Children of war. Life of cancer patients children with disabilities in Ukraine

While the war continues, children-disabilities are fighting on two fronts. The enemy also is oncology.

— War has a direct impact. Logistics and access to primary care has been disrupted.

The patient is not immediately admitted to a specialized center. At the first, s/he reach out to the family doctor. Or - to a pediatrician who sees the changes and directs the patient. If the zone was under occupation, later de-occupied - there are mines, bombed-out bridges, ets. Therefore the access is broken.

Accordingly, the patient may not reach out to the doctor, or reach out in late stages, where the effectiveness of the treatment is less. There are reference laboratories for the diagnosis of oncological diseases. It was impossible to transfer the biological material to the laboratory. There was no connection.

At one time, there was only one road from Kyiv through which children were taken away. The so-called "Road of Life". Through the city of Bila Tserkva. And it took more than a day - such was the traffic. Laboratories tests needs be delivered on time. That's why it did not do.

If you don't do it, treatment won't be as effective in modern oncology as it is with tests. —

— The twenty-fourth of February was an unusual day for everyone.

When we woke up in that morning, we had to go to work. What has changed? We have patients who need us. There were more patients in the first months of the full-scale invasion. It was suddenly. There were children from Central Ukraine, from Eastern Ukraine. There were many children and they all came suddenly.

Around thirty children-disabilities at once came in the middle of the night or day. It was an unusual load for us. Many patients, complex patients. Patients - on the day after chemotherapy. Patients - in the moment of chemotherapy. That is, such patients who cannot wait for treatment.

Cancer does not wait for the end of hostilities, does not wait for the end of the air alert. These patients came to us. We worked almost around the clock, we did not leave the hospital for three days at a time. Because there was a lot of work.

If you look at the past year, in general, we have more patients. There are more patients now. Many patients are from the eastern regions. From Central Ukraine. These are often difficult cases.

The provision of medical aid is delayed, because of hostilities. For various reasons. Basically, it's like this - the parents are sitting in the basement with the child, because there is shelling. Where will they go?

Hospitals are destroyed. There are either no doctors or no place to work. Therefore, children often reach out to hospital when they already seriously ill. A disease is protracted. —

— You can't stop the treatment of a cancer patient-disabilities because a war started and someone want to throw bombs.

Kindergartens was closed, schools was closed - you can't leave your children at home alone. They are small. We live close to the region of Bucha, Irpin, Gostomel. Therefore, it was difficult to leave the children alone at home.

Considering the volume of work that had to be done - moving from work to home and to work - it was not possible. Not all doctors could get to work. I had three colleagues who lived in Buchi.

One colleague was in occupation in Gostomel. One of our colleagues was in Vorzel during the occupation.

Accordingly, not all of the medical staff could get to work. Not all nurses could get to work. We had to solve some urgent needs  - shampoo, toilet paper. Even common cold medicines. It all fell on one shoulders. —

— During the war, this is a great burden, which would not have happened without the war. Constant air alarms. We do not know when these alarms are less safe and when more. We still have to follow the algorithm of actions according to the procedure. There is a psychological impact on both - children-disabilities and their parents. —

Oleksandr Lysytsia

— One of our mottos was child life. That is, the continuation of life in the hospital, despite the oncological disease.

We have hospital clowns, concerts - that's all have been. It helped to pass through this difficult period psychologically. There were difficult decisions.

For example, staying in a bomb shelter for a patient, in the early transplantation period. There were excessive threats of losses from infectious complications. Decisions were made difficulty. We agreed with the administration that I would not let patients down into the basement because it would harm them. —

Mykhailo Adyrov

— Air alarm. The patients are all connected to drips. We disconnect everyone and take down. Someone cannot walk alone, someone has to be carried, someone has to be taken. —

Children's oncologists have new responsibilities. At the Kyiv National Specialized Hospital "Okhmatdyt", oncologists - ophthalmologists have began to treat combat eye injuries in children.

