt everything they’d done to him, even as he was powerless to stop them.

Ronnie had surgeries for a G-tube (for nutrition) and a tracheostomy  (for breathing support), and he had a port placed in his chest wall (for infusions). He underwent 33 sessions of radiation at Oakland Kaiser in February of 2016, after which he slowly started talking again. By April of the same year, he had about 80-90% of the function back on his right side.

The family adds that Ronnie has always been selfless and loving, putting others before himself. At a time when he was unable to speak, he pointed at a few letters to ask his parents, “Are you all doing OK?”

Throughout his three-month hospital stay, the doctors advised Manisha and Milan to tell Ronnie about his condition, citing studies showing that kids fight harder when they know they have cancer. But his parents needed to tell Ronnie in their own time, in their own way. He was clearly capable of understanding the situation; it was up to them to bring it to Ronnie in a way that he could deal with.

Once back in the comfortable atmosphere of their home and when he was able to hold a conversation, Manisha and Milan explained to Ronnie that a rare brain tumor had caused his strokes. Over time and through a series of open talks, he accepted his diagnosis without ever breaking down, and though he was sad, he determined to face his illness and fight it. Since, he has adapted to this new life with ease and hardly any qualms. Ronnie’s will power to move on and make things as normal as possible for himself and the people around him set the tone for how he lives his life today and how others treat him. Truly, his parents gifted him this opportunity to assimilate this devastating news, and to work through how he was going to relate to having DIPG.After the initial inflammation from radiation had settled by June, Ronnie was able to get around with a walker and eat by himself. He told his parents he wanted to walk, play basketball, and go to school again. His neuro-oncologist told his parents, “That’s not going to happen. He needs to aim lower.”

By August of 2016, after months of occupational, physical, and speech therapy, Ronnie was back at school, walking, and climbing stairs. His latest scan showed a 30-40% reduction in the size of his tumor. Ronnie’s doctor finally conceded, “I’m seldom wrong, but you’ve proven me wrong.”

At his own insistence, Ronil had his trach tube removed in September. Ronnie valued his quality of life over the doctor’s concern that he might need the trach again later.

Ronnie was accepted into a clinical trial at that time, which he knew was unlikely to change his outcome, but would cause severe side effects, “Even if it doesn’t help me, it will help other kids in the future, so I have to do it,” Ronnie said. He never had the chance to take part in that trial, though, as his tumor showed slight shrinkage just before it began.

Eventually, enough of the blood from his strokes had dissipated to allow more healing in his brain, and by December, Ronnie was even able to go snowmobiling, indoor skydiving, and driving the zip-car on the streets of San Francisco.

Through everything, Ronnie has continued to live his life fully and with integrity. As soon as he would arrive home from school, he’d start his homework, refusing anyone’s help opening his laptop or getting his books. Writing and typing were difficult and tedious due to muscle spasms he’d developed. He earned B’s in his first term in History and Science, insisting, “I want the grades to be my own effort only.”

Last Christmas, he asked his family and friends to consider donating to DIPG collaborative charities in lieu of giving him presents.

Manisha recalls a time when they were going to a party, and they told Ronnie to leave his walker home because a lot of people would be there. She said they’d help him to a couch where he could sit the whole time. Again, Ronnie declined help, saying he was not ashamed of people seeing him use the walker. He was proud of his achievements, and this was his “new normal.” He didn’t care what others thought, and he wanted to be independent as possible. He often told his family, “I’ll ask you if I need any help, but don’t assume it and do things for me to make my life easier.”

Ronnie proudly cruised around the school grounds on his motorized wheelchair in the same places he once walked, ran, and played basketball. On Halloween, he dressed as a “bloody doctor” and even had the courage to go up on stage in front of the whole school and won the runner-up prize. He put up a sticker on the side of his wheelchair showcasing his sassy attitude: Keep Staring and I Might Do a Trick.But in January of 2017, Ronnie started having trouble eating and walking, and a scan confirmed that he was in progression. He underwent emergency brain surgery to put in a shunt to treat hydrocephalus. Within the span of one week in February, he lost the ability to walk, stand, and talk.  He completed 12 sessions of re-radiation at UCSF, and he also received immunotherapy, but these did little to restore his functions, as his tumor was still in progression.

With precious little time to spare, Manisha and Milan contacted the team in Monterrey to see if they’d accept Ronnie into their program. At first, they turned him down, so the family created a video showing Ronnie eating and playing, proving to the doctors that he had the fortitude to undergo this treatment.

He had his first IA treatment on May 12^th, and the tumor responded by showing a small reduction in size. After Ronnie’s second IA, he returned home to San Francisco for his middle school graduation, where he received an award from the principal recognizing his bravery, a page dedicated to him in the yearbook, and a standing ovation from the entire community for his achievements.Ronnie’s 5^th IA is scheduled for late July, after which they’ll go back home for a few weeks. In order to also receive the immunotherapy part of the treatment, Ronnie has to completely wean off of steroids. Manisha fears she may have moved too quickly when reducing his dose, as Ronnie lost the use of his right hand—one of the few things he could control—after coming off steroids. She weeps as she explains that even as she increased his dose again, he still can’t use that hand. The guilt she feels is suffocating.

Still, Ronnie and his family have found ways to continue doing the things he loves. He enjoys going to movies and restaurants, he can play board games with assistance, and he keeps up with politics and his favorite basketball team, the Golden State Warriors. Ronnie was ecstatic to get a personal video shout out from his idol Stephen Curry while undergoing treatment in Monterrey. Ronil and Sahil love to watch comedic Jus Reign YouTube videos together, which they can (hysterically) relate to as children of Indian parents. Ronil even inspired President Obama, who wrote him a personally signed letter from the White House where the president and first lady acknowledged his bravery and encouraged him to keep fighting.

Photographing Ronnie seated on the couch presented some challenges. Ronnie’s muscles are useless to hold him upright, so when he busted up laughing, he collapsed sideways on the cushions, which only made him laugh harder.

Ronnie’s ability to find humor where others might feel humiliation says everything you need to know about him. In the face of unimaginable pain, he chooses joy. You can’t help but feel happy just being around him. He wears his unwavering faith in the goodness of life on his sleeve, accepting his fate without resignation. Look at his smile and tuck it in your pocket. He’ll light up your life.Sadly, on September 1st, 2018–the first day of Childhood Cancer Awareness Month–Ronil passed away. Your legacy lives on in everyone you knew and touched, Ronnie.

To make a memorial donation:

https://www.gofundme.com/hope-for-ronil

 

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