Marcos was five and he was very happy: he had a new baby brother, a new and bigger house, a school he loved, a wonderful family, many friends, and parents who adored him. He had always been strong boy, with good health and in peak physical condition. He loved playing football and races, any races: biking, running, jumping, climbing …
One day, he was walking in the street when he suddenly stopped and said, “My leg hurts.” I remember the moment perfectly. However, at the time, I could not imagine that, from that moment on, everything would change so drastically. I remember the exact date and the exact place where he said it, what he was wearing, what we had done before, what we did afterwards. There followed three months of mistaken diagnoses, each more serious as the symptoms intensified. Three months of running around in circles, with ever greater anguish; but we still could not begin to fathom the gravity of the situation. The three months ended with a biopsy to determine whether our child had a serious infection in his femur or a tumour. There were only two possibilities: heads or tails, infection or cancer. Tails: cancer.
That was a terrible moment. Marcos’s life, and our own, collapsed like a house of cards. The blow was physical, I felt it in my body, in the palms of my hands, in the soles of my feet… I heard a hollow scream inside my head, I felt that a frozen fire was destroying something forever. At the time, I didn’t know exactly what it is that is being destroyed. Now I do because, since then, I have been living without it. Our calm, our security, our confidence, our joy as we had known it, was destroyed. The empty space they left was occupied by fear, a visceral, deep, primitive fear, the fear of losing what we loved and valued the most, the cornerstone of our lives.
This was the first time we heard the name of the disease: “Ewing Sarcoma”. We were referred to the children’s cancer team at Hospital La Paz, and the very next day Marcos began to take the necessary diagnostic tests to establish the stage the disease was it. We knew its awful name, cancer; now we had to find out its surname.
At first I felt as if I’d already lost your child, that he was going to die, that there was nothing to be done. However, the morning after the diagnosis, before leaving for to the hospital I heard a piece of news on the radio: there had been a terrible accident at a playground, and a little girl had died. This was a groundbreaking moment for me: I realised that, however awful our circumstances, so far no one had phoned us to tell us that our son had died. Our son was alive, and we had to fight: the battle had just begun.
After many tests, the conclusion was that the cancer was located in the proximal area of his left femur, although there were already indications that it was moving down by diaphysis. Marcos’s condition worsened during these days. The pain became more and more intense, and he couldn’t stand it. He had to be admitted to hospital to try to alleviate the pain, but it was very difficult to control and he was suffering terribly.
We had to talk to him. He was very scared: he felt awful, he was in hospital, the tests terrified him, he wanted to go home, he wanted to be with his brother, he wanted everything to stop. He was frightened of being hospital: every time someone opened the door, he would ask, anxiously, “What are you going to do to me?” He wanted no more injections or medicines. We told him the truth, but in words he could understand. We knew that the first time he heard the word “cancer” it should be from us. We told him that we had been very worried because we didn’t know what was happening to him, but that now we knew: He had a disease called cancer, which was very serious. The treatment would be tough, but he would get better, and we would be together all the time. We told him that he would feel unwell, that his hair was going to fall out and that he had to stop going to school. Not going to school was the hardest thing for him to accept. He asked us to explain everything several times, to help him understand what was going to happen to him.
We didn’t tell him more. We didn’t tell him that his disease had high mortality rate. We didn’t tell him he had to have an operation. We didn’t tell him he might lose his leg. We didn’t tell him – but we had a clear opinion. He could live with one leg, we felt; he couldn’t go on living if we didn’t stop the cancer. Our goal was to get out of this hell, even if we had to lose a leg on the way. However, even this radical solution gave us no guarantees. This is an area where there are no guarantees, there are no certainties, the disease is too dangerous. From then on, we would live on the edge of the abyss, trying not to look down too much.
The plan was for him to receive six very aggressive chemotherapies before surgery, and eight less intense chemos after the surgery. If everything went as it should, the treatment would last one year. He had to give one year of his life to a fierce fight against cancer in order to have a future. Our life, as we had known it, practically came to a halt. We felt as if we had been forced to get off a train. We noticed that, around us, people’s lives went on, children went back to school, our other child had to try to live a relatively normal life, but it was so hard …
We put our son’s life in the hands of people who were then perfect strangers, but who in time became essential to our family and our future. The only thing we could ask of them is to do everything for our son, to be motivated to cure him, to avail themselves of every resource they had for him. The time for chemo arrived, and it was terrible: the side-effects were awful, and kept us in hospital a long time. However, from the first we had reason to hope: the pain in Marcos’s leg practically disappeared.
