Scott’s Story

Dear Clown Doctors,

Back in 2001, I had my 4th child, a little girl, Molly. A sister for Tegan, Casey, and my only son Scott. Molly was born very small, and was diagnosed with a condition called Trisomy 18. Unfortunately, the doctors described this condition to me as incompatible with life. Molly was with us for just 5 short days before she passed away. Scott was only 2 and a half at the time, but even then his humour was obvious to all who knew him well. I will never forget the day of the funeral, when he was jumping from grave to grave like they were stepping stones, and had to be caught practically mid-air, before he fell down his sister’s grave. What was one of the most shattering experiences of my life, taught me something very special. I had never had to deal with grief before, but I knew I had to be strong and positive for my children. My relationship with their father was not the best, and I realised I wanted to be happy, so my children could learn to accept that sometimes things go wrong, and the only thing they could control was how they dealt with that. So I became a single mum. 3 years later, we were blessed with another addition, little sister Lilly. The firecracker my mother had wished upon me many times over my years of being a defiant teenager.

I worked hard, sometimes 2 jobs at a time. The kids grew and thrived, and I could not be more proud of the people they were growing up to be. In late 2012, as Scott was approaching his 14th birthday, I was working graveyard shifts so I could be home during the day and early evening when the kids needed me most. I was exhausted and rather stressed. Scott was shy and very quiet, and had taken it upon himself to be the man of the house. He mowed lawns, took out the rubbish every week and was pretty good at putting together the odd flat pack furniture. Tegan had left home and was working full time in a local fruit shop, not far from where we lived. Casey told me Scott had been complaining of a sore arm when I was working, and when I questioned him about it, he put on his brave face and told me it was probably just growing pains. A few weeks later I noticed he was spending longer periods in the shower, I had always had trouble getting him in there but just put this down to him being a teenage boy, along with the sleeping in and not wanting to spend time talking to his mum and sisters. The only thing that could drag him from his bedroom was either a computer game or his beloved dog jewel. She was his best friend, along with a kid called Hayden who he had been friends with his entire life.

January 7th, 2013, is the day our world fell apart. I got a call not long after getting home from work, from Hayden’s mum. Scott had been there on the weekend and Hayden was worried about him. His arm was swollen and very sore, and Scott didn’t want me to know. He didn’t want me to be under any more stress. When I asked him to show me, he lifted his shirt and I could have fainted. There was a lump in his shoulder, maybe the size of a small orange, and the arm was swollen down to the elbow. We went straight to the Dalby hospital. Usually you have to wait hours in a small country hospital to see a doctor, but I was shocked as they rushed us straight through. Without missing a beat, the doctor said to us ‘this is a tumour, you need to get to Brisbane right away for an MRI and a biopsy.’

I rang my mother immediately, and her and my dad came to take us the 3 hours to the Royal Children’s Hospital. An oncologist, a social worker, and an orthopedic surgeon were waiting to meet us. To say we were scared was an understatement. Tegan had left work to be with us and I honestly had no idea how I would have coped without her. Scott was admitted immediately and little did I know how fast things were about to spiral out of control.

The next day Scott was taken straight down for an MRI. Laying him down into that big machine, he screamed in pain. We didn’t know, but the tumour had broken his arm and was pushing his arm out of its socket. He screamed the whole 20 minutes it took. I had never heard anyone in so much pain and distress in my life. That afternoon he had the biopsy done. We were taken to a tiny room where they told us they were sure it was cancer, and there were also 5 small spots on his lungs.

The next morning Scott was in even more pain, this time in his chest. Another scan was ordered. As I sat outside the room waiting for it to finish, the doors opened and I saw my son rushed past me with what seemed like 150 nurses and doctors, straight to ICU. Scott had a massive blood clot on his lung and his blood pressure was through the roof. We weren’t allowed in the room as they frantically tried to stabilize my boy. I cannot describe that feeling of fear… I did not want to lose another of my children but that’s what we were facing. His cancer was advanced and aggressive but this blood clot was the immediate threat.

We were told to prepare for the worst. How do you prepare for that?

Luckily he was stabilized and chemotherapy was started immediately. We left it a few days before we told Scott he had cancer. We had been doing our own research on osteosarcoma and unfortunately the statistics weren’t good. I needed to comprehend that first, so when it was his turn to break down I could be the strength he needed.

For 6 days he was in intensive care. His sisters and school friends visited and everyone tried to cheer him up. But he was miserable, and he had every right to be. Chemo made him sick, and the only thing that made him smile was when he managed to vomit all over his sister. He was on intense doses of pain medication and the things he was saying would make a sailor blush.

