Imagine the Unimaginable:
For many of us the thought of knowing your lungs were filling with cancerous growths is simply unbearable. It’s unimaginable to think that one morning you could wake up, run your hands along your neck, your breast or your spine and feel your heart sink as you found another lump. For Matt Storey, and 1 in 2 other Australians, these feelings are all too common.
I met Matt about 4 years ago now, and have followed his journey the whole time. I wanted to write about Matt not because of what he’s gone through, or what he most probably still has in store, but because of his attitude to life, and his uncanny ability to make sure people are smiling and laughing, no matter how serious his situation, and often at his own expense. It’s this selfless kindness, and Matt’s unique perspective on life and friendship which makes him, in my eyes, extraordinary. I hope I can share a little bit of Storey’s magic with you, and I hope you will join his cause.
Matt was born and still lives in Newcastle, New South Wales. A self confessed sporting nut, Matt’s a dedicated Newcastle Knights supporter, cricket fan, and has always had a special passion and talent for swimming amongst all his other sports. As his teenage years came to an end no one could have thought that his incredible fitness was hiding an internal killer.
In May 2008 Matt started having night sweats. Initially thinking nothing of it Matt realised there was a problem when he had to lay towels down to sleep. After a series of tests, and at 18 years of age, Matt was diagnosed with Hodgkins Lymphoma. His body was literally littered with tumours.
This marked the beginning of what has become a 5 year journey; a journey through the years his mates would spend studying, working and partying, a journey in which Matt would be fighting a silent killer, and unimaginable odds.
Matt started a course of chemotherapy in August of that year which lasted until January 2009.
Despite a strong response to the treatment, and months spent catching up on student life, working and generally improving his fitness, a scan in June showed Matt had relapsed. News which would be devastating to anyone, Matt took the blow, but stood right back up, and kept on running.
It was a bigger shock when that scan came back positive than my initial diagnosis after responding so well to the Chemo… It was devastating news to hear but I woke up the next day fine and I was genuinely thinking “Right, Let’s do it!” There was no point in having a whinge, that wasn’t going to change anything-we just had to get on with it.
Getting On With It:
Said so casually, in reality “Getting on with it” meant more chemo, followed by a stem-cell treatment using his own, harvested stem cells. Another relapse was to follow the first lot of chemo but after more chemo Matt finally had the stem-cell transplant in February 2010. His body took a fair hit from the transplant, taking longer to recover than from therapy. Stubborn as he is, Matt continued to push through, going back to work and preparing to re-enter University when a post treatment scan in May finally tackled Matt to the ground.
A third relapse meant that Matt, now 21 years of age, was down to his last shot for a cure. This shot was presented in a treatment plan including another stem cell transplant, but this time the cells would be from someone else. A bone marrow transplant from a donor Matt had never met.
In order to find a donor, my blood had to be tissue typed. I was lucky enough to have two complete matches. One was a 39 year old mother of five from Australia, the other a young man living in Germany.
The German man was chosen as Matt’s donor and the transplant went smoothly, as did Matt’s recovery. 3 months later, Matt had another post treatment scan. This time, though, the scans were clear.
I don’t think I’d ever been more nervous in my life before getting the results of my 3 month post-transplant scan in February 2011. That said, I felt different about this one. When it came back clear, I don’t think I’d ever been happier in my life.
The doctors gave Matt the all clear to get back into the pool, regain his fitness and head back to his job as a swimming coach, which he more than readily did. Getting fit again was tough. Matt only made 500m on his first run, but kept at it, and within a month was running 4km in under 22 minutes. It was at this point Matt got in the pool. 500m on his first swim hurt like hell, but within 6 months Matt was working 30 hours a week and swimming 30 km a week. This kind of recovery was unprecedented; the doctors had never seen anything like it.
Fall Number 4:
He kept up this routine until his one year scan in November 2011.
I remember sitting there nervous again. Being perfectly honest, I had a bad feeling about this one. I don’t know why, I just did.
Matt’s instincts were right. He was facing his fourth relapse. This time the news was gutting, and this time he almost couldn’t pick himself up to keep running…
It was the kids Matt coached who kept his spirits from falling.
“They’re the best bunch of kids to coach and train with. The day after I got the result I was taking them as coach to district championships. It was my first carnival as coach and I was really excited about it. I had to play a bit of a poker face that weekend but having the kids around that weekend was great. And they definitely got me through November and December.”
In December Matt was given what’s called a Donor Lymphocyte Infusion (DLI), where extra cells which were harvested from the bone marrow donor are used to try and evoke a bodily response to fight the relapse. When even more spots started showing in scans, Matt underwent another DLI in February 2012. It was a week or two after this DLI when Matt developed a cough. The cough got worse, as did Matt’s condition. A scan showed a mass in Matt’s lungs. All tests came back inconclusive. April 2012 and still no diagnosis.
I was given 3 bronchoscopies, all a few weeks apart, and all results came back as inconclusive. I knew this would be the case. I was getting sicker and sicker, and we weren’t getting a diagnosis.
