"MUM, HAVE I GOT LEUKAEMIA?"
Hi, I am Mariela, I am 31 years old and I am from Asturias.
In 1994, I was missing school to sleep; I was really tired and always felt sleepy. I didn't pay much attention because I had always needed a lot of sleep, but as time went on I began to have pain in my knee. Due to this pain I decided to go to my doctor who carried out a few tests but didn't find anything. After two months of small tests he sent me to have a full analysis. The 2nd of August was a strange day. I am used to blood tests because I have suffered different knocks over the years but this was different. After giving my blood sample I felt really weak and my mum had to take me home and put me in bed. Four hours later my mum received a call asking us to go to Valle del Nalón Hospital immediately to carry out some more tests. They repeated the analysis and called my mother in to talk to her. After 10 minutes Dr. Rosón came in with my mother, who was very serious. The doctor asked me to remove my clothing from the waist up and lie on my back on a stretcher. At that moment they carried my first bone marrow puncture in the thorax, I would go on to have the rest in the hip because it is less traumatic and less painful. On the third day I was still in hospital in order for them to monitor me but we were still waiting for a final diagnosis. I was 15 years old when they confirmed to my mother that I had chronic myeloid leukaemia. I don't remember the medical terms I just remember that I was angry because it was the summer and I could go to the festival with my friends. However, they surprised me by coming all together to see me in the hospital to have little picnic in the hospital lounge; it was a lovely moment.
As most parents do, my parents tried to protect me by not telling me all the facts about what was happening. This was an error because although I was young I was not stupid, I realized that people stopped talking when they came into the room, that family and friends were very worried, and that my mother went to sleep crying and she didn't stop talking on the phone.
I think that when we are young we have a more positive Outlook and we are less cynical, we think we can do anything, and that there is nothing that cannot be achieved. But I didn't know what was happening to me, I began to think I was dying and I started to get angry with everyone. I threatened my mother and the doctor that I would stop taking the Hydrea and the other pills that they were giving me. I was not aware that they were a part of the chemotherapy.
Mariela, at 16 years old, just after her bone marrow transplant.
My mother reached a certain point and she decided to tell what was happening but she didn't know how to do it. She sat me down in the kitchen, opposite her; I had never seen my mother so serious. After several minutes, and without know why or how, I interrupted her and asked her "Mum, have I got leukaemia?" She stared at me for a few moments in shock, and then she replied "yes". I said "don't worry mum, it is treatable" and we hugged, I had never been so close to my mum as in that moment. She explained what she knew and said that she had called the José Carreras Foundation and that they had told her that the best hospital in our area was the Universitario Marqués de Valdecilla Hospital. She had also enquired into the possibility of freezing some of my eggs to allow for the possibility of children in the future. There was a 99% possibility that I would be left sterile due to the chemo and radiotherapy. However, the technology was not as advanced to do this 15 years ago.
I passed several months at home with the treatment and although it was hard, I always had my family, my friends and above all my sister Vicky (the heroine of this story) at my side. She was and is scared of needles, to the point where she has kicked nurses away in refusal. When they asked her to take a sample to test for compatibility she did it without hesitating. She was 15 and I was just 16 and she could have behaved like a child, kicking and refusing but she didn't...she didn't hesitate for a moment. She didn't enjoy the needle but she did it without complaining.
Mariela, with her mother and her sister Vicky.
It was all worth it. When the results came back the doctor said "do you know how lucky you are Mariela? There have been patients in the past with 5 or 6 siblings without a single one compatible to do a transplant. You have one sister and you are 98% compatible". My mum's face lit up for the first time in months. Vicky and I had always been together but now we were on another level. Hahaha.
We went to the Marqués de Valdecilla Hospital in Santander several times for them to explain the process to us. I was admitted to the hospital in February 1995, as always, accompanied by my parents and my sister. They stayed in the house of Fernando and Melia, who will always have a place in my heart. They didn't know us and they asked for nothing in return. They did everything just because we were friends with Melia's brother; we are now close friends who we love very much.
During this time i met the doctors, nurses and staff that tended to me and cared for me when i started the strong round of chemo, when the barber came to cut my hair, and when they attached the catheter for the transplant. They laughed when Vicky came to the hospital and we ran around the room in the middle of the night, talking by walkie talkie... hahaha.
