Before I start telling my story, I have to briefly summarize who I am. I was born in a small village named Ponte de Lima, in Portugal. I live in Rio de Janeiro/Brazil. All my life, I’ve always been a sportsman, I’ve played basketball for a while. I’m 1.93cm height and weight 95 kg. My family is united and happy. One evening in July 2001 I was forced to push my car uphill due to an electrical outage. I would never imagine that from that moment on my life would become such a nightmare.
The day after the effort, I woke up with an uncomfortable back pain. After three days, the pain did not gave in so I decided to go to the hospital. After a clinical evaluation, the diagnosis was a muscle contracture with prescription of analgesics and anti-inflammatories. The pain didn’t give way. After a few days I went to a private clinic. The diagnosis was the same, as was the prescription of medicines. They just recommended me physical therapy sessions. Again the pain didn’t subside. Something was wrong. The pain increased, and new symptoms arose: pectoral burning, numbness in my belly and difficulty to walk. Finally, as early as November 2001, my sister suggested one more medical opinion. Once again we went to a private hospital. After an x-ray of the spine and chest, the doctor prescribed more painkillers and a MRI. Once again, the pain didn’t go away. By mid-November 2001, the symptoms were unbearable. Abdominal numbness was almost complete, I felt extreme burning in the chest and can’t walk in a straight line. After the MRI the great mystery was revealed: There was a tumor growing in my spine and compressing the spinal cord. The pain was like a knife in my back. I no longer slept, or relax: the only way to sleep for a while was putting ice on my back and chest. But still it was for a brief period. The priority, after consultation with a neurosurgeon, was surgery to remove and classify the tumor.
I was hospitalized on November 30, 2001. The surgery was performed the following day, December 1st, my father’s birthday, I remember waking up and finally feeling pain free. Everything was fine, I had movement in my legs and I was relieved. Everything seemed under control. I was deadly wrong. During a maneuver for asepsis on December 3, the mixture of recklessness, malpractice, incompetence and everything else from a nurse made the drain move. Immediately I felt my legs disconnect from the rest of my body. Like water running down a drain. My legs were losing sensitivity and movement. I had a bleeding at the site of the surgery, which caused me a spinal cord compression, causing a spinal shock! I was taken emergency for a CT scan and then to the OR, but the damage It was done: I lost the movement of my legs!
The screams of despair were being replaced for a low cry. My hospitalization, which would only be for four days, eventually extended for 18 long and suffering days. When I left the operating room, I had some sensitivity. However, I was paralyzed from belly button down. On the morning of December 6, 2001, during a routine doctor visit, I managed to move lightly the left toe. My joy was so great that I didn’t know whether to laugh or cry or scream. I returned home on December 18, 2001 by ambulance. I started a long and intense physical therapy work with a physical therapist friend who turned out not only that, but also a guardian angel. With she and her assistant, another angel, I relearned to walk. But before walking, I should relearn to sit urgently. I only came to understand why later.
When I still didn’t know if I would ever walk again, the tumor pathology came back: I had cancer! There were eight chemotherapy sessions over five months, some side effects and a lot of anger, but after all a new MRI revealed that I was in remission. Still, I had to do 20 radiotherapy sessions during June 2002. All this in conjunction with physical therapy made me able to walk on crutches. I was healed!
I went on routine visits to the doctor for follow-up, and all seemed well. But, once again, I was wrong. On September 20, 2002 my relapse began. Strong cough, nausea and vomiting, accompanied from a constant high fever, made me thin and pale and weak. I no longer had the strength to walk and I spent my days lying in bed. New tests indicated that the disease had returned. I was again admitted to a private hospital and later transferred to a hospital where, after countless painful exams, I received shocking news that made me discredit the justice of life: I had acute leukemia! The lab had misdiagnosed it. All the treatment I had it had only a temporary effect. My parents and siblings were told that I would only have 3 months to live.
For 53 days I was admitted to the hospital. I had some very strong chemotherapy sessions, I lost 32 kg, lost my hair, had no control of my urine and feces, vomited the all the time and receiving constant blood and platelet transfusions due to bleeding from the mouth and eyes. I was just a pale, thin shadow of the man who I’ve always been. I was without faith in God and discouraged. But at no time did I give up. My faith was in the love of my family. My parents were like my shadows, always by my side, ready to help me on anything. During the day my mother was by my side and at night my father slept with me at the hospital. Both always with a word of strength, encouragement and never discouraging!
On December 5, 2002, I returned home. I was in remission, but the doctors recommended a bone marrow transplant. We agreed. While I was recovering from treatment, my four siblings underwent genetic compatibility tests. Despite all the past misfortunes, something told me that I would have a donor. And I was right: one of my sisters was compatible! I was admitted on April 17, 2003 to start the necessary chemotherapy for the transplant. These were extremely aggressive sessions, because my bone marrow had to be nullified so that I could receive my sister’s marrow. For five days, I received chemotherapy. For the first three days, I took 98 pills diluted in water a day, 49 in the morning and 49 more at night. In the last two days, I received intravenous chemotherapy. The transplant was performed on April 25, 2003. On this day, my sister gave me a second chance to live. In the following weeks, I suffered all the devastating side effects. And there were many, terrible.
Finally the Cure:
On May 11, 2003, Mother’s Day, my new bone marrow started to produce blood cells. On June 23, 2003, my nightmare ended. I received from the doctors the news that the transplant had been a success, and I now have a 100% healthy bone marrow with normal cell production! I still had to spend the whole period post -transplant at home, avoiding many contacts with people. They were practically eleven months lying on a bed, just leaving home to go to the doctor do exams. When I left the hospital 36 days after the hospitalization, I had to go every other day to do blood tests. Over time these queries were spacing out, but, even after a year and a half of transplantation, I felt very weak due to the aggressiveness of treatment. Yet I can categorically state that all the pain and suffering were worth the pity!
My family struggled and suffered each of these steps with me. My brothers have always been to my side. Some friends didn’t miss me either. Today, after the demonstrations of love and affection in difficult times, I already regard them as family.
My biggest dream came true on December 3rd 2013: my beloved son Victor Afonso Santoro de Brito was born. He’s the result of all the struggle, determination, strength and, especially, much love.
I write these lines 16 years after the transplant. I regained my weight, married to the love of my life, my family grew (I gained more nephews), I’m healthy, with my self-esteem renewed. I keep doing physical therapy to reduce the motor sequelae to the maximum, I exercise and live a normal life, within the limits that still exist, but independently, working, traveling and living one day at a time.
My father and mother said from the start that they wouldn’t let me die. There are not enough words to describe the suffering of those who have shared such suffering just as there is nothing capable of measuring the ability to love in a mother and a father. The important thing is never give up fighting. If it’s not for you, do it for your family.
More than ever, I say fearlessly and proudly: NEVER GIVE UP!