Mum shares miracle tale of baby daughter who beat rare cancer, despite being told there was ‘no hope’
Dawn MacGlashan, 47, was devastated when one of her twins, Lilly, was diagnosed with neuroblastoma - the same condition son of TV chef Jean-Christophe Novelli is currently battling
A MUM whose baby was given “no hope” of survival from a rare form of cancer has shared the incredible tale of how her daughter beat the disease, against all odds.
Dawn MacGlashan, 47, and husband John, 53, were devastated when one of their twins, Lilly, was diagnosed with neuroblastoma – the same condition son of TV chef Jean-Christophe Novelli is currently battling – in 2009.
At one point the tot was given just 24 hours to live as an 8cm tumour had grown in her stomach and spread to her brain, spinal cord and both retinas.
But now, age seven, Lilly is in remission after receiving ground-breaking treatment in America.
Dawn told The Sun: “From day one of giving birth to Lilly there was just something different about her.
“It was like she was an old soul – she used to watch us having conversations.
“I was so shocked when Lilly was poorly. Lilly was 6lb, and her twin Molly was 5lb 6, so they were more concerned about Molly, and Lilly was OK.
“But she just had this little pulse in her neck that beat so fast and then her stomach was like a grapefruit, and she used to scream.”
Concerned by her swollen tummy, Dawn and John, from Bedford, rushed five-week-old Lilly to A&E and doctors took a biopsy.
Dawn recalled: “We had to wait for about three weeks for it to come back and them to tell us it was neuroblastoma the stage it was at.
“That was a really long three weeks.”
Lilly was first diagnosed with Stage 4S neuroblastoma, where the original tumour is located only where it started.
Dawn said: “At this point it’s more treatable and curable, but Lilly contracted septicaemia from her Hickman line which they used to put the chemotherapy in, so she had to fight that first.
“After her tumour was removed, Lilly relapsed and we were told the neuroblastoma had developed into the aggressive Stage 4.
“It had spread to her brain, spine and the back of her eyes.
“She was given no hope at all – there was no other treatment out there for Lilly. Doctors said she wasn’t going to make it.
“They gave her another 10 rounds of high dose chemotherapy which they said she would not survive, and they gave her a bone marrow stem cell transplant and that was basically all they could do.
“I felt absolutely awful and let down because there was another child with neuroblastoma, and because they fit the category, they got immunotherapy to treat them.
“But because Lilly was given no chance of survival, even though she was surviving, they just couldn’t offer anything else.”
Dawn and John were determined not to give up.
Their doctor at Addenbrookes Hospital in Cambridge told them about a pioneering treatment at a clinic in America and recommended the charity Kids Solving Cancer (then Neuroblastoma Alliance).
The private Memorial Sloan Kettering Cancer Center in New York, which successfully treated actor Michael Douglas for throat cancer in 2011, offered an experimental antibody drug called 8H9.
There, after another final course of chemotherapy followed by radiation therapy to tackle the remains of the tumours, Lilly had a series of 8H9 injections into her brain via a catheter implanted under the scalp.
This eradicated the remaining bits of cancer in her brain, spine and retinas which were too tiny for the chemo and radiation to blast.
But her treatment didn’t come cheap.
What is neuroblastoma?
Neuroblastoma is a rare cancer of the nervous system that mostly affects babies and young children under the age of five.
It develops from specialised nerve cells (neuroblasts) left behind from a baby's development in the womb.
Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.
It can spread to other organs such as the bone marrow, bone, lymph nodes, liver and skin.
The cause is unknown and there is no known cure.
In some very rare cases, children in the same family are affected, but generally the condition doesn't run in families.
Symptoms vary depending on where the cancer is and whether it has spread, but they can include a swollen painful tummy, breathlessness and difficulty swallowing, a lump in the neck
blueish lumps in the skin and bruising, particularly around the eyes.
Around 100 children in the UK and 600 children in the U.S. every year are diagnosed with neuroblastoma.
For more information visit the NHS Choices website.
Dawn told how getting Lilly better has cost well over £1.1million, excluding the treatment she had in the UK on the NHS.
She admitted: “That is an astonishing amount of money, but when it’s your child, no amount of money is too much. We’ve had to fundraise hard but we had a lot of support.”
The couple teamed up with Solving Kids Cancer and called on friends, family and their local Dunstable community to help.
Dawn explained: “We never, ever gave up hope because Lilly was such a robust, happy little girl.
“We started fundraising, all my family got involved and there was a lot of publicity – it was brilliant for Lilly, she’s a very lucky little girl.
“Without the support from everyone and the charity I dread to think where we might have been.
“People always used to say to us, ‘How did you do it, how did you manage to keep going?’ – and it was Lilly who kept us going, it was her will to survive made us strong to get her what she needed.”
Dawn has three grown-up children – Danielle, 30, Luke, 24, and Lauren, 22 – and John has a daughter, Megan, 21, from a previous marriage.
She said they were all “absolutely brilliant” when it came to spreading the word about Lilly.
She added: “They were so strong and did so much, and my mum did a lot of research for us.
“You need to know so much about neuroblastoma, you have to arm yourself with so much ammunition because it’s a minefield – every child’s case is so unique.
“To watch a child fight is just the most awful thing but it’s very inspirational – you just can’t imagine it until you’re in that situation.”
In order for Lilly to have her treatment in New York, the couple had to reside in Manhattan for months on end, travelling back and forth 13 times over three years.
Dawn said: “We had to live there for nine months, come back for three months, then live there for another three months, and for the next two years we travelled every eight weeks.
“The charity would help pay for flying us there and the costs of her treatment, and that went on until she was three-and-a-half.
“I did hairdressing before but obviously I stopped after I had Molly and Lilly, but my husband works as an electrician and his engineer colleagues raised a lot of money as well.
“Each month they put money in our account and they paid for us to have an apartment in New York for the first nine months.”
“They were absolutely fantastic – with them, our doctor and the charity, and the public and all our family we never gave up hope.
“We fought against the inevitable.”
Now Lilly is in complete remission.
Dawn explained: “We’ve just been to Great Ormond Street last week, Lilly had a check-up and she’s doing really well. She has an MRI scan once a year.”
The mum told how Lilly is thriving at school, having initially been behind the rest of the children due to the radiation in her brain.
Dawn said: “She has one-to-one and she’s the happiest little girl, a real feisty one!
“All she has now after everything she’s been through are daily growth hormone injections to help her grow.
“She has a hearing aid in each year and she’s got the start of cataracts which is a side effect of the radiation.
“But she’s got the most fantastic quality of life, she goes to mainstream school with her twin sister.
“The children absolutely love her because she makes them laugh every day, she’s such a clown.”
Dawn said she was shocked to hear the tragic news about Jean-Christophe Novelli’s eight-month-old baby boy.
She explained: “I couldn’t get over that because he lives not far from where we do. I see his face every day on the posters along the dual carriageway.
“My heart really went out to him because he’s got the journey that we went through with our daughter to come, but there is hope out there.
“There’s no way we could have done it without the charity because they helped us through so much.
Alternatively you can contact Vicky Inglis, Solving Kids’ Cancer Family Coordinator, at Vicky@solvingkidscancer.org.uk.
Earlier this week we reported on the tragic death of four-year-old Jessica Whelan from neuroblastoma.
Her dad posted a candid photo of his daughter to social media to show 'the true face of cancer'and raise awareness of the reality of the devastating disease.