If you’ve been following the story of the development of Xploro, then no doubt you’ll be familiar with the image of my daughter atop the Empire State Building. But why is this image so significant?
Me addressing the 2019 NOCA Annual Conference, Dublin
Since 2016, when we first started working on Xploro, I’ve given countless talks, conference presentations, investor pitches and customer demos and I always start telling the Xploro story with this image of my daughter. We’ve used it in the press too; The Guardian and The Metro both featured it in their coverage of Xploro and Social Tech Trust (one of our funders) use it as a hero image on their homepage.
On face value, it’s a lovely image of a bright and healthy 16 year old girl standing on the 86th Floor Observation Deck of one of the world’s most famous buildings. But there must be hundreds, if not thousands, of proud mothers and fathers who have similar snapshots of their children, looking to camera, with the fabulous backdrop of downtown Manhattan fading into the distance.
Of course, it was Issy’s experience of going through cancer treatment at the age of 13 that led us to develop Xploro (more on that here) so it’s right that she should be the ‘poster child’ for our campaigns but that doesn’t begin to explain why this one particular image is so significant.
Issy was diagnosed with Ewing’s Sarcoma on 29th November 2011 when she was just 13. She went through a horrendous year of treatment that involved 15 rounds of chemotherapy, numerous blood transfusions, a failed stem cell harvest and an operation to remove her sacrum.
After five months of chemotherapy her tumour was removed and we were all so relieved to discover that almost all of the cancerous cells had been destroyed by the intensive treatments that she’d had to endure for almost half a year. But that wasn’t the end of it. More chemotherapy was required to stop the cancer from returning and a cutting-edge new treatment was offered to ensure the best possible chance of long-term success.
That treatment was Proton Beam Therapy. At the time it wasn’t available in the UK so the NHS paid for us, a family of four, to fly out to Florida for 10 weeks. Issy was treated at the University of Florida’s proton beam facility in Jacksonville. She had to continue with her chemotherapy whilst we were there so it certainly wasn’t a holiday, but we made the best of it and between treatments would spend time at the beach; we watched alligators, turtles and tropical birds, tasted strange new foods like ‘grits’ and ‘collard greens’ and grew to love the famous hospitality of the deep south.
When we returned to the UK, in September 2012, we felt like we had turned a corner. Issy still had three rounds of chemotherapy to endure but the end was in sight and we could all begin to think about the future – something that we hadn’t dared to do earlier in the year.
Throughout the course of Issy’s treatment we, like other ‘cancer families’, benefitted enormously from the support of various charities. CLIC Sargent helped us with day-to-day essentials like disabled parking badges and home tutoring, The Little Princess Trust provided real hair wigs and When You Wish Upon A Star gave Issy something to look forward to. They grant ‘wishes’ to children living with life threatening illnesses and, after our trip to Florida for Proton Beam Therapy, Issy was clear that her wish was to return to the United States!
Once the wish was confirmed we excitedly planned the road trip of a lifetime. We would start in Orlando to do the obligatory theme parks, then head north to say hello to the amazing team in Jacksonville. From there we would discover the coastline of Georgia and the Carolinas before heading inland to the Blue Ridge Mountains of Virginia. A final long drive would take us to the heart of Manhattan where we would stay in a loft apartment in downtown Soho.
Issy and me on the beach at Jeckyll Island, Georgia
I remember that afternoon on The Observation Deck of the Empire State Building so well. As we stood and took in the view in the summer heat, we reflected on the end of an amazing three week journey. But it was so much more than that. From first diagnosis in Manchester on 29th November 2011 to 11th August 2014, a sunny afternoon in New York, we had been through so much. The four of us grew silent as we reflected on what had been and what was to come. We could finally look forward with confidence and hope.
The photo focuses on Issy but next to her, out of frame, is her brother Oscar.
It’s easy to forget that the brothers and sisters of children going through treatment for serious illnesses suffer too. They experience a wide range of emotions, including fear and anxiety, anger, jealousy, resentment, loneliness, guilt, sadness and grief. We can help children avoid some of these feelings by giving them age-appropriate information about their brother or sister’s treatment, by providing a way for them to keep in touch with their brother or sister whilst they’re away from home and by giving them space to express themselves.
I’d like to ask for your help. We’re trying to raise money to develop a siblings companion app for Xploro. We’re aiming to raise £37,500 by Friday 25th September 2020. Any donation, however small, will really help us get to our target so please visit our crowdfunding page to find out more:
Oscar and Issy on the Empire State Building
