Tayla the Trailblazer

Gauging by her body language I think I knew what the Oncologist was about to say to us regarding Tayla’s recent PET scan results. AS we sat in her office I could see she was perplexed “Well something is going on here Tayla, something is not right!” she said.  As she spoke about the recent scan, she mentioned there was uptake to another lesion, she said it wasn’t very large but of concern. There was empathy and I think she felt as dejected as we did.

Tayla broke into tears, I really felt for her…and felt helpless. My husband and I both wish it were us going through this, not her! But we will love and support her through it, show our anxiety, our concern and just worry like hell as parents.

Despite the news Tayla decided to call this infiltrator ‘Fred’, it has a name now. Our daughter has shown so much courage, and has such an incredible outlook on life, despite her condition. Her energy levels are always so high, she bounds around the house, occasionally throwing in a highland fling.

As her oncologist said to us, “It is unfortunate Tayla but this is how life will be.” We now await comfirmation regarding the treatment option; chemotherapy, radionuclide therapy and surgery have been mentioned, most likely to be the later.

*Tayla has a rare genetic mutation called SDHB which means she is susceptible to developing a type of rare tumour called a Paraganglioma. So far three tumours in total have been surgically removed within a period of nine months. These tumours are usually found in the abdomen, head or neck regions.

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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!

Thursday’s Child (cont’d)

We arrived at the hospital late that afternoon, and went immediately to the Emergency Dept, where we were ushered through by a nurse to take Luke’s obs. Questions were asked about Luke’s symptoms, and we told them what we could.

Some time later, a blood test was required and so my husband David carried Luke into a treatment room, where several nurses were standing…I waited outside.Luke was placed on the bed, where the nurses were preparing to take his blood.

David needed to refrain Luke from wriggling and thrashing about, and it wasn’t long before his screams echoed down the corridor. I peered through the door, and caught a glimpse of David holding Luke down, as well as the nurses. Our poor little boy was terrified and so were we! As they made their way out of the room, Luke was bathed in sweat, and tears were streaming down his face, and also ours.

From there we were taken to a room, where a ward clerk spoke to us, he mentioned having to spend the night in hospital, and possibly a week or two while tests were carried out. I spent that first night with Luke, we were sent to a ward for contagious diseases, as it was initially thought he may have contracted hepatitis.

It was a noisy place, nurses talking and laughing loudly, babies were crying…not the sort of place you get a good night’s sleep. Luke eventually settled, apart from the nurse coming in to check his obs; and administer panadol and check his blood pressure.

The next day we were greeted with more nurses, doctors, interns, medical students came and went. Luke was the centre of attention, as his stomach was examined repeatedly by the doctors, all eager to give their medical opinion based on his symptoms.

By mid morning most of our family had assembled in our room, gathered around Luke’s cot, waiting for a verdict! Two male doctors entered the room, and greeted us. One was quite old, but exerted authority, the other perhaps in his early forties. They introduced themselves and proceeded to talk about Luke’s condition and their initial diagnosis.

It was highly likely our son had a tumour, they were not sure exactly as a biopsy would need to be performed, but they had mentioned two types of cancer, Wilm’s Tumour or Neuroblastoma.

Once the biopsy was carried out they could then give us a more informed diagnosis, along with the blood test, so until then we had to sit tight!I was in shock, and so to my husband, tears streamed down our faces.

The biopsy was scheduled the next day, and so many calls were made to family and friends over the coming days, as visitors came and went. Luke needed to fast for the procedure, and he was anaesthetized under a general anaesthetic.

It was then confirmed the following day, that Luke had Neuroblastoma. We were then moved to the oncology ward called “Brookman” where Luke would receive his chemo as an in-patient for the next 6-9 months.

We met some other patients and families, whom were also under going treatment. It was an eye opener, to say the least. The ward was tired looking, with out dated curtains, we were put in a bay with four other patients, with only a curtain, for privacy. Parents had a Jason recliner to sleep in, pale brown in colour. There was a toilet/shower and deep basin (to bath babies) which was shared amongst the patients/parents.

For more information on Neuroblastoma:

http://www.cancer.org/cancer/neuroblastoma/detailedguide/neuroblastoma-diagnosis