Leigh Sainty's Story

This Eulogy was written for the Life Celebration of Leigh Arthur Sainty

     Held at Wangi Bowling Club on the 9th of December 2017.

                                        21/08/1980  –  28/11/2017

Welcome everyone I feel so proud to see you all here tonight to celebrate Leigh’s life with us. Thank you for coming. I know a lot of you have travelled a long way to be here with us, and that’s a testament to the love you have for Leigh and our family.

I’m the one in our family that is always called upon to write the eulogy when a  family member passes away and I always consider that a great honour and a pleasure, but to write a tribute for my own son is the most difficult thing I have ever had to write and I hope you will bear with me while I tell you Leigh’s story as it’s quite a long one, but one I’d like you all to know so you understand just how special he was.            Where do I start?

Leigh was born on the 21st of August 1980 in the Royal Newcastle Hospital, to his late Dad, Greg Sainty, and myself. He was a beautiful happy, healthy baby with the biggest, bluest eyes that made everyone smile. His first home was a tiny flat behind an Italian restaurant, The Trieste Bar, in Beaumont Street Hamilton. Beaumont Street was a great place to live in those days. Two years later Chris was born and Leigh became a big brother, and a great one at that, he loved his little Brother right ‘til the day he died. They had the greatest respect for one another and for each other’s life achievements which were many and varied.

Leigh started school at Plattsburg Public School, Wallsend, and then moved to Coal Point Public School before Greg and I brought our house at Arcadia Vale in 1987 and both Leigh and Chris went to Arcadia Vale Primary School. He was always a good boy and did really well at school. He played soccer for the Westlakes Wildcats and was a member of the Rathmines Cubs and then the 1st Rathmines Scouts. He loved spending time on the Lake too as Greg and I had brought a Marine Construction business, building many of the jetties and Marina’s around the Lake, and both the boys loved going out in the boat to move the Pile Driving barge from site to site.

They were fun days spent fishing, wake boarding, swimming at the sand Islands and exploring the Lake from one end to the other. A very special time in all our lives!

He went on to Toronto High School where he made many lifelong friends, and a few of them are here tonight to honour him. Thanks for being here guys, I love you all.

Sadly, in 1993 at the age of 34, when Leigh was in year 7, Greg had a heart attack and died very suddenly. Leigh was only 12 years old and Chris was 10.

Our lives were turned upside down in an instant, we were devastated and wondered what the future would hold for us. My family wanted me to sell the house and move back up to the North Coast where I came from to be nearer to them but I knew the boys needed the stability and security of the life they already knew so I made the decision to stay where we were and face up to the battle ahead. We had some really hard times but we stuck together and survived. Eventually Stu came into my life and he’s been Leigh and Chris’s mate ever since.

Leigh developed a great love of music during high school and loved to sing, he was even a member of a band for a while, with some of his mates, writing some pretty cool songs at times. He also developed his love of surfing in those early teenage years. All the boys would get together at someones house, quite often ours, because, as they said, we were cool and we cooked the best food, or at Horsey’s place, as he lived near Awaba Station, and they’d catch the early train to Newcastle and walk up to Nobby’s and spend the whole day surfing then catch the train back home. They were all a good bunch of kids that never got into too much trouble, not that I heard about anyway! I think the only time I was ever called to Toronto High by the Head master was when Leigh and a few other boys, probably a couple of the ones here tonight, were caught down by the creek smoking cigarettes. Poor Leigh, when I asked him about it he was so ashamed and told me that he’d coughed his guts up and felt really sick and that he’d never smoke again, and he didn’t.

I loved those days when all the boys had a sleep over, they’d have so much fun, so happy, all crammed into Leigh’s bedroom with wall to wall mattresses, at least I knew where they were and what they were up to. In year nine, when he was just 14, Leigh started working part time at the new McDonalds Restaurant that had opened in Toronto, to earn his own money and ease the financial burden on me. He quite often had the early shift and I would get up at 4am with him to drive him to work.

 His first job of the day was to walk around the block surrounding McDonalds, in the dark, and pick up any McDonalds rubbish so the neighbours wouldn’t complain. There’s no way I’d let a 14 year old do that these days.

