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Site by Jenny Last Update 13/2/2017
BTA Stories. Contribute your story to this page - Email braintumourahoyhoy@gmail.com KIRSTY  KYLIE and JOSH  |  REBECCA KIRSTY: Hi, I’m Kirsty, I’m nearly 40 years old, which sounds a lot older than I feel, I still feel like I’m in my 20’s! I’m originally from Scotland, but fell in love 12 years ago with an Aussie, stereotypically whilst backpacking around Australia. I now have a wonderful hubby, two amazing small people and a cat. To cut a long story short, 19 months ago, on the 4th of December 2014, I fell asleep feeling excited. I had just finished my BA in Social Science majoring in Psychology three days before. I was due a baby the very next morning, on the 5th, and the day after that day, would be my 37th Birthday. Unbeknownst to me, my world was about to explode. I woke up 3 days later from an induced coma. Firstly, I thought I was dead (that’s a whole other story)! Then I thought I was in a psychiatric ward! (Surreal!). Then I thought I had epilepsy because I was told I had experienced a heap of grand mal seizures whilst pregnant…I was battered and bruised! Then, I found out it was a lot worse! …I had a brain tumour that needed to be removed ASAP! WTF! To add insult to injury, it was later found to be a grade 2 Diffuse astrocytoma brain tumour…which at present is an incurable type of cancer. Miraculously, I had safely given birth to my second child, on her due date. Seemingly with much hilarity, helped by the drugs and my sense of humour, except I have no recollection, despite being total compos mentis the day I gave birth.  It turned out, that the violent seizures I had experienced caused memory loss and fractured my spine in three places which developed into fibromyalgia. Not only that, I was suffering from Post-Traumatic Stress Disorder (PTSD).  Every time, I attended something public, it would trigger my PTSD, but I didn’t realise, and I would keep trying to breathe through these experiences, and not show how defeated I really felt. I felt like a shadow of my former self and I pretty much hid myself from the world as much as I could. For 19 months I’ve been learning to ride this mother fkr of a rollercoaster! Please excuse my strong language but I have been a ball of emotion…angry, sad, grateful, quizzical, shocked, blessed, inconsolable, lonely, overwhelmed and inspired. The diagnosis is shit, and the prognosis has stolen my blissful ignorance. As yet, research has no idea what caused it or what will cure it; and if a lasting treatment or a cure isn’t found, it’s going to rob my children of the person, I believe, could not love them more, and far earlier than I ever anticipated. Basically, It’s my version of the apocalypse! Thankfully, I have sought professional help. I have amazing doctors and specialists who have helped me to improve my physical and mental stamina. Using medication and techniques such as exercise, mindfulness and breathing, I’ve learned to take the needle off the broken record, so to speak. I returned to part time casual work after a year but really had to learn to pace myself. I watch comedies and I write and I try to remember what I love most, in an attempt to distract myself from the old me and embrace my new normal. Importantly, I try to really appreciate the good moments and appreciate what my husband lovingly describes as ‘tiny triumphs’. When I was diagnosed, Brain Tumour Ahoy Hoy (BTA) truly was the rescue ship in a sea of fog, financial despair and loneliness. I needed to find others survivors my age, who had been in the same boat as me, I guess I needed a compass, I needed someone who could give me some inspiration. It turned out even better than that, because we also found carers who could share their experience and who gave my husband support. I will be forever grateful to Samantha, who created this amazing support page and found the strength and courage to put her story out there, so that people like myself could realise we are not alone. BTA provided us with links to other support including financial assistance, support groups and the cancer council. I’m not sure how I would have coped had I not found this support page. KYLIE and JOSH: In January 2013 my husband Dean and I welcomed our fifth child Joshie to the world. He was an extremely happy and content little man, who literally ate, played and slept.  By June that year though, when he was just 4 ½ months old, things had started to change. He still seemed happy for the most part but he’d started fussing, sometimes completely refusing his feeds. By the Monday of the Queen’s Birthday long weekend, we were really starting to get worried. We finally made the decision that I’d take him up to our local Emergency Dept. while Dean stayed home with the other kids. That was just after 9am. I had barely sat down to wait when we were called in to be seen. All of a sudden we had people coming at us from what seemed like all directions. Bloods were taken, obs done and they started talking about transferring us over to Canberra Hospital. Once we were there, more tests were done then an ultrasound on his head picked up what they referred to as a blockage and an MRI team were called in. Shortly after that, I sat with my sister while they gave us a diagnosis we could never have imagined. Joshie, my little baby boy, had a brain tumour. Not only that but he had just hours left if they didn’t go in and relieve the pressure in his head straight away. They also told us he’d then need to be transferred to Sydney Children’s Hospital for more treatment and that a neo-natal intensive care team were already on their way from Sydney to pick him up. It took NETS three hours to stabilise him for the drive back to Sydney but he was all settled in the children’s ICU in Sydney Children’s by 8am, less than 24 hours after I’d first taken him to the hospital. Over the next 9 months, Josh went through multiple hospital admissions both here and in Sydney. He has had a total of seven surgeries with the possibility of still more to come. He had a PICC line placed to give them easier access for medication. He’s had countless CT scans and MRIs and even a lumbar puncture at one stage. He was diagnosed with Epilepsy and Cerebral Palsy plus a global developmental delay which has recently been upgraded to Autism. It’s now been over three years since they found Josh’s tumour and, although his neurosurgeon did manage to remove it, Josh still has such a long way to go. Currently he sees a physio, OT and speech therapist as well as his 6 monthly check ups with his paediatrician, ophthalmologist and annual visits with his neurologist and neurosurgical team. He started walking a couple of months after he turned 2 but isn’t talking as yet. He’s working very hard to get ready for pre-school next year. All of this while we live with the constant threat that cancer could strike again at any time. A diagnosis of brain cancer is one of the most isolating things a family can go through. Sure there are visible aspects like the scars from surgery but, on the whole, it’s an invisible illness that very few truly understand. That’s where organisations like Brain Tumour Ahoy Hoy come in. The simple act of connecting people who truly understand can never be measured. Having people you can turn to when you feel so alone is invaluable when you or a loved one is battling this disease or even living the aftermath. I truly do not know where my family would be today without the exact kind of support that Brain Tumour Ahoy Hoy offers. REBECCA: Brain Tumour Ahoy has been one of the most helpful resources I have encountered on my brain tumour journey. Hi, I'm Rebecca and I have a brain tumour. I started with two and now I have one - Both in the Brain Stem/Cerebellum area. I was diagnosed back in October 2014 after experiencing two strokes in the same area. It was quite a shock. I remember crying and then feeling numb. The initial diagnosis was of a tumour the size of a tennis ball. I was scheduled for resection surgery two weeks later. Initially, surgery went well. I woke up and it was like nothing had changed. Until the next morning where a checkup CT scan showed a massive hemorrhagic stroke (brain bleed) in the area and I was rushed into emergency surgery. I lost everything. The ability to move, talk, see, and feel gone in an instant. Twenty months on and I am still recovering from both the brain resection and the strokes. I still have fine motor skill issues - I can't write or drive - and I have chronic vertigo. I use a walking stick or a wheelchair. I have lost family and friends, I have lost my career, my social life, my independence - everything that made me, me is gone. With time, my personality is slowly coming back, although it will be forever changed by this journey. The biggest blow was six months into recovery where a check up MRI revealed another tumour the size of a golf ball in the middle of the Cerebellum. This one is inoperable due to its location, and better yet unable to be treated with chemo or radiation. I'm in possession of a very rare tumour, one of less than a hundred ever diagnosed. The World Health Organisation has no treatment guidelines other than surgery. Every alternative treatment I try is a stab in the dark. Otherwise, I can watch and wait. Each scan is a lesson in patience and a perfect picture of anxiety. I live six months to six months. Brain Tumour Ahoy and its founder Samantha have been a great support and encouragement to me. When no one had the tumour in the private group, she searched other groups and found two people in the US who had dealt with the same thing. Brain Tumour Ahoy is a fun, online support group with posts including informative articles, inspirational quotes, and funny memes. More than ever, we all need to laugh! I only wish I lived in Melbourne so I could attend the events. Brain Tumour Ahoy also has a public Facebook page that many of my (remaining) family and friends have liked and follow to read up and learn more about brain tumours in order to better support me. A huge thank you to BTA and Samantha for every positive contribution that has been made on my journey.