Marcos amazed us by the way he faced his disease. From the time we explained everything up to now, he has never complained about having to stay in hospital, about the treatment, about losing his hair, about having to take a million precautions. The hospital and its staff are key in this. In the hospital we experienced a tremendous current of empathy among all the patients, those who had been there much longer than we had, those who started at the same time as us, and those who came in later. We were all on the same boat, United by fear and hope, uncertainty and waiting, desperation and strength.
A crucial milestone arrived: they were going to operate. The team presented us with an exceptional but very complicated and dangerous solution. The goal was to take out the tumour and its action radius, but keep the leg. This was pioneering surgery: Marcos would be the fifth child in the world to receive it, and it had never been done in Spain. We trusted the medical team fully, and gave them the green light. The operation lasted more than 16 hours. Once again, we were risking everything: heads or tails. It was essentual to take out the whole tumour. If, later, they could reconstruct his leg, better. This time we were lucky: he came out of the OR without the tumour, but with his leg. We didn’t know what he would be able to do with this leg, but at least it was still there. The postop was awful. Once again, we saw Marcos suffer terrible pains, which he bore admirably. The test results were very good: the tumour they had taken out was practically dead. However, there was still no time to lose, we had to continue with the treatment. We could not give the disease any leeway: if you let down your guard, cancer gives you no second chances.
During this stage, Marcos was confined to a wheelchair, as it was essential that he make no kind of effort with his leg. He understood this, and didn’t complain. He ran and played football in his wheelchair; he lived his life in his wheelchair.
We spent the next few months full of fear and hope, treatments and tests; a time of terrible shocks but also relief, a non-stop rollercoaster. During these months, time fluctuated strangely, sometimes passing incredibly slowly, others in the blink of an eye. Our memories of these months always have the same backgrounds: the 6th floor of La Paz Children’s Hospital, the Haemato-Oncology surgery, the hospital cafeteria, where we rested after tests, the ER… These places were so foreign to us before all this happened, but afterwards they seemed like our natural habitat. Even so, at times, I would stop and look around, as if for the first time, and think, “What on earth is my son doing here?”
When the treatment was over, our feelings were difficult to explain, because the joy and sense of freedom is mixed with fear and anguish. One feels a “fear of flying alone”, realising that the terrible chemotherapy somehow felt like a sort of safety net. You don’t hear what you want to hear; you don’t hear, “Your son is cured.” You don’t hear, “Your son is out of danger.” You know you will never hear this. What you do hear is that you are entering a new stage, of regular checks, which will mark time, the same as holidays or the beginning of the school year or the calendar year used to do. Lately we feel that our lives take place between each review, every two months. Still, this time is full of moments lived with the intensity of one who has lost everything but recovered it. We live the joy of coming back to our daily routine, of trying to regain “normal life”, although we are no longer quite “normal”. Our feeling is that Marcos is not normal: he is exceptional, a gift life has given us, our greatest joy. Life has showed him her worst face, has challenged him to the hardest battle, and he has won, with the innocence and courage of the greats, those who give it their all and never stop fighting. Every day, every single day, we look at him and his brother and tell ourselves: “How lucky we are to have you with us.”
Now Marcos plays, dreams, laughs, cries, enjoys himself sometimes, and is sometimes bored… And he also jumps and runs, not as fast as before, but more intensely, more bravely. And nothing stops him. Marcos has fought, and so far he’s winning.
There are many children who fought like him, but who lost the battle. Every day, parents sit next to their child’s bed and tell him he can stop fighting now, that he can rest and fly away, far from pain and disease. This happens when there is no further treatment. My son responded to medication, but this is just the luck of the draw. We need second and third lines of treatments for patients who do not respond. (Marcos’s disease does not have any: we risked everything in one hand). When we speak of children and adolescents with cancer, we always use the adjective “fighters”, which they are, because they fight until they are exhausted, because they are very resilient. However, many do not have suitable weapons to fight: some of them face the toughest battle unprotected. We can change this: there is a weapon to fight children’s cancer and other haematological diseases: research. Research holds the key to everything: to Marcos’s future and that of so many other children, adolescents, adults. These diseases affect us all. Research is life.
Thank you for your support.