He saved all his wages and was so proud the day he was able to buy a new bed for his room, a double decker with a double bed on the bottom, very cool! “Great for sleepovers Mum” he told me! That was such a great achievement on McDonalds meagre wages.

That was the kind of kid he was, never asking for or expecting anything. If he wanted something he saved for it. Both the boys were like that, they knew times were tough and they never complained. I’m so proud of them.

He completed year 10 in 1996 and, with the help of Tim Kington, he secured an Apprenticeship in Electronics, Industrial and Scientific, with Newcastle Weighing Services in Wickham working mainly with weights and measures. Thanks Tim, you’ll never know how much we appreciated the help you gave Leigh. Again there were the early starts, I would drive him to Awaba Station at 6.30am to catch the train to Wickham Station and then walk along Hannell Street to work, and once again, I wouldn’t like my 16 year old doing that these days! He attended Tighes Hill TAFE to study his Trade Certificate. On completion of his Apprenticeship he moved on to another company called PCS for a change of scenery and experience and then on again to another company called Emerson which was to open doors to great opportunities later in life.

In 2006 Leigh and Chris decided to go to the Fuji Rock Festival in Japan. They had a great time and an amazing adventure. Leigh fell in love with the country, it’s people and culture. So much so that when he returned home he announced that he was going to sell up everything he owned and move to Japan to live and work.

He secured a job teaching Conversation English in a Japanese Language School and moved to Japan early in 2007. As fate would have it, Yuka was working at that same Language School and they met and fell in love.

Leigh loved his life in Japan. He loved the food, the culture, the Izakaya’s, or Japanese bars, and most of all the Karaoke, we called him the Karaoke King. He had quite a reputation among his friends and they would all get together and hire a Karaoke room and have a great time singing, eating and drinking.

He studied the Japanese Language and eventually mastered it quite well. I remember in August 2007 I was feeling sad as his birthday was approaching and I had never missed one so Stu and I decided to go and visit him, that was my first overseas trip, and I was so excited. Leigh took time off work and we travelled throughout Japan to some beautiful, special places.

He hadn’t mastered the language at that stage and late one night we found ourselves wondering around a large city trying to find somewhere to stay, there was some kind of festival on and there weren’t any rooms available anywhere. We tried several Ryokans, or Japanese inns, with no luck. We were all hot, sweaty and tired after backpacking around the country all day and it was getting very late.

We saw a ‘Love Hotel’ and Stu and I thought that might have been OK  but Leigh quickly stated that we couldn’t stay there as his Japanese was not good enough to explain to the receptionist that we did not want a room for a threesome!

In 2008 Leigh and Yuka decided to move to Australia for a while to give Yuka a taste of the Australian way of life, and she fitted in instantly and loved living and working here. During that time they applied for her Permanent Residency Visa which took quite a while but was finally approved. They were married in November 2009 and weren’t happy with just one wedding, they had three! One at the Registry Office in Hamilton followed by a beautiful honeymoon at Elizabeth Beach, which by the way , they invited Yuka’s parents, Stu and I and Chris and his wife Kait to join them. We all had a lovely honeymoon together.

Their second wedding was amazing, Leigh’s best mate Matt, who is here tonight, wrote a beautiful, unofficial ceremony and married them on the deck of an amazing beach house at Seal Rocks with incredible views of the Ocean. This time we were all invited again as well as several friends of Leigh’s and some of Yuka’s from Japan. An even bigger honeymoon!  I’ll never forget all of us walking down to Boat Beach after the ceremony to take photos. When we got down there the beach was deserted but there were people out on their veranda’s watching us and clapping and cheering.

We thought “How nice! They must have realised we were a wedding party and let us have the beach to ourselves”.

It wasn’t until the next day that we heard that there had been a Tsunami warning for the whole East Coast after an Earth Quake somewhere and people were advised to stay away from the beaches!  

Their third wedding was held in Nagoya, Japan, this time with all Yuka’s family and their Japanese friends.

