Bastien is a young man who changed my life when I shook his hand for the final time. He holds me to account when I've lost my way. He shows me beauty when I have my eyes closed. He speaks through the grandeur of the Black Cockatoo over landscapes of silence and solitude. Bastien said before his final operation 'love life, don't waste it'. His mother Clare tells their story......  

 

In May 2011 our son Bastien Joseph Madrill also known as Bas to his family and mates, woke up complaining of groin pain. Bas was 15years old, his two sisters Michaela 11 years old and Alexis 7 years old at the time. Bas was playing rugby that morning and we questioned if he could play. But knowing his love for rugby, surfing and skateboarding we knew not playing that day was not an option, he was playing at that was that. How was I surprised, nothing would keep Bas away from the things that made him happy and feel alive. That was Bastien’s attitude forever and always. He was always out enjoying life and all it had to offer. 

 

Bas was the most loving, funny, goofy, wild, caring, loyal, friendly, kind, gentle son, brother, grandson, nephew and friend. He was not afraid to tell you his feelings nor share a hug, he loved to wrestle with Dad or knock me onto my bed and not let me up while laughing his head off at me struggling. He has a infectious laugh with a smile that would light up the room. Bas loved his sisters dearly, would tease them as a brother does, and would stand up for them until the cows came home. And Michaela and Alexis cherished their big brother and always will.

 

As the weeks and months followed Bastien would on and off complain of groin pain. The pain was beginning to worsen over time, many doctors visits later Bastien began breaking out in sweats. The doctors just kept saying take this and that, have a X-ray, have a ultrasound but nothing was noticed. 

 

In September 2011 we were becoming a little more worried and still had no answer. I remember walking into the doctors with him one day and demanding something be done. The pain was beyond Panadol and Anti inflammatory medication, he was having issues walking, breaking out in full body sweats and was nearly passing out. I slammed my hand on the doctors desk and demanded some answers. So a CT scan was ordered. 

 

The nightmare was just beginning. The CT scan showed a issue! We were ordered to the hospital. More scans ordered, this was getting serious. I clearly remember after one scan Bas looking at me and saying “I’m worried mum”, oh my son so am I, what is going on.

 

It was then we had to go to RPA hospital, we were told to find this particular building when we arrived. Bas could barely walk in there that day the pain was taking it’s toll on him. As I walked through I found where we had to go and above the door was a sign that said “Sydney Cancer Clinic “. Never had the word been mentioned. As I turned I looked back at Bas. As he read the sign he looked up at me and our eyes met, I could see his face drop, our hearts sank. As we sat in the waiting room he began to cry, I asked him was he crying because of the pain or because of where we were, he looked at me an answered “both mum”.

 

Once we entered the specialists room there was no turning back.

Yet the C word was still not said and a biopsy was ordered. Later that week the first biopsy was done. The results were inconclusive. So a second biopsy was ordered. The waiting for an answer was heart breaking, at times we felt like we couldn’t breathe, Bas was now in more pain, drains hanging out of his leg, high on drugs, frustrated and at times very quiet lost in his thoughts.

 

After the second biopsy Bas had only been back on the ward 15mins and in walked 2 doctors. They knew what it was, they had the answer. Ewing Sarcoma, bone cancer. Our hearts sank. The doctors told us all would be ok, it’s fine. We just needed to go to Westmead Children’s Hospital the following Monday. Bas was diagnosed with this hideous disease on 21 October 2011. I felt as though I couldn’t breathe.

 

Bas and I spoke so much that day and night. “How mum did this happen “ I was heartbroken and in total shock with a thousand thoughts running through our heads. It was now I had tell Michaela and Alexis that Bas had cancer. It was one the hardest conversations I’ve ever had to have. But as we would learn these conversations would be had over and over again. I explained to the 3 of them that Dad, me and the 3 of them had just been put on a roller coaster, there was going to be lots of ups and downs, there will be times we’ll be tossed and thrown around, but as long as we all held on tightly we would get to the other end together. That was our dream. 

