Always remembering
Jamie’s cheerful, happy spirit, cheekiness and tenacity will never be forgotten by everyone who met him. His beautiful and infectious smile inspired thousands of people during his fight with neuroblastoma. Jamie passed away when he was seven years old.
Born in Germany, Jamie was a much longed for first child to parents John and Vicky. As a military family stationed overseas, Jamie enjoyed a fun, happy, loving and carefree early childhood. He loved Bob the Builder and Ben 10, and his favourite food was pasta! He was also very excited about becoming an older brother in three months' time. Those carefree days changed though on 1st April 2009.
A phone call from Jamie’s nursery led to mum Vicky taking Jamie to their military GP as he was complaining of a sore tummy and was very lethargic. The GP carefully examined Jamie and felt his abdomen. She urgently referred Jamie for an ultrasound at the local KinderKlinik where Jamie had been born. That ultrasound revealed a large abdominal mass and Jamie was transferred that same day to the University Hospital in Dusseldorf.
Scans and tests confirmed that Jamie had stage 4 high-risk neuroblastoma with MYC-N amplification. He was just three and a half years old. The disease had spread to various parts of the body and infiltrated his bone marrow.
‘Seeing our little boy get so ill, so quickly was heart breaking’, say parents Vicky and John. Jamie began chemotherapy straight away. He won the hearts of all the amazing staff on the oncology ward – despite everything that was happening he trusted his doctors and nurses and hardly complained. The Chemo-Casper book really helped Jamie to understand in an age-appropriate way, just what was happening.
Frontline treatment was harsh and at times brutal. But cuddles with his new-born baby sister sometimes helped, as did distraction with Power Rangers movies. After round six of chemotherapy, Jamie developed a life-threatening sepsis. He was ventilated and the military helped organise flights for Jamie’s grandparents to be at his bedside. Miraculously, Jamie pulled through (and tried pulling out his own ventilation tubes!) - such was his determination to be up and running around on the ward again.
Jamie’s frontline treatment continued which included stem cell transplant and high-dose chemotherapy. The toxicity of this phase of treatment in January 2010 was almost too much for Jamie, and Vicky and John were prepared for Jamie to be admitted to intensive care. Again, Jamie somehow pulled through and made a good recovery.
At the same time as this was happening, the family were right in the middle of an urgent fundraising campaign. After much research and decision making, John and Vicky had decided to launch a fundraising campaign in December 2009 with Solving Kids' Cancer UK to raise funds for access to immunotherapy for Jamie. At that time, immunotherapy was not available through the NHS and was only available in America. The hope was that a clinical trial of ch14.18 antibody with IL2 given at the end of frontline treatment for patients in first complete remission, would potentially prevent a relapse. The timeline to raise the funds was tight. Jamie needed to be enrolled on the trial within 12 weeks to be eligible. This meant raising £250,000 upfront in less than 12 weeks for Jamie to start this pioneering treatment.
With the amazing support of their military community worldwide and German community and media, their ‘Keep Jamie Smiling’ campaign raised enough funds for Jamie to travel for treatment. The family moved to Philadelphia for 6 months where Jamie received immunotherapy under the care of Dr John Maris at the Children’s Hospital of Philadelphia. It was a tough regime but there were 3–4-week gaps between treatment, which allowed Jamie and his family respite from the hospital and demands of neuroblastoma treatment.
Jamie completed all his treatment the day before his 5th birthday in August 2010. Once the birthday celebrations were complete, the family travelled back home to Germany. Jamie was free from detectable disease.
The family then returned from Germany to the UK in November 2010 after eight years of living overseas. A military posting to Imphal Barracks in York meant that Jamie’s follow-up care was moved to Leeds. For the next 18 months, life for Jamie and his family was about adjusting - adjusting to life outside of the hospital environment, which had become their home, comfort and reassurance, and adjusting to life after cancer and the anxieties of being off treatment. For Jamie’s parents, there were new challenges as both took up different positions in their Army and Teaching careers respectively.
Jamie loved his new adventures in the UK and finally in February 2011, the day came when Jamie could start primary school.
"That first day at school - albeit a year and a half later than his peers – was monumental. Not only because of the emotion of all that Jamie had been through to even run into a school playground but also because Jamie had got himself dressed that morning. For the first time. Without any help and in a school uniform he hadn’t worn before!”
Jamie’s mum, Vicky
Cheeky Jamie settled in very well to school life and enjoyed experiencing things which can sometimes be taken for granted – parties, play dates, school trips etc. He thrived at Lord Deramore’s Primary School - little did Vicky and John know just how important Lord Deramore’s and its school community were to become...
Worryingly at the end of February 2012, a now 6-year-old Jamie began to complain of a sore back. With the pain getting steadily worse and whilst further arrangements for scans were being organised, Jamie suddenly became paralysed from the waist down. Transferred by ambulance from York hospital to Leeds, emergency scans revealed what John and Vicky instinctively feared. A tumour at the top of the spine was compressing on Jamie’s spinal cord. Not only had Jamie suffered a relapse of neuroblastoma but nobody could say whether Jamie’s paralysis was permanent or not.
Jamie underwent emergency spinal surgery and after a long eight hours, the surgical team confirmed they had successfully removed the tumour. Jamie’s recovery from surgery was astonishing. He was quickly moved from intensive care to the HDU where from his bedside, in true Jamie style, he was terrorising the staff with cheesy wotsit monster fangs in his mouth! In the days following his surgery, there were signs of feelings in his legs. Jamie was determined to walk again.
