Supporter Stories

Harry’s Story

Harry Oades was diagnosed with T-cell Lymphoblastic Lymphoma, a rare form of Non-Hodgkin Lymphoma, in November 2017, aged just 5 years old.
Harry had been feeling unwell for a number of weeks and had developed a lump in his neck, but he was still attending school and running around, albeit with a bit less energy than usual. Then he began to develop shortness of breath and a cough which resembled croup. After a visit to his GP Harry was referred for an ultrasound at the RVI. The scan showed that the lump in Harry’s neck was actually the top of a large tumour in his chest. The tumour was crushing his airway and causing the symptoms he had been experiencing. He was immediately admitted to Ward 4 at the Great North Children’s Hospital and his treatment began straight away.
Harry’s Dad Richard said: “The impact of a childhood cancer diagnosis is massive, obviously on the child, but also on the rest of the family. Our lives have changed enormously. We have different priorities now and limitations on where we can go and what we can do, but you adapt and take pleasure from simpler things. Harry has 2 older sisters who have been with him every step of the way. It is hard for anyone to fully understand the impact of a cancer diagnosis on siblings, they have to make huge sacrifices, but my wife and I are proud of the way they have coped.”
“2018 was a very challenging year, but we have been very well supported by family, friends and professionals. The doctors, nurses and support team at the RVI are truly amazing, we are so grateful to them for all they have done for us. Most importantly, Harry has responded to his treatment very well.”
Harry and his Dad Richard, Headteacher of Highfield Middle School, helped to launch the 2019 Children’s Cancer Run. Richard said, “We first supported the Children’s Cancer Run as a school in 2017. We had a great day and vowed to return in greater numbers in 2018. However, we had no idea that our school would be so affected by childhood cancer in the months that followed. 3 children associated with the school were diagnosed with cancer in a very short period of time. First, my son Harry was diagnosed in December, then sadly a few weeks later my colleague’s baby boy Joey was also diagnosed. Unbelievably, just weeks after that, a pupil, Katie, who has already shown incredible courage to win one battle with cancer, heard the news that she would have to fight the disease again. The whole school community really pulled together to support each other and to show how much they cared for the affected families. The turnout for the run was overwhelming, with over 150 pupils, parents, staff and friends running for Highfield.”
Highfield Middle School went on to win the Sandy Weir Trophy in September 2018 for being the school with the most funds raised last year, hitting an incredible £8,558. Richard is very proud of his school’s achievement, “So many of our pupils got involved in the race and we are proud of them all. However, particular recognition should go to Luca, he has Dystonia, a neurological movement disorder. Completing the run was a real challenge for him, but he managed it with a smile on his face and raised well over £1000 on his own. What a fantastic achievement!”.
Richard went on to say “Harry is currently still undergoing chemotherapy treatment at the Great North Children’s Hospital, he is doing really well and managing to attend school most of the time. Katie underwent intensive chemotherapy and surgery in the Autumn and has responded incredibly well. She is in remission and we are delighted to have her back at school full time. They have both shown amazing resilience throughout their treatment. Sadly baby Joey passed away in September, both he and his parents inspired us all with their positivity and fighting spirit during their journey. Our school community will never forget Joey and we will continue to fundraise in his name.”
“My family and I feel blessed to live in Newcastle and be so close to hospitals and research facilities at the forefront of cancer care. The work carried out by NECCR is so important to improve life chances for children fighting cancer and reduce the impact of a cancer diagnosis on children and their families. Whilst working to improve the effectiveness of treatment, a lot of their research looks at finding ways of making cancer treatment shorter and less toxic.”
Everyone at Highfield Middle School are looking forward to taking part in the 2019 Children’s Cancer Run. “The run is really well organised and a great day out. Fresh air, fun, exercise and community spirit, all in the name of a fantastic cause. I would encourage every school in the region to get involved.”

