Liam was born in April of 2011, my second baby and the perfect complement to his big sister Audrey, we enjoyed our happiness for the first 6 weeks, until one day Liam began to get very high fevers, rashes and GI problems. He was hospitalized for more than a week, during which he underwent spinal taps, IV placements, antibiotics, and catheters to the bladder among other things. I thought it was the worst experience of my life but there was more to come. At 3 months old, I rushed Liam to the ER with the same symptoms he had as a newborn, but this time his blood work showed signs of infection all over his body. Within two days in the PICU he was connected to several IV lines, a tube to suction his stomach fluids and round the clock blood transfusions. He was given a cocktail of IV antibiotics and steroids he needed his lungs and kidneys drained, a breathing machine, catheters to collect urine, and more. I cannot express the fear and pain I experienced those first shocking days, all I wanted was to hold him in my arms and tell him mommy is here and everything will be ok. I really wanted to believe this was just a nightmare, but I felt every tube and needle ten times worse in my body, I’ve never felt pain in my soul the way I felt it back then, the constant agony and the feeling of fainting and then remembering I can’t, he needs me and he needs me sane, even though it was so hard to breath with excruciating pain of existing in that moment. A week later he had a few procedures to place permanent catheters for IV medication that went to his heart, because they run out of places for IV’s and had collapsed veins all over his body. These machines kept my baby alive. At this point, he was transferred to the Children’s Hospital of NY Presbyterian because his liver was failing and needed a transplant. I couldn’t take it anymore, I needed a diagnosis, an explanation of what was happening to him. Another week went by with more surgeries, biopsies, tissue cultures, cat scans, MRIs, bone marrow biopsies and genetic testing, I was told that he may not make it through the night, every night. One morning they were hoping to have a diagnosis to start treatment because he was not expected to survive the waiting period for genetic test results. My brave Liam made it through the night and so did I. In the morning, I was introduced to this horrible genetic disease of the blood -HLH- in which the immune system attacks healthy cells in the body causing multiple organ failures. If treated in time, there is a chance of survival and I was holding on to that small percentage of hope of survival because it was all I had to hold on to. We started chemotherapy right away. His disease had affected his nervous system and now he experienced seizures and was tied up to the bed but I managed to hold his hand and kiss his forehead constantly. He started responding to this treatment slowly but surely, in another month and a half he was transferred to the Oncology floor, I remember the relief of the moment but we were still confined to live in a negative pressure room for the next 7 months. He continued with seizure activity every hour and had not drunk a drop of water for 4 months, but he was alive and fighting for his life, and so was I. His treatment included strong chemotherapy and a bone marrow transplant. We were very fortunate to find a good genetic match from an unrelated donor and to schedule his life saving transplant for Sept 2011, his “other” birthday. Liam responded to the transplant like a champ! We lived in the hospital for 8 months straight and had several more stays weeks at the time for the first 3 years of his life, after a transplant the most common side effect is the donor’s cells attacking his body and it took us 3 1/2 yrs to achieve peace in his body but we did it. He learned to eat by mouth again and got the feeding tube that was placed in his belly removed. It took a total of 17 surgeries, extensive medical care and a boot camp training for Mom to learn to administer IV medicines and operate 5 different machines at home, the incredible support from family and friends, an amazing medical team and an angel bone marrow donor, to say that we are DONE AND OVER with this journey. This child whose physical being became a battle ground, who entered the battle and won, and those scars and his character are the spoils, he is no longer a simple boy, he is a warrior…. Everything in life is a learning experience. I am sharing mine to raise HLH awareness and to encourage Bone Marrow Registry, it is my mission and the way to give back to life. Thank you for reading my story, be healthy and love your love ones! Mercedes Bazan
