The toy box has a lot of plastic dinosaurs in it. Jesús Daniel plays on the floor and looks at us shyly. Later, he gives us a master class on dinosaurs. If you ask him about each one, he immediately tells you what kind of animal it is and which one is his favorite. Not everyone knows about these prehistoric creatures, but he talks about them as if they were part of his favorite cartoons and smiles victoriously. Dinosaurs do not scare him, they are his friends and have accompanied him in his fight against cancer.
Jesús Daniel was diagnosed in October 2017 when he was 3 years old. Through a CT scan, an abdominal tumor was found lodged in his kidney. In November, they started the emergency chemotherapy protocol to try to shrink the tumor and proceed with the operation.
“The medicines are not available in Venezuela, much less the chemotherapy. We were able to administer the first chemotherapies to Jesús thanks to a family member who supported us financially and traveled to Colombia and brought the medicines”, says Karina Navas, Jesús Daniel’s mother.
In December, he was operated on by a pediatric oncologist-surgeon. In that procedure, they removed his left kidney. A week after the operation, he presented with intense pain that stopped him sleeping and he began to lose strength until he no longer had mobility in his legs. Through a spinal MRI, the doctors were able to determine that a tumor was pressing on the spinal cord. Emergency surgery was performed on December 22.
In Venezuela, bad news can be even more difficult. What makes it different from other places? The serious humanitarian crisis, recognized by international organizations, in areas such as health and nutrition. How to face cancer in a country with a serious shortage of medicines? How to buy the necessary food when there is high inflation that does not guarantee that salaries are sufficient for the basics?
Cancer is expensive anywhere in the world but, in Venezuela with a minimum monthly salary that is around one dollar (according to the exchange rate at the beginning of February), it is impossible to access full treatment. Karina Navas says that she was able to witness this reality when Jesús Daniel was diagnosed.
“On December 22, 2017, at seven o’clock at night, my son needed a medicine that was not available at the clinic. The doctors said that if it was not applied it was not known if the problem of the lack of sensitivity in his legs could be reversible. Through family, friends and a person who was in the emergency room of the clinic we were able to get the medicine. We had only two hours to get it”.
“That same day the doctor told us to start with emergency chemotherapies. We did not know where we could find chemotherapies. In any country you can find them in different ways for emergency cases, but not in Venezuela”.
All the people close to a patient get involved in the search for medicines and treatment, but the mothers become the fundamental pillar and together they create a fraternity to help each other in the difficult moments and share the fight.
“I called a mom and asked her where she had gotten the chemotherapies. A few minutes later, she called me back and said she would lend me her son’s chemotherapies. We had barely known each other for a month. She trusted me, she lent it to me knowing that her son needed the chemotherapy a week later”.
On December 23rd, Jesus Daniel started emergency chemotherapy.
“On December 24 he was discharged so that he could spend Christmas with us, because we did not know if it was going to be his last Christmas. In January, he started radiotherapies and we had to start a GoFundMe campaign. In mid-February 2018 Jesús Daniel walked again”.
Many of the treatments in Venezuela are paid for through platforms like GoFundMe. Medicines are not the only thing on the list, the money is also used for patients to have proper nutrition and vitamins to withstand chemotherapy.
In the report presented by the United Nations High Commissioner for Human Rights, Michelle Bachelet, there is evidence of a complex humanitarian crisis in the health system. Despite this, Venezuela was chosen for the UN Commission on Human Rights in 2019.
Jesús Daniel went through 12 cycles of chemotherapy every 28 days, was hospitalized for complications from the chemo and faced different tests and treatments. “Thanks to the promptness with which everything was done to him, through the help of family and friends, Jesús Daniel is currently out of treatment with the respective tests, every six months, indicated by the doctors.”
After receiving help through GoFundMe, Karina created an option for her son and other children through the family business, demonstrating that the deepest pain we experience can be turned into an impulse to help others. Therefore, during February 15, all the hosting plans contracted through her company are destined to the treatment of a child with cancer.
So far, they have helped four children. Karina prefers to focus on one child at a time because the needs are continuous, costly and overwhelming for the families, besides there are a lot of factors and requirements that must be met in time.
The help created by Karina has been received by Jesús Daniel, who has not been in treatment for two years now; Maximiliano, who unfortunately passed away; and Abraham, who is currently out of treatment, but with additional care due to the damage left by the cancer in the brain region.
In 2021, the campaign is destined for Yenny Chirinos, who has Ewing’s Sarcoma and requires an extremely complicated and expensive operation. The girl’s mother has requested help from different institutions and government entities, but the support has been denied. Another foundation that is helping this girl is Fundanica, from where they are mobilizing their platforms to raise the required amount in the shortest time possible.
February 15 is International Childhood Cancer Day. The golden ribbon that represents them becomes stronger during the month. This ribbon is the insignia of the whole family in the long process, which extends beyond the initial battle.
These families appreciate any help that comes their way. There are foundations and initiatives around the world that help in the treatment of these children. There is always hope, the life story of Jesus Daniel proves it. These children just need the opportunity to have all the procedures done in a timely manner and for this, financial help is vital.
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