“I am the older sister to Owen Copland, Jane Copland. It feels wrong to even be writing a story from my perspective, as to us, everything is about Owen. I am 5 years older than Owen (He was born: May 13, 2000), and I still remember so clearly getting told we were going to have a baby brother. I was so excited! All I can say is – although we are such a loving family, all three of us have the same name, Jane is the female of John, and Owen is the Welsh name for John! I have so much regret for not being around much the last 7 years. I have been to university in Leeds 2 hours away from home for three years, then I lived in Zambia for 2 years and then up until recently worked in Dorset as a chimpanzee keeper!
I remember my mom telling me while I was in Dorset in October of last year that Owen wasn’t well, I didn’t think much of it – until I called my mom after I was told Owen was having a scan and there was no answer. I then rang my dad to hear him crying saying they had found a lesion in Owen’s brain. A lesion turned to a tumor, a tumor turned to Glioblastoma, and this turned in a grade 4 aggressive and rare tumor that has travelled to Owen’s spine. The so-called ‘Terminator Cancer’ is stealing Owen from us – and it’s the most tragic thing that could ever happen to us all.
When I think of Owen, I think of us growing up and always asking him for foot massages (as you do) and being surprised as he always rubbed my feet. I have no idea where this came from…but I remember always feeling smug when he would just do it anytime, anywhere!! I remember us all watching Doctor Who each week and Owen loving it but being petrified of all the aliens! I used to watch Disney Channel with him everyday and we watched absolutely everything on there 200 times, always looking forward to the next show!
After school we’d go to my nan’s and play the X-Box together – I had no idea what I was doing on the games, but Owen was just so lovely you’d just be so at ease around him! I also think about going on caravan holidays and when going to the evening entertainment after a day using the arcades and collecting tickets for prizes. Owen and myself would be running around getting popcorn, slushes and collecting the teddy’s of all the characters at the park gift shop! Rory the tiger was always Owen’s favorite. Mine was anxious the elephant – very fitting now! I think about me always going into Owen’s room all the time and singing ‘All I Want for Christmas Is You’ – again no idea why, but I just adore him – just a shame I didn’t repeatedly tell him this before he became unwell!
I also think of Owen loving and having such passion for singing, acting and creating! All through school he starred in and directed plays and was always a huge part of the drama scene! He used to regularly do gaming streams on Twitch as the name ‘Sly Walker,’ podcasts with his friends, and even up until November last year before diagnosis Owen was looking forward to completing his third and final year at LJMU! He was telling my mom how he was eagerly awaiting getting to pick more specific modules that he was really keen on like directing!
I remember in Owen’s first year, I was working away and my mom told me some of his roommates in their accommodation were making fun of him because he didn’t talk about girls in the same way they did, or he didn’t want to smoke or drink. He much preferred a pint of diet coke and a game of Dungeons & Dragons! He has always been his own person; I’m so angry he won’t get to feel the reward of being so strong-willed and resilient throughout his life! But how anyone could make fun of Owen and make him feel inferior for being perfectly himself just angered me to my core. Owen leaves a lasting heart-warming impression on everyone he meets.
Owen would always be there to take a picture of me (might just be a girl thing!) and always there to cheer me up when I was lonely or down. I remember anytime I’d want to go for a walk if I was upset, he’d be there! And when I went through my first heartbreak, he was there to come with me on a day trip to Blackpool Pleasure Beach to cheer me up. I remember my mum emailing me a letter from one of Owen’s lecturers last year when he came home from school unwell in hopes I could help her with Owen’s coursework so he didn’t fall behind. I’d have written his dissertation for him to be able to graduate!
When I found out how serious this all was, I remember feeling SO guilty – looking at my messages to Owen, I was always asking him for student discount codes and never really asking about him! I had been away for years and I was so protective of him, but just was hardly ever around. Why didn’t I just stick around? I am so angry for abusing the fact I had an amazing baby brother! Owen really is the kindest boy I’ve ever met, there is no other way of describing him than ‘pure.’ After the initial guilt and shock, I was angry! Angry at the world – why of all people, was the nicest person made to suffer? It made no sense, still doesn’t!
Recently, I attended a family funeral and I remember my auntie coming up to me when all of my cousins were outside together. I felt sad because Owen was in the hospital and I was sat alone thinking, ‘Owen is just my type of person.’ We’d always been the goody 2 shoes of the family (the snitches – if you ask my cousins haha!), but my auntie said we were like kindred spirits and it has really resonated with me! I am SO mad I don’t get to grow old with Owen. We don’t get to share the experience of having kids, being at each other’s weddings or just watching each other grow old.
I thought if we researched enough and cared for Owen he’d at least do better than the 12-18 months you can usually get with Glioblastoma. But we tried it all – supplements, fundraising, positivity, second opinions, third opinions, research, research, research… and we’re here, at this point – and it’s terrible! But we have no regrets as we tried our best for him.
