Children with cancer teach mothers how to cope with the disease

Mothers know what it’s like to have a toothache, fear of the dark, not wanting to sleep, being bullied. They went through this in childhood and adolescence and can understand what their children are feeling. But when what afflicts you is cancer, there is no previous experience and the family has to learn together, from the beginning.

The diagnosis shakes the mothers, and the way they deal with the news and understand the disease has an impact on the way their children face the treatment, says Renata Petrilli, coordinator of the psychology team at Graacc (Grupo de Apoio ao Jovens e à Criança with Cancer).

“There are people who receive it as a diagnosis of death and others as a relief because they wandered through various places in search of an answer”, says the psychologist.

Therefore, it is important to identify what the representations and fears are. “Those in charge say it’s like they’ve been run over, that the world has fallen on their heads, so it’s a non-specific fear. They don’t say: ‘I’m afraid of the probe in my nose’, ‘I’m afraid of the surgery'”.

Understanding the origin of children’s and adolescents’ fears is also essential because, despite advances, cancer treatment remains very invasive and can generate traumas that remain in adult life.

From the identification, says Petrilli, the psychologists work for the family to have emotional resources and articulate thoughts in favor of action and the purpose of the treatment. They remind the patient who he was and encourage reflection on what he wants for the future.

“It’s not a horror story, but it’s not a fairy tale either. We need to say that it’s a disease, it needs to be treated, there will be good times and not so good times and that we’ll be together”, says Monica Cypriano, Graacc’s medical director. “The family has to unite and the aggregates too.”

Cypriano says that, unlike adults, who suffer from anticipation, children focus on the present. Thus, it is very common to see them giving strength to mothers and fathers, who are a minority in the group of companions.

“If the child is nauseous, he gets upset, but if he is feeling well, he goes to play, run and mothers get a lot of strength from that, from seeing their child jumping”, he says. “Children teach mothers more how to deal with the process than the other way around. They think, ‘My son is laughing, why am I crying?’.”

Mary and Olivia

In August 2021, everyone thought that the pain that student Olívia Maria de Oliveira Garcia felt was related to the menstrual cycle. She went to the hospital in Pouso Alegre (MG), received medication for colic and was sent home.

“But the pain became so intense that I could no longer do daily tasks, just lie down. I started to get a fever, stopped eating, going to the bathroom”, reports the student, now 17 years old.

“I found out it was cancer when we went to get the biopsy result”, recalls Olivia. “The first thing I asked was, ‘Mom, is my hair going to fall out?'”

“We’ve never seen a child with cancer in my city, so for me it was an evil disease that only affects old people”, says the mother, housewife Maria Eluíza de Oliveira, 52. “Then, we learned what it was .”

Olivia underwent surgery to remove the ovarian tumor and, with the result of the biopsy, was sent to Graacc, where she arrived in January 2022.

In the beginning, according to Olivia, her mother watched videos about the disease, which bothered her. “She researched and came to talk to me. It’s not because it happened to someone that it’s going to happen to me too.”

“I wanted to know what she was going to go through so I could cope better, so I could be prepared”, confides Maria. “The psychologist told me not to do that anymore, that it was hurting Olivia, and the doctor explained that organisms are different.”

Today, when Olivia is in a bad way, her mother tries to help her by observing her limits. “I respect her pain and staying by her side is a way for her to feel protected, safe and to know that she is not alone”, says Maria.

Rafaela, Raphael and Arthur Gabriel

When he arrived at the hospital, Arthur Gabriel Borges Frasão, 8, was given two canvases by the psychologist. The first, suggested his mother, Rafaela Frasão, 36, he could paint and the second could be used to collect the fingerprints of the entire health team. It would be a picture of the “fingerprints of love”.

The idea of ​​u200bu200bgetting the “aunts” hands dirty calmed the boy, and in a few weeks the blank was filled. “Seeing the fingerprints now reminds me that the professionals donated to take care of him. You need that kind of treatment, someone to take care of because, like it or not, the affection of others also helps”, says the mother.

The boy was diagnosed with non-Hodgkin’s lymphoma in early 2022. “I told him it was cancer and, when the doctors arrived, he said: ‘Uncle, you can tell me because I need to know'”, recalls the mother. “He learned about the disease as he felt it. And I learned by researching and asking, asking them to explain it to me.”

“The disease is very treacherous, very dangerous. At one moment he may be fine and the next he may no longer be with us. This element has taught me a lot to be more united and not to leave anything for later because later it can be late,” says Rafael Borges, 33.

Now that he was discharged and is going back to Palmas, Arthur wants to frame the canvas. He has decided that he will be a pediatric surgeon, that he will work at Graacc and he intends to put the painting in his office to show it to all the children.

Jacqueline and Sarah

In early October 2022, Sarah Matos Muniz, 10, reported discomfort in her body and that the right side of her abdomen seemed higher. As she did not feel pain, the complaint did not alarm her mother, teacher Jaqueline Matos de Lima, who decided to wait for the consultation with the pediatrician.

A few days later, however, Sarah’s sister fell on her already fractured arm and the mother decided to take her two daughters to the Municipal Public Servant’s Hospital. There, the doctor noticed that there was something abnormal in the older woman’s ultrasound, asked for her hospitalization and suspected that it could be Wilms’ tumor, which was later confirmed.

“I told her: ‘You have a lump in your belly. It’s big and it will be necessary to remove the kidney, but rest assured that everything will be fine'”, says the mother.

“I ended up finding out on my own that it was a tumor”, reveals Sarah to Jaqueline’s surprise. “To distract myself, I took my mother’s cell phone and saw the message she had sent to my father, saying it was a tumor. At first, I cried a little, I was a little sad.”

“We found out about this tumor at the hospital, talking to the doctors”, says the mother. “When I find out about something, I already want to research it, find out more, but not in this case. For peace of mind, I prefer not to seek information outside of the doctors. I also advised Sarah not to search, because what is on the internet is not this is exactly the case with her and this can cause more anxiety.”

Sarah was referred to the GRAAC and, on October 26, underwent surgery. Then she started chemotherapy sessions.

“When her hair started to fall out, I got a little anxious. It’s a terrible affliction to comb and the hair comes out completely in my hand”, says Jaqueline. “But I looked at Sarah and she was at peace, calm, and then I thought I had to pull myself together. The doctor at the Hospital do Servidor said that I had to control myself, try to be firm and pass positivity to her, and I I’ve been doing this from the beginning.”

Shirley and Joachim

While Joaquim, 8, has fun in the toy library waiting for the chemotherapy session, financial assistant Shirley Pereira da Silva, 43, works on her laptop at one of the tables surrounded by toys.

“Working makes me stronger. I need to produce, move on. I need to maintain myself, maintain it and continue being myself, it’s my identity”, she justifies. It is also a way of showing the child that he has to be strong and do what is necessary.

At the end of July last year, Joaquim started to feel a headache, which became more frequent in September. After going back and forth to a health center, his mother took him to Campo Limpo Hospital, where he received the news of a brain tumor. Afterwards, at Graac, he was operated on and started on chemotherapy.

Today, the mother is mainly concerned with feeding her son, who has lost weight. “I lost my will, the food was tasteless”, explains Joaquim.

“He realizes he has to eat and eats even without wanting to. He also understands the need for treatment, he has no option. He doesn’t complain, he understands and accepts it. The therapy helped him deal with it.”

According to the mother, the son understands the seriousness of the disease. “Joaquim’s diagnosis came right after my father had surgery for prostate cancer in Pernambuco and my son accompanied all the rush, the worry, so he knows what cancer is. He knows it’s worrying and he knows it’s no use crying because we have to take care, treat.”