'˜How Macmillan helped our family after our daughter was diagnosed with Leukaemia...'

Harlow James was just 18-months-old when her family were given the devastating news that she had leukaemia.

“I fell to the floor. I cried so much,” her mum Esther recalls. “I remember screaming out the words ‘Is my daughter going to die?’”

It was December 14, 2016, just days before Christmas. Harlow began chemotherapy immediately, the first phase of a two-and-a-half year treatment plan.

“[The news] came as such a shock and I felt in that moment I wanted to curl up, cover my ears and pretend it was not happening,” Esther, 35, says of the diagnosis.

As she struggled to process her daughter’s cancer, her mind was also filled with thoughts of how she and her husband Mitchell would juggle work with parenting their healthy older child Indie-Rae, now seven, and caring for Harlow. “In just a day, all our lives changed forever.”

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Harlow, now three-and-a-half, had begun having recurring coughs and colds and when brushing her hair, Esther noticed a pea-sized lump on her daughter’s head.

She sought medical attention and was initially told it was a cyst, but within six weeks, the lump had grown to the size of a golf ball, she says.

After tests including a biopsy, Harlow was diagnosed with blood cancer acute lymphoblastic leukaemia.

Esther stopped working to help look after her daughter, which impacted on the family’s finances.

Mitchell, 34, who co-owns a card company, worked all hours to get a new business up and running to boost their income.

And three months ago, he and a business partner launched X-It Games, an escape room in Shipley.

“Trying to work and manage hospital sleepovers, collecting our daughter from school and just general cooking and cleaning was impossible,” Esther says.

“It [the diagnosis] affected our older daughter too as her routine had gone out the window.

“She didn’t have us to put her to bed or pick her up from school. It affected her hugely and we relied on family and friends so much.

“Emotionally, it is such a draining process as you are constantly worried about the illness - is Harlow going to be okay? Will she live? Will she survive the treatment, the after effects and the damage to her body? Will she be able to have her own children?

“When she is doing well I live in fear of ‘What if it comes back?’ It really is a constant emotional battle.

“But we decided from the beginning to take it day by day and find joy even in the smallest thing.

“We have a strong belief in God and our faith has also helped us through dark times.”

With seven months of treatment remaining, Harlow now receives daily oral chemotherapy at home in East Morton, near Keighley, from her parents - and once a month she attends Leeds General Infirmary for IV chemotherapy.

“These drugs have side effects for Harlow which would be hard for an adult never mind a child,” Esther says.

“It is so hard as a parent to watch, as you want nothing else but to protect your child from pain but when you can’t do this its heart breaking.

“We have had the heartbreak of watching our child so sick she could not walk from the drugs and her beautiful hair falling out we had to shave off was so traumatic.”

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Despite the challenges, the family tries to stay positive and have nothing but gratitude for the NHS, Leeds oncology team and Macmillan Cancer Support, which has supported them since day one.

“I try to stay as positive as possible day-to-day,” Esther explains. “Harlow is doing well and when she isn’t, I try to focus on how far we have come...You can’t let your thoughts spiral. We try to stay strong as a family.”

Last month, Esther shared their experience by speaking at the Masquerade for Macmillan Ball at the Queens Hotel in Leeds.

“I met Macmillan on the day Harlow was diagnosed,” she says. “I was told we would get a Macmillan nurse and I was adamant I didn’t want one as I felt they had a strong affiliation with end of life and my mind could not go there.”

But Carole Appleby, a Macmillan children’s cancer outreach nurse specialist, has been on hand throughout.

“She assured me that they are there to support all children going through cancer and she made us feel so at ease.

“She showed so much love towards my little girl and embraced my family and our countless questions.

“She was there when we shed many tears about not knowing what was coming next and the anxiousness we felt.

“She showed us how to administer chemo and provided lots of practical support as well as emotional.

“When we felt we couldn’t do it, she was there telling us that we could.

“The work of Macmillan Cancer Support is invaluable to families like mine and the support they have shown us has got us to the place we are today.

“My daughter is now doing well with a year of treatment still to go. I know if I have any questions or I am worried I can call my Macmillan nurse any time.

“Our story is not over yet but we are staying strong as a family and are thankful for the wonderful NHS and charities like Macmillan.”

Macmillan

Across Yorkshire, 120 children are diagnosed with cancer every single year, according to charity Macmillan Cancer Support.

The organisation provides a team of seven specialist children’s cancer nurses and a care coordinator in the region to help families from a child’s diagnosis.

“I love my job,” team member Carole Appleby says.

“Some days it is heartbreaking but to know that I can make the experience for my families a little easier is my reason for going to work each day.”

Supporters raised £247.7 million for Macmillan in 2017, almost £2.8 million more than the year before.

The charity hosted its World’s Biggest Coffee Morning event last month and throughout this month is running another of its flagship fundraising events - its ‘Go Sober for October’ challenge.

The abstinence campaign encourages people to give up alcohol for the month and ask friends and family to sponsor them for doing so.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk