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The tallest boy in Hong Kong: JP Castillo’s story

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At the end of last year, as he bid a fond farewell to Discovery Bay, JP Castillo sat down with Lori C. Tighe to tell his story in his own words. Having come through two major brain surgeries in as many years and still undergoing biotherapy, he talks about DB life – basketball, fighting in the school corridors and his first girl crush.

JP Castillo is not your typical 13-year-old. He has gigantism, which has caused him to grow nearly 2 metres tall. He also has a Darth Vader-like brain tumour that has tried to kill him for the past two years.

So you’ll forgive JP, short for John Paul, when he grins and recalls how he and his best friend began a shoving and wrestling match at the Discovery Bay International School (DBIS) lockers last year. It was over nothing, they were both tired. But it made JP feel like a normal guy, whose friend briefly forgot about his height and brain tumour.

“Yeah, we both got in trouble,” says JP. “We had to clean our science teacher’s classroom as punishment. I regretted what I did. He’s the first good friend I’ve had since Tony Gordon in Year 5.”

JP is living as much of a typical 13-year-old’s life as possible, after surviving his second successful brain surgery in the US last summer. He likes a girl. He got called up to play with the U16s basketball league. And he enjoyed his 13th birthday party with his friends and father, Ed – they went to see a Jack Black movie. But on one thing, JP is serious. When he talks about protecting his two adorable sisters, Maryah, 12, and Ashley, 11, he says in a bigbrother way, “No one’s going to hurt my sisters.”

Moving to Alaska

In December, the Castillo family, who moved from Miami to Discovery Bay in 2015, bid a fond farewell to a legion of friends at Cathay Pacific, DBIS, the Crayon Run charity and the Vine Church in Wanchai. They, and seemingly the entire DB community, have cheered on and raised money for JP through two major brain surgeries, and monthly backand-forth travel to the US for gruelling chemotherapy.

The Castillos are resettling in Anchorage, Alaska, the coldest US state, to be closer to Johns Hopkins University Hospital in Baltimore, Maryland, where JP continues his biotherapy treatment to keep his brain tumour from growing. “I’m a little worried about the cold. But I’m loving the skiing part,” he says with a grin.

Ed, a Cathay Pacific cargo pilot, could only transfer to Miami or Alaska, the two Cathay bases in the US. The Alaska office offered Ed the position.

“It will be a huge adjustment,” says JP’s mother, Diana Calnan, an educational assistant at DBIS kindergarten. “We will miss our Discovery Bay friends so much. They’ve become like family to us. But this move will help JP – and we are up for the adventure.”

The family look forward to having more house for their money, stunning wide-open nature vistas, and seeing reindeer occasionally stroll down the street. As for the sub-zero temperatures and the long dark winters, they’re staying positive. They have learnt life is full of surprises.

Battling the odds

JP’s journey started when he began rapidly growing at age 6, but his doctor said he was fine. Then JP broke three bones in one summer. “That’s when we knew something was wrong,” Diana says. At age 9, JP went from a size 9 shoe to an 11. His hands grew twice the size of Diana’s hands. “Have you heard of the giants in fairy tales and The Guinness Book of World Records?” says Diana. “He grew so fast, that’s what it was like.”

After settling into Discovery Bay, JP’s parents began researching his accelerated growth online. Ed read that it could be an endocrine problem caused by tumours. But they both thought, ‘No, no, he’s healthy.’ They went to Queen Mary Hospital in Pokfulam in early 2017 where an endocrinologist found JP’s brain tumour, the size of a golf-ball around his pituitary gland. An American friend working at Johns Hopkins, known for treating children with rare disorders, told Ed and Diana to take JP there. After they bought health insurance through Obamacare for JP, a team of 15 doctors removed his entire tumour in a 12-hour surgery in 2017.

“I thank God for the Obamacare,” Diana says. “JP’s surgeries were in the hundreds of thousands of dollars. We never could have afforded that.”

