Para…what?

Reflecting back on 2012 it was amazing that we made it through truthfully.

As I started writing this blog some weeks ago we were dealing with another issue at hand, and have been for the most part of the year.

In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly!

This is something we were never, ever expecting or would have ever dreamed of going through, again. But here we were dealing with a rare tumour that rarely appears in children, for the most part it is an adult’s disease.

Tayla experienced vague symptoms for some months prior, but they never really appeared to be affecting her ability to function normally. She still woke in the morning, and went off to school quite happily. These vague symptoms included; heart palpitations, anxiety, frequent urination, night sweats and dizzy spells.

It wasn’t until one morning she flopped on the sofa and complained she wasn’t feeling well, she did look pale, and her face was quite withdrawn. She also mentioned a lump in her tummy which immediately got me worried, she showed me where this lump was and I really thought possibly it was nothing, but worth a trip to the GP.

The GP examined Tayla and mentioned a possible “hernia”, but requested an ultrasound for further investigation, and this was performed that afternoon.

This lead to more scans and tests, which took a period of 3-4 days. Eventually it was apparent that she needed to be referred onto the WCH in Adelaide.

From there, Tayla was admitted that night and a biopsy to be performed the very next day. Ironically the surgeon that would perform the procedure,was the husband of the Oncologist that gave us the news some 14 years ago, that Luke’s illness was terminal. Another nurse we knew from the oncology department where Luke was treated was also now the Nursing Services Director for the Paediatric Emergency Department. She greeted us with a warm hello and hug…I don’t think we really believed this was happening.

Approximately 97% of these tumours are benign, only 3% are cancerous and these tumours are indolent or slow-growing. Tayla’s operation was carried out in April of this year, and we now find eight months on, that there are two more tumours also in her abdomen to be removed in January.

What are Paraganglioma’s

Paragangliomas are rare tumors that grow in cells of the peripheral nervous system (i.e. the nerves outside the brain and spinal cord). The peripheral nervous system can be divided into the sympathetic and parasympathetic nervous systems.These sympathetic paraganglioma may make too much adrenaline (parasympathetic paraganglioma do not). Adrenaline is a hormone that affects such bodily functions as heart rate, blood pressure, breathing, digestion, sweating, urination, and sexual arousal. Adrenaline is said to control the “fight or flight” response, or in other words, it gets your body ready to react to stressful situations.

Paragangliomas can be found in the skull region, neck, chest cavity, abdomen, pelvis, and bladder. Far and away, the most common site is within the abdomen where approximately 85-90% are located.
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*Tayla persisted with these symptoms of feeling not quite right, for some time. I suppose now I wish we had listened to her earlier. Detecting the tumour herself was quite incredible reflecting back, and has probably lead to a favourable outcome going forward!

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