Victor, former patient of Severe Combined Inmunodeficiency
"It was just after receiving his first vaccine at three months old, when Victor started to show symptoms of something not quite right. He regularly had coughs, fever, and vomiting and the paediatrician did what he could, but Victor remained happy, he was always happy, and hungry, he has always been greedy, but he didn't improve".
One Sunday at dusk, we took him to A&E, at the Maternity Hospital in Sant Joan de Déu in Barcelona, where he was born with his triplet siblings. As we arrived, his skin was developing red patches all over his body, his fever did not go down, the cough was persistent, and he was physically suffering. They started the tests and produced their first diagnosis: immunocompromised disease. It took another month of tests to reach the final diagnosis: "Severe combined immunodeficiency with increased B Lymphocytes". We will never forget the moment in the room in the lounge with 7 doctors, all very serious, and with us not understanding much of what they told us. They explained that the only real option was a bone marrow transplant, but we continued to not fully comprehend what they were telling us, it only occurred for me to ask if it was the only option. Yes was the answer.
They told us about how lucky it was to have siblings in a case like this; about the tests; about the isolation; about the wards; about the endless percentages of probabilities; about chemotherapy..., we left the room alone, without saying a word. We left the hospital and went for a walk in a nearby park, we sat on a bench and we cried, for a long time, all the while in silence, still not fully understanding what they were telling us.
They isolated him in a normal room because a special isolation unit did not exist in this hospital. We waited for the results of the tests to determine the compatibility of his siblings and ourselves, but as he continued to get worse the results came back negative. This was when we spoke to the José Carreras Foundation and the bank of bone marrow donors. A case of meningitis in the hospital and the search for a donor concerned the doctors: he could not continue without being isolated. They transferred him to Vall d'Hebron Hospital in Barcelona. In the isolation ward, his condition improved but a donor had still not been found; it was then that doctor Ortega and doctor Olivé told us about the stem cells. Although they had not tried this method before it was the only option. Being 1995, the possibilities with umbilical cords were not well known. Time was running out, they would take stem cells from the bone marrow of his father and transplant them into Victor. They were confident that if these cells were not rejected and that they would create a new bone marrow, we waited with fingers crossed.
The 7th of July, San Fermín, the chupinazo entered Victor's veins and the wait began, a long wait! Although there were repeated rejections, and the dosage of immunosuppressants increased, a toxic megacolon attacked mercilessly and it seemed that everything was going down, one thing never went down, which was Victor's smile. All the nurses loved him.
He did not know how to talk but he made himself understood wonderfully. Rafa, the nurse, danced..."there is the shark, the shark, don't stop carry on, go..." if he wondered where the nurses where. He put his hands on his head and they escaped his cheeky smile.
He decided the order of the medication that he took orally and he never complained when they needed to make a small injection to replace a faulty catheter, venocath or port-o-cath, he was a good patient at only one year old.
One day, the number of rejections and the dosage of immunosupressants began to reverse, it seemed like everything would be ok, he only needed to gain some weight! He left on the 15th of August 1996, 10 days shy of his second birthday. His defences were still low but the bone marrow had grafted successfully. He was out to face the world with all its dangers for a boy who had been in sterile isolation for 14 months. This was his new challenge, but his smile was our hope and we trusted him blindly.
Out of the hospital the lapses continued, as did the diarrhea, the loss of weight to the point that the following January he was readmitted with malnutrition and dehydration. Over time he appeared to be getting better, helped by the application of nutrients through a vein. However, his skin could not accept any catheter and finally his system rejected the venocath, which filled his lungs with liquid that had been administered as alimentation. He was saved by a nurse, who during a boring night, went to play with him, because people continued to fall for Victor's smile. The nurse found him almost unconscious, hardly breathing and of a purple complexion. He would have died that night had it not been for that nurse. He was taken to the Intensive care unit at A&E and he was connected for a week, to two pumps that slowly drained the liquid from his lungs, it was the only time that he lost his smile. He returned to his ward with a catheter well connected and from then on he began to get better. With the great dedication of all the hospital staff he reached the point where he could leave. To never return!
We learnt how to apply a nasogastric tube and feed him with a pump, until the moment that he didn't need it anymore. To celebrate his third birthday he gave us the gift of the first lymphocyte he created himself. Slowly but surely, his recuperation was now a fact. He received his first vaccines successfully, he started school, he ate everything, he was talking, running, falling, and getting up again by himself. Today, he is 16 years old; he is a normal boy, without lasting consequences, only some scars from the many port-o-caths, venocaths, and catheters that he needed. The most important thing is that he doesn't remember a thing.
Victor's plan is to take an artistic course and then a fine arts degree, to dedicate himself to teaching, and to help his brother Oleguer, who is now fighting the same disease; but that is another story".
Become a member of the cure for leukaemia and other haematological malignancies, HERE
Find out more about bone marrow donation, HERE