Michael Pilaar was generally known for his musical talent but as a neighbour remarked once he heard of Michael’s death, he said Michael had a ‘talent for living’. Michael played a wide range of musical instruments including the cello, the organ, drums, guitar and trombone and in 2018, planned to study classical cello and jazz piano at Victoria University. However on June 23 at 4.45am Michael, aged 19, quietly stopped breathing and slipped away leaving his family behind. He has two siblings, Anna 18 and Jonathan 15, and his mum and dad, Elizabeth and Christian.
Elizabeth home schooled her children most of their lives and Michael started school only in Year 12, Anna in Year 11 and Jono in Year 9. Home schooling was not just a way of learning but a way of living and enabled them to develop very strong family relationships. It also enabled them to focus on music in a way they would have struggled to do if they’d gone to school. For the last few years of their home schooling they would spend an entire day every second week travelling to and from Hamilton for the violin, cello and organ lessons they couldn’t get in Rotorua. Anna played the violin with Michael accompanying her on the piano and together they performed in rest homes, public concerts, charity events and just for fun at home.
Michael had a mole on his leg that one day changed. He’d had it for years and wasn’t aware exactly when it began to change. He was seen by his GP in June 2015 and sent for a biopsy at Rotorua Hospital. The results came back as melanoma so he was quickly scheduled for surgery in Oct. 2015 to remove more tissue around the biopsy site hoping to cut it all out. The PET scan and MRI came back clear and by Christmas of 2015 he thought he was all clear. But in March, three months later, he had back pain. In May intense back pain took him to the ED at Rotorua Hospital and a tumour on his rib was diagnosed. A scan revealed five tumours in his body; the cancer was incredibly fast and aggressive. Michael had been accepted as a dancer in the inaugural Dancing with the Stars evening in Rotorua but had to pull out as pain began to limit his activities.
Michael took part in a clinical drug trial based in Auckland Hospital from July 2016 combining three different drugs, both oral and IV. His body didn’t cope with the combination and treatment was stopped for a month until his liver re-stabilised. The two oral drugs were continued and initially his cancer seemed to be responding to them and tumours shrunk a little. But in December, the scans showed the tumours were growing again so the oral drugs were stopped and Michael recommenced with IV Keytruda. In early March the hard call was made by his oncologist that Keytruda was no longer working and there was no more medical treatment to offer Michael.
Two weeks after Michael received his terminal diagnosis he decided he wanted to buy a special guitar. He wanted a Martin guitar, a top of the range instrument which the singer Ed Sheeran has made popular (“Ed Sheeran” was Michael’s nickname at school as he had similar colouring and a similar relaxed approach to music). He and his mum made a trip to town and needed a wheelchair to get in and out of the car and into the shop. It was a painful process for him but he was determined. Once he had bought his guitar he came home exhausted but happy. However he wasn’t able to walk again and was bed bound from then until his death 13 weeks later.
Hospice became part of the family’s journey shortly after Michael’s terminal diagnosis. Michael had a very strong Christian faith and was quite sure that God had a plan for him and that his time wasn’t up yet. So when Hospice became involved the focus for him was about managing his pain and not about him dying. He said he wasn’t scared about dying, only about pain, but he still didn’t think he was going to die yet. The nurses who cared for Michael supported him very positively and always had a positive banter with him. As Michael became weaker and able to do less for himself the nurses’ visits increased in frequency but they were incredibly empowering in the way they encouraged the family to ask for help as needed and they were very careful never to intrude. Elizabeth had been a registered nurse 23 years ago so had some skills but the hospice nurses support was invaluable as she nursed Michael at home. Once Michael required a syringe driver to administer pain relief the nurses visited daily. Toileting was one task Michael always wanted Hospice help with and they were always patient and cheerful and always respected his privacy and dignity.
Michael’s last 13 weeks once he was bed bound were very hard for all, friends and family. He was a vibrant, intelligent, fun-loving, positive young man and it was very hard to watch him visibly shrinking in weight. He didn’t lose his sparkle and visitors usually came away cheered by his buoyancy. The nurses were practically helpful whenever required but it was their willingness to help and be available that was especially wonderful. Knowing there was help at the end of the phone in the middle of the night when Michael was in pain and help or reassurance was needed was hugely relieving.
Several memories need sharing. The first 8 weeks Michael was bed bound he was in a small bedroom close to the lounge. His spirits began to sink and Diane, one of our regular nurses suggested he might like to go into the lounge. That was a wonderful decision. He found any movement very painful so the moving itself was a major exercise and Hospice enlisted the help of the local fire brigade and four burly men dressed in full kit, came and lifted Michael very gently out of the room, onto a bed, waited while the nurses rapidly dismantled Michael’s special hospice bed from one room and reassembled it out in the lounge, then moved him onto that. Michael’s spirits lifted hugely and he was able to take part in more everyday living as we moved around him.
On another occasion the family wanted to see Anna’s Stage Challenge dance in the evening competition. She had co-directed it and the family wanted to support her but didn’t want to leave Michael with just anyone. Janet, one of Michael’s regular nurses made it possible for this to happen so the family left him with peace of mind, knowing he was in good hands.
Michael remained incredibly positive throughout his journey. Last year when the cancer returned Michael said, “Don’t worry mum, I’ve already had a good life”. Those words from a 19 year old were startling and inspirational.
Hospice supported Michael and the family in an empowering and supportive way that enabled them to keep Michael comfortable in his home up to his death. They were proactive with ideas to help when needed such as wheel chairs, commodes, extra length bed, as well as supportive with help whenever asked for. Michael’s friends and family decorated his coffin in the days he spent at home before his funeral and on the lid was a large red heart made from the plastic lids from all the morphine vials he’d been injected with. The red heart stood out and symbolised love, the love and care he’d received from all, hospice tangibly included. The family will always be grateful to Hospice for their care, support and empowering love to enable them to support Michael to a dignified and calm end, thank you.
Michael James Pilaar 03/11/1997 – 23/06/2017 – Rest in peace