Far North whānau share heartbreaking story of son's battle with rare cancer

The Tātana Whanau during Billy's stay at Auckland's Starship Children's Hospital. Photo / Supplied'

Herekino couple Louis and Janelle Tātana are the proud parents of two teenage boys, Royden, 18, and Billy, 15, and teenage daughter Makena-May, 13. Both Billy and Royden are on the spectrum, with Royden having spent the last 10 years at home due to severe daily seizures. Makena-May has excelled at school and has a history of academic achievement, receiving a Moko Foundation scholarship in primary school and Top of the Class and Honours at Intermediate. She is also her brothers' biggest fan. Last year Janelle and Louis received the worst news imaginable- that their beloved boy Billy had terminal cancer. The couple say the diagnosis devastated them and has left them reeling with all things they've had to navigate since receiving his diagnosis. It's the Tātana whānau's goal to now provide Billy with the best quality of life they can while he battles his cancer. The whānau have therefore started a Givealittle page to help fund some of Billy's dreams and to help pay for the costly CBD oil he requires to rebuke the side effects of his treatment. This is their story ...

A Mother's Story: by Janelle Tatana.

Last May, our boy Billy was admitted to Auckland's Starship Hospital after being diagnosed with Paraganglioma - a cancer extremely rare in children.

After conducting several scans, doctors found a large thoracic tumour in Billy's spine, causing spinal destruction and spinal cord compression. A large separate pelvic lesion was also detected.

As a result, Billy had to have a brace custom made to support his limited mobility, while we met with specialists and prepared for scans, X-rays and blood tests.

We were also introduced to Children's Cancer Foundation, teen cancer support agency Canteen and palliative care ... it all happened so fast.

The aim was to try and stabilise his spine and to assess an acceptable plan of treatment thereafter.

After a couple of months of procedures (which were always difficult and at times painful), the surgeons explained any surgery would carry an unacceptable risk and neither chemotherapy nor radiation was an option.

It was at that point our whole world turned upside and to this day we still can't believe this is happening.

Oncology specialists and surgeons were still in discussions locally and internationally at the time, investigating any other treatment options, while we as a family prepared to learn how to care for Billy safely at home and organise home support to suit our needs.

We have only been in our home for one year and thanks to the help of family and friends were able to build a ramp for wheelchair access.

This was a difficult time for our whānau, as Billy had always had ongoing respiratory issues and back pain since he was in primary school.

After being checked out on numerous occasions, tests would always come back normal.

X-rays taken also didn't show any sign for concern, so naturally we didn't think anything was wrong.

Despite these results, Billy would continue to get bad colds every winter and the back pain would grow a little more severe each year.

As he approached intermediate, Billy's respiratory issues became more obvious, particularly after playing sports. Again, we would have him checked out, but just like a common cold, he would get better again after a few weeks.

It wasn't long after Billy started college he started to walk around with a hunched back. In spite of this, he was still only prescribed anti-inflammatory and pain relief medicine.

Last year while Billy was participating in his school's Special Olympics, he once again became sick and sore.

There were more mobility issues and pain and after going to Kaitaia Hospital for another X-ray, we were immediately flown to Starship hospital for further investigation.

It was at that time we were given Billy's diagnosis, followed by months of rehabilitation and physiotherapy, as well as preparations for when we eventually would go home.

There was also a special treatment option called PRRT, which would hopefully eliminate a few cells, but also carried further risk of harm.

Despite the risks, it was our only option and Billy decided he wanted to give it a try.
The treatment started in September last year and all the while, we were starting to see a rapid decline in his general wellbeing, loss of appetite, nausea, dizziness, fatigue and loss of energy.

We decided to investigate the use of CBD oil, a natural medicinal remedy for a lot of the side effects of the treatment.

The CBD oil costs upwards of $300 per bottle, but is the only thing that takes away the side effects that Billy experiences as a result of his treatment and medications.

We wanted to share our story to thank friends and family for their awhi and Auckland Starship children's hospital for their continued support for Billy and our whānau.

Friends and family have also offered to help in other ways by starting a Givealittle page to help support us with Billy and his treatment.

To find out more or to donate to Billy's cause, visit: www.givealittle.co.nz and search "Support for Billy".