 

We were in complete and utter shock, we honestly thought that Bas had just torn a muscle worse cause ripped a muscle off the bone. Surgery yes but cancer no way. How did we end up here. How does a strong, fit young man get this dealt to him. Why, why, why

I remember Bas saying to us “I wouldn’t wish this on the girls (his sisters) I’m glad I got it not them”. Oh my, I didn’t wish this for any of my children. Bas you make me so proud everyday, I know what you meant but oh my.

 

I cannot explain the range of emotions we were all feeling. We were all hurting but all five us dealing with in five very different ways. The sadness, the not knowing what lay ahead, the wanting and needing to know how this was all going to pan out. We as his parents should be able to fix it, parents are supposed to protect their children, kiss it and make it better, put a bandaid on it and it will heal, why couldn’t we fix our son, so helpless. Our lives had changed forever, never would it be the same. Bas as he always did, put his head up high and said “what do I need to do”. He dealt with the diagnosis better I think than I did.

 

The following weeks at Westmead we learnt and entered the oncology journey, Bas had blood tests after blood tests, had his port inserted along with removal of bone marrow, fertility clinic, scans upon scans and heavy duty medicines. In true Bas style he was more worried about the other children in the oncology clinic, “look at how little they are, they don’t deserve this mum”. Oh my gorgeous boy , you don’t deserve this either.

 

The chemo began pretty much immediately, he spent 6 days in hospital having chemo then if he was ok he was allowed home for about 8 days then back in again. This sometimes happened and other times we had to stay longer due to temperatures or because Bas couldn’t keep anything down. Immediately the chemo took him to a horrible place. He became so so so sick. Bas hated every minute of it. Watching helplessly we watched his mind and body change, this was horrendous. Chemo was supposed to be killing the cancer but it was also taking its toll on the most pure hearted young man. There were many times he would just shut down and not talk, there were times he would voice just how horrible he felt. He was 15 years old and stuck in a place he did not want. Then his gorgeous thick curls started to fall out. 

 

After one horrible chemo visit Bas described that every piece of hair left felt like a pin stabbing into his skull. As we arrived home he asked me to shave the remainder of his hair off. My heart was stuck aching in my throat as I shaved his hair off, the whole time he was grey/green in colour with sickness, he could barely stand over the sink as his hair fell off. My poor baby who had always had soooo much hair now had nothing. 

 

People say it’s easier for a boy to loose their hair than a girl. This was so not the case. Bas was known for his gorgeous thick curly hair. It was gut wrenching watching him go through it. He then wore beanies, he didn’t want his friends seeing him with no hair, he did not want pity. He was private with his treatment.

 

Wether it was chemo, platelet or blood transfusions, constant taking temperatures, hospital visits, hospital stays, sleepless nights, tears (lots of them), not being able to eat, 2 hourly toileting after chemo, scans, pain meds, challenges one after the other, Bas did what he had to do. Yes he hated it, yes he wanted his space, he was 15years old trying to make sense out of something that was so soul destroying. We as his parents were exhausted but that had to wait he needed us. One of us stayed with him at all times. We were all scared out of our minds. 

 

Bas’s school, friends and the whole community were so supportive. I have said it so many times, if it wasn’t for these people I don’t know how we would have gotten through it all. Total strangers assisting in anyway they could. Blew our minds, Bas was chuffed that so many people were doing the most extraordinary things for all of us. Fundraising was commenced for our family. Something we were so grateful for but at the same time very humbled and at times embarrassed by. I know that’s silly but it was the truth. And then we met Tommy on Valentine’s Day in 2012. Tommy arrange so many things for Bas, meeting pro surfers such as Richie Lovett who had shared a similar experience to Bastien, they even shared the same surgeon. Tommy organised a surfboard for Bas and presented it him at the Tigers rugby game when Bas met Benji Marshall. Bas thought this was funny, the Tigers players were doing so much for him and he was torn as he loved the Broncos. Keith Galaway gave Bas several of his Tigers, State of Origin and Australian jerseys. Tommy was a constant support to our whole family from the day we met and that continues even today. Bas and Tommy shared a special bond and respect.

