LEX’S LEGACY - hope for the future

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If someone had said to me that ‘in five years time you’ll be writing poems and stories about your son’ I wouldn’t have believed them. I certainly wouldn’t have dreamt of a situation in which I would outlive our beautiful boy Alexander.

On Christmas Eve in 2009 he was diagnosed with stage three Neuroblastoma Cancer.

Alexander was just four years old and had a tumour the size of a grapefruit in his tummy, which certainly explained his lack of appetite.

From his diagnosis to his biopsy and test results it took six weeks. Blood tests were negative along with normal tests for Neuroblastoma that showed up negative. Whatever he had, although stage three and slow-growing, it was different to the conditions of other children being treated.

When chemotherapy didn’t work, the doctors had to try again. Lex was the only child to have a port in his chest and a broviac line to access for treatment, bloods, platelets etc.

He had radiotherapy treatment three times as well as Ludo treatment in London.

When Lex relapsed, the cancer was aggressive. How is this possible in a child? No answers came. You look for someone to blame. What could I do, I asked? Why can’t you save my child?

He didn’t deserve to suffer. I felt anger and frustration. And now here I am with my memories and a broken heart.

Lex rarely complained during his illness and I never told him about his friends who had lost their fight and gained their angel wings. I now know at least 30 children to have done so. This is tragic and it continues for other families. But to have had a child who was adored and loved as much as Lex was incredible.

It’s vitally important for me to keep staying positive. I have sleepless nights and days with tears shed while out walking Tilly, our dog.

Friends have fallen away. With no longer having a child in common, their friendship sometimes disappears like a setting sun.

Others who have always been there stay as a crutch to lean on in times of need. New friendships have been borne along with support and stories from strangers about their own personal heartbreak.

I always tell my daughter Olivia (pictured with me above left) we need to help others. It’s been a dreadful five years with only one good Christmas.

Olivia told me on this last Christmas Day. “It’s not the same any more”. No, it’s not, but there is always someone else worse off, and other families who are only starting their journey.

The future has to be positive. Cancer not only destroys your loved ones, it destroys whole families too.

Lex’s Legacy will grow as a charity each year to raise money (as Colour Dash pictured above) and awareness, not only for Bluebell Wood Children’s Hospice, but for our community too.

It has been an honour to have had such a brave, beautiful son as Alexander.

He has taught me love, patience, understanding, and friendship. He was wise beyond his seven years. He fought for half his short life with dignity and courage. I will try to honour his memory by telling everyone about him.