Five rounds of chemo later and Scott was ready for scans to see if it was working. Unfortunately, the tumour in his arm had practically doubled in size. Scott had not been able to lie flat for 6 weeks, and was on about 15 different drugs for pain and all the side effects of chemo. The surgeon came to see us in Scott’s room. Very bluntly, he said to us, ‘if we have any chance of saving your life, we need to do a forequarter amputation’…. Floored and gutted. That’s all I can say to describe how we both felt. I broke down, and I wished that more than anything, I could take his place. But we were not going to let it beat us. We needed to find that strength to get over this hurdle. Scott asked me ‘how will I ride my bike? How will I play computer games?’ and then, in typical Scott style, he said to me ‘but don’t worry mum, at least my deodorant will last me twice as long now.’

We were staying in a unit close to the hospital and hadn’t even had the chance to go home. Friends had packed our house and put everything in storage, and we had either found people to care for our animals or re-homed them. Scott was missing his Jewel like crazy, but we kept her photo with him at all times and often talked about when he would get to be with her again. Casey had gone to live with her dad, and Tegan had moved to be with us to help care for Lilly while I was with Scott in hospital.

A week or so before Scott was due for surgery he was back in hospital again. This was the first time we had an encounter with the Clown Doctors. Scott perked up when he saw Dr Wobble and Dr O’Dear come into the room. The way they engaged with him instantly was a turning point – he was smiling and laughing. By this stage, his arm was so big I was buying him men’s shirts to wear, and he had to pull the sleeve over the tumour for comfort. It was now maybe the size of a rockmelon on a boy that weighed just 38kg. Dr O’Dear looked at it and told Scott he was supposed to work out with both arms. We all had a good giggle at Scott’s one big muscle. When he told them he was having an amputation I could see a little look of horror behind their eyes, but it was ok because Scott was excited to be getting a robot arm!

Now I’m not sure if you guys remember, but this is when the plans started for the robot arm that was part chicken wing, part laser. He had all these crazy plans which he shared with all of his close family and friends. Just a few days before surgery we held a special ‘goodbye arm’ party at the hospital. We had an arm shaped cake, arm shaped decorations and special party games that could only be played using one arm. Scott thanked his arm for all its hard work. My brave boy said to me ‘mum, I’d rather lose my arm than lose my life. Let’s get rid of this thing’

That day of surgery was probably the most anxious I had ever felt in my life. We thought he would be in theatre for hours, but just 2 hours after being led away from me I was called saying he was in recovery, awake and calling for me. I was scared of what I would see. How would I react when I saw him without his arm? I walked in and for the first time in 2 months, I saw my boy resting peacefully on his back. A big bandage covered where they had removed his arm, shoulder blade and collar bone. To me, he looked like a broken jelly baby. All I felt was relief. ‘Hitler’, as he had named his tumour, was gone. He had been defeated. Typical Scott, thinking of everyone else, asked if his Nanny was ok and thanked the nurses for the extra morphine, telling them he loved them. What could I do but laugh?

Scott started to improve massively in the weeks following his amputation. He needed a lot more chemotherapy to target his lungs, but he was ready to fight with a vengeance now. Nothing was going to hold him back. We talked a lot about how not hiding his pain from me could have made this journey a little easier, but I didn’t want him to dwell on that. He wanted to share though. My boy who couldn’t even read an assignment in front of his class, wanted to tell every kid who would listen to speak up if there were changes in their own bodies, that they didn’t feel were normal. We went to newspapers, radio, television, and magazines. Everyone wanted the story. In July it was Sarcoma Awareness Month, and we approached Brisbane City Council about changing the lights on the Story Bridge to blue for awareness. Scott was thrilled to be invited down to the control room where he got to show the Lord Mayor of Brisbane, Mr Graham Quirk, how to work the program to change the lights. He went a little crazy, and I wonder if Brisbane were confused as the bridge changed colours and twinkled rapidly.

Scott was often asked by little kids, and some adults, how he had lost his arm. Each time was a different answer… some of these fed to him by his favourite Clown Doctors. Picking his nose. Sold it to an arms dealer. Or bitten off by the stuffed crocodile he carried everywhere with him… that funny little story always led into the truth though. It made people realise he was just a normal kid, he could handle a little laugh about his situation, but it was serious and it had given him a message to spread.

His crocodile was always with him. Clive – who Dr O’Dear said must have been an accountant. The song ‘Clive the Accountant Crocodile’ is still sung in our house and still drives me crazy to this day, even without that annoying ukulele music behind it. Scott’s relationship with the Clown Doctors grew into something spectacular to witness. They seemed to feed off each other. Even running into the Clown Doctors in the café would end up in an impromptu performance of some kind, usually with me and other diners red with laughter, and my little one armed clown at the centre of all the noise and excitement.

