Eduardo tells us his family’s story of isolation during his son’s cancer treatment and the impact of it on them.
WIFI, Netflix, Amazon Prime, HBO, you have all the entertainment in the world, all the social networks, all the advantages of being at home and with your family. The comfort of sleeping in your own bed, having your belongings around you, your shower, you can read new books or enjoy a TV series. The possibility of opening a window in your house and feeling the wind on your face, going for a walk on your terrace. Playing a thousand games with your children and rediscovering old forgotten games in the drawer. Doing homework with your children and spending time reconnecting with them. Being able to communicate with your family through Facetime, Hangout, video WhatsApp without the worry of consuming too many gigabytes. You can cook fresh homemade meals, make many coffees, open a bottle of wine that you kept for a special occasion or take a cold beer from the fridge. You can go down to the supermarket to do the shopping or go to the pharmacy. You can even chat a little more with your partner and who knows, you may even fall in love again and there will even be a baby boom at the end of 2020.
This is the isolation to which the politicians have confined us, to try to keep the Coronavirus from spreading any further than it already has. It seems that many are feeling lost by all of this, so I am encouraged to tell you all what a true isolation is like in a child’s oncology room, when your son´s life hangs by a thread. If we, and so many other families, have overcome it, I think it is clear that together with a little effort, tranquillity and solidarity, we can achieve it – this is what the doctors tell us.
In 2013, a month and a half after the birth of my second son, Mateo, he was diagnosed with a terrible Leukaemia (chance of one in a million and one of which there is hardly any information) and the prognosis they gave him was that they did not know if there was going to be a tomorrow, a future for us. That is the introduction with which they isolate you.
We met the research doctor Antonio Pérez-Martínez, who would later be head of the Haematology services in La Paz University Hospital and responsible for the incredible Advanced Therapies Unit that the CRIS Cancer Foundation built on the eight floor of the hospital. This Unit gives so many welcome hopes to the newly diagnosed. When your child is going through an oncological process, without defences, you have to be aware that many viruses can kill him. If in the few days that you are at home and your other son has a few tenths of a snotty nose, you then have to banish him with a relative when he really needs the pampering and care of his parent. Your child cannot crawl on the floor, or be with other relatives, or suck things, or can practically do nothing. He becomes a kind of ‘bubble boy’ with sterile soap for him and his parents. All this while chemotherapies and a thousand medicines destroy him inside and you experience the parallel anguish of finding a bone marrow donor, waiting and hoping for the transplant and from then on you are in total isolation.
A small hospital room immediately takes over you, where you cannot regulate the temperature and there is sometimes no window or if there is one sometimes there is no blind or it is broken, and then you are in darkness for 24 hours. There, while your child is hooked to droppers and pumps, fed parenterally you discover what total isolation really is. If your partner (which not always possible) can give you relief, you go out take a break and when you enter the room again you must change your clothes to avoid bringing in germs and change your shoes, masks and gloves. You entrust yourself to whatever the situation requires and then your analysis of the day is that it is not as bad than that of the previous day. You are able to discover words of hope at the doctor´s visit. If the medication has not caused a failure in another organ (spleen, kidney, liver…) there is a party inside the hospital cubicle. Your son will have vomited several times already that day and you do the impossible to not panic by thinking about a rejection of the transplant or medication. You have almost nothing to distract you, you have used up all your data and the WIFI does not work, so you sing out the chapter of Mickey Mouse that you already know by heart.
Time goes slow, very slow, too slow, every minute is an hour and every hour a day and the day a week. You climb the walls of the room where your child´s crib/bed fits and a reclining chair or sofa where you try to sleep, always alert and vigilant, you hear the dripping and beeps. Hot water may even stop running in the room and you have to go heat the water for your child’s bathroom with a plastic bottle to a microwave and upon returning to the room, obviously the whole ritual of changing clothes again begins. With regards to food, I think everyone is aware of the hospital food. Hopefully your son discovers that you have a smile on your face after a week of confinement and in parallel your other son imagines seeing you in the same way when you manage to make a video call and also asks you when you will come home.
I can assure you that this is an isolation that all parents who have undergone an oncology process with their children have experienced. Adults and others with rare diseases also live it. That is a true isolation. What we have all been asked to do now is for social responsibility and our health and is certainly much more bearable. For those of us who have been there, the social isolation now is the equivalent of Disneyland.
And despite everything, in that isolation, we were able to smile, laugh and cry, sink and get up as many times as necessary. We were able to discover wonderful nurses, guards and doctors, all who cared so much for our son and every one of those diagnosed. There, in that room (now fortunately there is the incredible CRIS Unit of Advanced Therapies to investigate better and save more lives) we discovered the magic of little things. We learned to enjoy the moment, to celebrate a smile, to cheer a day without vomiting, to be tightrope walkers between the life and death of our son. We were able to celebrate the small victories of the day and even his first birthday. We learnt to take nothing for granted, to communicate with our eyes when our mouths were covered with masks, celebrate everyday life as extraordinary. We were able to meet many parents in the same situation; parents who became part of our family.
So, let’s listen to the doctors. Let’s turn this confinement into something extraordinary to give the best of ourselves and help the doctors who ask us to stay at home to stop the curve.
And also, let’s not forget how important it is to INVEST IN RESEARCH. Research saves lives. Doctors like Antonio Pérez Martínez with his wonderful team in La Paz and the CRIS Unit, at October 12 Hospital, Madrid, and so many other researchers and doctors from many hospitals spend their lives doing research, investigating disease. They give us reasons to hope every single day.
Stay in your house. For you, for your family and for all the sick people who need it.