In the year before Owen’s diagnosis, my mom had mentioned to me some of Owen’s mental health struggles, I just assumed this was the typical teenage struggle, but now I feel like it was deeper than this. He is so laid back and positive, I personally feel the tumor had been making him struggle with motivation for life for a while. After diagnosis and finding out GBM doesn’t have a cure and the prognosis is bleak, the burden to let Owen know what little time he could potentially have left to live after he came round from his craniotomy was petrifying. On the one hand, he’d just had emergency surgery on his brain and needed to recover; on the other, he had a right to know he wasn’t all clear. The pain of telling Owen this will stick with me forever!
It’s hard to say how I reacted to Owen’s diagnosis, as it was all such a blur. A big fat COVID, nightmarish blur. I remember getting driven from Dorset to Liverpool by my auntie and cousins and sneaking into Owen’s hospital room with my dad to see Owen – who, despite now being on high-level steroids, was technically dying! Without surgery, he had days left to live. And we were all restricted from seeing him because of COVID! I ran into his room and knelt by his bed, as I didn’t want to wake or disturb him and he woke up. He was quite shocked and then his eyes rolled back! Due to the location of the tumor, Owen was calling me ‘Sarah’ (his girlfriend’s name), and Sarah was getting called Jane!
His surgeon told us his brain was so swollen that when they went in, the pressure of the tumor and swelling caused his brain to pop out of his skull. How this angered us after the fight it took my family to get Owen diagnosed. It took so many 111, 999, GP surgery calls, online e-consults (thanks COVID) and A & E trips to get Owen listened to and cared for. He was fobbed of as having mental health issues and we were told after Owen had a full seizure and went completely unconscious that ‘Everyone’s eyes roll back’ when we told them his eyes went white and rolled back before collapsing!
The official diagnosis of a brain tumor was on November 6, 2020, and after his semi-emergency life saving 6-hour surgery on November 10, 2020 his histology came back a few days later to tell us it was grade 4 and VERY aggressive! Owen and my family have been treated shockingly and this is the reason we want to make a change on his behalf for people who may have to go through this nightmare in the future! Our lives have become centered around Owen and making sure he has everything he needs! Owen deserves so much more than this. 20 years old is NO age to be given the death sentence! My mom and myself are round the clock caregivers for Owen. With the support of our extended family, we are able to leave no stone unturned for Owen when it comes to his healthcare.
We started a social media account on Facebook first. We wanted to document what Owen was going through, as during COVID you don’t really see anyone and we felt everyone should know about Owen – not just about his brain tumor necessarily, but also how sweet and lovely he is. Now we plan to keep on raising awareness for brain tumors and share what we have found that has been useful to know along the way to help other people out. We also share the enjoyable experiences we try to make happen for Owen; I was so determined to not let COVID affect the memories we got to make, so we did a photo shoot for Owen at home – which he struggled with, standing and smiling for hours – but he did it for us!
We also knew of food places Owen wanted to try when lockdown was going to be over and we organized a few meals for him to be delivered. These restaurants have kindly sent us all types of food for him to enjoy. One I’ll always remember is the Italian ‘Franco’s’ – we used to drive past their restaurant every day for 6 weeks on the way for Owen’s radiotherapy, and funnily enough it is located in the wedding venue my mom and dad had their reception in! He wanted to go there when he could, and when we knew he was coming home for end of life care, we reached out to them! The staff member I spoke to told me, ‘If its Franco’s he wants, its Franco’s he’s having.’ I’ll never forget the kindness strangers have shown us.
We also (with the help of Owen’s amazing classmates at school) organized a wedding in 2 hours after Owen was told he had days left to live. His classmate and family friend Suzie Higgins (with the help of some other amazing people) also organized a live stream fundraiser event and there was music, raffle prizes and so many donations to Owen’s GoFundMe! Before this, we had done a COVID friendly (at home meal) Valentine’s date – a three-course meal with a decorated Valentine’s themed room! We also did Owen’s room up for him as he was looking forward to being at home and feeling ‘well’ again. He really wanted all of his favorite things on his walls, so that’s what we did – in short notice, we printed off over 200 posters of his favorite games and family photos and bought everything yellow!
Kind people have sent Owen some amazingly thoughtful gifts and we love to share them on social media and show them as we keep adding to Owen’s lovely room! The social media side of things has really helped to raise awareness and give Owen a blanket of community support of people from all over the world! And for Owen to know just how loved he is has really been phenomenal. We even had a lovely lady give us the opportunity to have our hands casted – a moment in time captured forever! The thing is, Owen doesn’t ask for anything, he never complains or feels sorry for himself, not once! If you ask him how he is, he’ll say he’s fine and ask how you are! Even to this day, bed bound, tumor and all. What a credit to his mom and dad! He’s an angel in my eyes!
