Every week, Julian has something to celebrate. At eight years old, last week he was the protagonist of an intense Sunday morning with games and music for children. On this occasion, it was a water festival, with small pools, slides, foam cannons, inflatable castles and lots of fun to the rhythm of children’s songs and the traditional game of Mula drums (northwest of the region of Murcia), where the day took place.
But this one, a Sunday in late August, was preceded by dozens of events and festivities, all celebrated in his honor and with a single goal: to raise funds for charity to fight childhood cancer. His parents, always active in organizing these events, have many things to celebrate every day: their son has beaten a brain tumor.
“It’s a miracle, for us and for the doctors,” says Raquel, the little boy’s mother. These residents of the Murcian neighborhood of Beniaján have seen their lives change from one day to the next. Suddenly, her son went from having a healthy and normal childhood to being diagnosed with high-grade anaplastic astrocytoma, a brain tumor with a survival rate of between six and twelve months. Two years have passed since that night in the emergency room and the tumor has disappeared.
“In a month we will have the child’s fifteenth MRI. They want to make sure the cancer is gone. We had a month and a half of respite, but sometimes you don’t know what is worse, the aftereffects or the cancer,” says Miguel, his father. Miguel and Raquel speak with the rawness of those who have been through a lot, but they go beyond their language when talking about their son Julián. Their only son needs the constant care of both his parents, who do not work to focus on his health, but both insist that it is worth it to see him happy.
How do you remember the diagnosis?
Miguel: It happened on August 20, two years ago, out of nowhere. We didn’t know anything about tumors, we didn’t know anything about brain cancer. The tumor showed its face because it exploded the child’s brain, as it seems. He had had a stroke. They told us there would be no way to save his life. But the neurosurgeons and the Virgen de la Arrixaca Hospital managed to operate successfully.
Rachel: That day I remember we were at a family dinner and he was starting to feel bad. At first we thought he had heat stroke. These are things that come through the door without knocking. Today it was my turn and tomorrow it could be your turn. The world collapses on you, we spent 72 critical hours. Then we spent three months in intensive care.
How did these months go?
A: In the intensive care unit, he was put in an artificial coma so that his brain would relax. When they woke him up at first, he didn’t talk or anything. And the first smile he gave me was when he heard a video and he said “Mom” very weakly, because he didn’t have the strength.
M: We always start with the empty date. We’ve been burying it for two years, breaking the statistics.
That must have been very hard.
A: Being in ICU and ER, we never cried in front of him, anywhere. We always made a clown face while laughing. We were in ICU last December and a baby from the ward unfortunately went to heaven. We support their parents. “Don’t cry in front of him, even though I know you think he’s unconscious, but he notices it,” we told them.
M: In oncology, I was always there trying to give life. For most parents, it is beyond them, it is normal. Others have to work and the mother of the child is left alone. I dedicated myself to being there 24 hours a year and a half with them. Of the 20 children who were with Julián in oncology, only three remain.
The Vatican Oncologist
After 27 sessions of radiotherapy and a week of chemo, Julián’s condition worsened further: “They told us that they couldn’t do anything, that part of the tumor was still in the optic nerve and that we had to stay with him as long as possible,” Raquel remembers.
At that time, the family entered palliative care, where they still are today. But a follow-up MRI in April changed everything: “They said the tumor had disappeared. Since then, we have had many MRIs and the tumor does not appear,” reveals the mother. “The Vatican oncologist even called us to announce a miracle, he said,” explains Miguel.
“We are tired, it’s absurd,” admits the father. It’s been two years of illness, unforeseen events and bad news. But little by little, the good news begins to creep into his daily life: “Even though he’s in a wheelchair, my Julián walks, he can’t walk alone, he has to be with us. But go ahead. He also eats alone. The neurologists, when I told them that Julián had put the spoon in his mouth, they didn’t believe us,” remembers Raquel.
How do you live with the consequences?
M: The consequences lead us down the path of bitterness, because they have caused a lot of damage to many hormones in the body that are located in the brain. It is difficult, but he continues to fight.
A: The tumor affected the frontal area, responsible for behavior, it hits you the same way it kisses you. He also lost a lot of mobility. But Julián was a very spirited child and always had a lot of strength and energy, I think Julián is fine with his problem. Of course, he is alive because of his energy, because of the fight that the child has.
Did Julian go back to school?
M: If nothing happens, he will return to school. Let’s take him to his usual school, which has an open class.
A: The first day they wanted to send him to a special education center, among other things because sometimes he falls back into his chair.
How did you manage to keep it in its reference center?
A: We knocked on many doors within the Diversity Attention Service and managed to recruit a Technical Pedagogical Assistant (ATE) in the center. In the end, this professional benefits not only Julián, but also the entire open class. Julián was only able to teach one month of classes this year, the rest he spent in the hospital or at home with palliative care.
A letter from Felipe VI
During his illness, little Julián can boast of having met his idols: “The famous tennis player Alcaraz, the cyclist Valverde, many footballers, Real Madrid,” his father lists in an endless list. “Famous people have helped me and shown me how many people are aware of cancer.” Last year, he received a letter from Felipe VI, King of Spain: “His Majesty the King is informed by your parents that you are cured at the Virgen de la Arrixaca University Hospital in El Palmar and he orders me, on his behalf, to convey all your support and to send you, with a very affectionate greeting, the attached photo, with the wish for a complete and speedy recovery, which I am very happy to do,” the letter reads.
Who were you most looking forward to meeting?
M: To the armies he says “long live Spain”. The Air Force, where he is a favorite son. What he likes most are motorcycles and all the members of the army or security of this country.
Who do you need to know?
M: My son’s dream was Cristiano Ronaldo. That’s why I started a social media squabble with Cristiano Ronaldo, to see if he knew him.
Miguel and Raquel remember that there are thousands of parents and children in their situation and that any help is minimal. “I made a fortune in construction and I can go tomorrow, but who stays with my son? He needs the care of both parents,” Miguel emphasizes. “When you find out that your son is like this, most of you have to leave your job, your company, mortgage your house. You are told that your child is going to die and many turn to private clinics.
“The child has an allowance of 390 euros, plus what I receive from unemployment. With that, they expect us to support a child who needs constant assistance. Without the associations, I don’t know what we would have done,” Miguel complains.
For these parents, the associations are a real lifeline: “As an association, we have two psychologists, a social worker and two educators,” lists the president of the Association of Parents of Children with Cancer in the Region of Murcia (AFACMUR), Felipe Palazón. “The two psychologists are there to provide a little emotional support throughout the process. Exactly. “Cancer is a difficult disease to accept when it comes to a child,” adds Palazón.
“After many years of work and many struggles, important things have been achieved that people normally ignore. For example, if both parents work, one of them can reduce their working hours by up to 99%, that is, they can practically stop working and continue to receive the benefit for having a child with cancer,” explains the president of AFACMUR.
However, he continues, there is still much to be done: “There is a home care service offered by the Ministry of Education of Murcia and sometimes it is deficient,” he laments. “Initially, a solution was chosen, which was ideal, where the child’s teacher, instead of supporting him in another class, his teacher went to the home to support him there. But this does not always happen,” he adds.
Julián, thanks to the care of his parents, remains oblivious to all this. They try to give their life as much normality as possible. A life possible thanks to a true miracle and the support of the doctors, who continue to dedicate themselves to the little one. Raquel is grateful that “all the doctors in the factory know him and ask about him. We recently met one of the nurses who took care of him the first night; We didn’t believe that our son was doing so well and with us. “He started crying.”
