Facing the future: “How can a 3-year old understand that her daddy is going to die?”

Cancer

Manish, Kathy and their two children, Kitty and Mani.

More people are surviving cancer than ever before, but sadly there are still those who run out of treatment options and have to face death far earlier than they ever imagined. For parents, who naturally expected to be a part of their children’s lives for many years ahead, this is a particularly cruel twist of fate.

In addition to coping with their own prognosis, treatment and side effects, parents with incurable cancer have the additional burden of helping their children understand what is happening and what the future holds.

We share the stories of 2 parents, Becky and Manish, who both had the heart-breaking job of preparing their own young children for a future without them.

Becky’s story

Becky and her daughter.

Becky and her daughter, Lexi.

A rock-climbing enthusiast and single parent who has never smoked, Becky was devastated when she was diagnosed with incurable non small cell lung cancer at the age of 34.

Becky’s symptoms began with a cough that wouldn’t go away and she was initially treated with antibiotics. When she was eventually discovered to have a tumour in her right lung, it had already spread to her left lung and lymph nodes.

She was then given the devastating news that her cancer was inoperable, but that treatment could prolong her life.

Becky is now battling against the clock to make special memories with her 6-year-old daughter Lexi, so that her child will always remember her. She believes that research is buying her precious time with Lexi.

Becky was initially treated with the targeted therapies alectinib and lorlatinib, but her cancer started growing again. She is now undergoing scans and tests to determine what future treatments will have the best outcome.

For Becky, every day with her daughter is a blessing, and she is filling their time with fun activities like baking, painting, trampolining and dancing. She is also working her way through over 700 photos to create a bespoke memory album for Lexi.

“I have been very unlucky. To get lung cancer when you don’t even smoke is very hard. My little girl is going to lose her mum, and that is heart-breaking. But you can either give up and stay in bed, or you can get up and make the most of it. I’m doing my utmost to make as many happy memories with my daughter as I can. I want her to remember me.

“Lexi knows that mummy is going to go to heaven one day, but what does that mean to a 6-year old? She just thinks heaven is a place. I can’t stress enough how much every day with Lexi matters to me and how grateful I am for every drug that helps me be with her for longer.”

Despite being ill, Becky took part in her own Race for Life at Home last year by joining friends in Birmingham’s Cannon Hill Park and raising money for Cancer Research UK.

“I would already be dead if it wasn’t for the treatment that’s keeping my cancer at bay. Without research there simply wouldn’t be any treatments, so we have to keep fundraising”.

Manish’s story

Manish and Kathy

Manish and Kathy.

Intensive care nurse, Kathy Chauhan, met her husband Manish when they both signed up to raise money for a hospital charity. From the moment the characterful man with the odd socks stole the bacon off her breakfast plate, Kathy knew he was special.

The pair were soon inseparable, and within 2 years they were married and enjoying life with their firstborn, Kitty.

But tragedy struck in April 2017 when Kathy was pregnant with their second child. Manish was diagnosed with a rare and aggressive type of bowel cancer called signet cell carcinoma at the age of only 38. He was given months to live.

“I was 14 weeks pregnant at the time, and Kitty was only 3,” remembers Kathy. “I couldn’t take it in when they gave us the news. I just kept saying: “He needs to see this baby, he needs to live for the baby.”

“The consultant knew I was a nurse, so he just showed me the scans. The cancer wasn’t growing as one tumour but as tiny growths all over the place, like grains of sand. They were in his bowel, his liver, the linings of all his organs.”

With intensive treatment, Manish lived long enough to see his son Mani born. He died in March 2018, a year after being diagnosed.

Manish, Kathy and their two children, Kitty and Mani.

Manish’s main concern in his last months was to make sure he left his children with memories to comfort them.

He recorded his voice to be placed inside a Build-A-Bear so his children could cuddle it and hear the words: “If you need me, just close your eyes.” Kathy’s sister, Faye, made comforters and blankets out of his favourite clothes, so Kitty and Mani could have a ‘daddy cuddle’ whenever they needed one.

“The hardest thing of all was telling Kitty what was going to happen to daddy. How can a 3-year-old understand that her daddy is going to die?” said Kathy. “But Kitty is an incredible little girl. She has been so brave and is mature beyond her years. At Manish’s funeral we packed a bag for him with all his favourite things for his ‘journey’. I got choked up and couldn’t speak so she stepped forward and told everyone about what was in the bag.

“Losing your dad at that age is a terrible thing to deal with, but it has made Kitty wiser and more grown up. She is hugely empathic, and recently won an award at school for being the kindest pupil. I think a lot of that comes from what she has been through.”

Manish’s legacy lives on at the hospital where he worked too. He often wrote inspiring or funny quotes or mottos for people to find.

When one of the wards at Glenfield was cleared for COVID-19 patients the nurses found a previously undiscovered note from Manish. It said “Dream big. Work hard. Surround yourself with good people.” The note now has pride of place at the centre of a wall celebrating NHS staff fighting COVID-19.

“Manish always assured me I wouldn’t be alone, and he was right,” says Kathy. “I have been supported by families, friends and charities, and I have recently met a new partner. Life does move on after loss. It is possible to love again. But no one can ever replace Manish, because he was unique.”

Jane Redman is a senior regional media officer at Cancer Research UK

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