They certainly wanted to make sure they were really married!

In 2010 they moved back to Japan and as Leigh had mastered the language much better he was able to secure a position with the Japanese arm of Emerson that he’d previously worked for in Australia. The job was in Tokyo so they moved in to an apartment in an outer suburb, Funabashi, and began a new life in one of the biggest cities in the world. Leigh was commuting to and from work in the famous Tokyo crush. He told me on his first day he was all excited about starting his new job and travelling there by train. He put his favourite music on his phone, put on his headphones thinking he’d listen to music on the way. When his train pulled in he was literally physically herded on to the train and squeezed in so tight that he couldn’t even move his arms to start the music playing. So much for that great idea!  He enjoyed his work and was trained as an Application Engineer which involved lots of travel throughout Japan, Singapore, China and South Korea, installing and maintaining high tech fuel systems on huge bulk carrier ships. Exciting times!

Early in 2012 Yuka fell pregnant with their daughter Momo, they had been trying for quite a while and were overjoyed to have finally conceived. Life was very busy in Tokyo and Leigh developed a slight tremble in his arm and hand which he put down to the stress of commuting and long hours at work. Then one night in September that year, while sleeping, he had a Grand Mal seizure and his, and our lives changed forever. Yuka called an ambulance and he was taken to hospital and a CT scan showed a shadow on his brain. The next day an MRI confirmed he had a Tumour in his left frontal lobe. I’ll never forget the phone call he made to me, he sounded so confused and scared and we both cried together. I had never cried so desparately as that day. 

By some strange coincidence, Chris and Kait were on their way to live and work in Sweden and had added a stopover in Tokyo to their trip. I had to call Chris at Sydney airport to tell him the devastating news, I can’t imagine how he was feeling on that flight to Tokyo. It was a Friday and by Monday morning Stu and I were on a plane to Tokyo as well to be with the kids. By the time we arrived the decision had been made that Leigh and Yuka would move back to Nagoya to live with Yuka’s parents so they would have support from her family, while he had treatment, as she was now 8 months pregnant. We all helped to pack up their belongings to be relocated by removalists and then caught a fast train to Nagoya that same day, totally exhausted and devastated. Chris and Kait spent a few days in Nagoya with us and then had to continue on their journey to Sweden to begin their new life. It was the saddest of farewells for all of us.

Leigh had been referred to Associate Professor Atsushi Natsume, head of Neurosurgery at Nagoya University Hospital. We went along to his first appointment and we all took an instant liking to Dr Natsume and he to us. He was excited to have his first Australian patient, one he could practice his English with. We listened carefully to what he was telling us and left his office in a state of shock and despair. Leigh would need Awake Surgery to remove the Tumour and because of where it was located there was a very high risk of speech and movement damage.

Momo was born on the 25th of October 2012, a beautiful baby girl, just what Leigh had hoped for. What should have been the happiest time in their lives was overshadowed by Leigh’s looming surgery which was performed on the 21st of December 2012.

The surgery lasted around 10 hours with about 5 of those hours being the Awake part where he was woken from the deep anaesthetic so he could answer questions and respond to commands so that Dr Natsume knew he wasn’t damaging him too badly, unfortunately only 60% of the tumour could be removed safely.

He recovered quickly from the surgery and the Biopsy results came back encouraging, Oligodendroglioma  Grade 2. They came with us back to Australia for a month’s holiday then returned to Nagoya to carry on with their lives and he was eventually well enough to return to work, which once again involved lots of travel.

He could no longer carry out the installation and maintenance side of his job so he was retrained as an Instrument Engineer and given the position of the South East Asian Representative in charge of sales of the new Fuel Systems developed by Emerson, which involved more travel even wider afield, including America and Europe. Such great experience for him and he was able to work from home so they moved to a beautiful beach village, Shima, about 2 hours from Nagoya where they spent a wonderful year in a lovely, small community where they made many new friends, many of them foreigners from all around the world, including Australia, and Leigh was able to get back in the ocean and enjoy his surfing again.

