In January last year, Jamie Inglis lost his brave fight against neuroblastoma. Here, his mother, Vicky, tells how she has taken on a vital role, helping families cope when they are in a similar situation.
With the approach of Jamie’s first angel anniversary, I wanted to publicly thank everybody who has been involved with our family over the last four years, including the staff and readers of the York Press and the team at Minster FM along with their listeners.
You were all a key part in raising those much-needed funds to send Jamie to America and then later, Germany. The generosity and kindness of many has been overwhelming.
Our family would also like to thank Martin House Children’s Hospice, whose work and support is so invaluable. A year on, and Martin House is still an important support for us in many ways.
All of us face challenges in life but it’s how we deal with those challenges that determine the best path to take.
Having a choice may not always appear possible when faced with trauma but sometimes that choice is right ahead of you and so close that you don’t even realise it’s there. This is the only way I can describe how, as Jamie’s mummy, I am able to wake up each morning and face each day anew.
In those early minutes, hours and days after Jamie’s passing, the choices confronting our family were not ones we ever wanted to make.
We were only too aware that the choices we made then created the memories we have today. To have got this wrong would have been catastrophic mentally and physically during our current grieving process.
We walked the longest path of eggshells for four years, some very much weaker than others who saw Jamie’s life in the balance on too many occasions. Then it all cracked, leaving our family feeling empty.
During that long eggshell walk, Jamie seemed to have this innate ability to seek out the strongest of shells. I approach life in the same way now with confidence to put my best foot forward never fearing a crack but embracing it.
Of course, it goes without saying that losing a child of any age is wrong on so many levels. There will never be an answer as to why this has happened to ours and many other families.
Jamie’s lasting imprint on life helped make another informed decision. I was approached by the Neuroblastoma Children's Cancer Alliance UK, the NCCA UK, back in the summer of 2013 to take on a new role within the charity. This being the very charity that had been a part of our lives for four years and held the platform for Jamie’s fundraising campaign.
The bizarre twist of fate continued when I found out that the majority of my regional co-ordinator role would be supporting parents and their families who are fundraising just as we did. This role had not existed before and it seemed I was a natural choice.
This opportunity was right in front of me and I had no idea that this would be possible. Friends and family and the staff at the charity often heard me speak of my wish to do something, something that would draw upon what I had learnt from Jamie during his four-year fight.
At last, here was a decision that could be made instantly with no deliberating or researching. I accepted this opportunity immediately and it is difficult to explain in words how much this means to our family.
Ultimately this is Jamie's legacy. I knew a year ago that something special would come from Jamie’s passing. He always wanted to be a researcher, to find out why children got angry cells.
Group provides vital support for the families
Neuroblastoma is an aggressive childhood cancer and the most common cancer diagnosed in children under five years old.
In most cases it is only diagnosed when it has already progressed to a late “high risk” stage.
When children cannot get on to a UK trial, the Neuroblastoma Children’s Cancer Alliance UK, (NCCA UK) support them to access treatment abroad. Even when children are tested clear of neuroblastoma after NHS treatment, four out of five children will relapse and in the case of relapse there is no treatment path here in the UK.
The NCCA UK helps children access potentially life-saving treatment, whilst supporting research that not only aims to introduce new treatments but also bring existing internationally available options here to the UK.
They support parents by sharing the most current resources available for neuroblastoma treatments and providing access to other parents who want to share their knowledge and experiences. This means that one day, families will not have the upheaval and expense of travelling abroad for therapy.
This year has been tough on all our family and friends. We have got through all of those first anniversaries and Jamie’s birthday. Christmas was the biggest one as not only was it out first without Jamie, it also marked the anniversary of Jamie's final decline in health.
These memories are some of the hardest as we also tried to protect the rest of the family in the UK. We couldn’t tell them the truth and have Christmas Day ruined for Jamie’s sister, Poppy, who was with her grandparents.
In my quest to create happy memories of Christmas for Poppy we took her to Lapland. These four days were orchestrated purposefully so that the difficult memory of Jamie’s decline over Christmas were spent doing something magical. On Christmas Eve we were being pulled by reindeer through the forests of the Arctic. It was peaceful and beautiful yet silent tears fell as we remembered Jamie.
Christmas Day was in stark contrast to Germany last year. It began with a trip to Santa’s workshop and Poppy having her own meeting with Father Christmas. So much snow fell, the most we had seen since we arrived. We like to think of snow as angel tears and Jamie and his friends were certainly shedding tears.
Until Christmas Day the snow had been too soft to do anything with but here we all were, in the Arctic, having snowball fights, making snowmen and sledging. We ended the day with a husky ride and stories around a camp fire in a wigwam, sipping hot berry juice and eating ginger cookies. Perfect in so many ways yet a piece was still missing. That piece will always be missing but never forgotten.
If you would like to make a difference for children affected by neuroblastoma, I would love to hear from you. Any fundraising, no matter how small, helps raise awareness and much-needed funds.
I am also available to demonstrate the NCCA UK’s Education Toolkit for primary schools. Contact me via email Vicky@ncca-uk.org or phone me on 07740107483.