When the baby's sick. intellectual support in paediatric oncology

With Violet Pawlik-Nowacka, Operations manager with Foundation for Children with Cancer Diseases “The Blood” we are talking about the activities of the foundation, barriers to diagnosis and treatment of cancers in children and the importance of intellectual assistance for patients and their families.

Justyna Matusiak: What barriers to the treatment of children with cancer and haematologic diseases are the most common among the parents of tiny patients today?

Violet Pawlik-Nowacka: Diagnosis remains the biggest problem, especially in smaller towns. The strategy is constructed in specified a way that there is usually 1 clinic in 1 voivodship conducting specialist oncological diagnostics of children. It means long commutes, a separation from household and large stress for parents.

There is besides frequently a deficiency of clear information about the treatment process and why additional diagnostic and qualifying tests are needed before starting therapy.

Parents find themselves in a new, hard reality and request to find themselves in a strategy very quickly.

Further challenges arise after the end of oncological treatment. Intensive therapy saves lives, but leaves a mark in the baby's body. tiny patients later conflict with co-existing diseases, gastrological, nephrological or neurological problems. A peculiarly hard minute is besides the transition from care.

So there's no complexity?

Yeah. If an adult is ill, an oncological card is given and treatment is administered according to the system. On the another hand, the minute of transition of a sick kid into adulthood is problematic in systemic terms. It's different to treat children or adults. There are besides specialists changing. For example, we have a boy who had cancer at the age of 16, and now, at the age of 19, he has a relapse. He is already officially treated as an adult, so he ceases to be under the care of a pediatrician and is referred to the doctor of the [Basic wellness Care – ed.]. Therefore, there is simply a request to make a registry of specified patients.

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Why would specified a evidence be used?

It would give doctors fast access to information about past treatment, therapies and possible complications. This could actually improve the safety and effectiveness of further treatment.

How do children and their parents respond to diagnosis?

It's always a immense shock, but the reactions depend on the age of the child.

Younger children frequently do not full realize the seriousness of the situation. They are most hurt by their separation from their peers, deficiency of school and regular life. They can inactive laughter and play and enjoy the moment. This child's joy gives large strength.

Teenagers are already more aware of diseases. There is simply a sense of exclusion and loneliness.

Therefore, intellectual support is absolutely crucial today, especially during the increasing intellectual crisis among young people.

Parents go through stages of emotion: shock, disbelief, anger, feelings of injustice, and sometimes guilt. There are questions: “Why our child?” "Could we have done something earlier?".

In fact, the full household is sick. 1 parent frequently has to leave home, work, and another children to live with a sick kid in a clinic hundreds of miles away. Therefore, intellectual assistance for parents is as crucial as treating the patient itself.

What are the first steps to be taken after the diagnosis?

First of all, you gotta talk to a doctor and ask questions. The greater cognition of illness and treatment, the easier it is to regain the sense of perpetuity.

It is besides very crucial to usage psychologists. At the “Krwinka” Foundation, psychologists are constantly present in the ward and support both children and parents.

Sometimes 1 conversation lasts half an hour, sometimes 3 hours, due to the fact that you can't close people's emotions in a rigid frame.

Psychological aid doesn't end with a discharge from the hospital. Many parents and children besides request support after treatment is completed, erstwhile they request to learn their regular regular again.

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Where can I come to you? Can you come for aid even after being cured erstwhile it's hard to get back to a average life?

The “Krwinka” Foundation can be contacted straight at the Clinic of Pediatrics, Oncology and Paediatric Hematology in Łódź and by telephone, email and website of the Foundation.

What is crucial is that support does not end erstwhile treatment is completed. intellectual assistance is aimed at people at and immediately after each phase of treatment. This besides includes situations where the illness has been formally overcome, but difficulties arise back to everyday life, relationships, school or sense of security.

And this is an highly common experience.

The body’s healing itself does not always mean that the psyche returns immediately to balance.

Many patients and families experience emotional fatigue, fear of relapse, social difficulties, or a sense of failure of subjection after months of life.

The Foundation besides organizes rehabilitation and recreation tours and integration activities for children undergoing treatment, in the final phase of therapy and already cured. The thought is not only medical help, but besides the recovery of normality and the feeling that you can come back to life after a disease.

It seems that it is hard for Poles to break down and ask for the aid of psychologists or psychiatrists. There are any interior opposition and environmental taboos. Did the medical community besides gotta break down to let psychologists to undergo treatment?

In Poland, this process of change was slow due to the cultural taboo around intellectual wellness and the strong conviction that “you gotta deal with yourself”. Therefore, both patients and parts of the medical community had to gradually break down to the treatment of psychology as a full part of the treatment.

Today, doctors are very happy to aid psychologists who have become partners and support medical staff.

What does your work in the organization give you? What are you most grateful for?

For almost 20 years, I've been socially active. I have previously been active in organizations that aid animals, support children's talents or the disabled. The subject of children's diseases frightened me a lot, but present I know I'm precisely where I should be.

What amazed you the most at work in this organization?

The most amazing thing is that despite their illness, children are inactive full of life. I expected sadness and silence, and I saw children laughing, climbing trees, tearing and enjoying all minute during the rehabillitation and recreation turn.

This is why the Foundation besides conducts educational activities in schools. The point is that peers realize that a kid after a cancer is not “other”.

Are you offering any social services to your subjects?

For more than 30 years, the Foundation has been providing care for children with cancer diseases “Krwinka” and their families. The organization was created by the parents of children with cancer and inactive works very close to the regular needs of their subjects. The Foundation provides intellectual assistance, rehabilitation, social support and Start Aid for families in financial difficulties.

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Psychologists, rehabilitators and social workers are present in the wards with which the Foundation cooperates. Art workshops, music therapy, art classes and household therapeutic trips are besides organized.

We want children to be able to forget the illness for a while and just be children.

Has the diagnosis and treatment situation improved? How do you see the future of cancer treatment and diagnosis? How has the approach to these problems changed since the foundation was established in the 1990s?

Medicine has made large progress. It is increasingly possible to reduce the side effects of therapy, and modern treatments give children better chances of health.

The breakthroughs are CAR-T therapies used, among others, to treat leukemia. This is an highly advanced method utilizing the patient's own immune cells, which are genetically modified so that they can fight the illness more effectively. Although therapy is very expensive, it gives large hope to families for whom previously treatment options were limited.

The COVID period was a very different time due to the lockdown that was imposed. How did the ward and clinic function at the time?

During the COVID-19 pandemic, the functioning of oncohematological troops and ours was severely restricted by the sanitary and lockdown regime. However, the clinics of paediatric oncology and haematology worked all the time due to the fact that cancer treatment could not be stopped.

For hospitalized children, this was a peculiarly hard time due to the fact that social isolation further exacerbated the stress of treatment.

Despite this, the foundation continued to support patients and wards — providing medical equipment, providing material assistance, and preparing support and gifts for children, all in a expression adapted to sanitary warnings.

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What are future improvement plans?

The Blood Foundation is constantly developing its activities. The plans include providing patient care in the ward and expanding educational and intellectual programs. We want to make children grin and make them forget the illness for a while.

And it is in this conviction that the best sense of the activities of the “Krwinka” Foundation is to give support, hope and the feeling that even at the most hard minute no 1 is left alone.

And the finances?

Our business is based on 2 sources of funding: financial and material donations and 1.5% tax. We supply alleged "start-up programme" to patients who are in financial difficulties. Before any financial means can be transferred to our client's account, we're giving him six 1000 zlotys. We besides pay for rehabilitationists, psychologists, music therapists and animator in the ward.

Thank you for talking to me.