Posted on Wednesday 1 July 2020
Mother diagnosed with cancer at 19 calls on government to provide urgent support to the charity who got her through it all
A mum who was diagnosed with cancer at 19 is asking people to contact their local MP and call on the government to provide urgent financial support to the charity who supported her throughout her treatment.
Lois Parker, 21, from Hatfield was supported by CLIC Sargent, the UK’s leading charity for children and young people with cancer, after being diagnosed with neuroblastoma, a type of cancer, at 19. But the vital support she received 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 a 60 per cent fall in income. The charity has had to put almost all its fundraising events on hold, leaving it facing an £8million drop in the income which 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.
It comes at a time when young cancer patients and their families are more anxious than ever and need vital support from the charity.
Despite its desperate pleas for government support and Chancellor Rishi Sunak’s announcement of a £750 million package for charities two months ago, CLIC Sargent, which provides emotional, financial and practical help to children and young people with cancer, 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 is sharing her story in support of CLIC Sargent’s campaign to highlight how vital the charity’s work is in supporting young people and families during the most vulnerable time.
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.”
In April 2018, just after turning 19, Lois was suffering with back pains so severe she could not pick up Lexi, her baby daughter. It wasn’t until a routine appointment that a doctor suggested getting a MRI done. By August, Lois was diagnosed with neuroblastoma and was asked to start treatment straight away at University College London Hospital (UCLH).
Lois 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’.”
From September to November, Lois had ten rounds of chemotherapy at UCLH. Once chemotherapy finished, she was set to have a bone marrow transplant on her daughter’s second birthday but this was cancelled as there were not enough beds in ICU. Instead, she had more chemotherapy to tide her over. However, she was later admitted with neutropenic sepsis and was really unwell.
“After that, my operation couldn’t go ahead because my heart wasn’t strong enough from such a bad infection 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 I think it was only three weeks in hospital so my Mum and Lexi were able to stay in Paul’s House.”
While Lois was in hospital, her Mum would look after her daughter, Lexi. They were able to stay nearby in Paul’s House, a Home from Home provided by CLIC Sargent so families can stay close to young people as they go through treatment.
“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 in early 2019, Lois went on to have another surgery, radiotherapy and immunotherapy before finishing treatment in November 2019. She had treatment for over a year in total. Throughout the whole time, she was supported by Sarah, her CLIC Sargent social worker.
“She helped everybody out. 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. 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.
“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.”
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. 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 https://www.clicsargent.org.uk/email-your-mp/
Notes to editors
For more information, an interview or images, please contact Emma Gibbons on 07932 666163, or email email@example.com.
About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK
About CLIC Sargent
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk
Note to sub editors
Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.
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