Garen’s Legacy and the Gift of Palliative Care. Love until the end and beyond.

I am Garen’s mom. My name is Shaghig, the mother of a one-of-a-kind soul: brave, kind, and radiant. He was once a miracle in this world, and now, an even greater one in eternity. 

Garen was diagnosed with retinoblastoma at just 40 days old. Then, he battled rhabdomyosarcoma at age five, and later osteosarcoma with metastasis to the lungs at fourteen. Because of a genetic mutation he carried from birth, cancer was the unwanted companion that walked with him for 18 long years. Despite everything, Garen lived with unshakable faith, never-dying hope, and the gentlest, most loving heart. He smiled through his pain, gave strength to those around him, and never gave up – not even when the suffering became unbearable. He was a miracle. He is an all-time survivor. He will always be. 

But behind that miracle was a reality almost too painful to describe. Garen’s entire life of nearly two decades was a relentless, soul-draining cycle of endless chemotherapies, major surgeries, invasive interventions, countless scans, and lab tests – a journey that was unimaginably difficult to witness, carving deep pain into every corner of our lives. 

 As his mother, I had to endure every step of that journey beside him. I had to be strong for him, even when I was breaking inside. I had to manage appointments, interpret test results, ease his pain, both physical and emotional, hold his hand through every treatment, and be there when he woke up after 14 hours of life-saving surgeries. I had to lift his spirit when his body failed him, to walk with him – and for him – when he no longer could. I had to be everything, all at once. Because when your child is dying, you don’t get to choose your role. You simply become what they need. And in the end, I had to carry the weight of the heaviest goodbye, with quiet, unwavering resolve – though it was unbearable, breathless, and shattering. Because you cannot imagine how a mother’s heart keeps beating when her child’s has stopped. 

 And yet, even within this unimaginable reality, we were blessed. We had access to palliative care – real palliative care – not just symptom control, but deep, compassionate support. At the Children’s Cancer Center of Lebanon at the American University of Beirut Medical Center, we were surrounded by an exceptional medical team, and alongside them stood the palliative care providers, who supported us in a profoundly vital and irreplaceable way. They didn’t just treat Garen – they truly saw him. They honoured his laughter, his courage, his spirit. They were there not to fix the unfixable, but to carry it with us. To offer comfort. To help him die at home, wrapped in love and dignity. When he couldn’t walk for ten months, when even standing had become only a dream, he passed – standing. Upright. Like an oak tree. That was no coincidence. That was palliative care making the impossible possible, guided by their expertise and by the gentle hand of God, who never left our side. 

 In those final days, palliative care gave us what nothing else could. The support we received from Balsam-The Lebanese Center for Palliative Care at home made all the difference. It allowed us to say goodbye without regret. To hold each other in grace rather than fear. It allowed Garen to remain himself – a brave, noble soul, not just a cancer patient, until his very last breath. And it helped us, his family, to remain whole enough to carry on after his passing. It didn’t take the pain away, but it gave us peace in the pain. It gave us love instead of fear, and presence instead of helplessness. 

 Still, I know we were fortunate. Many families are not. And that is the heartbreaking truth. So much is still missing. Palliative care is too often misunderstood. It’s seen as giving up. But for us, it was the opposite. It was choosing life and humanity until the very end. What’s missing is awareness. Trained professionals. Support systems that don’t delay care. Resources that reach not only the child but the entire family. We need more compassionate planning, more holistic attention, and more people who understand that palliative care is not the end – it can be the beginning of healing in the face of loss. 

 This is why I deeply value the work of the International Children’s Palliative Care Network (ICPCN). Their mission speaks directly to families like mine. They advocate for the very thing that helped us remain whole enough to carry on, in the face of devastation. Organizations like ICPCN bring visibility to the invisible battles families face every day. They educate healthcare systems, train professionals, and work to ensure that palliative care becomes a right, not a privilege. They remind the world that children like Garen – and the families who love them – deserve more than just treatment. They deserve compassion. Presence. Dignity. 

 Sadly, the urgency of children’s palliative care is often only understood when families are already living the unimaginable. But it should never be something families only stumble upon in crisis. It should be there from the start. Palliative care is not a luxury. It is a necessity, a lifeline. It can mean the difference between a family unravelling in despair and a family walking through grief with grace. It is love – structured, skilled, and sacred.  

 And when death becomes inevitable, it is palliative care that makes a good death possible. Let us not speak only of a ‘good life,’ for a good death is equally sacred. No one wishes for it, no one longs for that moment, but sometimes, it cannot be escaped. And when it comes, what matters most is how we meet it. A good death is not the absence of grief, but the presence of gentleness, respect, and connection. That is not just medicine. That is humanity at its most tender. That is love. 

Read her story in our new book, Heart Strings, here: Heart Strings | PDF to Flipbook