If “pink” could name someone’s personality, surely it would be Kaleigh’s. With her sights set on someday becoming a princess, Kaleigh gets in lots of practice for her future position. She’s straightforward, yet gracious; determined, but considerate.
Before completing our introductions, Kaleigh quickly corrected how we pronounced her name. “My name’s Kaleigh like Sally, not KAYleigh!” Glad we cleared that up right away! She invited us into the apartment, all smiles as she and Lily fell into an easy friendship founded in a shared birthday, similar allergies, and love of board games and sushi.
Her father tells a story of when a family friend bought Kaleigh some coconut milk yogurt. When her auntie asked Kaleigh how she liked it, she said that she did. Later when grocery shopping, her dad asked her if she’d like some more, but Kaleigh declined. He asked her why, and Kaleigh explained she’d said that in front of auntie so as not to hurt her feelings, as she knew auntie had spent a lot of time looking for something she could eat.
Apart from an inturned eye, Kaleigh appears completely healthy and vital. But not too long ago, her tumor was in progression.
In April of 2016, Kaleigh seemed to have a cold or flu, but when she developed double vision, her parents Scott and Yang took her to London Moorfield Eye Hospital, where they confirmed that her eyes were healthy. They transferred her to the Royal London Hospital for follow-up, where she underwent a CT Scan. Immediately after, the hospital dispatched the MRI team to come in for a scan that same day. The next day, the family relaxed a bit as the team told them not to worry and that they’d explain the treatment plan in a couple days. When Tuesday came, though, the news was not what they ever expected to hear, and their “world started to cave in and turned upside down.”
The doctors told them that Kaleigh had DIPG. Scott asked, “When do you operate?” to which they responded they couldn’t; radiotherapy was the only recommended treatment. Once the doctors left the room, Scott and Yang combed the internet for information, and the statistics they came across were unimaginable: no one survives this tumor. Even as Kaleigh sat there looking well, the doctors informed them she had about 9 months left to live.
Her parents told Kaleigh she has a little lump in her head and they’re trying very hard to remove it. “She is only a child and doesn’t need to know about the severity of the illness,” Scott explains.
Kaleigh started radiotherapy on April 25th, 2016. She completed 30 sessions, followed by a long 7-month “honeymoon” period, after which her double vision returned. She underwent 10 more radiotherapy sessions starting in January of 2017, but her vision problems persisted, and some new symptoms started: her left hand got weaker, she began to stutter, her walking became unbalanced, and she developed regular headaches.
Scott and Yang discovered Monterrey at the end of March, two weeks after Kaleigh had been turned down for CED treatment for a second time at the Harley Street Clinic in London. Scott, Yang, Kaleigh, and younger brother Carson packed what they could and hopped on a flight to Mexico on April 18th.
Kaleigh had her 5th IA and her 4th immunotherapy on July 3rd, after which they returned to London for a few weeks. Scott champions the treatment, crediting it for saving Kaleigh’s life, giving her back her personality, and helping her return to doing the things she loves, like the monkey bars. It’s not surprising that others have followed his lead and he’s become the Monterrey “cheerleader,” answering parents’ questions and helping connect families with local resources.
Scott’s upbeat attitude is completely catching—he lives by his belief that happiness is the best medicine, which is why he insisted the whole family go to Mexico for Kaleigh’s treatments. His company has fortunately shown incredible support, allowing them to be together while Scott takes time off of work and Kaleigh continues to respond positively to this potentially life-saving therapy.
Between doctor’s appointments, blood draws, and treatments, they aim to enjoy their time there as if on holiday. They meet up with other families for swimming and to share meals, and Scott arranged for the families to attend the local Kidzania and Safari park at discounted price. This gives the families precious opportunity to connect with each other and fill up on encouragement that only people going through the same heartache can offer.
It’s no wonder Kaleigh’s faring so well. Armed with the enduring love of her family and a tenacity that belies her size, she’s taking DIPG by storm. Go forth in love and beat this beast, Princess Kaleigh. Your kingdom of loyal supporters is behind you every step of the way.
Princess Kaleigh gained her angel wings on June 12th, 2018. Her devoted family and countless friends she made during her lifetime are dedicated to finding a cure for DIPG in her honor.
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