Lesya Lysytsia

— A very large number of injuries among the civilian population were in 2022. These are not only mine and explosive injuries. For example, children found a grenade - we have had many such injuries since 2014. There were very serious injuries as a result of rocket attacks. Recently, I examined the child - half of her face was crushed. This half of the face have to completely restored. —

Oleksandr Lysytsia

— The loss of doctors also has a negative impact on patients.

It takes six years of education to become a doctor. This is two years of internship. This is a specialization. In total, it takes ten years to train a doctor. We have to spend ten years on the training of a doctor now. Oksana could save a large number of patients during these ten years. —

— The enemy launched a massive missile strike across Ukraine. Kyiv was no exception. Playgrounds and office buildings were destroyed near to us. A pedestrian bridge was fired upon. The enemy is trying to intimidate us. But our doctors are here. We all work. We provide help.

At the highest level. We thank our armed forces for defending us. We do everything possible to ensure children’s health. Glory Ukraine! To the heroes Glory!

We do everything for the future of Ukraine. —

— Of course, I cannot fail to mention the SAFER Ukraine international project. All of us were involved in it - in one sense or another.

Our government, our main benefactors and the association. This would not be possible if we do not have such a professional structured community ready to respond to this situation.

We contacted patients, groups of patients, and doctors, carried out their evacuation to Lviv - to the Western Ukrainian Center with the help of specialists who were in various centers, with the help of the "Tabletochka" fund, the "Zaporuka" fund, and other charitable organizations. Than we formed convoys of children who were going to be treated in the best hospitals in the world with the help of the Polish association, SIOP Europe.

We had doctors from different hospitals in Lviv. Some came with their patients, some stayed and helped. Mykhailo Adirov came from Mykolaiv, Dr. Istomin - from Kyiv.

We did the evacuation distribution of patients and prepared huge convoys.

It is the thirteenth month, the project continues, there are families who come from distant regions - where still shooting. 1,400 patients are in the registry who have been treated or are treating in Europe at the moment.

400 volunteers from all over the world were involved in this project. Each of the patients has fully translated medical reports and support. —

— There were forty children in the pediatric oncology unit who were either post-surgery or post-chemotherapy. Or before the operation - they were preparing. There were also adult and pediatric patients after bone marrow transplantation. One child was after all the procedures that preceded the transplantation, which was supposed to take place on February 24.

We organized the centralized evacuation of children to Lviv, under the leadership of the Ministry of Health, the Zaporuka Charitable Foundation, Natalia Onipko – for which I thank them once again, and I will thank them every time. Then the border crossing and treatment there. Poland, Germany, the USA - many countries responded in the field of pediatric oncology.

At that time, you may remember, the train stations were full, and it was impossible to get anywhere.

That is why we and the management of Ukrainian Railways agreed on a separate train - because our children can not stand or sit all night on the train on the way to Lviv. They are limited in movement.

They are forced to be either lying down or in another position. That is why we place the patients with their parents in the railway depot, not at the station.

When the train arrived at the platform, the railcar with the children did not open, and other citizens did not get on it. —

Mykhailo Adyrov

— On the day the war began, February 24, we realized that the speed of the offensive in the South of Ukraine was quite high. We understood we needed to evacuate the children precisely for safety reasons.

At that time, we did not understand where the offensive would end. The first evacuation of children began on February 25. This happened in groups. First by own transport to Lviv. A hub began to form there, where children from all over Ukraine were accepted, then were transported to foreign clinics in an organized way. —

— Of such cases, the ones I remember are really the removal of children either from hot spots or from the occupied territories.

In particular, it was Chernihiv. It was heavily shelled at that time, and we were able to take the children out of the Chernihiv Hospital only on the third attempt. Once the bus was turned around by our servicemen, who said that it was dangerous to drive now.

Once they could not leave themselves, because shelling began.

Only on the third attempt - but even then there was no guarantee the children would get there safely. We managed to get them to Kyiv, and then transported them to Lviv.

Kherson was even more difficult - it happened in April, and we were the last to take them out. By that moment, all departments had already been evacuated. Exept Kherson. It was occupied. There was no communication or opportunity for a long time.

I can not tell all the details, because the way it happened was not very legal.

There were no laws at that time. Cars were hired. It has changed numbers upon entering Kherson. Negotiations were held with russian servicemen stationed in the city.

