By Mallory, a Children's National parent
When Mackenzie failed a routine hearing screening in kindergarten, we didn’t think too much of it—maybe she’d just need a hearing aid. But an MRI at age 8 to look further into her hearing problems revealed a mass in her brain. The radiologist sat us down and showed us the scan. We felt like the rug was pulled out from under us. Mackenzie was at summer camp, blissfully unaware.
The next few weeks were a whirlwind. Mackenzie had immediate surgery to drain some fluid in her brain. We then met with experts at Children’s National Hospital to learn the full scope of her diagnosis: three inoperable low-grade gliomas on her brainstem and nodules down her spine. A biopsy from her spine meant three days lying flat, a challenge for our spunky girl! The care team was with us through it all, helping us make it through each day.
Mackenzie’s now part of a clinical trial for treatment that will last over a year. This means weekly hospital visits for vitals and a one-minute chemo-blast infusion. Amazingly, she has no major side effects, and no symptoms beyond some hearing loss. Her 26-week scan showed the tumors were stable. If they grow, we know the damage could be irreversible.
We’re on the placebo, or standard-of-care arm, of the trial. This journey is about more than us, though. If we can help find better treatments for future kids, it’s worth it. Seventy weeks feels long, but the Children’s National team makes it easier. They know us, remember small details and make us feel at home.
Mackenzie remains a light. She loves hospital days—filled with fun, like art therapy, her favorite candy (Jolly Ranchers) and familiar faces. If you ask her what she wishes for, she won’t say for her brain tumor to go away. Instead, she asks for more time with her nurses, child life specialists and others who make her feel special. Her journey has been heavy, but she’s met people along the way who lift her heart.
Mackenzie’s positivity is contagious. She often reassures other kids when we’re in the hospital. She once helped calm a nervous boy about to get a port, telling him, “You’ll get used to it. It’s not that bad.”
She doesn’t look like a child in cancer treatment, with a full head of hair and endless energy. This makes it harder for friends and family, particularly her little brother, to understand and remember she’s sick. She’s learning to share her feelings, and we’re growing as a family, learning how to support her.
Mackenzie wants to be an astronaut or veterinarian when she grows up. She is still a child with big dreams—and though this journey is part of her, it doesn’t define her.
Children’s National has given her a sense of belonging and confidence. She wants to spread those feelings wherever she goes. This experience has been hard. It feels unfair. But Mackenzie leads the way, showing us how to find joy even in the hardest moments. She is our new normal, and she is extraordinary.
The next few weeks were a whirlwind. Mackenzie had immediate surgery to drain some fluid in her brain. We then met with experts at Children’s National Hospital to learn the full scope of her diagnosis: three inoperable low-grade gliomas on her brainstem and nodules down her spine. A biopsy from her spine meant three days lying flat, a challenge for our spunky girl! The care team was with us through it all, helping us make it through each day.
Mackenzie’s now part of a clinical trial for treatment that will last over a year. This means weekly hospital visits for vitals and a one-minute chemo-blast infusion. Amazingly, she has no major side effects, and no symptoms beyond some hearing loss. Her 26-week scan showed the tumors were stable. If they grow, we know the damage could be irreversible.
We’re on the placebo, or standard-of-care arm, of the trial. This journey is about more than us, though. If we can help find better treatments for future kids, it’s worth it. Seventy weeks feels long, but the Children’s National team makes it easier. They know us, remember small details and make us feel at home.
Mackenzie remains a light. She loves hospital days—filled with fun, like art therapy, her favorite candy (Jolly Ranchers) and familiar faces. If you ask her what she wishes for, she won’t say for her brain tumor to go away. Instead, she asks for more time with her nurses, child life specialists and others who make her feel special. Her journey has been heavy, but she’s met people along the way who lift her heart.
Mackenzie’s positivity is contagious. She often reassures other kids when we’re in the hospital. She once helped calm a nervous boy about to get a port, telling him, “You’ll get used to it. It’s not that bad.”
She doesn’t look like a child in cancer treatment, with a full head of hair and endless energy. This makes it harder for friends and family, particularly her little brother, to understand and remember she’s sick. She’s learning to share her feelings, and we’re growing as a family, learning how to support her.
Mackenzie wants to be an astronaut or veterinarian when she grows up. She is still a child with big dreams—and though this journey is part of her, it doesn’t define her.
Children’s National has given her a sense of belonging and confidence. She wants to spread those feelings wherever she goes. This experience has been hard. It feels unfair. But Mackenzie leads the way, showing us how to find joy even in the hardest moments. She is our new normal, and she is extraordinary.
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