“My name is Abril. My parents always tell me that I am a brave little girl. And I want to tell you why ”.
It could be the beginning of a fictional story, but it is the life of Abril who, at only eight years old , can be said to have been reborn twice. At just five months she was diagnosed with cancer : congenital acute lymphoblastic leukemia. After a bone marrow transplant he went ahead with only a 10 percent chance of doing so. Three years later, he had a relapse and a clinical trial saved his life.
That was three and a half years ago and today, Anna and Jordi say, that she is one more girl, happy, very happy, the happiest in her school, and also the bravest, the strength of her parents.
A baby who underwent chemo and bone marrow transplant
Anna’s voice still breaks when she relives the image of her baby. He was only four months old when he started with ‘moquitos’. But after several treatments, the congestion was increasing every day. This mother recognizes that this was the first big blow that life gave her, when what seemed like a badly cured cold turned into an infant B lymphoblastic leukemia , with a very poor prognosis.
“They quickly put her in an ambulance and took her to the Hospital de San Juan de Dios in Barcelona, because she was very serious. Her chances of survival did not exceed 10 percent and she had to be isolated. I couldn’t even accompany her in the ambulance! “
Anna admits that it is very difficult for her to explain what she felt at that moment, because “it is not in the plans of a family to think that a child can die. It is unnatural. Hopelessness assails you, you feel anger at everyone , you wonder why it had to happen to you ”.
But he also points out that there is little room for regrets:
“You have the wonderful idea that I wish we closed the games and a year had already passed. And, although there was little hope, we clung to those few possibilities.”
Four days in the ICU and the pre-chemotherapy treatment worked. That was followed by six months of nonstop chemotherapy to get rid of the damn bugs. And then, Anna explains, the second hard moment arrived: the search for a compatible bone marrow , “because neither her father nor I were compatible and she needed her to continue fighting, because her leukemia was very aggressive.”
The Josep Carreras Foundation found the ideal core. Again, a hard and long, very long, stage.
They had to go to the Vall d’Hebron Hospital and enter a tiny isolation chamber of only six square meters, their home for two months. Until the day finally came when the three of them could go home. But the journey was not over yet: there were still many, many hard months of isolation at home, and with continuous visits to the hospital.
Three years: start school and relapse
It is when she begins school, when she begins to live as a child, something that she had never been able to do. In fact, he had never played with other children until the very day he started school at the age of three. Had three years.
Then, when it seemed that the worst had passed, the brutal news arrived: the dreaded relapse came only a few months later. “And all the fears reappear suddenly and even multiplied, because you already know what awaits you and it is very hard to go through it again, to see your daughter suffer,” acknowledges Anna.
Fate would have all the stars aligned so that Abril participated in a clinical trial with immunotherapy, CAR-T 19, which arrived from Philadelphia, and her life changed.
Her mother explains that her recovery was much faster: “in just one year she had already returned to school and could even have returned earlier, but as she was still young we decided to delay her reincorporation as long as possible.
“His life is now the same as that of another child”
From that essay three and a half years ago and her mother explains that Abril leads a life very similar to those of other girls her age : she goes to school, does ballet and plays the violin. As the only side effect, his lymphocytes do not work well, forcing him to transfuse antibodies (gamma globulins) once a month. “They used to do it in the hospital. Now, at home, subcutaneously . “
Gone are very hard moments, which they will never forget and they discovered how strong and brave a girl can be :
“Otherwise, we could not now talk about it as we are doing. At five months old and with such an unflattering diagnosis, she clung to life and struggled. It has to be tremendously strong to withstand so much cortisone, the transplant, then the relapse, with only a few months … And here we are ”.
Anna adds that “ in general all children are very strong. They only think about playing, on a day-to-day basis. * “So they can have a bad day, but as soon as they raise their heads a little, they laugh again, they play and they live in the moment. Unfortunately we adults are not able to do it and we give everything a thousand turns”.
Because inadvertently he remembers that other scare, when he had a complication, he drowned, and the doctors were sure that it was a secondary lymphoma. And the image of her little girl comes to her, intubated, subjected to biopsies. Until they confirmed that the setback was due to a side effect of the cortisone medication.
“A smile from April kept you going”
As parents, it is difficult for us to imagine how you can maintain your composure in front of your daughter, when you see her so sick and you do not stop crying inside. But Anna assures that it was April who succeeded: her smile, her desire to play.
“Playing and singing, because you couldn’t entertain such a small girl with TV. Playing an instrument (our profession) and the songs helped us to move forward and to spend the long hours in the hospital. “
When she was admitted as a baby, her mother told us that she had been living in the hospital for six months, so she and her father took turns to rest: “In addition, we were lucky to have her grandparents, who gave us relief so that at least Jordi and I could eat together. “
With the relapse, her family situation had changed. His sister Alba was seven months old, so they went to Barcelona (they are from Santpedor, Bagés), to be as close together as possible. He explains that although Alba could not visit Abril, at least they saw each other through the tablet.
Here, too, they felt supported by the whole family (grandparents, uncles) and they helped them cope with such difficult moments.
For Alba and Abril, cancer is like the flu, something everyday
We wanted Anna to explain to us how her little daughter Alba is dealing with her sister’s illness and she assures us that she has always lived knowing that April has had a serious illness, but that being so young she does not know to what extent: “In fact, when they play with dolls, she has one with cancer. For her it’s like a cold. “
She adds that the little girl is used to April having to go to the hospital, take syrups, but she gets along well. She is still small and has lived with it since she was born. “Sometimes he even asks you to take them just like his sister.”
“But we all live step by step, always hopeful and afraid that something will go wrong.” In any case, she admits that she is very controlled and that is also reassuring, because they do analytics every three months and different specialists follow her to make sure that everything works well.
My best advice to other parents is to trust their children.
Anna assures that it is difficult to give advice to a family that is now suffering because their son is fighting cancer, because also “each child is unique and each treatment works differently. It cannot be compared, because that can only last a year.”
April’s mother also assures that we must trust doctors and research , because fortunately new treatments are developed every day that can make cancer stop being fatal: “When our daughter relapsed we had an open door to treatment with much less toxicity and better diagnosis that did not exist when he first got sick. “
But he adds that, above all, parents should have hope and not give up, that they have to move on, because children are stronger than we think and they give us unique life lessons.
Photos | Courtesy of Anna Santamarina
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