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"Treatment is as inconspicuous as possible for children": who helps young cancer patients
Children's Day is celebrated all over the world on June 1. Those who have suffered from cancer need special attention. Treatment often takes a long time, during which both young patients and their loved ones need support. Izvestia found out what needs such families have and who helps them along the way.
The treatment is several years long
The treatment of oncological diseases in children, as a rule, consists of several stages, says Mikhail Maschan, Chairman of the Board of the Podari Zhizn Foundation, MD, Professor, Deputy Director General for Science at the Dmitry Rogachev Federal Center in Moscow. The Podari Zhizn Foundation has been providing assistance to the center's patients for almost 20 years.
Treatment usually begins with intensive care: every day the patient receives up to ten or more different medications intravenously. At this time, he must be in the hospital, because it is impossible to do this on an outpatient basis.
— But in most programs for the treatment of tumors in children, especially with leukemia, there is a stage when intensive therapy ends and there is no need for inpatient treatment anymore, — explains Mikhail Maschan. — Nevertheless, the patient must remain near the clinic for quite a long time to continue less intensive therapy. And also so that doctors could monitor his condition with the help of tests.
In St. Petersburg, the St. Petersburg AdVita Foundation also helps children with oncohematological diseases (leukemia, lymphoma). In a favorable scenario that does not require a bone marrow transplant, the inpatient stage will be about a year, and two more years will be required for supportive outpatient therapy, they say.
— We are mainly treated by patients who have come from all over the country to St. Petersburg for bone marrow transplantation. When everything is "going according to plan," the patient can be discharged after an outpatient transplant in about a month, explains Lada Davydova, head of the ward support service at the AdVita Foundation. "But that doesn't mean he can go home." For about the same period, he will be under the close supervision of doctors in a day hospital, he will be regularly tested, and some kind of therapy may be prescribed.
Then the patient will be allowed to go home for a month, but after that he will have to go to St. Petersburg again for control, and then come with different frequency over the next few years. In total, even if everything goes well, the patient will remain under supervision and in constant contact with the attending physician for about five years. If severe complications occur, it is impossible to predict the duration of both treatment and rehabilitation period.
How cancer treatment affects the family
When a child falls ill in a family, the lives of his parents, brothers and sisters change dramatically, the AdVita Foundation emphasizes. It's not just about psychological factors — severe stress, growing fear for the rest of the family — but also about financial costs. It is important to keep in mind that in many cases it is necessary to move to a megacity for the duration of treatment.
— If we are talking about complex diseases that require treatment in a foreign city, the family is often separated for many months, or even years. In the case when a child needs a bone marrow transplant, one of the parents is most often forced to leave his job and go with the child to St. Petersburg," says Lada Davydova.
In this case, mom or dad, who stay at home, should not only take over the whole household, but also earn for two. At the same time, both relocation and treatment are associated with additional expenses — for travel, medicines, medical supplies, special meals. A significant part is taken up by the payment of housing — in such cases there are additional requirements for it, primarily due to necessity.
— The first is the transport accessibility [from the medical center]. An outpatient patient cannot be within three to four hours of the clinic. There are situations when a child may need a quick reaction from doctors," says Mikhail Maschan. — For example, a patient with low white blood cells has a fever or a patient with low platelets is bleeding.
If the patient can return to the clinic within an hour, this is normal, the doctors will be able to help. If it takes longer, it is already fraught with serious health risks, the doctor emphasizes.
Another important factor is hygiene and comfort in the apartment. The room where a child undergoing cancer treatment lives should be clean, sparsely populated, requires frequent cleaning and the opportunity to prepare special dietary meals. The presence of microscopic fungal spores that can accumulate in dust or mold in an apartment can be deadly for children with weakened immune systems. There are also psychological factors.
— It is good if you can create home conditions in the apartment where the child lives: it has long been proven that the effectiveness of treatment in a comfortable environment increases significantly, — explains Mikhail Maschan.
What kind of help is available to families of children with cancer
In Russia today, support is provided for families with children with cancer. In particular, the state is increasingly taking over the payment for the examination and activation of bone marrow donors, which reduces the cost of the family directly for treatment, according to the AdVita foundation.