Mariela and her sister Vicky.
Early in the morning on the 22nd, they took Vicky to be anaesthetized in order to take the bone marrow that they would then transfer to me that evening. Before she came to back they took me down to receive eight uninterrupted hours of radiotherapy. The doctors told me that I was young and strong and that I could take it and that it was better to apply radiotherapy in a consecutive manner.
It may seem strange but the thing I remember the most was that they put on a tape of the Beatles in order to cheer me up throughout the process. I also remember the voices of my father and my sister, who had got up to see me, asking the nurse if I was doing ok.
The radiotherapy toasted my skin, brought on mumps and vomiting and burst a small vein in my eye. The nurse took me to the room that had been prepared for my isolation where my mother was waiting for me. After a complete disinfection I was told that she was going to pass the 21 days there with me. It was the night of the transplant, my mum always laughs because the date is unforgettable; I was born again the 23rd of February. The rest of the "closure" was perfect for me although my mother was a different story. She had an allergic reaction to the antibacterial soap she needed to use in order to be with me. Dr. Julio Baro, my favourite doctor, bet me that I would get bored with so many days in isolation. My mother and I passed the days reading and I slept a lot. Sleeping, my favourite hobby, allowed me to win the bet and before we knew it they opened the door, after only 15 days. They told me that I had very good defences, and that the recovery had been very quick.
The following days were fun, with visits from my Dad, my friends and Vicky. The only thing to disturb the peace was a muscular reaction to the steroids and in the moment that they removed the catheter from my chest...what pain! They gave me the ok to leave the hospital but I had to spend a month in Melia and Fernando's house due to the hospital visits every other day. In addition, I was required to undergo an analysis each week and receive blood and platelets when it was necessary. When the visits were reduced to every 15 days, we went back to Asturias where I recovered my strength, my muscles and my life. Gradually the visits became monthly, 3 times then, 2 times a year, until they became only once a year.
In a visit that I think was one of the last, the analysis came out positive and my mother feared that everything was about to start all over again. Dr. Baro explained that at that moment they were testing a new medication called Glivec,that we could try if we wanted...so we started. The following analysis came out negative and after 5 years I stopped taking the Glivec and continued receiving negative results from the analysis. Occasionally I receive a positive result but after repeating the test it comes back negative. Living like this I have celebrated 15 years since the transplant.
During the process I got to know a lot of special people that are no longer with us, who I miss terribly. There are others too, like Javier, who today is my husband, that have been through everything with me. We have now been together 14 years, one of those as husband and wife. My friends care for me and love me for who I am. My nephew, who is only four, is showing that he is as strong as me.
Mariela, with her husband Javier
My Project? Start the treatment that will hopefully help me to become pregnant and enjoy life with my husband, friends and family.
I want to personally thank the staff who worked on the 9th floor of the Universitario Marqués de Valdecilla Hospital for their dedication to the patients; to the auxiliary who told me jokes to cheer me up, and to the nurse who Vicky fell in love with for putting up with two teenage girls and always with a smile.
To my doctor and my friend, Julio Baro, for not lying to me and for treating me like an adult and not like a little girl.
To my family and my friends for being there during the disease and recovery.
To my sister, for being you, and always being there for me.
To Javier for helping me through the most difficult times and always staying by my side without complaint and never losing the hope that we can be parents. I love you sweetheart. And above all...to my mum, for being by my side, cheering me up, consoling me without ever thinking of herself.
Mariela, el día de su boda, junto a Javier
Advice? To those who are passing through an illness at this moment. Keep going and be strong. There will be bad moments and mediocre moments but also good moments. When you come through the other side you keep the good memories and the bad moments are not as strong.
And to those who read the article and doubt whether they should be donors or not, I would like to remind you of my sister. She is the girl who "is afraid of needles" and when she was 18 she registered as a bone marrow donor incase another person needs her help.
My greatest advice since recovering from CML is to live in the moment.
Thanks to the José Carreras Foundation for the support they gave my mother 16 years ago and the support they continue to give millions of people who get lost in the technicalities and words of doctors.
And thank for letting me recount a small part of my life, I hope it helps in some way.
Thanks a million
Become a member of the cure for leukaemia and haematological malignacies, HERE
Find out more about bone marrow donation, HERE