The War in Darkness
Splayed out on a pink bedspread, wearing a pink tank top and surrounded by stuffed pink unicorns, 6-year-old Sonya Liakh unscrewed the port to the catheter in her chest. She took a pre-filled syringe of morphine from the tray held by the nurse beside her, deftly inserted the syringe into her port, and pushed the contents into her jugular vein.
Her medication was one of the few things Sonya could still control. Russia’s invasion had uprooted her life, as it had so many lives in Ukraine. It had killed her father at the front line and dealt a debilitating blow to her health, delaying her chemotherapy and allowing a rare form of cancer to rob her of her vision and ravage her body.
And so, this past spring, as the cancer spread from her eyes to the rest of her head and then to her back, mouth and neck — and as the subtle lumps grew more pronounced — Sonya insisted on injecting herself.
The daunting health challenges facing sick and disabled children in Ukraine are a cruel reminder that the war’s tentacles stretch far beyond the front line. They have suffered from misdiagnoses, lapses in treatment, a lack of access to specialized food and physical therapy, displacement and the unrelenting stress of war.
Frequent power outages have endangered those dependent on oxygen and other machines requiring electricity.
In the face of these obstacles, families with sick and disabled children are carving out their own paths for survival in hospitals, orphanages and private homes, often with the help of humanitarian groups.
Organizations like Tabletochki and BlueCheck Ukraine are supporting children with cancer, autism, cerebral palsy and a range of physical and psychological needs.
Living with her family in the Kirovohrad region of central Ukraine, Sonya had been diagnosed in October 2020 with retinoblastoma, a rare eye cancer that affects children. She was 2 years old. According to the American Cancer Society, more than nine in 10 children with retinoblastoma are cured — especially if the cancer is treated before it spreads beyond the eye.
Almost immediately, Sonya underwent surgery in Odesa to remove the tumor, losing her left eye.
Her illness came at a challenging time. Months before, Sonya’s father had abandoned the family after bouts of infidelity. With little money, Sonya’s mother, Natalia Kryvolapchuk, was facing looming eviction while taking care of a sick toddler, her 3-year-old sister and an infant son.
Over the next 16 months, Sonya completed more than a dozen courses of chemotherapy and 25 sessions of radiation. At first she was traveling to Odesa for treatment but then Natalia learned about a shelter called Misto Dobra, “The City of Goodness.” She submitted Sonya’s diagnosis, and applied for free room and board and child care for herself and her three children.
They moved there in June 2021 and Sonya shifted her treatment to the Ohmatdyt Children’s Hospital in Kyiv, the most renowned pediatric cancer center in Ukraine.
The War Intervenes
Misto Dobra is tucked away in Chernivtsi, a city near the Romanian border in southwestern Ukraine. It is far from the fighting, but the war is present in the psychological and physical trauma of its inhabitants: orphans, displaced civilians, survivors of domestic violence, and children with terminal illnesses or serious disabilities.
Some 250 women and children live in six buildings across the campus. The shelter’s founder, Marta Levchenko, fosters a community of doctors, nurses and caregivers who operate with respect, kindness and patience. Air raid sirens are few; there are no apparent military bases near the town, making it less of a target.
On Feb. 24, 2022, Sonya and her mother, Natalia, were preparing to travel from Misto Dobra to Kyiv for another round of chemotherapy when Russia launched its full-scale invasion. The roads surrounding the capital were unsafe, and the hospital redirected most staff to treat war wounded.
Sonya’s chemotherapy was canceled, and she and her mother were sent to Poland along with other children receiving treatment at Ohmatdyt. Her brother and sister remained with a caregiver at the shelter.
The war’s intervention proved damaging. In Warsaw, doctors conducted a fresh series of tests, which took time. Sonya received no actual treatment for more than two months.
Frustrated, Natalia brought Sonya back to Ukraine with the hope of continuing her treatment.
By that time, the capital was safe again, and Natalia and Sonya resumed trips to Ohmatdyt. Sonya’s headaches increased, as did a pressure behind her eye. In July, five months after Sonya’s originally scheduled treatment, an M.R.I. revealed a new tumor beyond the socket of her right eye.
Natalia believes those months were fateful for Sonya. The gap in treatment “took away the time during which we could have saved her,” she said.
Doctors removed Sonya’s right eye that August, leaving her totally blind. The surgery was followed by more radiation. Eventually, she fell into remission until March 2024. I met her three months later.
