On 7th March 2022, we visited Great Ormond Street Hospital, where Alice’s care and treatment for rhabdomyosarcoma was led from. We delivered our well-being bags for families, chocolate brownies for the kitchens, sweet cones for Dr Slater’s outpatient clinic and masses of toys/arts and crafts for in-patient playrooms, out-patient playrooms and the infamous Safari ward treasure trove. All of these items have been provided as donations to the charity and we are so grateful. Walthamstow Hall School and Carrington West kindly donated a multitude of toys as part of their support of the charity. The Chocolate Shop and The Little Cake Company are always so generous with their support. Thank you!
GOSH is the place where we started to build up relationships with other families experiencing rhabdomyosarcoma. Along the way, we met Freddie’s family, Gaspard’s family, Jessica’s family, who now have their own Arcs. And other fantastic families, who have supported us over the years – Finn’s family, Ben’s family and others. This is when we knew we had to get families all over the UK together to share their stories, to offer support and invest in meaningful rhabdomyosarcoma research together. And now, it is so wonderful to have Arcs and other families supporting the charity who have been treated across the UK and Northern Ireland – Birmingham Children’s Hospital, Addenbrookes, Leeds Children’s Hospital, Nottingham QMC, Newcastle RVI Hospital, UCLH, the Royal Marsden, Southampton Hospital, Royal Victoria Hospital (Belfast) and Sheffield Children’s Hospital. It’s important to us that families diagnosed with rhabdomyosarcoma know that they are not alone and that Alice’s Arc is their home of support and information. Our goal is to ensure Alice’s Arc well-being bags reach all of these institutions over time. They have already been delivered to Birmingham Children’s Hospital and the Royal Marsden is next week.
GOSH is also the place where we started to build special relationships with the medical team. Every one of them is so important to us, from Alice’s Consultant, the wonderful Nurses, the Pharmacists, the Play Specialists, the Palliative Care Team, the CNS’, Receptionists, Health Officers. They all hold a place in our hearts and we remain so very grateful for their work. We are so thankful for their help getting Alice’s Arc off the ground in the beginning.
On a personal note, it was poignant that the visit coincides with the timing seven years ago in 2015 that we found ourselves on Elephant ward with Alice, going through a series of tests to establish cancer type, staging in order to reach a final diagnosis. Her Hickman line was also inserted. At this point, my main focus was how quickly they could remove the hickman line if this lump turned out to be benign. In all the turmoil it is funny what we fixate on. But, they were right and I was wrong and on the 13th March 2015, Alice’s first round of chemotherapy was administered via her Hickman line.
Thank you to everyone – the families, the medics, the play team, our supporters, communities and so many more for enabling us to do our work for children/young people diagnosed with rhabdomyosarcoma.