Numerous flights followed between Hong Kong and Maryland for his monthly chemo infusions. Then the tumour returned with a vengeance. JP had his second major brain surgery last summer – after a lengthy disagreement between the health insurance adjusters and Johns Hopkins administrators. But the surgeons performed another successful surgery on JP, once again removing the entire tumour entwined in his brain. The doctors told the Castillos they would not perform brain surgery on JP in the future, since ongoing biotherapy would keep the tumour from growing.

“I was kind of nervous about when I would wake up from the eighthour surgery,” JP says. “With the second surgery, I had to stay in the hospital longer, my sodium levels were really high. I peed six times a day, which dehydrated me. They wouldn’t release me. I stayed a week. When they took my catheters out from my taped hands, when they emptied the urine, I would pray with my mom. That was hard.

“Now I get monthly injections” JP explains. “My mom gives me a shot in the butt every 28 days. I feel fine. The next day I get side effects – stomach ache, vomiting. I feel the effects for about a week.” Diana says she feels sick herself seeing JP experience this. The biotherapy shots, called Somatuline Depot, suppress JP’s tumour cells and may help control his growth hormones. It’s used when surgery or radiotherapy haven’t worked. “If it keeps JP alive,” Diana says, “It’s worth it.”

JP crawling under a bridge made by his DBIS classmates’ hands – symbolising he’s not alone in what he’s going through.

Living life to the fullest

Looking on the bright side, JP says his height offers some benefits. “If I didn’t have gigantism, I wouldn’t get as much attention. Everyone wants to be noticed and appreciated and it feels good.” He admits, smiling, “It helps out in basketball, too.”

JP’s the Center and he recalls the day his basketball coach asked him to play in the higher age level. “I played a good game in November in the U14s. Then my coach asked me to play for the U16s with the Year 10s and Year 11s. It’s cool to be asked to play for a higher group, it will challenge me more. The rules are more aggressive when you get older.”

JP practises basketball daily and dreams of playing professionally one day. “I got a passion for it,” he says. “It encourages me to play and love it more. It’s a really fast sport, that’s what I like about it. Although not as many people play basketball in Hong Kong, it’s at a pretty good level.”

JP wants to meet his favourite basketball player, Steph Curry, of the Golden State Warriors in Oakland, California. So he applied to the Make-A-Wish Foundation in Pennsylvania, where his mother used to live, after his first 12- hour brain surgery in 2017. But the Make-A-Wish branch said regrettably they couldn’t grant his wish because he lived in Hong Kong. If JP applies again to a second Make-A-Wish in a different state, his name will be removed from the national foundation’s list and he will be blackballed.

JP is in awe of Curry, famous for his 3-point shooting. “I practise every day to shoot like that,” he says. “I want to meet him and play a game with him. I don’t know if it will ever happen, but my mom says to stay positive.”

JP says his mom is the biggest influence in his life about the power of positive thinking.

If the basketball career doesn’t materialise, JP wants to be a flight engineer pilot, like Ed, who grew up in Miami. “My dad bought a flight simulator game when he was 13 and played it ever since. As a teen, he worked at the airport as a janitor to earn money for college,” JP says with admiration. “He studied and worked hard, and then he got to fly his own plane as a pilot.”

When JP talks about his first crush on a girl, someone he met in Year 6 at DBIS, he smiles. “There is a girl,” he says, “away from school we hold hands. I’m not sure if she likes me, she is shy. Her friends made me guess who in their group liked me. I guessed her. Sometimes when her friends talk to me about her, they start laughing. She likes me, they say. Her friends get all weirded out.” He grins and shakes his head.

The girl JP likes came to his birthday party on October 21, when he turned 13. “We saw The House with a Clock in its Walls. It was really good, about witches and warlocks, and one killed himself in a fortress. He put a clock in the wall that would reset time to the beginning. The nephew’s uncle was a warlock. He had trouble making friends at school. He told his friends he could do magic, and one day he would prove it,” says JP, recounting his birthday treat with excitement. “It was great.”

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