Meet Huxley

“Cancer took my toddler’s sight. Haven House meant it could never take his smile.”

Two-year-old Huxley was born on February 28, 2019. When he was around 15 months old his mum Chloe noticed that his left eye was cloudy, and he had a slight squint. After a visit to the doctor, Huxley was taken immediately to Moorfields Eye Hospital. Following extensive examinations and assessments, a hospital consultant said the words no parent ever wants to hear: ‘It’s cancer’. Huxley had retinoblastoma – cancerous tumours in both his eyes.

Huxley's parents share their experience and
Huxley's diagnosis and how Haven House helped.

The family were thrown into a world of hospitals, diagnoses, treatment plans, prognoses. Huxley underwent gruelling chemotherapy and treatment. The treatment at stages was working and hospital teams tried various forms of chemotherapy to try and save his eyes.

Vison in his left eye was badly affected and the decision was taken to remove it. At this stage Huxley had good vision in his right eye so treatment continued to try and save this. Sadly, after relapses and then a deterioration to his sight the family received the heart-breaking news that this eye would also have to be removed to prevent the cancer from spreading.

Chole recalls: “Matt, Huxley’s dad, called me and told me the news just hours after we welcomed his baby brother Laurie into the world. I was holding my newborn son, recovering from a caesarean, as I received the devastating news.

"That day was full of emotions. On the one hand, we had a new baby and Huxley had a new little brother. At the same time, learning that my eldest boy would lose both his eyes was the worst day of my life."

When the doctors took the bandages off Huxley’s eyes after his operation, he didn’t understand why he could no longer see. He kept feeling his face, trying to remove the bandages that were no longer there and crying that he couldn’t see his mummy. The following months were extremely tough and distressing for the family. Huxley struggled to sleep as he could not distinguish between night and day. Mum and dad were doing all they could to support and keep Huxley safe whilst also caring for a new baby.

It was then that the family’s community nurse suggested Haven House. At first the family didn’t realise what a hospice could do for them. Music therapy was the first service the family accessed, and Chloe says it enabled Huxley to have choices and allowed him to enjoy his favourite things.

Chloe continued: “At first, I wasn’t sure I wanted to speak to a hospice. Huxley wasn’t dying and I thought they wouldn’t be able to help me. How wrong I was. The support Haven House gave my family meant in our darkest times, we felt fully supported.

“At a time when we needed it the most, Haven House were there for us. Roxanne, Haven House’s music therapist, came to our home, so that Huxley could have weekly sessions singing, playing instruments and building his confidence. At that darkest time, seeing my little boy sing his favourite song Wheels on the Bus put a smile on all of our faces.

“I knew that Huxley was in safe hands when Haven House nurses, health care support workers and play specialists were in our home. They took him to the park, played with him, and understood his medical needs so I never had to worry. It gave me time to rest, to be a mum to my new born, to go to appointments and run errands. Haven House was our lifeline.”

This Christmas will be special as we look forward to being cancer free and spending time together as a family.

She added: “For us to be all home together and Huxley being well is all we hoped for. We are staying positive, taking stock and just enjoying this special time with Huxley and as a family. Huxley is very resilient and just incredible. Everyone who meets him, adores him. He is a very special little boy. He’s lively and happy and enjoys keeping us on our toes– there's no stopping him! We want to make the most of that.”

We can't change a child's diagnosis, but together we can help a family access the care they need so they can be together.