 

The chemo continued until Bas’s major surgery. We had hardly been at home for months but we knew this surgery would keep Bas bed bound in hospital for at least 6 weeks. There were times Bas wanted a break, he wanted to be with his mates, he wanted a surf, he wanted his own bed, he wanted to feel normal, he wanted to walk and fell the earth between his toes, he wanted his whole family together. This rarely happened, having the five of us together was so hard to get. There were times Bas and I wouldn’t get to see the girls for days/weeks. Michaela and Alexis were struggling too, they were confused, they needed us too. Our families rallied around to help us with whatever they could, just to make it a little easier. 

 

The week before Bas’s major operation on 20 February 2012 he spent the week doing “the things I won’t be able to do for a long time”. Bas was going to have total  hip replacement, major veins in his lower leg removed and replaced into his pelvis, they warned us that it would be a 9 plus hour operation with multiple blood transfusions. I remember finding him in the backyard one afternoon doing star jumps “ what are you doing “ I laughed. “Well I can’t do these after surgery can I “. Bas went for on last surf with his mates. I sat on the beach watching him struggling but I knew his mates and his uncle were right there to urge him on. He kept all our spirits up that week with his hilarious wicked sense of humour. 

 

Bastien loved his pets or any animal should I say, he bought any animal home just because he knew once it entered the front door we would never let them go. Bas had a love for goats for some reason. “I’m bored let’s go buy a goat” Bastien’s aboriginal totem is the long neck turtle and his given totem is the kookaburra. Bas loved his culture and always loved fishing in Darwin with his Grandad and uncle. 

 

The night before his big operation Bas put up on Facebook “ Love life don’t waste it”. This quote became Bas’s quote his friends still live by. Bastien knew what it was like to have the simply things taken away from him. 

 

The day of his major operation came. Bas walked through this hospital doors for a operation that took 12 hours. This was the longest day for Joe and I. We were beside ourselves with worry, the what if’s, have we done the right thing, we knew we would never get our boy back the same way, but we did what the doctors told us. We walked and walked some more with our hearts in our throats all day from 9am until 9pm. 

 

Bas spent a week in intensive care while I sat on a chair beside him. On the Friday night I finally “let” Joe take over, with pure exhaustion I needed sleep. I arrived home to be told he had spiked a temp and he was nervous. Dad was there to watch the football with him and I’d be back in the morning. I didn’t sleep a wink. Back to RPA by 8am to our boy.

 

The next 6 weeks ended in 5 different surgeries. What!!!! This was not on the cards, what is happening???? Infection, was he going to loose his leg??? So many sleepless nights, so many thoughts ran through our minds. Joe was still trying to work to keep us going. This was so hard on him. Working all day and then trying to get to the hospital as well as trying to be there for the girls. As parents we were running on pure love. Well one day it took its toll on Joe and passed out and ended up in Emergency. Bas was in so much pain. The girls just wanted us all home. We were all exhausted, emotionally and physically. But this roller coaster was still going and there was no way off nor changing it for any of us.

 

When Bas went to the ward after the surgery and intensive care he told me “look at this I have a lump” it was right near his surgery line. The doctors said “you body has been through a huge operation just let things settle “. Over time it continued to grow. One night after the 5th surgery in 6 weeks he mentioned it again to his surgeon. 

Well the next day a scam was ordered. This scan would change the word as we all knew it.

 

Bas was in so much pain, no meds were working effectively and now he had to have another scan. He could not lie flat at this stage and scan required him to do so. Here we were outside the scanning room with him nearly falling off the bed, hanging from the ceiling in pain and they wanted a scan. The scan was eventually done under heavy pain relief. My heart was breaking with each breath. 

 

That night the doctors told us they had found a “mass”, I dare not think it!!! But I knew. What is going on, why, this is supposed to be recovery. The cancer is supposed to be gone.

 

The next day they requested a family meeting. Joe had just passed out the night before, he couldn’t drive anywhere. I was there and I was hoping with all of my being that this was a mistake, all will be ok. Well as the head surgeon came through the door and motioned for me to leave the room I held my breath. Bastien’s grandmother stayed with him as I walked out the door to all of Bas’s medical team waiting for me. Holy moly what is happening I thought.

 

They eventually told me that the cancer had spread, it was everywhere. We had no hope!!!!!

