Hi, my name is Victor.
When I was five years old I was diagnosed leukaemia. I had always been a very active and happy boy, full of life and enthusiasm. However, near the end of December 2013, I looked tired, I lacked colour, I seemed crestfallen. I was not the usual Victor. My parents took me to the doctor and, at first, they didn’t think my condition was particularly important; it could be anything, not necessarily something significant. However, a few days later, my parents noticed that my exhaustion, and the yellow colour in my skin, hadn’t gone away. Alarmed, they decided to go back to the doctor. This time, he ordered some blood tests. They were taken on January 9, 2014 in the morning, on my daddy’s 43rd birthday. At 4 o’clock, daddy received a call from mummy… Apparently, the paediatrician had left an urgent message. I didn’t know what was happening, but daddy told me that we’d have to rush to the hospital that same afternoon, and that we’d spent some time there. It was devastating for my parents to find out that I had leukaemia. At the time, I didn’t notice anything special, only that my parents seemed a bit nervous. Now I know they were pretending to be all right, so as not to alarm me. Inside they were scared, distraught, and battling not to cry. They will never forget that day…
I spent quite a while in hospital getting tests done, and that night I was admitted to the 6th floor of La Paz Hospital, in Madrid. There they confirmed that I had leukaemia, and planned what to do. A very long road awaited me, full of obstacles and hurdles, in order to save my life. It was not just the disease that changed all our lives. The fact that I had to spend almost a month and a half in hospital placed the whole family under a lot of stress. My sisters, Aina and Ingrid, who, at the time, were seven years and six months old, respectively, were scared; they didn’t understand what was going on. “Why is Victor not at home?”; “Why are mummy and daddy always in the hospital, taking turns and not sleeping at home?” My disease was also very distressing to them, and it was hard for them to get used to the fact that things had changed, that mummy and daddy could not always be with them. To make matters worse, we didn’t have family to help on an everyday basis: my grandparents live in Seville and in Barcelona, so we were all alone in Madrid.
The days went by, we followed the protocol and began to get used to chemotherapy, cortico-steroids, antibiotics, gastric protectors and the terrible side effects of my treatment… mucositis, pneumonia, fever, neutropenia, etc. We prayed to get by as well as possible. The doctors regularly carried out tests to assess my evolution. At the time I didn’t know this, but these tests were essential to see whether I was getting better. Mummy and daddy suffered terrible stress. However, after almost 45 days in hospital, the day came when the oncologists allowed us to go back home. From then on, I was regularly hospitalised, whether to receive treatment, or as a result of neutropenia, fever or of other side effects of chemotherapy. I was admitted to hospital practically every month; you can imagine my parents’ anguish. We spent almost a year this way, our hearts full of fear at what could happen. I never saw mummy or daddy crying, or sad or crestfallen, they always seemed happy, full of energy and hope, although sometimes the expression in their eyes betrayed them. They tell me now they took their cue from me: I was always positive. They felt they could not do less than me, when I was doing everything I could to survive. In situations as difficult as ours, one has to take a positive attitude, and face it as best one can. This is why I always tried to be positive and happy, and show my parents that everything was all right. I never complained, I bore everything as best I could to make them suffer less. Thanks to my and my parents’ sacrifice and effort, as well as to the chemotherapy, I am slowly getting better. This is a gradual and exhausting, frustrating process, but we are seeing the light at the end of the tunnel. However, we keep our feet on the ground and are very cautious: my disease is more than a mere cold. It keeps giving us shocks when we least expect them, and everything can go awry in the wink of an eye.
Daddy always says that, in spite of the terrible circumstances, we are actually really lucky. The fact that we live in Spain gives us access to Spanish Social Security, which is bearing the cost of practically the whole treatment. This treatment is very expensive, and would ruin any family, which is what happens in other countries. We live in the region of Madrid, close to the best hospitals, with the best oncologists and nurses, so we live at relatively near the hospital, and are always close by in case of emergency. The volunteers at La Paz, and the different associations have given us lots of support, and have shared their time with us during these difficult times, which is something that money can’t buy. There are marvellous people in the world who donate their blood and bone marrow to save other people’s lives. Their generosity will be repaid, here or in another life. Most of all, it seems that things are going as well as they can; for me, every day entails a risk, but little by little we are overcoming them. This is why we must feel thankful, even if it is difficult to understand and to accept why a boy who is full of life develops leukaemia or any other serious disease, making his whole world collapse.
Let me send a big hug to everyone, and my heartfelt thanks to everyone contributing to research on this disease. Let us not forget that, unfortunately, cancer can happen to any of us at any time. In the past, fewer children overcame leukaemia. We must continue to encourage research so as to achieve even better results in the future, because there is still a long road ahead. Let us remember the importance of research to beat this disease, and all the rest.
Víctor