Mykola, 18 months old, clutched her mother’s finger as she toddled into the hallways of the national children’s hospital in Kyiv, her unsteady legs eager to walk.
Mykola spent her entire short life in the hospital. His cancer was diagnosed born, just a month before Russian forces invaded Ukraine.
His mother, Anna Kolesnikova, said: “It’s like fighting two wars. “Two wars in your life: one is to save your child’s life, and the other is for your country.”
Across Ukraine, families with children with cancer are facing the double pain of the deadly disease and the country engulfed in war. For many, the Russian invasion has meant leaving their homes, fearing air strikes, and being separated from loved ones, including family members serving in the military.
But despite the new difficulties, the conflict has also contributed to the development of the Ukrainian pediatric oncology department, experts say, thanks to greater cooperation with international partners at this time of crisis.
However, for families like the Kolesnikovs, war only adds to their pain.
Mykola was born in Kherson in January 2022 with a malignant tumor that left his face and neck disfigured and left only one functioning eye. He was sent to Ohmatdyt Children’s Hospital in Kiev almost immediately for chemotherapy and surgery.
He and his mother spent weeks sheltering in the hospital’s basement so that Mykola could continue receiving treatment even when Kiev was attacked.
Their homeland in the Kherson region of southern Ukraine was soon captured by Russian forces and is still occupied. Ms. Kolesnikova, 32, has stayed in Kyiv with Mykola, while her husband, eldest son and her parents remain on the other side of the line in what seems like the other side of the world.
“I was separated from my family,” she said. “And I don’t stop worrying for the lives of my children, for the lives of my parents and my other son.”
She feared the worst when Nova Kakhovka Dam destroyed last month, flooding part of the Kherson region, but her family was unharmed.
At the beginning of the war, many children with cancer were hastily evacuated to other European countries, or further. Evacuations in collaboration with SAFER Ukraine cooperation with St. Jude Global, ensuring their treatment can continue uninterrupted.
“We have devoted a lot of attention to saving this large, vulnerable group of children,” said Dr. Roman Kizyma, a pediatric oncologist and acting director of the Western Ukraine Specialized Children’s Medical Center.
Since then, Ukraine’s approach to childhood cancer care has changed, said Dr. Kizyma, 39. Starting last summer, the focus was on building domestic capacity. While some children with complex needs are still being sent abroad, most are still in Ukraine.
With new synergies with international partners, growing links with European hospitals, new training opportunities and more local support specialists, Dr Kizyma said he hopes to see pediatric oncology consolidated in Ukraine.
“I think the levels are going up, and possibly even higher,” as a result of the war, he said, pointing to more specialized treatments at area hospitals since the war began.
Many childhood cancers are treatable, but the outlook depends on where the child is cared for. In the wealthiest countries, with greater access to treatments and medicines, more than 80% of children with cancer survive at least 5 years. According to the World Health Organization, in poor and middle-income countries, this rate can be as low as 30%.
Yulia Nogovitsyna, program director for Tabletochki, Ukraine’s leading pediatric cancer charity, say they estimate that about 60 percent of children in the country are successfully treated.
“There is still a gap between Ukraine and high-income countries, and you want to close this gap,” she said.
Tabletochki, funded by international donors including Choose Love, provides support such as housing, medication and psychological support to children with cancer and their families, as well as palliative care support, and purchases of equipment, medicine and training for healthcare workers.
Nogovitsyna said there were some signs of hope even in times of war, with an increase in overseas-trained cadets.
“Education and training can change more than just rehab and more than medication,” she said.
But there are also new challenges. The charity has long relied on crowdfunding donations, but has struggled to raise money in wartime Ukraine and is seeing higher levels of poverty in the families it supports.
And it no longer reaches children in Russian-occupied areas.
“This is the worst, because some kids, they’re in a palliative state and are going to die,” she says, and need morphine or other important pain relievers. “There, we can’t do this. So children just die in pain, and this is tragic.”
For some children, war also delays diagnosis and treatment.
Sasha Batanov, 12, was in a hospital in Kharkiv, bedridden with severe back pain, in February 2022 when the Russian invasion began and the hospital was evacuated. He was sent home and sheltered there for weeks.
His mother, Nataliia Batanova, said: “I’m trying to calm him down. “Though I realize something is going on.”
They still don’t know that Sasha has leukemia. If he could have stayed in the hospital, he would have been arrested sooner, his mother said.
It was July before the cancer was diagnosed and he was transferred to Kyiv for chemotherapy. Sasha also needed a bone marrow transplant this past April.
Currently, Sasha, his mother and brother are living in an apartment in Kiev while he continues his treatment. His father was a soldier, fighting in the east of the country, adding to their fears. But Miss Batanova has hope.
“We are so glad we have this life today, right now,” she said. “This is what this war and life have taught us.”
For children with cancer and their families, it can be a struggle to find even a small piece of normalcy as personal and national crises converge.
Viktoria and Serhiy Yamborko hope that a summer camp in the Carpathian Mountains of western Ukraine earlier this month will give them time to make happy memories with their 5-year-old daughter Varvara, who was diagnosed with cancer last year.
They go there with Tabletochki, which organizes camps for children and families to swim, hike and relax.
With palpable excitement, Varvara, wearing a small riding hat, was mounted on horseback to ride the trail, the pine forests stretching out into the valley below. Mr Yamborko, 50, took a video on his phone while Mrs Yamborko, 38, held her daughter’s arm.
“These restorative moments, though few, will keep you going,” said Mr. Yamborko, who said they also relied on their deep Orthodox faith to sustain them.
The family is of Kherson origin, but was in Kyiv at the start of the war and fled to relative safety in western Ukraine for several months. That’s when they noticed changes in Varvara, who had broken three bones in a short time and was becoming increasingly unwell.
Last summer, when they returned to Kiev, they received the diagnosis they feared.
“It feels like the end of the world,” Ms. Yamborko said, describing her difficulty in dealing with the news and fear for her family still living in Kherson. “I think that’s it.”
Varvara underwent months of aggressive chemotherapy and other treatments, and was released from the hospital this summer. She continued to receive outpatient care, but her energy and strong spirit returned, her parents said.
With a mauve baseball cap covering her short hair that has begun to grow back, Varvara excitedly says her favorite part of camp is spending time with the other kids.
“It’s great to be around other parents, you don’t have to explain everything,” Ms Yamborko said. “Here, we understand each other without words.”
Even for children in remission, like Anna Viunikova, war complicates ongoing care. Anna, 10, had a bone marrow transplant and chemotherapy for pre-war leukemia, and her dark brown hair has grown back.
But the war disrupted her family’s efforts to resume a normal life. The Russians occupied their village in the Kherson region. Her mother feared for their safety and the possibility that Anna wouldn’t be able to get regular checkups, so last summer, Anna and her parents fled to Kyiv.
“I want everything to be fine,” Anna said. “So that I can just sit and eat watermelon. To be able to walk and bike like before. But it won’t be the same as it is.”
Oleksandr Chubko And Daria Mitiuk contribution report.