Entertaining and distracting other kids in treatment was something Scott learned from you guys. He saw how the smiles you gave the kids helped make those days that really sucked, just a little bit easier. So he took it on board to try and do the same thing. He would dress up before a day in outpatients, read the kids stories and show off his amazing one armed Lego creations. He wanted to be a Clown Doctor, and asked if it was possible to come back when he was better and do his work experience as one of your team. I often pictured him in a big, white, one armed jacket, tricking the kids with his antics and making them all laugh. One of his favourite jokes was to lean against the doors of a lift, wait till someone came around the corner and then scream pretending his arm was shut in the door. Some people were horrified but most will remember the time he tricked them with a smile.

The stares in public were hard. Everyone in hospital knew Scott and his story over time so we didn’t have to tell it again and again. So to deal with the public, he designed himself some t-shirts. One said ‘This shirt cost me an arm and a leg, I got it for half price’ and another, ‘Amputee – some assembly required’…. And a serious one. ‘I know what you’re thinking, I lost it to cancer.’

Chemo continued, every 3rd week we would spend 5 days in hospital. In between, there were numerous blood tests, transfusions and admissions for infections or other complications. I guess for us, life on the ward become normal. This was our life but we really missed our home, our belongings and our pets. It was 5 months since leaving Dalby before we got to go home for 2 days. First stop, of course, was to see Jewel. It was like they had never been apart, and we left the two of them alone. Scott told me he had a very emotional chat with his dog, but to this day I don’t know what was said. But I know he had been crying; his eyes were red. He said to me ‘mum, if anything ever happens to me, take care of her for me. And, when her time comes, please make sure she is cremated and her ashes are kept with mine.’ Words no mother ever wants to hear.

And then we got some more words no one wants to hear. The treatment wasn’t working. The tumours in Scott’s lungs were spreading.

His doctor was trying hard to get Scott approved for a trial treatment that had just started in Australia. It took another 3 weeks before we got the approval and another week before we could start. The chances of this working were slim but Scott knew even if it didn’t work, this was paving the way for future treatments. All he wanted to do was help other people. He had donated his arm for research, and had plans to be a public speaker, sharing his story as often as he could to prevent others from making the same mistakes he did.

The trial treatment was nowhere near as tough as the other chemo he had been on. This time it was all done as an outpatient, and I was giving him daily doses of oral chemo at home. As his side effects were minimal, we were able to head to Hervey Bay for Christmas, where there was a special Scott’s Army fundraiser being held. We were starting to look for a house in Brisbane, as we didn’t know what the future held at this stage and needed all the help we could get. During this time, Scott’s Make A Wish was granted, and we were all excited to get home after Christmas and go on his dream holiday; a trip to Sydney, where we would sleep over night at Taronga Zoo, help feed the animals, and spend half the day behind the scenes touring the reptile exhibit. Scott was a little David Attenborough, animals were his thing.

Before we left on our trip to Sydney, Scott had to have follow up scans to see how the trial was working. On the 17th of January, we met with the doctors again. The trial had failed, and there was nothing more they could do to help my boy. He had just turned 15 years old, he was just beginning his life. The conversations that followed that day were something I could not believe. Here was my child, facing the end of his life. We had that bucket list chat everyone has when given a terminal diagnosis. On the top of Scott’s list? He did not want to die before he got the chance to touch boobs. Typical 15 year old boy! Unfortunately that’s something I could not help him with and would rather not know about!

Our holiday to Sydney was filled with adventure. We tried to focus on having fun and creating memories, but I could not help but notice my boy was deteriorating before my eyes. He was tired more often, and I would often catch him deep in thought, obviously contemplating what was to come.

We were still frantically trying to find a home a few weeks later, when I woke in the morning to Scott screaming in pain. He could not feel his legs. He was rushed back to hospital, and given a massive dose of pain medication. He tried to speak, but nothing he said made sense. The following day I was told scan results showed the cancer had spread to other organs, and possibly into his brain. Being told you have just a few days, possibly 2 weeks, left with your child is shattering. How do you comprehend that? I couldn’t, I just got busy. All I wanted to do was find a house. Be with my family. But most of all, I wanted to love my son harder than I ever had in my life.

The next day, I ran into the Clown Doctors in the corridor. Telling them the latest news was so hard as I knew how much they cared for Scott, and I needed to thank them for helping to keep his spirits up through this whole ordeal. Dr Wobble had been away on leave so we hadn’t seen her for some time. She came to the room to hang with Scott for a while and even though he wasn’t fully aware of everything around him, having her there made him smile again. When we left the room Dr Wobble broke down. Seeing the impact that my son had on someone like that was so moving. I always knew he was an amazing kid, but it was people like all of you that helped him realise it himself.