But at some stages, part of the costs may fall on the shoulders of the family. In such cases, as well as when there are not enough funds for treatment, people turn to foundations. They can help not only with fundraising, but also with travel to the place of treatment, psychological support, purchase of necessary medicines or consumables and reagents for clinics.
Specialized non-profit organizations also help with housing that meets all criteria. So, both the Gift of Life in Moscow and the AdVita Foundation in St. Petersburg pay for temporary apartments near federal medical centers.
— We pay the rent of 20 apartments in St. Petersburg so that our wards have a place to stay. The apartments operate on the principle of mini-dormitories for 3-4 families and are equipped with everything necessary," AdVita Foundation says. — During the treatment they become a real home. Sometimes the need to live in a strange city stretches for years, and we try to help as much as necessary.
There is a boarding house on the territory of the Dima Rogachev Center in Moscow, but it cannot accommodate all those in need. Places in it remain a priority for children in serious condition, explains Mikhail Maschan. In other cases, patients usually seek help from the Gift of Life foundation, the doctor explains.
The temporary apartments that the foundation has been providing to families of sick children for many years help to partially cover the housing needs of such families, but they also have a number of limitations, explains Ekaterina Shergova, director of the Podari Zhizn Foundation. One of the main things is that they are gradually not enough for everyone.
— Besides, our outpatient apartments are, in fact, communal apartments. The foundation rents, as a rule, three—room apartments, where one family (a child plus a parent) lives in each room," explains the interlocutor of the publication. — This is a story about small spaces, living together and sometimes unhappy neighbors.
And in any case, children living in the city are deprived of the nature walks they need.
Boarding house in the manor
A possible solution, according to Podari Zhizn, may be the construction of the Izmalkovo boarding house in Peredelkino near Moscow, which is scheduled to be completed in the fall of 2025.
The boarding house, located on the territory of a 19th-century estate, is designed for 1,175 families per year (for comparison, there are about 200 beds in the Dima Rogachev Center itself), which means that its use can significantly increase the flow of children who receive help, doctors expect.
— The boarding house, which was built as part of the Rogachev Center complex, was not large enough to increase the flow of patients that we can treat with our inpatient capacity, — says Mikhail Maschan. — We also want the resources that we have in the framework of inpatient care to be available to even more children.
A boarding house can significantly reduce the waiting list for medical care, Ekaterina Shergova confirms, but it is also important how such a format will affect the general psychological state of patients.
— It is important when the treatment is as inconspicuous as possible for children. And it is the boarding house that will give them this opportunity. Not to stay in the hospital, to live a normal child's life as much as possible," she says. — In conditions as close as possible to home conditions. All this is necessary to be in good shape, not to lose your mood and desire to fight the disease.
In addition to family homes, the boarding house project also includes large-scale landscaping: a large playground, game rooms, and garden beds where vegetables and herbs can be grown.
— First of all, we wanted to create a homely atmosphere for children. So that when they get to the boarding house, they feel like they are at their grandmother's cottage," says Ekaterina Shergova.
The construction of Izmalkovo is funded by targeted donations from major benefactors and legal entities, so funds intended for the treatment of children are not spent on it.
"Tools for building a familiar life"
In principle, the social and psychological component is important in helping families who are faced with childhood cancer, since all areas of life suffer in these situations.
Both AdVita and Gift of Life have their own non-medical rehabilitation programs designed to help families return to normal life.
They usually include a variety of workshops, guided tours, themed events, and even Family Weekend rehabilitation programs at Gift of Life and AdVita.
— All these activities for families can become a kind of "tools" for establishing a habitual life. During joint events, our patients learn to communicate anew within the family, participate in master classes with their loved ones, or try their hand on their own for the first time during long-term treatment," says Lada Davydova.
In Podari Zhizn, non-medical rehabilitation programs are aimed at the psychological and social adaptation of children who have suffered from serious illnesses. The Foundation relies on an approach called "therapeutic recreation." By creating a variety of opportunities and providing support at each stage, participants are helped to gain new experiences, experience a successful situation and transfer it to their normal lives. At the same time, what is happening is perceived as a rich and varied vacation, and it is the foundation's responsibility to make it as effective as possible in terms of rehabilitation.
This approach is applicable both for the return of former patients to normal life, and in working with those who are still undergoing treatment, the foundation clarifies. Taking into account the same approach, it is planned to build an activity center for the guests of the future boarding house in Izmalkovo.
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