After asking for my own mum, I then had to tell Joe. A conversation that nearly took me over the edge. But before this Bas was asking for me, I had to tell him. I told him what I could manage to get out at the time, I didn’t sugar coat it but I didn’t tell him everything. Maybe I should have, maybe I shouldn’t have, but I was a mum trying to tell my boy that the roller coaster is being derailed. How!!!!! How do you tell your son it’s not looking good while trying with every ounce of you  to retain HOPE that the doctors are wrong. How do we tell the girls I asked Joe when I saw him? This can’t be true, we need another opinion, we need SOMETHING!!!!

This is a nightmare, please let us wake up.

 

The following day Bas was transferred back to Westmead Children’s Hospital. The ambulance ride was dreadful, he was  in so much pain, every bump in the road sent him into agony. I pleaded with his oncologist to tell me something different on arrival to Westmead. I will never forget them asking Bas “do you just want to go home?”. He replied”what do I have to do now, I’m not giving up” I just remember smiling at him, so proud but oh so heartbroken.

 

Joe and I asked to see the oncologist alone. I can remember the world spinning, I could see his mouth moving but the words were muffled. I thought I was living a dream, foggy muffled words that I so don’t want to hear!!!!! I couldn’t breathe, I couldn’t hear him, his mouth was moving but I could only just make out his words,” weeks only maybe a month “ no no no no!!!!!

 

It was then we had to go home and tell the girls. This was more than real!!! This wasn’t happening, I can’t tell them. But it was not going away, we had too. Hard conversations like I said before, this was life changing. But the conversations ahead were going to be harder. Joe and I arrived home and took the girls into the kitchen, how do we say this to two little girls that we had told everything was going to be ok. Their looks of disbelief, of utter sadness is one we’ll never forget. Oh we wished we could change this for all 3 of our children. Their tears and confusion was unimaginable , loud and clear!!!!! My poor babies were all too young to deal with adult issues.

 

We were making arrangements for Bas to come home for his 16th birthday, organising a party. If it wasn’t so important I would have cancelled the party. He wanted this party and had been planning it for months. All he wanted was a dance floor for his friends, he couldn’t walk or even stand but a dance floor was ordered. Family and friends began to make preparations for a magical 16th birthday. My heart and mind was all over the place working with doctors and nurses to get him home as I had promised him before his big operation.

 

Bas arrived home from Westmead via again the ambulance one day shire of 8 weeks in hospital. I can still remember the look on his face when the doors of the ambulance opened and saw home, the trees and his dogs for the first time in nearly 8 weeks. I was so glad he was home but so scared that the doctors were so far away. He was now on morphine and I was terrified I was going to do something wrong. This was all wrong nothing in any of it was right.

 

We bought Bas a long neck turtle for his birthday, he named it Franklin. We spent a few days just being together, he played cards with his sisters, watched football with his Joe and his uncles, we listened to music, just tried to be normal in a world that was so not normal.

 

The nurses came to the house and administered chemo, he was getting sicker by the day. Keith Galaway visited Bas again.  He’s friends would pop by for a visit. All the while Bas was in and out of sleep, he struggled at times to stay awake. 

 

We had his birthday on the Wednesday and his party on the Saturday night. Bas tried so hard to enjoy it, I know he loved having his mates around. His mates made him happy. The birthday presents he received were unbelievable, his friends made it so normal for him. 

 

The following days after his 16th birthday party were horrible, his life was slipping away. Watching so helplessly was pure torture but what Bas was feeling was so much more.

 

Then on the following Thursday 26 April 2012, one week and one day after his birthday our gorgeous boy took his last breath with Joe and myself right beside him.

 

This nightmare hasn’t ended one bit. Our hearts continue to want, break and so wish things had been different. There is not a day that passes that we don’t hurt. As I said before there are 5 of us dealing with things so differently. As a mother and father we hurt, his sisters are growing up without their big brother. Bas is missing out on everything. We hurt for our children, we hurt for ourselves, but we hurt so so much for Bas. At certain times of the year we disappear from the world, take time out.

 

I read a poem once that states that the shoes we now walk in are uncomfortable, there are holes that no one can mend nor fix, I hate these shoes, some days they hurt so bad I feel a couldn’t take another step and once they were put on they could never be removed. Bas lives on in each and everyone of us, he touched so many people before and after. This will continue forever and always ..... 

As Bas said to us all

 

Love life don’t waste it!!!!!