The day before we took Scott home for the last time, we had a very special surprise visit from Dr Two Shoes and Dr O’Dear. They told me they had a special gift for Scott, and even though they had been told maybe it wasn’t the best time, I knew they needed to say goodbye to Scott too. We were all totally flawed when they gave Scott his very own Clown Doctors coat, complete with pockets full of relatively useless junk that were supposed to be used as gags. I still have that whoopee cushion with the hole in it, but the box of cereal that was 3 years out of date disappeared.

All the while this was going on; we were still trying to find a home. I needed to get Scott into a house so he could spend just one day with his dog before he left us. Time was running out. The decision was made that Jewel would need to come to the hospital to see Scott. We wheeled his whole bed out on to the front lawn. Doped up on morphine, he had no idea what was happening. But when his best furry friend came running up the hill and leapt up on to his bed, there was no denying the love between the two of them. Scott knew he was dying, and this was his goodbye. The tears we shed that day could have ended the drought.

Speaking with the Clown Doctors again before we took Scott back to our unit, I told them of the plans he had made for his funeral. He wanted it to be a fun, carnival like party. Everyone was to come in fancy dress, but seeing you were clowns every day, he wanted you to wear a suit. Dr O’Dear did not like that idea at all!

Scott was back in our unit for 4 days before he passed away. It was just him and I alone in the room, the way he wanted it to be. I told him I loved him, I was proud of him, and it was time for him to move on and go be with his little sister Molly. Of course we were all heartbroken but I was so proud of the way his sisters handled his death. To see all four of my children sitting on the bed together, laughing and talking like he was still there was so moving. They took locks of his hair, took his hand prints and even danced holding his one hand, pretending he was Michael Jackson’s zombie character in Thriller.

That afternoon we moved to our new house in Ipswich. This new normal was difficult to get used to, but we had to make a fresh start. The next week was full of funeral arrangements. I’m sure the funeral directors thought we were crazy. My cousin collected the coffin and painted a one armed storm trooper on the lid, as Scott was Star Wars crazy. We ordered a motorbike hearse to take him on his final ride, with 50 leather clad bikers to escort him to the chapel.

The day was just what Scott wanted. With everyone in fancy dress, his casket was carried into the chapel with Darth Vader, Storm Troopers, and Jawas standing as guard of honour. There was more laughter than tears as we all shared stories of the funny, brave, young man that Scott was. As the ceremony was coming to an end, and everyone was getting emotional, screams and a few curse words were heard. Scott’s friend Justin, a reptile handler, had accidently let go of his companions; two baby salt water crocodiles. They ran through everyone’s feet, straight to the lectern where the celebrant sat one on the top, looking at the congregation, and did not miss a beat as he concluded the ceremony. I like to think that this was Scott’s last practical joke. His favourite nurse, Becca, was sitting just opposite Justin. Scott was always pulling practical jokes on her, fake spiders and snakes in bed pans in the middle of the night. Becca was petrified of animals, and it gave Scott no end of enjoyment to torture the poor girl. I sure hope she has recovered!

Life without Scott was different, to say the least. I missed him, I still do. But he left us with a legacy. His mission to share his story and to raise awareness became something I was passionate about. With the help of some great friends I met along the journey, we have set up a charity called The Scott’s Army Foundation. Our mission is to raise awareness for all childhood cancers, and to make the gold ribbon just as recognisable as the pink is for breast cancer. We are currently working on creating an education program for school kids and parents, on what to look out for and when to insist on further investigation if they feel a health problem isn’t being addressed enough. We believe that early detection is the cure to having a better success rate when it comes to childhood cancers. While we spend billions of dollars on research, it’s still going to take years to find the drugs we really need to save the 1 in 5 kids that are diagnosed with cancer, from having the same fate as Scott.

I find great comfort knowing that Scott and Molly are together now, and I know they are watching over us and pushing us along on our own life journey. We take nothing for granted now, and appreciate the small things in life so much more. My girls are pursuing their own dreams; Casey with a career in beauty therapy, and Tegan is studying art therapy and working on programs for other oncology kids and their siblings. Lilly is 11 years old going on 25, and has gladly taken over possession of Scott’s Play Station. She hasn’t gotten the gist of his one armed controller though!

I have found ways to appreciate life so much more than I ever did. I choose to deal with my grief in a positive way and now work in the funeral industry, with a dream to eventually be able to help other families create unique goodbye parties for their loved ones. I have found new love and am engaged to a beautiful man called Emmett, who I believe Scott sent to help me heal. I wish they could have met, as I know they would have been the best of friends. Some days get tough but they don’t last long. I know he would want me to live my life as happy as I can and to continue his legacy. He said losing his arm to cancer gave his life a purpose, and even though he is no longer here, I intend on keeping my promises to him and fighting for the rest of my life to make sure his story helps others.

Thank you all so much for having us along tonight, and for listening to our story. But most of all, I want to thank you all from the bottom of my heart, on behalf of the thousands of other families you guys help each year.