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....