BENDING over to pick up her tiny daughter, Lois Parker felt a sharp pain shoot up her back.
As a 19-year-old new mum, she put the severe ache down to constantly lifting and carrying baby Lexi.
But in April 2018, she got to a point where she was in so much agony that she couldn’t even hold the 16-month-old tot and went to see her GP.
Lois, from Hatfield, Hertfordshire, was told it was sciatica – a type of pain in the nerve that runs from the hips to the feet.
It wasn’t until a routine appointment a few months later that a doctor suggested she should have an MRI scan.
Medics discovered she had a growth on her pelvis and in August 2018, she was given the devastating diagnosis – she had neuroblastoma.
It’s an extremely rare form of cancer usually only seen in babies and young children – and affects just 100 kids in the UK every year.
At 19, doctors were baffled and told her she needed to start treatment straight away at University College London Hospital (UCLH).
Lois, now 21, said: “They started telling me about all the plans for treatment, at the time I didn’t understand a word of it.
“And then I got a phone call the next morning asking to come in that day.
“I was told ‘The doctor wants you admitted because your tumour’s too close to your spinal cord and he wants to be able to get these tests done quickly’.”
Lois, with baby Lexi, needed 10 rounds of chemotherapy to blast the tumour[/caption]
From September to November, Lois had ten rounds of chemotherapy and was set to have a bone marrow transplant on her daughter’s second birthday.
But there weren’t enough beds in ICU, so she was given more chemo to tide her over, however, she was later admitted with neutropenic sepsis – a life threatening complication of anticancer treatment.
“After that, my operation couldn’t go ahead because my heart wasn’t strong enough from such a bad infection,” she said.
“So my consultant switched the whole plan around and I went in for my bone marrow transplant – which I donated myself in February – and I spent only three weeks in hospital.”
Home from Home
While Lois was in hospital, her daughter Lexi was cared for by her mum and they were able to stay nearby in Paul’s House – a Home from Home facility provided by charity CLIC Sargent so families can stay close to young people as they go through treatment.
Lois said: “Throughout this whole time Paul’s House was our little go-to.
“At first I didn’t want to stay there as I thought it was different to Lexi’s life but I wanted her close and that was the best solution, which was so good.
“It was the nicest place for her.”
After her transplant early last year, Lois went on to have another surgery, radiotherapy and immunotherapy before finishing treatment in November.
Throughout her year of treatment, she was supported by Sarah, her CLIC Sargent social worker.
“She helped everybody out,” Lois said.
“Sarah was there the whole time, she was always a WhatsApp away.
“I was really fortunate that her desk was literally next to my consultant’s so if I had any concern during the week she would go and ask him.
“Everything went through Sarah and she just dealt with everything.”
During treatment, Lois was worried about Lexi coming to visit and often missed out on seeing her as she was too unwell or weak.
“The hardest was when I was in hospital, when I was really ill and I just wanted to cuddle her,” she said.
“By the time she was about two I didn’t want her coming into the hospital, because it’s not a place for a two year old – all the wires, the drips – it’s not an ideal place for any kid.”
But now, they are making up for lost time by spending lockdown making new memories together.
Lois is looking forward to the moment she can go on holiday with her daughter but for now is enjoying teaching her to read and ride her bike.
She said: “I have spent every single day with Lexi 24 hours a day so it is really good.
“When else would you get that time to teach your child yourself?
“Lexi was my fight, she was the fire in me. I thought there’s no option here I don’t have a choice not to survive, if I don’t survive who does she have – I did not want to be a memory for her.”
Lois is sharing her story to raise awareness of the vital support she received from CLIC Sargent after her cancer diagnosis.
But that aid is now under threat for other young people facing cancer as the coronavirus crisis has had a devastating impact on the charity.
Since the start of the pandemic, CLIC Sargent – which relies 100 per cent on voluntary donations – has seen an £8million drop in income.
That money pays for support such as social workers to support cancer patients, homes near hospitals where families can stay for free, and grants to help pay for essentials such as food or travelling for treatment.
What is neuroblastoma?
Neuroblastoma is a type of cancer that develops in nerve cells that have been left behind from their development in the womb.
It usually develops in the adrenal glands next to the kidneys but can also form in the spinal cord, neck, chest, pelvis or abdomen and is able to spread to other organs.
It is unknown what causes the cancer but it affects around 100 children in the UK every year with many of them under five.
The outlook for children diagnosed with the condition varies and mainly depends on if the cancer has spread.
The early signs and symptoms of neuroblastoma can be very hard to spot, especially in young babies as they can be mistaken for other common conditions.
However, according to NHS Choices, signs and symptoms of neuroblastoma include:
- A swollen painful tummy
- Difficult swallowing
- A lump in the neck
- Blue lumps on the skin and bruising
- Fatigue, weakness and bone pain
- Jerky eye and muscle movements
There are five main treatments for neuroblastoma and doctors will decide which course of action to take based upon how advanced the disease is.
One option is surgery to remove the cancer and another is chemotherapy to try and kill the cancer cells.
Other treatments include radiotherapy, a stem cell transplant and immunotherapy.
Despite desperate pleas for government support and Chancellor Rishi Sunak’s announcement of a £750 million package for charities two months ago, CLIC Sargent has still not received any financial help from this support package.
The charity are now asking the public to email their local MP and join their call to the government for funding.
Lois said: “CLIC Sargent have been amazing. My social worker Sarah was so supportive and my mum and daughter were able to stay at their Home from Home Paul’s House so they were close by while I went through treatment.”
Helen McShane, director of services at CLIC Sargent, said: “Another month without help from the government’s financial support package has meant we’ve had to take more measures we wish we hadn’t needed to, putting our services for young people like Lois more at stake.
“We urgently need the government’s help and so do the young people and families that we support.
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“With a decline in cancer diagnosis and referrals during the pandemic due to a drop in people visiting GPs, we’re concerned about an even bigger crisis than the one we are already facing.
“We want to thank Lois for sharing her experience and supporting CLIC Sargent to fight for survival and to ensure the government do not forget young cancer patients or their families during the pandemic.
“We really hope the government will listen to them and provide CLIC Sargent with the support we so desperately need.”
- For more information on how you can contact your MP to support CLIC Sargent during the coronavirus crisis visit the website.