I studied communications, and after working for several years in television production, I felt a bit empty, as I didn’t feel that my work in entertainment programmes contributed enough to the world. So I decided to leave television and look for a meaningful job. I visited many social projects, looking for the one that would make my heart beat faster; the only thing I knew was that I wanted to work for vulnerable children. Among the many organisations I visited, there was one, a very small one, that impressed me and I knew that this was my path. It was a little house that received people with cancer who came from the provinces to Lima, the capital, to receive medical treatment. It seemed to me to be a very vulnerable group, because in addition to illness, there was poverty. I decided to become a volunteer there. After a while, I found out that there was an international organisation called Ronald McDonald House, which helped children with complex illnesses and their families, and I was delighted with how well the organisation worked, and it was present in more than 40 countries. I travelled to the United States to visit one of these houses and fell in love with the project. I realised that they took care of all the details, looking for the wellbeing of the family. I wanted this organisation to be in Peru, and within a year of my first contact, they decided to found the Association in Peru and invited me to direct it. I started to visit public hospitals to look for alliances, and that is how I began my adventure in the health system.
When we opened the first house, we took care of all the details: lots of play spaces, workshops for the children and their parents, volunteers. We tried to put everything together so that the children would be happy, healed and able to return home to their families. I soon realised that this was far from reality. No matter how much love, care and activities we offered them at the home, many children died. They would arrive with advanced disease, and after a few attempts at treatment, the doctors would tell the families that the child was hopeless. Some died in the hospital, and it was very hard for the families to see their child leave without being able to say goodbye to his siblings or to take him home as they would have wished. In other cases, the hospital would send the children home to die; however, for poor families, this situation was unmanageable, as living in a state of poverty, they could not offer their child the basic comforts and welfare they needed at the end of their lives, and it was very hard to see them suffer pain and depart in an undignified manner.
All this made me question myself because although we offered them a temporary home for the duration of the treatment and had little to do with the medical side, I could not accept that a child should die in pain. I saw the great suffering and guilt of the parents, and I kept telling myself that there must be other ways to handle this final process. My frustration grew and I fell into burnout. When I was about to give up because I could no longer cope with the emotional pain, a family came to visit me whose daughter had just died a few weeks before. I was surprised to see them so serene and at peace when they came to the home to donate their child’s clothes and toys. How in a few weeks had they managed to come to terms with their child’s departure? They told me that the girl died at home, with her pain and symptoms under control. They had a chance to talk to her, express their feelings and say goodbye with love. At that moment I realised that the quality of the death directly impacts how the family processes grief. A good death resulted in healthy mourning, whereas when the child died badly, the family had a hard time recovering and moving on with their lives.
I started researching and discovered palliative care and hospices. Again, my heart beat in that special way when you know where the road is going.
After 6 years of running the home in Lima, I moved to the mountains, in the Sacred Valley, Cusco. It was not easy to leave the children’s home, because I felt it was mine; however, I knew I had to take that step. In the countryside, I felt more alive, inspired, I started volunteering at an association for children with disabilities and then I was hired to work there as a social communicator. Suddenly, the pandemic started… March 2020. I started working from home, and after a month without contact with the children, hearing about so many cases of lonely deaths in hospitals, without human warmth or goodbyes, I remembered my mission, my promise. I knew I had to start preparing myself for what I knew was my path. I studied for a Diploma in “Accompaniment at the end of life” and a course in Thanatology. I read Dr. Cicely Saunders and Dr. Elizabeth Kübler-Ross. I adopted them as teachers, and decided that I had to study a course in palliative care if I really wanted to learn about this world. I started looking for online courses in different countries. Most of them were about palliative care in general, but I was looking for one specifically for children and adolescents… until I found it: it was offered by Palliatives without Borders.
I read the course content, and found it very challenging, as I am not a medical doctor, and many of the topics were quite clinical, but I decided to enrol. I am grateful that I was given the opportunity to study this wonderful course. I discovered a new world. Within a few months, everything started to flow. As I progressed through the course, I became more passionate about palliative care. At the end of 2020 a friend of my family contacted me and told me that he wanted to leave a legacy and help me start my project. I left my job and my dream started to come true. I registered my Association “Casa Khuyana” (khuyana is a word in the Andean Quechua language, and means “worthy of love and understanding”). An architect friend of mine made the design and I started looking for the land. After 5 months we found a beautiful piece of land of 3000 m2 in the province of Calca, in the heart of the Sacred Valley. It was not easy to get the building permit, but finally, we got it, and in July 2022 we started the construction of the first paediatric hospital in Peru, in the middle of the mountains, under the blue sky. It is still under construction. In January 2023, we finished the structure and we are looking for funding to finish the finishing and equipping stage. I am already visiting partner hospitals and trying to recruit volunteers. Since I started studying, I haven’t stopped. I am in love with palliative care, more than a specialty, as a way of life.
This aricle was published with permission form Notas Paliativas www.paliativossinfronteras.org.
I am so inspired by your article Monica and know you beautiful vision will soon become a reality. What a blessing for Peru’s children you are and Casa Khuyana will be!