They Are The Ones Eliana Smiles at Now

Eliana Lucena created the Fundación Lucianita Valeska —a foundation that collects supplies for cancer patients at the Doctor Agustín Zubillaga Children’s Hospital in Barquisimeto, state of Lara. She did so driven by a life-altering experience.

Images: Carmen H. García

Eliana Lucena can now talk about it without bursting into tears. These days, she can do it like so, composedly, sitting next to her husband Yosender Gimenez and her daughters Camila and Anarella, the two she has left. She does not cry that much anymore.

Her daughter Lucianita Valeska was one year and three months old when she was diagnosed with leukemia. It was September 20, 2017. That is when Eliana’s life took a different turn. Her days as an administrative clerk at the Nueva Segovia School in Barquisimeto were now being replaced with long hours at medical offices, hospitals, waiting rooms, and laboratories.

Even before that, taking Lucianita to the doctor was a distressing experience for her. Maybe because what she lived through when the girl was only 28 days old was still fresh in her memory: Lucianita had coqueluche, or whooping cough, and she was hospitalized for 7 days for an aggressive antibiotic therapy. The girl was discharged and was ordered complete rest by the specialists, and she was kept like that until an immunologist gave her the green light to lead a normal life.

Lucianita’s health was no longer at risk. But Eliana’s mother’s intuition told her there was something wrong with her little kid. She began to notice that Lucianita had a poor appetite and that she was lethargic and down.

The pediatrician told her she had nothing to worry about. Eliana, however, could not shake off that bad feeling. Three months later, on Monday, September 18, 2017, her fears were realized. Although the girl was physically fine, the doctor noticed that she had lost substantial weight. And she grew even more concerned when the child fainted during a doctor’s visit and hit hard on the latter’s desk.

Eliana rushed straight to the lab and ordered a full blood count. At 4:00 in the afternoon, she received a call from the doctor: Lucianita had to come back the next day because they needed to draw another blood sample.

“There is something unusual about the test results”, she said.

As soon as the sun came up, Eliana took her girl to another lab, as suggested by the pediatrician, for a repeat test. She then went straight to work and waited until the end of her shift to go get the results, which were handed to her with a recommendation:

“Go see a hematologist.”

She went to her mother’s, in distress. It was only when she got there that she opened the envelope:

The girl’s hemoglobin count was 6 grams per deciliter, and her platelet count was 12,000 per microliter. The normal ranges are 11 to 16, and 150,000 to 350,000, respectively.

They contacted the pediatrician, who recommended that the parents take Lucianita to the office of hematologist Rafael Andrade, who at the time was the head of the Oncology Unit at the Dr. Agustín Zubillaga Children’s Hospital in Barquisimeto. On September 20, 2017, late in the afternoon, the doctor saw the child in his private office and immediately ordered a blood smear. A blood smear is a test that analyzes platelets and white and red blood cells. They waited for the lab results until 7:00 p.m. The doctor’s words were:

“She has leukemia. This girl needs a blood transfusion right away. Where do I refer her to? To the Social Security Hospital or to the Children’s Hospital? If you chose the Social Security Hospital, you will have to wait, but I am the head of the unit at the Children’s Hospital and I could have her hospitalized there.”

The next day, Lucianita was admitted to the Children’s Hospital. They proceeded with the blood transfusion as soon as she arrived there. As they tried to insert the intravenous catheter for the procedure, they noted that the best place to do it was on a vein on the right side of the child’s neck. Eliana left the room. Seeing her daughter with her head back and with a needle being pushed into her neck was something she could not bear. But the child’s crying reached her nonetheless outside.

She said goodbye to her husband at the hospital’s entrance a while later. As she walked up the stairs again, she came across a sign that read: “Oncology Unit”. It dawned on her that everything had changed very quickly. She started to cry. Alone.

That would be Eliana’s first night at the Children’s Hospital. She was new at it and she did not know how things were in a room that they had to share with another patient. A relative of said patient walked her through:

“We clean up the room every single day. You have to bring your own supplies, like a broom and a floor cloth, vinegar to rub the crib with every morning, and a fragrance-free disinfectant, because it is children we are talking about.”

That same night, they told her that the girl needed to have an immunophenotyping test performed. The sample would be sent to the Hospital de Clínicas Caracas, in the country’s capital, some 226 miles from where she was. It was an important test because it would determine exactly the type of leukemia that she had and, therefore, the treatment she should receive.

The thing is they could not afford paying for the test or get the sample to Caracas.

But such hurdles would soon be cleared: a cousin who had migrated to Chile sent her the money, and they were able to arrange for the shipment through a neighbor who had someone that drove her to Caracas.

