We are only able to fund the fantastic research carried out in Newcastle because we have such dedicated and inspiring supporters raising money and awareness. Find out more about some of our supporters here, or please get in touch if you would like us to share your story.
Dominic Halliwell, now three years old and starting nursery, was just 10 weeks old when he was diagnosed with a rare form of cancer. After an initial MRI scan, cells were sent away for analysis and Dominic was diagnosed with disseminated leptomeningeal glioneuronal tumour. A film of malignant tumour cells were covering Dominic’s brain, central nervous system and spinal cord.
Dominic then spent five months receiving gruelling chemotherapy treatment on Ward 4 of the Great North Children’s Hospital, battling for his life.
Dominic’s Mum, Natalie, said “From the outside Dominic looks like any other little boy. He is doing well and, as far as we are aware, the cancer he had has gone. But because his condition is so unique, the future remains unclear and we don’t know for sure what is going to happen.”
Your support will help researchers to find better treatments and cures for children like Dominic.
Dylan Williams from Jesmond, Newcastle, had just turned 12 when he was diagnosed with Hodgkin’s Lymphoma, a cancer of the lymphatic system, in December 2015. Dylan, who is now 13, becameunwell over the summer after developing an itch all over his body, becoming progressively more tired and prone to infections. By November, he developed a large lump on the left side of his neck. After repeat visits to his GP with blood tests returning normal results, Dylan became increasingly ill over the Christmas period. Suffering from breathing problems, Dylan’s parents took him to paediatric A&E at the Royal Victoria Infirmary where he was admitted and subsequently diagnosed with cancer.
Mum, Manuela Williams, said: “It was a very challenging and difficult period overall. After admission and diagnosis in December, Dylan and I remained at the Great North Children’s Hospital for three weeks so that his conditions could be stabilised. During this time his airways were very narrow because of compression from the very large tumour.”
On the first day of chemotherapy, Dylan had an anaphylactic reaction to one of the drugs, so treatment had to be stopped until a substitute drug could be found. Fortunately a replacement drug was found which Dylan responded to well and the family left hospital shortly after treatment.
Manuela continued: “Unfortunately two weeks later Dylan developed a blood clot in his right arm which required another admission to hospital; during treatment Dylan also developed a strong viral infection and was kept in for a further 10 days.
“Dylan was on very high doses of steroids as part of the chemotherapy treatment, and was becoming increasingly frustrated, angry and depressed as he felt unwell and isolated from his friends who were back at school. He had started losing his hair and putting on weight and struggled to recognise himself in the mirror. At this stage, his emotional wellbeing seemed more compromised than his physical health.
“I cannot praise enough the work carried out by the nurses and doctors who worked tirelessly to improve Dylan’s conditions and reassure him. The superb support offered in particular by his consultant, by the psychologist and the play nurse specialists got him, and us, through those challenging circumstances.
“Once his chemotherapy was completed in April 2016, we then began genetic testing to make sure that the radiotherapy treatment would not be harmful. Because of our family history with cancer the doctors looked for potential genetic syndromes that might affect the short and long-term effects of the radiotherapy. The results of all tests came back negative and Dylan began radiotherapy treatment in July at the Northern Centre for Cancer Care at the Freeman Hospital.
“The experience as a cancer patient at the Great North Children’s Hospital has not put Dylan off his long-standing dream of becoming a doctor, if anything it has reinforced it as now he has experienced first-hand how important the dedication, expertise and care offered by doctors to sick children is.
“Today Dylan is doing very well and has made a remarkable recovery, but the emotional impact of his ordeal is beginning to manifest now, and this is why the medical team has remained very much involved in his life during this first phase of the post treatment period.”
Seven-year-old Katie Bain from North Shields was just two-days-old when her parents learned she had Down’s syndrome. Katie’s mum, Christine, and dad, Paul, knew that because of her diagnosis she was at increased risk of Leukaemia. But at 20-months-old, after a routine blood test, nothing could prepare them for Katie’s Acute Myeloid Leukaemia (AML) diagnosis.
Katie’s Dad Paul explained her story: “Katie had been unwell with flu-like symptoms but also had tiny spots on her body (petechiae) and swelling of her neck due to inflamed lymph nodes. Katie initially underwent four rounds of chemotherapy lasting six months. She was only allowed home for a few nights in total during this time. Mum and Dad took turns to stay with her and friends and family rallied round. She was declared in remission after the treatment and we went home. However sadly she became unwell three months later and we were told to everyone’s shock that the Leukaemia had returned. Katie had to repeat the chemotherapy, only this time it was also followed with a bone marrow transplant.
The whole experience has been a challenge, fearing the loss of your child, not knowing what to expect, asking ‘why her?’ and dealing with living in a hospital. Christine had to give up work and I took time off work to help care for Katie. She has had hundreds of blood transfusions but worryingly became allergic to these. There is also a constant fear of not finding a bone marrow donor, or that the donor would change their mind. This worry continues until the transplant has started.
The transplant took place on 2nd Feb 2012 and involved us all living ‘in a bubble’ for three months. The bubble was a purpose built room with very strict rules to protect her as she had no immune system during this treatment. Following the transplant we were then slowly allowed to re-introduce Katie to the real world and thankfully received the all clear again. She has remained clear since, although we take each day, week and month as it comes.
