Ximena, Aithana, Giovanni, and Alejandro walk through the halls of the Pediatric Hospital of the 21st Century National Medical Center with confidence. They know it very well because, years ago, they were cancer patients and now, as Guerreros Voluntarios (Volunteer Warriors), their mission is to give advice and accompany children that were just diagnosed with cancer, as well as trying to convince them they can defeat this disease.
Enrique López Aguilar, director of the medical unit, explains to EL UNIVERSAL that this program led by youths who survived cancer is unique in the world and that what makes it different from other programs is that they tell their first-hand experiences and thus help the new patients to get rid of fear and anxiety.
“Five years ago, we thought that a kid who has just been told he has cancer does not want to listen to the doctor of his parent but other persons who know the disease, who can tell him their stories and give them hope to live,” he says.
Each year, the High Specialty Medical Unit (UMAE) attends 500 new cases of children with cancer. The challenge is for the patients to feel confident, therefore they receive support from the Volunteer Warriors.
“We need to change the chip to [chldren with cancer], to get them away from the idea that they’re going to die. The term “terminally ill” is forbidden here. Our volunteers, who were patients, help us achieve our goal: for the little ones to feel confident, to keep the hard work, to see themselves in that mirror and see they can, that they are able to fight,” he asserts.
These youths’ commitment, led by Gabriela Flores de Biehl, which joins the IMSS Volunteering Program, is to accompany patients and their families since they receive the diagnosis until the end of the way.
“They receive accompaniment until the end, no matter how it happens. If [the patient] is cured, we ask them to accompany other children; if it didn’t happen, the family receives accompaniment, and that is nice, too.
“Those who leave, do so in peace, but mainly without pain and anguish. Families are grateful,” he says.
“You will fall, but you will rise”
A day before her 15th birthday, Ximena Gutiérrez lost her right leg as a result of an osteosarcoma doctors found in her a year before.
As a member of an “escaramuza” team and a swimmer, she wondered if she could return to her daily life, but with effort and support from her parents, she was able to do so. Hence, she joined the volunteering program because she wants other children to remain faithful in that they will be able to overcome this stage of their life.
“It’s very hard, you don’t know how you’ll keep on living. I didn’t know I could keep riding horses; the chemotherapies are very hard. I weight 27 kg, I had no force, but I understood that I love sports and that I must continue practicing it.
“When I could continue my normal life, I decided to come and tell children they’ll be able to do what they want, but that it’s going to be difficult. You’re going to fall, but you have to get up,” she mentions.
Before distributing Christmas gifts to the children who remain in the hospital, Alejandro Cruz remembers that when he was 13 years old and a diagnose of mixed germinal cancer with pulmonary metastasis, his treatment was not easy, that he would have like somebody to guide him and give him advice to face the most difficult moments of the disease.
“The worth of this program relies on experience. When I was a patient, nobody told me how chemotherapy felt, the sickness, or how to lessen the secondary effects of the treatment. It was something I lacked, for someone to take me by the hand without being a doctor, a nurse, or my mom or siblings, that’s why I decided to join in,” he mentions.
Now that he is 22 years old, Alejandro also uses his experience to help children to reintegrate to their daily life once they are discharged: “Sometimes we cannot understand that when we leave the hospital, life is very different; it’s difficult for us to adapt to a social environment; that’s why I’m here, to tell them about my experience and lessen theirs.”
Aithana Rojano’s deep voice sounds in all the room. Unlike her teammates, she is not a cancer survivor, but her eight-year-old brother is, so the Pediatric Hospital became her second home and that made her want to participate as a volunteer.
“I have a brother that has been here almost since he was born. He was diagnosed with bilateral retinoblastoma and lost both eyes.
“When you’re on this side and see people complaining for having a cold, then you admire these kids, who despite all the difficulties, of all the processes they go through, they fight every day. That makes them worthy of admiration.”
“I began as a volunteer four years ago. Our job is to make the kids' stay pleasant and to give them hope; I wish they know they’ve got a friend in me,” she says.
Giovanni Díaz is the most silent of the group, he is 16 years old and survived germinal cancer in the right testicle with metastasis in the lung, kidney, and stomach. He decided to be a volunteer because his father told him that every day he faced his disease, he taught him something and that, just as he could learn, others could do it.
“At first, it was a bit hard for me to come. When they told me I had cancer, my attitude was “I can, I will go on,” but when they started giving me the medicine, I cried, sometimes I got fed up and I felt terrible, I didn’t like to talk. My father talked to me and told me I taught him a lot and that I could do the same with other people, that having cancer didn’t mean I could not have a life. This is what I seek to share with other children; that they will not always be like this,” he explains.
Making the difference
Enrique López Aguilar is convinced that the Volunteer Warriors make the difference among his recently diagnosed patients, so he makes invites other medical centers to replicate this kind of program.
“We’re convinced that the patient is highly benefited. It’s a reality, the kids evolved and feel empowered because they had that support, that advice from someone who experienced the same as them. Hopefully, other hospitals will replicate this program, it’s an effort with excellent results,” he asserts.
For the specialist, the most important is to empower the children, for them to have information about the disease they have and not to victimize it, therefore he condemns when volunteering programs are done to attract media attention.
“As doctors, it’s very important to win the patient’s trust; we must reach them, give them a good vibe, for them not to feel you’re an arrogant doctor but someone who wants to help.
“We must give them information all throughout their diseases, because that empowers them, and we must avoid victimizing them, no matter what. That’s why I don’t like it when people come to give them presents but with cameras recording everything. It’s very sad for them to use the kids as a box office; we must promote true altruism,” he stresses.
Aithana, Xime, Ale, and Gio think that their labor is a small part to benefit all the children with cancer, so they ask them not to give up, that as difficult as these moments are for them, they must remember it is something temporary.
“It's going to hurt, it will be super difficult, complicated, and harsh, but in the end, it will be worth it because it doesn’t matter how you get out of here, but of trying to do so, because it’s not always possible.
“Therefore, they must be sure that the fight will be worth it as hard as it may be,” says Alejandro.
“Be strong, here’s a team that will always be there for you. We’re going to teach as well as you’ll teach us. Nothing is impossible,” says Aithana.
In this sense, Ximena comments: “It’s true that they will fall, but they must and they can get up; they must have a lot of self-will and the good things they have. Any advance, as little as it may seem, is a step forward.”
Giovanni asks children not to think cancer will end their life: “It’s a bad taste that will become a bad memory. Our job is to tell them what worked for us, to listen to them and accompany them; they are not alone,” he says while he prepares the last delivery of toys with which child patients will celebrate Christmas in the hospital.
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