‘Mom, I Have a Lump’
At Misto Dobra, Sonya learned to navigate her blindness under the watch of her mother and the guidance of her big sister, Valeria. On brick walkways through gardens lined with rose bushes, she learned to walk again without hesitation, to ride a bike, to draw, and to swing and play in the playground.
She loved to bask in the sunlight, and if it happened to be followed by rain, she would shout, “Rainbow, rainbow!” even though she lived in darkness. She formed a bond with Olha Ivasiuk, an artist and photographer in her mid-twenties who taught art classes to the orphans and took photographs for Misto Dobra. When Olha gave her a digital camera, Sonya began taking pictures, and proclaimed she wanted to be a photographer.
“She loved doing everything by herself,” Olha said. “She ate by herself, bathed herself, dressed herself, and painted by herself. Just a very independent child.”
One morning in March, more than a year into remission, Sonya emerged from a nap and said, “Mom, I have a lump on my head.” Sonya tilted her head, and Natalia could see a bump the size of a quail’s egg.
They immediately returned to Ohmatdyt, where Sonya underwent another operation to remove the new tumor. A month later, a CT scan revealed two new lumps, and deterioration of bone in the back of her skull. The prognosis was not good.
Doctors spoke in terms of days — not weeks or months.
As they were leaving the hospital in Kyiv that day, Sonya, sensing her mother’s anxiety, said, “Mom, I want to live.”
Natalia didn’t know how to respond.
When doctors warned that further chemotherapy was unlikely to help, Natalia acquiesced. She wanted Sonya to live out her final time with the best possible quality of life, without the nausea, weakness and exhaustion that chemotherapy would bring.
Natalia and Marta, Misto Dobra’s founder, decided to throw a party for Sonya’s 6th birthday in May, in case she didn’t survive until her real birthday on July 7.
In the summer months, Natalia allowed Liubov Sholudko, my Ukrainian translator, and me to observe and photograph the family’s battle against Sonya’s disease, saying that it was important for the world to understand the war’s impact on Ukraine’s children.
Sonya was charismatic, mischievous and playful with us, occasionally asking to hold my camera and take photographs with it (despite her blindness), and often embracing Liubov.
Tumors behind Sonya’s ears grew more pronounced. Lumps emerged on her shoulder, her lower back, her neck and inside her mouth, causing excruciating pain throughout her increasingly skeletal body, especially those that grew into her jaw and teeth, forcing her mouth slightly agape.
Her strolls around the shelter’s grounds became less frequent. Soon she was moved to the hospice section.
Misto Dobra’s chief doctor, Denys Koliubakin, 47, worked hard to strike a balance: keep the pain to a minimum without extinguishing “the light in Sonya’s eyes.” But by late July, Sonya’s infectious love of life was dulled by a low-dose fentanyl patch, combined with more frequent and increased doses of morphine, acetaminophen and a cocktail of other muscle relaxers and anti-anxiety pills, among others.
Her hemoglobin level dropped more rapidly in the two weeks between blood transfusions, and Sonya and Natalia soon ended up at the Chernivtsi pediatric hospital for transfusions every week, then every five days and finally every three days.
On Aug. 5, while heavily sedated, Sonya looked up at Natalia and said, “Mom, I want an airplane to fly to the angels.”
“For what?” Natalia asked.
“To bring other angels down to earth.”
On the evening of Aug. 20, while in the hospital for a transfusion, Sonya took a syringe filled with painkiller from the nurse and inserted it into the chest catheter. For the first time, she no longer had the strength to empty its contents. She died a few hours later.
A Farewell in Pink
The announcement for Sonya’s funeral instructed everyone to wear pink, not black. Giant helium-filled unicorns and pink and white balloons populated the church around Sonya’s small white coffin, her swollen face and bruised eye surrounded by a pink veil and various shades of pink and white baby’s breath.
Members of the Misto Dobra community gathered around her open coffin, as Natalia and Marta sat on either side. Olha, the photographer, played on her phone an audio version of a fairy tale written about Sonya by Yulia Podkydysheva, one of the shelter’s employees.
After so many bright adventures we’ve had together, after so many beautiful paintings and photos I’ve given you, after so many wonderful moments, didn’t you feel that the most important things cannot be seen with the eyes? Only with the heart, only.
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