Peaceful Portugal

Leaving the UK and our comfortable lives behind, we pack up and head to Portugal

Go with the flow

This whole s**t scary topsy turvy situation had made us more than count our blessings.  Whilst trying to decide what we were going to do with our future Morley had follow ups with Alder Hey and Great Ormond Street Hospital (GOSH).  His wound was healing slower than expected and he kept scratching it, but it…

Mayhem’s 1st Birthday

He had made it.  There were times when I feared he wouldn’t.  That the tumour would consume him, squish all of his vital organs and take control.  Dr Google said that a lot of Teratomas were only discovered during post-mortems.  The symptoms they provided were mistaken for so many other problems and were never found until…

Freedom

We had been in hospital for the whole of August and into mid September, 6 weeks.  We were ready to escape. Excerpt from email to family: ‘We’ve made it, escaped, we have have left the building! Mayhem was double and triple checked by all of the lovely Doctors and they finally confirmed he was well enough to…

Finally a diagnosis…Teratoma

We were in ICU longer than we cared.  It was only a couple of days but it felt like a lifetime. Too long living on the edge. Back on the ward Mayhem was truly magnificent… Excerpt from an email to family after leaving ICU: ‘So over the past few days since we have been back…

ICU

The Intensive Care Unit (ICU) was a scary place.  Unlike the ward, with screams, shouts, hustle and bustle , ICU was quiet. No noise from the children entombed there, just mechanical noises and the occasional chat from the omnipresent Nurses and Doctors. Mayhem looked awful. We wept to see him looking so fragile, tiny and…

Surgery

We had been waiting so long that we’d become complacent, the limbo of waiting became normal and we allowed ourselves to relax a little, beginning to ignore the fact that Mayhem needed a major operation.  The Oncology team and surgical team were meeting to decide if surgery was the best way forward or if the…

Thymoma

Still waiting… An excerpt from an email to family on 24 August 2015, eleven days of waiting after the biopsy: ‘So our doc is pretty sure, but it’s not confirmed, that Mayhem‘s tumour is a benign Thymoma. Yes, benign 🙂 Its really, really rare in children, even rarer in infants but all the current pathology confirms…

Waiting for Biopsy Results…Yawn!!

The results weren’t forthcoming…in fact..they took blooming ages.  Waiting is sooooooo freaking frustrating!!!  As Mayhem only needed oxygen at night during the day we were pretty much left to our own devices.  Chaos was with hubbie in RMH so we did everything we could to try and keep it as ‘normal’ as possible for him….

Tumour Biopsy

Thursday 13 August was the date of Mayhem’s first operation, a biopsy of the tumour.  The operation was scheduled for 9am, first in.  I stopped breastfeeding him at 6am and he wasn’t a happy chappy.  The procedure was delayed, although you are first on the list, any emergency case that comes in takes precedence.  Of…