"A neuroblastoma? I had never heard of it. Unfortunately, I was familiar with cancer, because a few months before Kimaya's diagnosis, we buried my mother's sister. My world collapsed. The scenario with my aunt came rushing back," says mother Kathleen.
In the summer of 2023, Kimaya had persistent fever and stomach pain. A substitute GP thought it was an ear infection. But since she wasn't getting better and her belly began to swell, her parents decided to visit the emergency department at Amsterdam UMC a few days later. Blood was taken, and an X-ray was done. That same night, the results came in.
‘We suspect childhood cancer’
The next morning, Kimaya and her mother were brought to the Princess Máxima Center by ambulance. Her father, brother (19), and sister (16) followed shortly after. Kimaya was weak and barely conscious, but she still remembers it well.
Kathleen says, ‘We had to stay for two weeks right away. There were various tests, scans, and Kimaya got a central line, among other things. It was overwhelming. During that time, I found enormous support from all the staff at the Máxima Center. From doctors to cleaners, everyone gives you a sense of understanding, and no one asks too many questions. We also connected with two other parents of children with neuroblastoma. We regularly text to check in on each other. It’s comforting to share worries and understanding. And no one looks at you strangely if you suddenly walk out with tears in your eyes.’
Setbacks
In August, after months of chemotherapy, a stem cell transplant, radiation, surgery, and immunotherapy, an important scan was scheduled. But shortly before, Kimaya was admitted with an intestinal ileus: a blockage in her intestines. She underwent bowel surgery to remove part of the intestine.
Kathleen shares, "But that wasn't all. On the day of the MRI scan, we were actually supposed to be discharged. But Kimaya got sick. She vomited during the MRI, which led the doctors to realize her intestines hadn’t healed yet. She had to undergo surgery again. Things seemed to go well for a while, but after a few weeks, things went wrong again. Altogether, we've been here continuously for almost nine weeks now. In the eighth week, we were able to visit the Miffy Museum for a few hours.
In the meantime, the scan results came back. Thankfully, no new spots were found, and the remaining tumor had slightly shrunk. However, because Kimaya was having so many issues with her intestines, immunotherapy was paused. Now, we’re waiting for the next scan in November. We’re hoping no new spots have appeared and that we can resume the oncological treatment."
A girl with spirit
‘Despite all the setbacks, Kimaya recovers quickly. When she doesn’t feel well, she gets grumpy. But when she’s feeling good, she walks around the hall with her iPad, chatting with everyone. I draw so much strength, hope, and energy from the way Kimaya handles everything. She’s so energetic, cheerful, and brave. I have so much admiration for her. At her birth, I was already told that she was a girl with spirit. And now it turns out she really needs that spirit,’ Kathleen shares.
Kathleen hopes her daughter can soon start tube feeding again. Because if that goes well, and the results of the new scan are positive, they may be able to go home. That’s something Kimaya longs for too. ‘When are we going home, mommy?’ she asks. ‘When all the 'lines' are off, and you're feeling a bit better,’ I explain to her.
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