Once home from hospital and in between his relapse chemotherapy, he wanted to go back to school. With his first visit back being so soon after his surgery, Vicky didn’t want Jamie to overdo it so arranged a 20-minute visit towards the end of the school day. Jamie was still in a wheelchair but on arrival at school to the back doors of his classroom, he carefully got up from his wheelchair. Although a little unsteady and refusing to hold onto anything, he took his first steps back into school in front of all his friends who were gathered on the carpet area. It was just before pick up time and there wasn’t a dry eye among the parents waiting. Jamie was so proud that day, as was everyone.
Jamie’s salvage chemotherapy to treat his relapse was incredibly hard. His blood counts really suffered, and he required numerous platelets and blood products. Other side effects also meant additional inpatient stays in hospital, but the best news was that he was responding to the treatment. With no known cure for relapsed neuroblastoma, Vicky and John’s attentions turned once again to the neuroblastoma research landscape.
John and Vicky discussed their plans to access the HAPLO Stem Cell treatment with their treating team at Leeds. The cost of potentially accessing this was huge. It wasn’t available through the NHS but was available back in Germany in Tubingen. The family, with support from their treating team, wrote to their Primary Care Trust for support. John’s relative, Baroness Sue Masham raised Jamie’s plight in Parliament. Meanwhile, another time critical urgent campaign was launched to raise the funds required. Lord Deramore’s Primary School and community embraced and championed Jamie’s campaign. The kindness and generosity of others locally, nationally and globally enabled Jamie to travel to Tubingen to start his treatment in August 2012.
Things initially went well. Jamie enjoyed living in the Eltern Haus [Parent House] in between treatment and would explore the grounds – finding the best spiders to capture to scare his mummy with!
Sadly, four months into the treatment, there were severe complications with Jamie’s lungs alongside the re-activation of the HHV6 virus in Jamie’s brain stem. After 2 months in intensive care, Vicky and John made the heart-breaking decision to switch off Jamie’s life support.
His family updated their supporters with this heartfelt and poignant message, written by Jamie’s mum, Vicky.
"I really do not know how I can express what has happened. Difficult decisions over the last 24 hours. Truly the most difficult of our lives.
Jamie is in peaceful sleep now and his fight against neuroblastoma ended on Monday at 3.45 Central European Time, here in the beautiful town of Tubingen.
We have been truly blessed to bring such an amazing child into this world. Neuroblastoma only seeks out the best. The best is what Jamie is. Jamie fought with such dignity and to that end we owed him dignity at the very least. As his mummy, I can take comfort in knowing that the beginning of eternal sleep was completely dignified and with the advice of the remarkable team, that dignified time had arrived.
We have nothing but complete admiration and respect for everyone involved in Jamie’s care since we arrived here in Germany. The last 2 months have been the most difficult for Jamie and everyone involved but we have all done everything we can. The team took into account all of our wishes to every last detail, which meant that eternal sleep arrived with mummy lying next to him and daddy holding his hand. We were so fortunate to be able to say goodbye properly. Even at the end, Mummy carried on talking, telling Jamie how loved he was by everyone. As we had asked for all alarms on the machine to be silenced, I didn’t even know that Jamie had left us. It was so peaceful and calm, but nothing can prepare you. We thought we had prepared ourselves over the last 4 years but NOTHING prepares you.
On 15th January 2013, neuroblastoma took away a Grandchild, Godson, Cousin, Nephew, Friend, Brother and ultimately our son....
...Jamie I will stay with you forever, as you will do with me and hundreds of others. Your smile will forever encapsulate the meaning of your life…happiness. As you began to leave me my darling boy, I knew that you would continue to bring and find happiness wherever you go. God bless you Neuroblastoma Angel. The pain of losing you is horrendous but no more suffering for you beautiful boy.
Lots of love and proud hugs…Mummy, Daddy and Poppy."
Vicky, Jamie's mummy
Jamie's legacy continues through his wonderful family. In 2015, they launched Jim-Jams for Jamie, each year appealing to Jamie's community and the public for brand new pyjamas to gift to children in hospital over Christmas. Through Jim-Jams for Jamie, almost 4,000 children have been gifted a brand new pair of pyjamas.
Jamie's mum, Vicky, is also Solving Kids' Cancer UK's Head of Family Support Services. Vicky works tirelessly in her role providing support to families, and inspires her colleagues with her strength and compassion every day.
"We are so proud of Jamie. He tried so hard to stay with us but the toxicity of all the treatment that Jamie received since his diagnosis and damage to his brain stem was irreversible. Jamie had no evidence of disease at this point - better, kinder and less toxic treatments are needed if more children are to survive.”
Jamie’s mum, Vicky
Donations made in loving memory of children
Funds raised in loving memory of Jamie will be used to support other children like Jamie and their families through Solving Kids' Cancer UK's activities. Any funds raised through a previous fundraising campaign for access to treatment which were not spent on the child's treatment and pastoral needs are used to support other children and families through Solving Kids' Cancer UK's activities
Donated on: 15th November 2020
The Lynsey Garrick Reach Project , friends and family doing a little bit where we can. Cash donation received whilst collecting Jim Jams for Jamie. Faye Graham