The threat of losing your child is something that is very hard to deal with. It is something that stays with you from the day of diagnosis, and never goes away. Every time Katie is poorly you cannot help but fear the worst. I would love to be like 99% of the population who don’t think ‘cancer’ every time their child has a temperature.
While in hospital, we made a lot of new, amazing friends on the ward and they will remain so for life. Sadly we have watched some of them lose their children to cancer and I can’t imagine anything more difficult to face in life.
While in hospital we were told it was very rare for a child with Down’s syndrome to relapse following treatment and that Katie was the only child with Down’s syndrome to have a bone marrow transplant outside of Great Ormond Street, London. In agreeing Katie’s treatment the Newcastle consultants were in regular contact with experts from all over the world.
We first found out about the NECCR from one of Katie’s doctors and at this point I decided to begin fundraising for the charity to help support the clinical trials taking place in the North East that help to develop new therapies to improve survival rates and develop less aggressive forms of treatment. To us this was an easy decision, as throughout Katie’s time at the RVI there is only one thing we clearly wanted and that was a cure.
The biggest reward is simply having Katie with us today, seeing how we have all supported each other through this and how brave she was during the 12 months she was in treatment. She took everything in her stride. She is amazing.”
Help more children like Dylan and Katie beat cancer
Chris Peacock – NECCR Chairman and childhood cancer survivor
I had a Wilms tumour when I was 4 years old. That’s 38 years ago! Wards and hospitals have changed greatly since I was in one. It was all very scary and treatments were not specialised for children back then. I was undoubtedly one of the lucky ones – only around 25% of children survived back then. I made many friends who just didn’t make it. It was so sad.
Thankfully survival rates are almost 80% now and we have specialist professors, doctors, nurses and researchers who receive funding from the NECCR. This was ultimately why I became chairman of the charity – I want to see this terrible disease eradicated.
“When our little boy Joseph was just 8 months old he was diagnosed with a rare and very aggressive brain tumour called ATRT. The news was devastating, and we were told that the chances of treatment working were slim. After brain surgery couldn’t remove all of the tumour he then went through 11 rounds of chemotherapy, high dose chemotherapy and a stem cell transplant.
The side effects of this intensive treatment were horrendous and extremely tough for such a little boy, Joseph’s whole life revolved around hospital, attached to lines, and fed through a tube.
High dose chemotherapy completely wiped out his own immune system and it left him in intensive care, fighting for his life.
Luckily, against the odds, scans showed that the treatment had worked and that there was no longer any sign of the tumour. He’s now a lively three year old, and 18 months post treatment he’s doing so well. However, we know he will always have to live with the side effects of this intensive treatment.”
In 2016 Joseph’s parents, Amy and Alex, set up Joseph’s Appeal with the aim of raising £11,000 – that would have been £1,000 for every round of chemo Joseph had endured. By the end of 2016 they had absolutely smashed their target, raising an incredible £35,000 for research into childhood cancer treatments.
We first found out about the NECCR when Katie was having treatment at the Great North Children’s Hospital. She was diagnosed in 2011 with a rare, aggressive brain tumour and she underwent surgery, chemotherapy and radiotherapy.
Katie attended Whickham Front Street nursery towards the end of 2011. Getting to know Katie and learning of her ordeal prompted some of the teachers to organise an event to raise awareness and support the NECCR. Children from nursery and reception walked from the school to Chase Park and this became known as the Whickham Waddle. It has been held annually since then and has expanded to include children from nearby schools.
In 2012 we were joined by friends and work colleagues in the Great North Run and raised over £6500.
Despite her intensive treatment Katie was found to have a recurrence of her cancer in 2012. She died just before Christmas. The following year I wrote a book called The Thirteenth Star as a way of retelling her story in the form of a children’s fantasy novel. Profits from the sale of each book go to the NECCR.
It’s hard to put into words how devastating the loss of our daughter has been. We will continue to support the NECCR and its efforts to fund research for better treatments for childhood cancer.
The book can be purchased on Amazon or via the link below
On the 3rd June 2014, William (Will) Woods, our beloved son, brother, grandson, nephew, cousin and friend died suddenly from a rare and aggressive childhood cancer called Burkitt lymphoma. This is a rare cancer of the white blood cells. About 50-60 children are diagnosed with Burkitt lymphoma in Great Britain each year.
Will was 5 years old, 13 days from his 6th birthday.
To celebrate Will’s life The Good Will Cause was set up by Will’s family and friends in the hope that something positive may come out of such a tragic loss.
The primary aim of The Good Will Cause is to raise and donate the majority of funds to the North of England Children’s Cancer Research Fund specifically to support the Lymphoma Research Team at the Northern Institute for Cancer Research.
Within the Northern Institute for Cancer Research at Newcastle University a growing group of researchers, led by Dr Chris Bacon, Dr Vikki Rand and Dr Simon Bomken are trying to develop understanding of childhood lymphomas, of the gene faults which happen to cause the lymphoma and of the best ways to target those gene faults, specifically attacking the lymphoma cells whilst leaving other cells unaffected. They are developing collaborations with other interested researchers around the UK to maximise the opportunities to study this rare tumour. However, this work must be rigorous and therefore takes time. It is also very costly, and it is for these reasons that the interest, support and amazing fund raising of supporters of The Good Will Cause is of such importance.
Our amazing TGWC supporters have so far exceeded our target of £50,000 and we will continue to raise as much as we can through supporting NECCR events and that of our own.