Caroline’s Story

Caroline Brown from near Alnwick, Northumberland, was an outdoor loving seven year-old when she was diagnosed with the rare cancer Rhabdomyosarcoma in the head. The tumour, due to its position, is inoperable so Caroline needed intensive chemotherapy and a trip to America for specialist treatment to shrink it.
Caroline lives with mum Lucy, Dad Michael and her inseparable cuddly bear Otto who has been by her side throughout treatment.
Caroline’s mum Lucy writes a blog on encouraging children outside more to enjoy nature called “Kids of the Wild” and said: “Caroline started getting earache in November 2016, then a lump by her ear. After being dismissed as an ear infection initially, she became quite poorly and seemed a lot more tired than usual.
“Eventually after an MRI scan in March 2017, things moved very quickly as we discovered she had a stage 4 tumour in her head which due to the connection to nerves wasn’t possible to remove. Chemotherapy and radiotherapy were our only option, so just days later after a barrage of tests and scans she began her first round of treatment.”
“She had 9 rounds of chemo, which affected her quite badly, she was very poorly and in isolation a lot. Luckily I was able to spend pretty much all my time with her, but Michael my husband still worked throughout. I would stay with her through the chemo treatment and he would return home at night, finding this incredibly hard. Michael’s work was very supportive though, giving him as much time off as needed.”
A trip to America was necessary for Caroline, funded by the NHS, to receive proton beam radiotherapy. This treatment which is as yet unavailable to children in the UK is able to target tumours very accurately and prevent damage to the surrounding site such as the face and brain in this case.
Caroline has written her cancer treatment story as a therapeutic journey on her mum’s blog in the eyes of her favourite cuddly toy. Otto the bear tells his story from Caroline’s side during every procedure, from lying on her tummy in an MRI scanner, to being with her in radiotherapy even when her mum couldn’t be in the room. He even got his own hospital wrist band from one of the nurses, and was invaluable as a comfort for her.
She is now in remission since her last round of tests in October 2018, and has been sharing her experience by talking at school assembly and local groups like her Cub pack. Lucy has mixed feelings now she reflects back on the year. “Occasionally I’ll just look at her and cry. A year in remission fills me with amazement she’s made it, and regret that it ever happened.”
“It’s an unnameable emotion, like a type of grief. You’re still terrified, but I look at Caroline and it’s as if it’s never happened, her recovery has been remarkable. It was wonderful to celebrate her birthday recently with a surf party and outdoor campfire, whereas last year she just didn’t want anything.”
The family are looking forward to taking part in the 2019 Children’s Cancer Run and supporting the North of England Children’s Cancer Research (NECCR) to raise funds for research, having seen first-hand the work going on in the region.
Lucy said: “We couldn’t believe our luck when we discovered that the RVI has the highest survival rate of paediatric cancer in UK. We felt so blessed to be at that hospital. For me, as well as the incredible doctors and staff, that success must be down to the research that’s going on in the background. Chemo is the most horrific thing to watch your child go through, it destroys them. Research is vital to make this less aggressive and if possible, more tailored to each child.”

Joe’s Story

Joe was treated at the Royal Victoria Infirmary, in Newcastle, after he was diagnosed with Acute Myeloid Leukaemia in October 2017 following emergency surgery.
The teenager underwent four rounds of chemotherapy but needed a bone marrow transplant, which he had in April 2018 thanks to donor cells from little sister Grace.
After almost ten weeks in total isolation, Joe was able to go home to his parents in Brandon, Durham, in June last year. He still attends the RVI every week for appointments and treatment.
Joe from Durham was diagnosed aged 17 after a visit to their local A&E following a very brief illness of vomiting and stomach pains. He underwent emergency surgery to remove tumours in his bowel, and was then sent on to Ward 4 of the RVI immediately.
Joe’s mum Joanne said “The consultants and staff worked all weekend trying to find a diagnosis as Joe had no previous history or symptoms.
“We were told on the Monday that he had acute myeloid leukaemia and treatment needed to be started immediately. Three days of tests and procedures followed and on the Friday chemotherapy started.
“Our life as we knew it stopped and turned upside down. Things still aren’t back to normal.”
Joe had 3 rounds of chemotherapy, with countless scans, procedures and admittances to the ward due to infection and viruses.
Joanne went on to say “In January 2018 we were told that the chemo wasn’t giving the results expected and as the chance of relapse was extremely high he would need a bone marrow transplant.
“Luckily Joe’s younger sister was a match. In April 2018 he entered the bubble for a transplant and had another round of intensive chemo. Just over nine weeks later he went home.”
Recovery is still ongoing with fortnightly clinics and restrictions still in place.
She was full of praise for NECCR and the work it funds:
“Before this we were not aware of the work the NECCR do as childhood cancer didn’t affect us. I would say to anyone to thinking of doing the run to go for it – the research done is pioneering new and kinder treatments for children now and in the future and it’s crucial it continues.”

Dominic’s 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.”

Dylan’s Story

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, became unwell 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.”

Katie’s Story

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 2^nd 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.”

Chris’s Story

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.

Joseph’s Story

Joseph’s Mum, Amy, shares their story

“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.

In memory of Katie Slyderink

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 Good Will Cause

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.

www.facebook.com/thegoodwillcause @GoodWillCause