Summary
We are the only UK charity solely dedicated to helping anybody affected by retinoblastoma. If you are located outside of the UK and are seeking help with a retinoblastoma diagnosis, or wanting support, WeCHope has a list of international organisations that can help - simply visit their website.
Mum Travesia, from America, tells us about her son’s diagnosis. We offer lifelong support to anyone affected by retinoblastoma, but we are unfortunately unable to offer support to families not being treated in the UK – for international organisations visit the WeCHope website or visit Know The Glow for international awareness.
My son’s name is Kaios (pronounced Chaos). He is one year old, but at the time of diagnosis, he was seven months old.
At three months of age, I mentioned to his paediatrician that his left eye was slightly lazy. She brushed me off, saying I was a first-time mom and that his eye muscles were still weak. This went on for a few more months. At five months, his dad and I noticed a glare in his left eye when he was under light, so of course, we thought it was the light’s reflection. I kept noticing the slight laziness in his eye and couldn’t shake the feeling that something was wrong. I initially thought it was just a lazy eye, as his dad had corrective surgery for his lazy eye as a kid. I did some research and felt uneasy about everything I was seeing, so I made him an eye doctor’s appointment, and he was diagnosed that day at just seven months old.
He was diagnosed with bilateral retinoblastoma. I had never heard of retinoblastoma before he was diagnosed. He had Group C in his left eye and Group 3A in his right eye. His care plan consisted of six cycles of chemotherapy using three different drugs, with occasional laser or cryotherapy directly to the eye. He was diagnosed at our local eye doctor (Ruston Eye and Vision) but was treated at St. Jude Children’s Research Hospital.
His treatments lasted around six months. He completed his last round of chemotherapy shortly after his first birthday. We were told stories of what to expect, but it was nothing like that for Kaios. He was resilient throughout – always playing and laughing while getting chemotherapy. His hair only started thinning during his last two cycles. His bravery was the source of his dad’s and my strength.
Kaios is now one and a half and a big brother; he adores his little brother. Kaios had his left eye removed in September, and six weeks later, he received his prosthetic eye. He is such a brave boy. He loves to dance and play. He enjoys reading and cooking. He especially loves being outdoors. He is resilient.