They had no choice but to do an open lung biopsy. Against all hope, the biopsy remained inconclusive. They didn’t believe it was Hodgkins, but that it was more likely a spindle cell tumour. If it was this tumour, and if it had spread, Matt was facing a death sentence.
As scans were sent around Australia, Matt’s condition was worsening. He had to stop work after collapsing one day, and to get anywhere needed a wheelchair. Matt had been sick from treatment before, but nothing like this.
Talking to my nurse, at this point on a scale from 0-5, where 0 is nothing wrong with you and 5 is deceased, I was at a 3. Nurses were talking to me about end of life scenarios i.e where do I want to die etc. I knew this conversation was coming. I was getting worse and worse, and with nothing coming through from other pathologists, I knew death was a very real possibility.
But Matt wasn’t done with life yet. He started having night sweats, and found lumps in his neck. Recurrent Hodgkin’s was brought back as a possibility. A call in September from 2 pathologists confirmed recurrent Hodgkins. Matt found out that his lungs were practically full of lymphoma, and had he not been as healthy as he was the sheer amount of them would have killed him. Again Matt’s fitness had saved his life.
The Price For Time:
Despite this diagnosis meant Matt was essentially incurable, it meant that he was treatable, and a new drug called Brentuximab was recommended by his doctors due to its limited side effects and clinical trial results. No longer part of a clinical trial or on the PBS, Matt is the first person in Australia to have to pay for this drug. At over $13, 000 a dose, and an expected 16 doses, that reaches a total in excess of $200,000: Matt’s price for time.
A week after his first dose Matt was out of the wheelchair, and two weeks later he was back in the game, doing most things without an issue, and the lumps in his neck were almost gone. The Doctors and nurses were stunned, and Matt was stoked.
He started improving drastically and in November 2012, after his third dose of Brentuximab, a scan confirmed what Matt was feeling. He had shown an amazing response to the treatment, with over 50% reduction of the tumour in his lungs and lymph nodes. This reaction meant that if continued, Matt would have a chance of another transplant, another chance for a cure, another chance at life.
Despite the cost of the drug, you best believe Matt is giving this chance his all! After 5 relapses, open lung biopsies, Chemotherapy, Bone Marrow transplants, and a lot of time and pain, Matt still refuses to give up, and that’s what I love about him.
His discipline, and mental strength is something else which I truly admire, and Matt explained that a lot of this he learnt through swimming.
Some of the sets we used to do were physically brutal and you had to stay strong mentally to get through them. The easy option in some of those sets was to throw in the towel, but watching the older guys when I was younger push through them made me want to do the same, and since then I’ve never thrown in the towel.
I asked Matt how he gets through each day, how he can continue to joke about getting nurse’s numbers and his “sexy scars” and he tells me he owes a lot of it to his friends and family, but especially his Mum.
“There’s no doubt the person that has helped me the most is Mum. Me and her are alike in a lot of ways, and she’s been as solid as a rock through the whole thing, which I definitely think I’ve fed off. She’s the one person I’ve always felt safe talking to about my thoughts, views and feelings on the whole situation.”
Perhaps not so ironically, Matt’s chance has finally come. Now in complete remission Matt is scheduled for another bone marrow transplant to take place next month. The donor, his Mum. If the transplant fails, Matt will return to Brentuximab, but if, finally, Matt gets the cure he deserves, any remaining funds from the Matthew Storey Foundation will be donated to a similar cause or charity.
After reflecting on Matt’s story I am reminded of the old Japanese legend of Daruma, closely associated with the Japanese proverb, ‘Nanakorobi yaoki, jinsei wa kore kara da’, loosely meaning:
“Fall down seven times, get up eight, life starts from now”.
Named after an ancient Chinese Zen Master, Bodidharma, the Daruma Doll is a symbol of self-discipline and positive outlook. Weighted at the bottom and rounded in shape, the doll will always roll back up when it’s knocked over. This, in a nutshell, is Matt.
Never, Ever Give Up:
Matt like all of us has many dreams, goals and aspirations. He wants to help the kids that he coaches reach their full potential and grow up into the fine young adults that he knows they’re going to be. He wants to see the world and see the Newcastle Knights win another Premiership. Most of all, he wants to go to the World Transplant Games, win 5 gold medals and break 5 world records!
Matt’s story teaches us something special about the world we live in, something that is blatantly obvious, and yet we seem to forget so frequently. Life is fleeting and in the end, each of us will die; we can make of it what we will. We can choose to pursue our dreams, or not. We can choose to help others pursue theirs, or not. It’s really that simple. I asked Matt for a piece of advice he could share with the world. Here it is, in his own words:
“Don’t plan too far ahead, enjoy each day, and, most importantly, never give up.”
Matt, like Daruma, teaches us to NEVER, EVER GIVE UP on our goals and dreams, even if you’ve been told you’re dying.
The Choice Is Yours:
Today is a new day to get back up, and certainly an opportunity to hoist someone else up with you. For the past 4 years I have followed Matt’s progress and have joined his cause. I’d now like to extend an offer for you to do the same; the choice is yours.
A big thankyou to Matt for letting me share his story, and another big thankyou to my girlfriend Dani Brown for giving me a kickstart with the post and helping me write it.