Lenny’s legacy: Supporting scientific solutions

Lenny’s legacy: Supporting scientific solutions

“I have four children. One of them lives in heaven now." A mother shares how she's learning to live split between heaven and earth. 

“I have four children. One of them lives in heaven now,” says Lauren Henwood, whose 16-month-old son Lenny died in July 2018, after a 12-month battle with neuroblastoma and veno-occlusive disease (a liver condition that can be a complication of chemotherapy).

Lauren still feels the often unbearable pain of her loss. Life has not become easier with time. But she carries with her one of her very favourite memories, a moment from just a few days before she her beloved son passed away.

“One morning, when I arrived at the hospital after school drop-off for our 'shift swap', which Nick [Lauren’s husband] and I did daily, he started crying for me the second I walked in the room. So I quickly put my bags down and picked him up.” 

“He lifted his chin to my face and puckered his lips a little bit, so I gave him a kiss, and we rubbed noses a little bit."

"He then started humming and had an all-body wiggle, so I giggled at him. The smile in his eyes was beautiful. Then to my delight he did it again, and again. We repeated this for a few minutes and I picture his little face every night doing this with me.”

Lenny’s medical journey began at the age of six months. A twin to sister Isla, he’d been lacking energy and had a fever, then Lauren and Nick felt a lump in his stomach. Scans revealed the cancer.

“I remember seeing all these little bald children with poles as I walked through the corridor with our babies,” Lauren says, of her first days in hospital.

“I remember just crying as soon as we walked into the room. This was real now and really, really scary, and I didn't want to be here, anywhere but here. This doesn’t happen to me, not to my baby.”

What followed was months of chemotherapy and surgeries.

When he was 11 months old, Lenny said ‘Mumma’ for the first and last time. But what would usually be a moment of joy for a mother was instead horrifying.

“He had terrible nausea, had been violently vomiting constantly,” Lauren recalls. “He threw up his nose tube about six times in two days. But he needed a nasal gastric tube so we could give him small amounts of milk and medications, so we kept putting it back in.”

“It’s a horrible ordeal to put a nose tube in for a baby, and we had to do it over and over again because he needed it."

"This time he said my name he was sitting on my lap while I held his arms and two nurses re-inserted the tube. To hear him yell my name in distress, whilst I’m helping hold him down was one of the worst experiences of my life. I’m meant to be protecting him not helping hold him down. He never said it again, only that once.”

The 12 months of treatment were filled with similarly heartbreaking experiences, punctuated by moments of happiness and joy. Lauren describes the journey as one of “horror and strength”.

The night before Lenny passed away, he lay in Lauren’s arms as she sang to him, tickled his face and read his favourite stories – Hairy Maclary and Spot. Until his final breath, Lauren never lost hope.

Since that day, Lauren has done all she can to help fundraise for The Kids’ Cancer Project, including via an Everyday Hero fundraising page and through the Walk For Lenny, an event held on the anniversary of the bub's death.

“Although there are many, many great charities out there who have supported us to no end, we believe research is the key to a future with no childhood cancer,” she says.

Many parents that she has come to know can tell equally horrifying stories of the treatment their children had to suffer as a result of cancer, Lauren said. She was shocked by what Lenny had to go through and knows that through research, scientists will find a better way to treat childhood cancer.

“The treatments that are used currently are so toxic they literally kill otherwise healthy children, and they don’t always work, putting those children through horrible side-effects whist trying to survive, only to lose them anyway,” she said.

After Lenny’s death, Lauren and Nick struggled to find meaning. Then they realised they had to continue to live good lives for their children – Lenny’s twin Isla, older brother Nicholas and baby brother Quill (“…our unexpected, little gift,” Lauren says) – and to honour the memory of Lenny.

“Lenny’s life meant something to us,” Lauren says. “It meant everything to us. I am a better person for knowing him. I love harder, cry harder, I am a better mother, a better wife. You can’t just move on when you lose a child, you learn to live split between heaven and earth.”

“He will always be missing from family photos. I will always see him when I look at the other children, feel his absence in the room. But he shines out from within all of us, and he always will. He is with us and we carry him everywhere. He is our missing piece.”

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