In July 2022, Daisy’s seasonal hay fever took a strange turn, a cough she had, suddenly became more intense and started to sound different, at night she started to make wiz like noises and couldn’t sleep flat. Mum started to take her to see GPs every 2 days for 2 weeks. We went from possible asthma to chest infections diagnosis and 2 changes of antibiotics. By the 27th of July Daisy fainted while on holiday by the pool and started vomiting after few bites of food. We took her to A&E did X-Ray and ECG, nothing was picked up so we left with steroids for 3 days. On the 1st of August after another vomit episode we took her back to A&E. Mum was challenged there on the reason why she was in A&E, the recordings of Daisy sleeping noises and the pictures of her vomits didn’t trigger any urgency. Mum had no intention to leave the hospital without an explanation that day. Eventually, the doctor examined her tummy and picked up something… we were admitted to hospital and the journey escalated from there. Daisy was sick overnight, we were moved to high dependency unit until the morning when Daisy was surrounded by the whole paediatric senior team. We were blue-lighted to Royal Brompton hospital where Daisy received the first lifesaving operation. More than a litre of fluid accumulated around her heart was drained during the operation. Causes were unknown, she was in PICU (paediatric intensive care unit) for 6 days, later a mass was found and we were blue-lighted again to GOSH. Daisy had a femoral line inserted that same evening and was started on emergency chemotherapy until the results of the biopsy came back. PET scans and MRIs followed.
Daisy was diagnosed with Alveolar Rhabdomyosarcoma in the pericardium, she had significant obstruction by blood clots on her jugular vein and was in intensive care for 6 more days before being transferred to the ward. Daisy remained in Hospital until the 22 of August. We were on the journey…every 2 weeks back at GOSH for chemotherapy with occasional stays at our local hospital when a fever spiked. Daisy was also started on blood thinners injections twice a day administered by mum. More operations of different nature followed, Daisy braved them all. She wanted to get better and go back to live her life.
Daisy had just turned 12 when she was diagnosed, she was just starting to blossom as pre-teens do. The therapy changed her looks, her taste, her moods and ultimately matured her personality. By the time she turned 13yo she had endured so much she had the wisdom of a grown up. The choices she made were grown up. With dignity and grace she taught us many lessons and with her unique smile she pushed through every obstacle. She was strong because she didn’t have a choice she wanted to protect her family. She was powered by an immense love. This is the reason why she was also known as Amore.
We never accepted the end. When it arrived we didn’t recognise the signs. Daisy like a butterfly freed herself from the caterpillar body that was no longer fit for her. With her beautiful wings opened wide she completed a metamorphosis we can only imagine as we don’t understand it. We miss her every breath we take.
Remembering Daisy and honouring her legacy is our way to continue the fight against Rhabdomyosarcoma until a cure is found. We are Daisy’s voice fighting for change.
We are the voice of all those children who fought those battles, their voices continue to echo in the broken pieces of all the parents who are grieving the loss of a beloved daughter or son.
This GRIEF is the LOVE they ALL left behind, the LEGACY we will honour fighting the battle against Rhabdomyosarcoma to find a cure. We are the voice of the vulnerable in our society. This is our mission.
Daisy’s Arc logo
We have been inspired by Daisy’s bravery along the journey. The warrior butterfly represents her in many ways. The metamorphosis the caterpillar goes through before its transformation is a change that it must go through. The Butterfly never really sees how beautiful she is and how short her life is. The symbolism of the warrior butterfly has a strong meaning. The ‘W’ on her leg stands for both ‘warrior’ and the ‘W’ shape of the constellation of Cassiopeia where a star we named Daisy Joy is located. The symbols incorporated into the Arc were some of the things Daisy loved as a young teenager. Starting with the music notes and ending with the heart beat or vice versa…..
