We know what it’s like

In the emergency room at 4am, just 2 days before his first birthday, Rhiannon’s son was diagnosed with a large tumour in his chest, wrapped around his spine. He had been completely symptom-free, and it was only thanks to a well timed bout of gastro that the cancer was found before it caused damage to his spine.

After a cancelled birthday party, 2 weeks in hospital, and numerous procedures including CT and MRI scans; baseline testing of hearing, kidney and heart function; surgery to obtain tumour biopsies, bone marrow aspirates and insert a port; and being injected with a radioactive tracer for an MIGB scan; it was official. Neuroblastoma – the most common cancer in children under 5, fatal in 1 out of 2 cases. Fortunately his cancer had not spread, and displayed favourable biology, significantly improving his prognosis.

A belated birthday party was held the day before he was admitted for his first round of chemotherapy.

After 4 rounds of chemo, spread over 3 months, a mid-treatment MRI showed that the tumour had already shrunk so significantly that no further treatment was required.

But Rhiannon’s eyes had been opened to the reality of having a seriously ill child, and as life settled back into something approaching normality, she realised she needed to do something to help.

During their initial hospital admission, Rhiannon had received a card from Jess Hayes as part of a university project, offering practical support with every day tasks such as gardening and cleaning. After months of wanting to do something but feeling unable to help, Rhiannon realised that Jess’s card, coupled with her software engineering skills, could be the start of something groundbreaking.

So, inspired by Jess’s card and motivated by personal experience, Rhiannon set out to make a difference, and Communified (Inc) was born.


Update

Happily, Rhiannon’s son remains cancer-free, although he is still undergoing regular MRIs.

So far, he has shown no ill effects from his treatment, but he will be monitored for late appearing chemotherapy side effects for the rest of his life.