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DBIS student to undergo second brain surgery in US

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The DB community is sending well wishes to DBIS student JP Castillo this month, as he prepares to undergo brain surgery at John Hopkins University Hospital in Maryland, USA.

A popular student, 12-year-old JP and his family – father, Ed, mother Diana, and sisters Ashley and Maryah moved to Hong Kong in 2015 and settled quickly into life in DB.

However, things changed suddenly in early 2017 when the Castillo family found out that JP had a brain tumour, blocking his carotid arteries and optic nerve.

Due to the extent of the mass, doctors could only guarantee removing around 70% of it through surgery, the majority of which would be carried out by students at the teaching hospital that JP was admitted to.

“As soon as JP’s neurosurgeon said that, I instantly thought no, my son cannot be an experiment,” says Diana. “Yes, I want students to learn from my son’s case, but I can’t risk my son’s life for something this extreme. At that point, Ed and I just felt so helpless. We didn’t know what we could do,” she recalls.

Diana reached out to a friend at John Hopkins in the US, and within half a day found out that JP had been accepted as a patient.

“This gave us so much hope because we knew how amazing John Hopkins is,” she continues. “But financially it was a lot of stress for us, because we no longer had insurance in the US. But Ed and I knew that we had to do whatever it took for our son.”

JP Castillo

Within two weeks, the Castillo family flew to Maryland and surgery was scheduled for JP. However, very soon after arriving, the doctors realised the severity of the tumour and cancelled surgery saying it was too dangerous. Instead, they advised JP to undergo treatment in hopes of reducing the size of the mass to make it operable.

For six months, JP and Diana traveled back and forth from Hong Kong to Maryland, with JP receiving treatment every 23 days. Six months later, the tumour was still the same size and the team at John Hopkins decided to carry out the original surgery.

“It was a crazy, massive surgery with a team of over 15 people. It was so overwhelming,” Diana shares.

Fortunately, the surgery was very successful and the John Hopkins team managed to get rid of the entire mass in a procedure that lasted almost 11 hours.

“We were beyond relieved when the doctors told us that they believed that JP was now cured,” says Diana. “It was the best news ever. They saw nothing left, and they told us there may have been a possibility of leftover cells but chances of this were very slim.”

Following the surgery, the Castillo family returned to Hong Kong, and in January of this year travelled back to John Hopkins for a post-surgery check-up. Unfortunately, the check-up revealed that the tumour was back, along with other masses deep in the brain.

“I’m terrified, obviously,” says Diana. “As a mom, the last thing you’d want to see is your child going through something like this. But I do my best to set my mind to be positive, to have faith and prayer. We really don’t know what’s going to happen, but we’re hoping for the best. I have faith that JP is going to get out of this.”

JP will be undergoing surgery later this month at John Hopkins.

Diana says that she and her family have been overwhelmed with support from the community. “This is a continuous journey – not just my journey, not just our family’s journey but also the community’s journey. It makes me so emotional to think of how our amazing DB community has come together in a time like this, offering support – not just financially, but through love and encouragement. Just wow.”

The Crayon Run 2018

One way in which the DB community stepped up to support JP recently was at May’s The Crayon Run, organised by Crystal Lee-Passarello, when JP was honoured as one of the beneficiaries.

Diana explains: “I was at a get-together one evening when Dana, a local DBer – who I became fast friends with – asked about JP’s story. It was a casual conversation and I thought nothing of it but a couple of days later, she contacted me asking if she could share my story to Crystal. It was in March when I received a phone call from Crystal about supporting JP through her event. I told her, ‘But you don’t know me!’. For someone like Crystal to reach out and support my son, that just goes to show that there are people out there who are so full of love. There are a lot of people going through a lot of problems. People don’t choose problems for free, but they chose to be there to help me and my family – we are beyond blessed.”

The Crayon Run, along with Diana’s church family and DBIS community, raised around HK$48,000 for JP, with the proceeds going towards his upcoming medical treatment.

Diana also credits DBIS for the incredible support the school has shown the family in this time of need. Not only has the school been amazing in terms of academic support, but it has also provided financial and mental support, including counselling for Diana and her kids.

“DBIS is one of the best workplaces you can find,” she says. “I feel like I’m not working for a company, but a family. The school has been so supportive to me as a person, as an employee, as a mom, as a friend and as a community member. Teachers are always asking JP how they can help. Friends support him and treat him like any other kid. He feels supported.”

When asked how the DB community can help the Castillo family, Diana says to just share a smile, as that in itself keeps her family going during difficult times.

Photo courtesy of Diana Castillo and Evoque Portraits by Baljit Gidwani

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