Eliana devoted herself completely to her daughter. She would only go to her mother’s house to change her clothes. Lucianita had blood transfusions every day, morning and night. The hospital required them to bring three blood donors each day, which they were fortunately able to find through the posts they made on Instagram asking for help.

The results of the Clínicas Caracas’ test arrived by email when the girl had already been hospitalized for two weeks: she had acute myeloid leukemia. By the next day, they had finally secured the drugs they would use in her chemotherapy, some of which they collected at the Venezuelan Institute of Social Security, and others that they had to purchase out of their own pocket.

But Lucianita seemed to be in no condition to undergo chemotherapy. She was weak, in spite of all the blood transfusions, and her blood values were outside the normal range. Even so, on Monday, October 2, 2017, Lucianita began her first chemo session.

And Eliana would start to put the entire process in writing as of that very moment…

“They gave me a notebook so that I could write down everything they were going to inject her with. I named it the “Way of Faith.”

She still has that notebook. Almost half the pages contain medical instructions and notes that she would jot down about what they did to her daughter, the medications she took, and the doctors’ visits.

On the second day of chemotherapy, Lucianita woke up with strabismus. A CT scan was ordered to find out what was happening, which she was performed at Badan Lara, two blocks from the children’s hospital.

“It was the first time Lucianita saw the sun since she entered the hospital. I remember vividly that, as we were approaching Badan, she looked up at the sky and the man in the ambulance said: “That is right… you are looking up at the sun!”

The day after the scan, Lucianita slept all morning. When she finally woke up, she would not eat. They could not possibly continue with chemo either.

Eliana noticed that the girl was drooling; she cleaned her up and immediately called the neurosurgeon, who checked her up and told Eliana that the disease was now affecting the central nervous system: “She has metastasis in the brain. There is nothing more we can do… just wait for the will of God to be done. Give her all of your love; kiss her; that is what she needs right now.”

Eliana had no appetite; she was worn out, tired, sad, and anxious. She would go up and down the 4th Floor stairs. She was dazed and confused, to the point that, even with the doctor’s opinion, she got the idea that this new complication was just the flu. But, one night, Lucianita began to convulse; she would stretch her legs, while her face and the rest of her body would become rigid. She should have been moved to the Intermediate Care Unit, but there were no beds available. They told Eliana that the girl could die at any moment: her eyes were shut, she was unconscious, and she had difficulty breathing.

Lucianita was taken to the Immediate Medical Care area, where she would be kept alone, intubated and monitored.

Lucianita was inserted a urine probe.

Lucianita was connected to a ventilator.

Lucianita ran a fever and she had to be dabbed with a cloth dampened in lukewarm water, which they heated in a bottle that they placed on top of their car’s running engine.

Lucianita’s nose was bleeding on and off, and the doctor on duty had to drain out the blood with a tube.

Lucianita had to be manually ventilated because, on her second day at the Immediate Medical Care area, there was a power outage and the hospital’s power plant did not start. She was stable for a few hours, but then her breathing started to fail again.

And then the doctor advised Eliana and Josender to talk to the girl a lot. This finally made the mother realize that her daughter was dying.

The doctor prayed.

Lucianita’s grandparents, her uncles… they all entered and left the room, two at a time.

Life support could be removed, which is what the doctors recommended, but Eliana and Josender would rather have God’s will made. Little by little, the ventilator stopped working for her, and her heart rate dropped.

The monitor to which Lucianita was connected emitted a long continuous beep. Josender kissed her. He called her name several times.

Eliana ran through the gates of the Children’s Hospital and she and her sister, who was outside, hugged. She collapsed. When she came to, she saw that her husband Josender was carrying Lucianita, all wrapped up in a blanket. She held her for the last time. It was October 13, 2017. She had spent 23 days with Lucianita in the hospital. Eliana crossed the ramp of the children’s hospital with Lucianita in her arms and took her to the morgue…

Her relatives walked behind her, in tears.

Two days later, Eliana returned to the Children’s Hospital, but this time to donate all the money they had collected during their child’s illness. The moment she handed over that money, Eliana came up with the idea of creating a foundation to help other children with cancer. And that is how and when she began to bring the Lucianita Valeska Foundation to life: an organization that did not exist formally yet was making a donation.

That same day, she opened an Instagram account, and people from several states started reaching out. From that moment on, @fundacionlucianitavaleska would be the vehicle through which they would make their work known. The foundation is now consolidated: it helps 65 children with cancer on the 4th floor of the Doctor Agustin Zubillaga Children’s Hospital. Right there where Lucianita once was.

They are the ones Eliana talks to and smiles at now.

Translation: Yazmine Livinalli

This story was produced within the framework of the La Vida de Nos Itinerante Universitaria program, which offers workshops on real-life storytelling for university students and professors from 16 Social Communication schools in seven Venezuelan states.