Preparing to lose your little brother bit by bit for 5 months is torture – you have moments when you’re not able to escape the pain and you go somewhere else, my mind goes into a blur – like a ‘day nightmare,’ never mind a day dream! Everyday from the moment I wake up to the moment I go to sleep I feel guilty like I am not doing enough for Owen. We have been told all along to not research and just enjoy what time we have left with Owen, but how could a family do that? The truth is there are better GBM specialists, more options and better treatments to be found outside the UK and privately, but amongst your initial shock and the race against time, how can one family be expected to do this perfectly?
Owen has been SO overwhelmed. I think for Owen, not being the typical 20-year-old lad, having some mental health struggles, he has doubted (very normally) how highly he is thought of, and from all the videos, fundraisers, the wedding, date nights, movie nights, and celeb messages he has been able to see how much he is loved – even now when we show him gifts/messages, he manages to express his shock at what is sent for him! Even when it is hard for him to speak. At the very beginning, when Owen was unsure what was wrong with him, he just kept telling us how much he loved us!
He is still the same appreciative loving brother to this day – and I won’t stop EVER showing him how much he means to us all. I’ll work night and day to show him this; we all do! Owen is quite laid back and positive, we have always been upfront with Owen with his situation (no matter how hard it has been to tell him), but as he always said, ‘It is what it is, we just deal with it’ and ‘If I get told I have 2 weeks, I’ll go for another 1.’ Well, Owen was given 2-3 days to live on March 5, 2021 and he is still with us! His strength and resilience is unprecedented.
What would I love for people to know about our journey? We’re making a change on Owen’s behalf – more training, more research, more funding! But most importantly, more awareness for GBM as we had never even heard of it, let alone finding out there is no cure and hasn’t been any new research breakthroughs in nearly 40 years. GBM – Glioblastoma, grade 4 brain cancer – is awful! If you look into the facts too, biggest killer of those under 40! Only 5% of GBM brain tumor patients live over 5 years.
We’ve had so many people be SO overwhelmingly supportive, but also the odd few people telling us what to do – i.e. to not give Owen sugar, etc. I urge people to think before they give advice as a snapshot on social media or what might work for other might not work for Owen. I have myself had a phone call of someone accusing me of ‘Not wanting Owen to live’ because sugar feeds cancer! We have always consulted Owen on what he wants, and for a 20-year-old to live on a ‘keto diet’ that there is no scientific evidence of saving someone’s life is very drastic, especially when food is one of the biggest motivators of a good quality of life for Owen!
Owen’s cancer isn’t normal GBM – recently, in a third opinion, we were told it’s the closest thing they know to it and one day will have its own name. Even neurosurgeons don’t fully understand it – so telling us what to do to ‘save him’ is offensive and distressing to hear. Often, people don’t know how to approach the subject of ‘cancer’ or ‘dying’ (I certainly didn’t) and so don’t know how to offer support. We would like to raise awareness so people are not afraid of saying the wrong thing. I’ve certainly learned from our amazing supporters how to be a real support to someone having a difficult time!
Owen’s life has been stolen. A proper marriage, having children, earning a job and showcasing his talent of directing, getting to travel, buying a house – every normal experience you should get to have has been taken from him in 5 short months. I am ‘coping’ by doing just that – I do NOT stop and cannot stop! I want everything for Owen – he deserves all the love, care and attention the world has to offer! And boy we’ll get him just that, for as long as we can!
Owen is SO talented, he was designing a game called ‘Role Play Game Limited’ and he self-taught how to build gaming PCs so he built quite a few for friends and family. He is a keen gamer and his game tag is ‘Sly Walker,’ so we have had some hoodies, wristbands and t-shirts made so everyone who wants can wear a piece of Owen’s legacy, something he spent hours doing and enjoying. It has so much meaning for him as he would regularly stream for people to follow on his Twitch account. We so wished we could have got everyone watching him play maybe just one more time, but this sadly won’t be able to happen now.
You learn to treasure everything! Another regret I have is I never usually throw anything away, but Owen went to New York on a school trip and got me a gift of a random purple key ring that said ‘New York – I love my dog.’ And I never appreciated it! Well, last year I threw it away and what regret I have! I wish I had it so much! My advice for people with a brain tumor diagnosis would be to join Facebook support groups and never give up hope! It’s hard – but you will want to know you’ve done everything for your loved one!
LEAVE NO STONE UNTURNED! ANYTHING FOR YOU OWEN – ALWAYS. #KeepGoinOwen”
This story was submitted to Love What Matters by Jane Copeland of Liverpool. You can follow Owen’s journey on Instagram and Facebook. You can donate to his GoFundMe here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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