The sun blazed red bouncing off the apartment walls to wake us on our second day in Monterrey. We got lost (again) on the way to Annabelle’s apartment, continuing our tour of the city’s back streets.
Annabelle’s mom Sandy met us outside the building and showed us in. Annabelle zipped around the apartment, silently showing off her favorite toys. She arranged her crayons carefully on the floor, not one to have anything out of its place. But impulsivity overcame her desire for precision at times, like when she hastily colored to discover a hidden picture—a reminder that this little whirlwind is only 4 years old.
Annabelle appears like any other girl her age; you’d never even know she had DIPG from looking at her. Having her outward appearance remain untouched might give her parents a measure of calm. At the same time, they live with the knowledge of what can’t be seen on her face—watching, waiting for any small change that could mean her tumor is progressing. “I live every day thinking: What’s going to happen tomorrow?” Sandy says.
Annabelle was diagnosed with DIPG less than a month before her 3rd birthday. Her parents noticed that she was walking differently, wobbling from side-to-side and leaning forward. She also initiated a new bedtime routine of screaming and rubbing her eyes uncontrollably.
They were living in Vietnam at the time, and Annabelle’s first MRI was inconclusive, so they flew to Australia for an emergency follow up scan, which showed a tumor in her brainstem. The medical care in Australia was par for the course for DIPG treatment: radiation, and wait for the inevitable. Annabelle completed 30 rounds of radiation, and then the family returned to Vietnam, where Annabelle’s father Trung took a job with the family business.
Unlike her peers, Annabelle hasn’t started school, leaving her feeling left out and mom ashamed to admit she’s envious of the parents who proudly show off their children’s kindergarten photos.
While living in Vietnam, Annabelle was treated using acupuncture, Chinese medicine, and qigong. She’d been faring quite well, until a routine scan in May showed that Annabelle was in progression. At this point, Sandy and Trung sought out other options.
They learned about Mexico the way a lot of other families have—through social media. After selling most of their belongings to afford the first treatments, Sandy brought Annabelle to Monterrey, leaving Trung and Annabelle’s 2-year-old sister Alyssa behind. They arrived in Mexico on May 22nd, and Annabelle had had two IA treatments and one immunotherapy at the time we visited with them.
It’s hard to look at this vital child and imagine her undergoing treatment for brain cancer, but that is her normal—the everyday fear of blood draws and anesthesia masks and waking up confused and in pain. These experiences spanning half of her life have imprinted on Annabelle’s mind, coalescing to form her childhood.
It’s also her parents’ normal—an unremitting trauma that cuts again every time she stumbles or slurs a word when sleepy.
Though Annabelle’s tumor has only shrunk by a small percentage since starting treatment, it shows less contrast, meaning that the cancer cells aren’t as active. This might not seem like a big deal, but this tumor grows aggressively, sometimes killing children in a matter of days to months after diagnosis. So anything that helps slow it down, makes it less active, and shrinks it even minimally is cause for celebration.
But living away from the rest of her family is hard, both on mom and Annabelle. Sandy’s nervous to let Annabelle out of her sight without Trung around, which makes even taking a shower a nerve wracking event, and Annabelle misses her little sister sorely. Truly, half of their hearts are missing.
Besides living with headaches and having an occasional bloody nose, Annabelle doesn’t know she’s sick, though Alyssa seemed to pick up on the seriousness of the situation without being told. Once quick to engage in a battle over a toy, Sandy says that Annabelle’s younger sister now lets Annabelle have her way, and she’ll rub Annabelle’s head when it hurts.
DIPG: The thief that robs children of their lives and siblings of their innocence.
But thanks to the treatment she’s receiving, Annabelle is still a mighty force, with big aspirations of becoming a Super Power Girl. Despite the sweltering Monterrey heat, Annabelle sprinted circles around us for hours, only asking once or twice to be carried. No longer shy, she laid her chubby hand in Lily’s, played that her squishy toy was alive, and infected us with her bubbly laughter.
While being photographed, Annabelle sometimes bolted from the lens, or covered it, depending on its proximity. While these things might frustrate the parent of a healthy child, a cancer mom takes comfort in (and is grateful for) the ordinary, sometimes annoying moments of childhood. They mean she has fight left in her.
Annabelle gained her angel wings on August 8th, 2018. Never has a child fought harder or been loved more.
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