Now she is 30, she works in Manchester (United Kingdom) as a graphic designer and although the cancer she suffered as a teenager has taken its toll on her – she is still in pain and has a prosthesis in her leg -, it has been more than a decade free from disease.
On International Childhood Cancer Day, Andrea tells EFEsalut about her experience as a teenager. He does it from Brussels, where he is for a few days as he belongs to the European organization of young people with cancer (Youth Cancer Europe, YCE) and has had several meetings.
Pediatric tumors are rare diseases that affect a little more than 1,000 children in Spain each year. Survival is in 80% of cases, a figure that has changed little in recent years. Andrea was told she only had a 30% chance of going forward.
He remembers perfectly that he was in his mother’s village when the pain in his knee started. “They told me not to worry, it will be tendinitis, but it continued to hurt to the point where I had to bandage it and take ibuprofen because it swelled up a lot,” he explains.
A seen and unseen
He went with his aunt, who was a nurse, to the health center in Zamora, his parents stayed in the village, no one thought it was something serious. There they took an x-ray and the pediatrician told them they had to go to the hospital “because it didn’t look good”.
After an MRI and a CT scan at the hospital, the next day he was at the Niño Jesús Hospital in Madrid. “It was something seen and not seen practically”, points out Andrea.
“I was very disoriented, it also coincided with the move we made from Extremadura to Salamanca, with a new school and everything. The doctor told me I had Ewing’s sarcoma and I thought, but what is this gentleman telling me? It was all so fast… They organize your schedule practically for a year and I said, because that’s what it is”, he says.
Ewing’s sarcoma is a malignant bone tumor that forms in bone or soft tissue. It mainly affects teenagers and young adults. Andrea’s had the worst prognosis, he adds his mother, Pilar Flores, at EFEsalut.
“You don’t believe it, you hardly have the option to think, in our case everything happened so quickly that the only thing you want is for him to recover. It never occurred to me that it was going to go wrong. Maybe it was a resource of mine to be able to wear it”, adds Pilar, who is also the manager of the Spanish Federation of Parents of Children with Cancer.
Andrea was also optimistic.
The vomiting, the fatigue, the cold begin…
He started treatment and with it came fatigue, vomiting and hair loss. He lived practically a year in the hospital. He didn’t stop studying, he followed the course through the Nen Jesús hospital classroom.
He remembers having his head “stuck like an ostrich in the pillow” and “pissed off at the world” because the vomiting was very uncomfortable and above all, the cold he felt in his head, which is why he always spent the day “with the hood on”.
Each cycle of treatment was five days, then he had several pounds and had analysis done to control the defenses; if they were low, he entered again, so that he was joined with the next cycle.
But then he left the hospital like his leg didn’t hurt anymore and he could walk better, he wanted to do things, he wanted to move. At three months he had an MRI and a spot on his lung had disappeared. The treatment was working. He also underwent an autotransplantation of his cells.
“I spent a year with her suffering all the treatments, the after-effects, but she made it easy, she is a child with a spirit that accepted everything, and she has always moved forward. But, without a doubt, cancer is a catastrophe for the family, it is a turning point in life”, says his mother.
The ordeal of the leg
And they operated on her, took out the piece of her tibia, where the tumor was, and put in titanium plates with a piece of bone from the bone bank. One of the problems was that the plates and screws that put it in broke, it even bent an internal nail in the tibia. His body was breaking him.
He had to be in a cast for five months.
“The theory is that because the bone was not strong enough, it was the plate that was holding the weight, but I don’t know if it was that or what,” points out Andrea. The fact is that a year after starting the treatment he was free of illness, but his leg continued to give him war.
In the last fifteen years he has had several prostheses. Until in 2021 he decided to have part of his leg amputated. They had tried everything, but she was still in severe pain.
Now it’s still in pain, but much less than before. He has phantom limb syndrome, meaning he still feels as if he has part of his leg and foot missing. “The issue of pain is already a long-term side effect of the chemotherapy of the punctures in the hip and that it had generated quite a bit of scoliosis and now everything is readjusting and it hurts”, says the girl.
Life after cancer
She beat teenage cancer. Andrea is 30 years old and has been living in Manchester for four years, a city she moved to for love and then for work. He studied Fine Arts in Salamanca. She is a graphic designer, she has not lost a year of high school or university.
And what would Andrea say to a boy or girl in full adolescence who, like her, has been diagnosed with cancer?: “I would tell him to take it day by day with the best possible attitude, not to use Google a lot and to support people who has gone through the same thing. What is a big whore? yes, but time will pass, too.”
The girl has been part of the YCE, formed by youth cancer organizations from all over Europe, since 2014. And she is also involved in a two-year project to create a European network of young cancer survivors. That is why he has traveled to Brussels, where he has had meetings with Childhood Cancer International (the international organization for childhood cancer).
Cancer units during adolescence, research…
From her experience, Andrea would like all hospitals to have adolescent units because in these cases you are either with younger children or with adults. She was lucky, at the Baby Jesus they always try to put them with the friends they make during their stay. Their mother also claims that they should not be with adults under any circumstances.
Pilar also underlines other claims of the Spanish Federation of Parents of Children with Cancer such as that parents can be with them 24 hours a day during hospital stays and seven days a week. And that the rooms are equipped for the companion. She spent a year sleeping in an armchair.
Research is another of the needs identified by the Federation but also theto the Spanish Society of Pediatric Hematology and Oncology (SEHOP) i the Spanish Pediatric Association (AEP) which calls for a legal and logistical framework that facilitates the inclusion of patients in clinical trials.
The two societies consider it “especially necessary” for all the autonomous communities to have pediatric palliative care units and home hospitalization to guarantee the best quality for the patient and his family “in the final stages of their illness”.
They insist that pediatric cancers are rare diseases that need the attention of multidisciplinary teams and that it is recognized, as in other European countries, the specialty of Pediatric Oncology and Hematology.
Networking between units of greater and lesser complexity so that children and adolescents with cancer benefit from the best diagnosis is another of the requests that the SEHOP and the AEO collect in a statement on the occasion of this day.