‘We didn’t worry when 2-year-old refused to use potty – then her lips went blue’ – Mirror Online
It was back in November 2015 when Lynsay Hughes and her husband Andrew, a project engineer, both 38, first noticed their two-year-old Evie was out of sorts.
Wed begun potty training and it was going really well, but Evie suddenly started refusing to go to the toilet and got very whingy, explains Lynsay, a swimming teacher.
Shed been quite a sickly baby, so initially we didnt think much of it.
When Evie went off her food, got dark circles under her eyes, and seemed to have no energy, Lynsay took her to the GP.
The little girl was then referred to North Tees Hospital, near the familys home in Stockton-on-Tees.
She spent five days there, before eventually being diagnosed with a chronic kidney infection, and discharged.
I just wanted to get her home for Christmas, says Lynsay, also mum to Oscar, now nine.
She was fine for a few days and then her health plummeted her legs, feet and fingers began to swell and her lips went blue.
Andrew took her to the park and she vomited everywhere. We knew something wasnt right.
Lynsay went back to hospital, where Evie was given an ultrasound.
A doctor came out and said, Do you want to wait for your husband? but I never dreamed it would be anything serious so I said, No, just tell me now.
He explained that while he wasnt a paediatric expert, they had found a mass around Evies tummy and wanted us to be transferred to specialists at the Royal Victoria Infirmary in Newcastle.
Andrew met us at the bigger hospital we knew it was more serious, but I still wasnt thinking about cancer.
Even when we went to meet an oncology consultant, I wasnt panicking because I honestly didnt know what the word meant.
The first time we realised it was cancer was when a doctor came in the room and said, Im going to take a biopsy of Evies tumour.
What she had a tumour? Andrew and I just looked at each other in shock.
The couple were soon ushered into a room full of different medical people consultants, nurses, anaesthetists and were told the devastating news: Evie had stage 4 neuroblastoma.
Neuroblastoma is a very rare childhood cancer that affects only about 100 children a year in the UK.
I was in complete shock, recalls Lynsay.
I said to the doctor: Are you telling me my daughter has cancer? he replied: Im not just telling you she has cancer, Im telling you she has the beast of childhood cancers. Those were his exact words.
Andrew burst into tears, but I couldnt take it in, I just held his hand feeling gutted, totally heartbroken.
It was on 22 December 2015 when that devastating diagnosis was confirmed: Evie had a 13cm tumour the most aggressive kind which was wrapped around her main artery.
The disease had also spread to her bones. Knowing staff would be short for the festive season, doctors moved quickly.
On Christmas Eve, the poorly toddler began her first, gruelling round of chemotherapy.
It was only when Evie had her line to receive her chemotherapy fitted into her little body that the enormity of the situation finally sank in, admits Lynsay.
I let out some noise that Andrew tells me was like a shriek and I fell to the floor. It was like the world had stopped.
But somehow we dragged ourselves through Christmas, trying to put on brave faces to watch Oscar open his presents.
Evie was too poorly to care about gifts.
The next year went in a blur of treatment and surgery.
Evie was put on a 10-day cycle of different chemotherapy drugs for 80 days to target the disease in her bones.
Then she had the tumour surgically removed, a stem cell harvest, high intensity chemotherapy with stem cell replacement, and radiotherapy every day for three weeks.
She was also put on a clinical trial for immunotherapy, designed to kill the bad cells while protecting the healthy ones for a further six months.
It was unbelievably traumatic. If Evie woke up in a different room to the one she went to sleep in, or if we werent there, she would scream and scream.
We explained to her that she had a nasty bug in her tummy and the doctors were giving her medicine which would make her feel funny but would make her better in the end.
We named her feeding tube Tommy and her chemo drips Wally and Dolly, to try and make things less scary for her.
She took her beloved Teddy everywhere.
When Evies blonde curls fell out in lumps, my friend who is a hairdresser came and cut it into a bob for her.
We told her she had superpowers, thats why her hair had fallen out.
Her big brother, Oscar, was so sweet when he came to the hospital, he would make friends with the other children on the ward and be so protective of her.
There were times when I was terrified she might die, but I just willed her to be better and wouldnt allow myself to think the worst.
We put on a brave face at home for Oscar, but when I was in bed I would cry and cry and my heart would be racing with the anxiety and stress.
I just had to focus on the next part of the treatment.
In between we tried to do nice things we took her to The Lion King in London as a treat, and we went camping in the Lake District.
Lynsay gave up teaching swimming to be with Evie full time, Andrew cut down his hours as a project engineer, and Lynsays sister would take care of Oscar when both parents had to be at hospital.
Finally, in March 2017, after more than two years of treatment, the family received the news they had been longing to hear: Evie was cancer-free and in remission.
To mark the momentous occasion, the hospital have a special end of treatment bell that children get to ring at the end of their chemotherapy.
It was a huge day for us.
Evie wore a new dress with rainbows on it, and our whole family came to the hospital to watch her ring the bell.
We all cried buckets.
Afterwards, we went to a restaurant in Newcastle where everyone made a fuss of her and had a big party, with Evie getting a knickerbocker glory.
Shes two and half years in remission now and living a normal, healthy life.
Shes in Year One at school, has lots of friends, and her hair has grown back. She loves dancing and drama and riding her bike.
This Christmas we will be surrounded by our family at our home and we are determined to enjoy every second.
Evie is madly into Barbies and Frozen and cant wait for Father Christmas to come. Shes definitely been good!
And we have the best present you could possibly imagine our family, together.
Neuroblastoma (neuro = nerve, blastoma = collection of tumour cells) is a tumour arising from particular nerve cells, which run up the back of the childs abdomen and chest and into the skull, following the line of the spinal cord.
The tumour occurs either in the sympathetic nervous system, or closely associated adrenal glands, and is usually, although not always, located in the abdomen.
Neuroblastoma affects around 100 children each year in the UK. It usually affects children under the age of five, and can occur before a child is born, because it develops from the cells left behind from a babys development in the womb. It is the most common solid tumour in childhood after brain tumours.
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'We didn't worry when 2-year-old refused to use potty - then her lips went blue' - Mirror Online