A letter from Alfonso, from Madrid, to he José Carreras Foundation. He is the grandfather of Irene, a 5 year old Acute Lymphoblastic Leukaemia patient.
I am Alfonso, the grandfather of Irene, a young girl who was diagnosed with Acute Lymphoblastic Leukaemia (ALL) on the 3rd of May 2010. Irene was born on the 31st of December 2006, and is now 4 years old.
Today at her young age, she is focused on a new world, despite her treatment. She is a lively and playful girl, surrounded by her own reality (her disease). Her games are divided between Dr. Alvaro, in the day clinic at the Niño Jesús Hospital in Madrid, and me.
Her games? When I visit her in her room she pretends to be Dr. Álvaro. I have to knock and ask for permission to enter. Once inside, Álvaro (Irene) says hello and asks, "well, what would you like to know?" "I am the grandfather of Irene Maneiro Rojas" She answers back with "yes, yes but what would you like to know". "I would like to know the state of my granddaughter" I declare. "Well I have to inform you that she is doing much better and that she can lead a normal life. She cannot come in contact with Nuca (her little dog) but she can go down into the street, and go to the cinema ,etc. All that with a mask on, of course. Let's see...you are going to have a puncture in the bum but it is not going to hurt. Later next week I will have to make a puncture in the back but I will put something on your nose so that you will sleep and not feel a thing". "Well, what else would you like to know?" she asks again. "No, no nothing else", I say. "Well I´ll advise you to keep an eye on her feet" she continued, "to see if they are better or worse, to see if she needs platelets or if she is tired. Finally, you need to keep track of everything and if you notice a fever it is very important that she is brought to the hospital by you or her father, is that understood? "Yes, Dr. Álvaro" I say "thank you very much for the information". Irene acknowledges this "don't mention it, well you can go and wait outside or, in the theatre, as they call it. We have to take a blood sample to see if the bugs have been removed from the blood but it's nothing". "No, no well I hope so". I respond.
We can pass hours playing and living in the world as she sees it. When she is not with the nurse she has two days of classes a week. When I arrive at her house, the first thing she says to me is that I have to "disinfect" my hands; otherwise there will be no kiss.
With this small story I want to show understanding for those families with loved ones who are sick with whatever disease, that no matter how low we feel emotionally we need to help them in their worlds. Once we are in their world we need to enjoy it with them. This way our face transmits safety and most importantly trust between the patient and the doctor.
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