They took humanitarian aid to one side, and children to the other. —

Andriy Beznosenko

— Those who remained, they remained to live in the Cancer Institute. We made a shelter in the basement, almost fifty beds.

We provided new mattresses, linens, a strategic supply of water, Wi-Fi, coffee and food.

There were both - hospital staff and patients who could not go. We all lived at the Institute for more than two months, until our Armed Forces repelled the russian troops. —

Roman Kizyma

— Since May - something sooner, something later - depending on the geographical location, treatment work has been resumed in the main national centers. And in regional ones too.

Patients and even animators began to return to the oncohematology department of "Okhmatdyt". Unbelievable - but technology continues to grow during wartime, which shows a huge amount of systemic work before it.

What is well organized does not break. At the moment, 64 allotransplantation bone marrow have been performed in Ukraine, 47 of them were performed at the “Okhmatdyt” State Medical Center.

A landmark event is a new technology of application as conditioning during transplantation in this year. 31 bone marrow transplantation for children. And many allogeneic - unfamily operations this year.

In such conditions, and in such complex logistics, this is an incredible achievement. —

Mykhailo Adyrov

— In this way, we transferred more children to effective treatment abroad. But already in the summer, we saw that there is such a location for children in Ukraine. Western regions began to have more workload, more patients.

We realized that some people return, some children return. They cannot immediately return to the East of Ukraine. Or they lost their homes completely. This hospital has all the facilities for primary diagnosis of children. If there is suspicion. If there is a suspicion, we have to perform a certain list of examinations.

These are computed tomography, magnetic resonance imaging, perform some invasive procedures. It became clear this hospital has absolutely all these capacities.

We started our work in August. Our first patient was from Kharkiv. They fled the war from Kharkiv, lived in Lviv Oblast. The child was diagnosed with a malignant disease. Patients from the South of Ukraine - Kherson, Mykolaiv, Odesa.

We saw that the number of such patients is constant. Currently, there are 24 children in the department, almost 70% of them are children from other regions of Ukraine. —

This is Andrei. He has fell ill with acute leukemia while in the West of Ukraine due to the war. While he underwent chemotherapy, a team of physiotherapists and rehabilitation specialists worked systematically with the boy.

Sofia came under cluster bombardment. The shrapnel went through the brain. Thanks to the hard work of rehabilitators, she can move her fingers again.

Yasha also came under rocket fire. He had a stroke after the injuries. Thanks to the specialists of the First Medical Association of Lviv, he is returning to a full life.

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In another powerful clinic - the Western Ukrainian Specialized Children's Medical Center, there is a Children's Oncology and Bone Marrow Transplantation Clinic.

Roman Kizyma

— We had a record number of treated patients with significant neuro-oncological and hematological diseases. The number reaches five hundred. We have never had so many patients - it is an incredible number.

The development of the molecular genetics laboratory is thanks to the active participation of the "Wings of Hope" Charitable Foundation. —

Yuliya Nogovitsyna

— The war has changed our activities - but it has not changed our mission.  We continue to help children with cancer in Ukraine throughout the entire patient journey. That is, from the moment of diagnosis or suspicion - until the moment of recovery, rehabilitation - or until the death of the child and support of the family after that.

The war brought a new form of activity - the evacuation of children.

We have launched a separate program to support Ukrainian families abroad. We are currently in close communication with five hundred families who have left.

We financially support about two hundred families - those in need. —

It is also worth noting the work of the "With an Angel on the Shoulder" Charitable Foundation. They contributed to the construction of the Cryobank and the purchase of equipment at the Lviv Children's Oncology and Bone Marrow Transplantation Clinic.

Despite the horrors of the war, the foundation's employees not only help financially, but also organize children's parties for young cancer patients.

The investigation used a "YouControl" analytical system

NGO "NABU" and its head, human rights defender Andriy Petryshyn participated in the preparation of this journalistic investigation.

This material has been prepared and funded - The European School of Oncology (Milan, Italy) -

https://www.eso.net/

14.05.2023, Taras Zozulinskyy

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