Things went along smoothly until late 2014 when an MRI showed new activity in his brain and he was started on Chemotherapy. He responded well to the treatment with regular MRI’s showing the activity was decreasing, but it really knocked him around for a few days each month when he had to take the chemo. In April 2016 he was going so well and Dr Natsume had told him if his next MRI was clear he could stop taking the Chemo.

 We were all nervously excited the day of the MRI, it was on the 27th of April, mine and Stu’s wedding anniversary, but that excitement soon turned to horror when the images lit up like a Christmas tree. Even Dr Natsume was shocked and scheduled another Awake surgery for the 29th of July. Once again Stu and I went to Japan to be with him and support Yuka and Momo.

This time the surgery lasted nearly 12 hours and the Awake period was longer. We were finally called in to ICU at 11pm and when I saw Leigh I really didn’t think he would survive the night. That vision still haunts me. The following day he suffered two strokes and when he finally awoke he was paralysed on his right side and could barely speak. We were horrified when the Biopsy report confirmed that his tumour had mutated to a Glioblastoma Grade 4, the worst one you can get and with the lowest survival rate.  

His rehabilitation began almost immediately, Physiotherapy, Occupational therapy and Speech therapy. He had to learn to walk and talk again and write using his left hand and try to get some movement back in his right hand and arm. Yuka, Stu and I spent every day for 3 months looking after him in hospital as he couldn’t do anything for himself. He underwent 6 weeks of Radiotherapy and began Chemotherapy treatment once again. His Japanese speech therapist struggled to communicate with him in English so we arranged for him to have Telerehab Speech therapy by skype through the University of Queensland. They were very excited to have their first international client using their system.

It was a terrible time for all of us. At the end of the 3 months hospital stay he was to be moved to a rehab hospital for another 6 months and he told us he couldn’t face that so the decision was made to bring him back home to continue his recovery and rehabilitation here in Australia. I didn’t know how we were going to achieve that so I decided to contact the Cancer Council here in Aus and they put me in touch with the Mark Hughes Foundation Brain Cancer support nurse. She reassured me that we would be able to transition Leigh from his treatment in Japan straight into treatment here in Newcastle, I was so relieved and thankful.

Stu and I had to make a quick trip home first to put our house back together after it was badly damaged by a burst mixer hose under the kitchen sink causing a devastating flood just before we left to go to Japan for the surgery and also organise to put a new shower and toilet in downstairs for Leigh to use. We were so lucky to have wonderful tradesmen to carry out that work and John Herd to organise and oversee the process for us while we returned to Japan to pack up Leigh and Yuka’s house and then bring them back to Australia. Thanks John, you’ll never know how much we appreciated your help. I’d also like to thank Rob Dorey for coming down home and installing a second hand rail on our staircase so Leigh didn’t have to go downstairs on his backside. Thanks so much Rob.

We arrived home on the 6th of November 2016 and the Mark Hughes Foundation Brain Cancer support nurse had made Leigh an appointment to see  Oncologist, Craig Gedye, at the Mater Hospital 2 days later to continue straight on with his treatment.

She had also made him an appointment at the Rankin Park Day hospital for the following week to continue on with his Speech therapy, Physio and Occupational Therapies. There’s no way I could have made these appointments myself and get Leigh back into treatment so quickly without her help. She also attended every Oncology appointment with us to guide us and make sure we understood everything being told to us.

It was a long hard year for Leigh and for all of us, with therapies 3 days a week, lot’s of homework and exercises, as well as regular Doctor’s visits. He was making good progress with his walking and talking though so all the hard work was paying off, and 5 days out of every 28 taking Chemo which was really debilitating for him leaving him feeling tired, nauseous and no appetite.

He was also in pain all the time which was depressing for him and I’d like to thank Louise Wilson for being so ‘Hands On’ with her wonderfully soothing massages and stretching sessions which gave him such great relief. Thanks for being so selfless Lou.

Then in August 2017, around the time of his 37th birthday, he started to feel unwell and he just kept getting worse and worse. He had another MRI and when we went to see the Oncologist straight after, he told us he had an ambulance on the way to take Leigh straight to the John Hunter Hospital for Brain surgery to implant a shunt into his brain to reduce swelling and drain fluid from his brain. What a shock, once again we were all shattered.

After the shunt was implanted Leigh started to deteriorate very quickly and spent a lot of time in hospital, then on the 28th of September we were given the news we had hoped we would never hear. His Cancer had spread into his spine and was now terminal. Those words ring loud and clear in my head and will do so for the rest of my life. Accompanying the Doctor to Leigh’s bedside in the Mater to tell him the news was the one of the hardest and saddest moments in my life. How does one process those words when told? I just couldn’t imagine.

Leigh listened and went blank, then asked a few simple questions that I can’t even remember and just said “I want to go home”. So Yuka and I packed up his things, checked him out of hospital and late on the Friday evening of the long weekend in October I drove them home in the pouring rain.Not a word was spoken the whole way and when we arrived home I couldn’t even remember the drive.

He continued to deteriorate and we were only home a few days when he had to return to the Mater for another stay and during this time Stu’s Mum, Edna, had become very ill and was also admitted to the Mater, so for 3 weeks we had both of them in there at the same time, luckily they were on the same floor and only down the corridor from each other, which made things a bit easier as now we were looking after the two of them. Sadly Edna passed away on the 9th of October and the news really saddened Leigh as he loved her so much.

When he returned home he was placed under the care of the Westlakes Palliative Care Nurses who visited every day to administer his medications and they made a special connection with Leigh, being such a beautiful young  man.

He also had the Silverchain nurses coming every day, one in the morning to help with his personal care and one in the evening to check that everything was OK .

Our house and routine was like a hospital and I can’t thank all those beautiful, caring nurses enough for their kindness, compassion and dedication to their work. Without their help we would not have been able to fulfil Leigh’s wish of dying at home in his childhood bedroom. I don’t know how they can do their work but every one of them told us it was an honour and a privilege to look after people in the final stages of their lives. Special people indeed!

Leigh finally gave up his fight sometime between 1 and 4am on the morning of Tuesday the 28th of November. Yuka and I had been taking it in turns to sleep in a bed beside him each night as he needed constant care and to be turned and repositioned every 3 hours. It was my turn ‘On Duty’ that night and I was awake with him at 1am to make him comfortable then set the alarm for 4am. I woke before the alarm and as soon as I woke I knew that he’d given in, I didn’t even really have to look, I just knew. That was definitely the most devastating moment of my life, yet in a strange way I was overcome with relief that he was no longer suffering and in pain and I was so thankful to have been beside him in his last moments of life, just as I had been with his Dad.

Our lives will never be the same without Leigh but I am so thankful to have been fortunate enough to have had the pleasure of having him as my son for 37 years, it makes me so proud, and the wonderful memories we made as a family will carry me through the remainder of my life.

This story is only a brief version of Leigh’s journey with Brain Cancer. I have glossed over so many traumatic times and terrible things that happened but if I’d included them all we would have been here all night. 

I mentioned the Mark Hughes Foundation earlier and we decided to take the opportunity tonight to repay their invaluable help to us by raising much needed funds to help promote research, highlight awareness and support Brain Cancer patients and their families within the community.

By donating to the MHF you are assisting researchers to better understanding Brain Cancer, find cures and make life changing discoveries for future generations. There is a box and envelopes on the table for anyone who would like to donate to this wonderful charity.

Before I finish I’d like to thank my family.

My wonderful husband Stu

My beautiful daughter inlaw Yuka

My very special son Chris and his beautiful wife Kait, who put their lives on hold in Sweden to come home to help us through this terrible time.

And my gorgeous little Granddaughter Momo.

You are all so brave, strong, compassionate and dedicated and together we made an amazing team that looked after our beautiful boy right to the end and granted him his wish of dying at home with his loving family. I am so proud of you all. Thankyou, I love you so much.

And I’d like to thank all of you here tonight and those that couldn’t be here for being a part of Leigh’s life and hope you cherish your own special memories of him for the rest of your lives.  Thank you.

Rosie McKenzie, Leigh’s Mum.