‘He doesn’t have much time.’ Dylan was as fit as a fiddle. ‘What if I never get to see my brother again?’: Woman becomes perfect match for brother’s bone marrow transplant, ‘It was my turn to repay him’

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“Leaving this earth without having some kind of positive impact. That is one of my biggest fears.

I want to help as many people as I can, in any way that I can. Simple as that. I want to spread love and positivity through the power of music, humanitarian efforts, and good old-fashioned kindness.

However, ask me the same question 2 years ago and sure enough, you would receive a very different response to the same question. ‘Not making friends at school.’ ‘Not being asked out by that cute dude.’ ‘Being publicly humiliated.’ Those would all be appropriate 16-year-old Lara responses. It is normal that your response would mold and maneuver over the years, but personal experience and hardship have been at the forefront of my reason for change. Let me tell you a bit about that.

Two years ago is where this journey begins. At 16 years of age, I had just finished up my third treatment stint for ongoing issues with eating disorders (a story for another time). This admission was interstate and I had just arrived home to my gorgeous family, whom I adore. There is my dad, a steadfast, kind, and determined businessman with a secret soft side. My mum, who has a heart of gold with unwitting enthusiasm for love and life. Luke, my oldest brother, a caring and unbothered character. And Dylan, my older brother with an appreciation for sensitivity and compassion.

Courtesy of Lara Dee

While I was away, Dylan had been staying up until midnight on the phone with me, waiting for me to fall asleep, as I was really struggling with the treatment and distance from home. All the while, he had been experiencing and ignoring random symptoms while my parents were concerned with my health (still something that rattles me with guilt). These symptoms included fatigue, petechiae, mouth ulcers, and unexplained bruising. My brothers are both fit guys, so he just assumed the fatigue and blood vessel-looking marks were just from going too hard at the gym. However, when suggesting the idea of visiting the GP, Dylan agreed to reassure our mom everything was fine. Initially unsure about the cause and onset of these symptoms, the doctor ordered standard blood tests, along with a routine set of observations.

Dylan was indeed fit as a fiddle. Perfect observation results with the heart of a fit 19-year-old. The blood counts however told a completely different story. He had a hemoglobin count of 95 (normal is 132-166), a neutrophil count of 0.3 (normal is 3.4 to 9.6), and a platelet count of less than 3 (normal 135 to 317). All of these are dangerously low.

I had just wrapped up a routine yoga class when receiving the call that inevitably changed the course of my existence. Dylan had been rushed to the emergency room and was undergoing further testing. I managed to convince myself he had just caught a virus or infection and would be sent home in a few hours. I projected this state of mind onto my mum and ultimately learned a valuable lesson in the harm of unhelpful optimism. Dylan did not have an infection or virus that he could pop a pill and cure. He had a disease called Aplastic Anaemia. His bone marrow was simply failing to produce new cells, causing his bodily functions to rapidly deteriorate. It’s a disease in the same family as Leukemia and consequently treated in the same way. When I was told this information, I was confused. My gorgeous, fit, young brother was talking to me, laughing with me, comforting me, while his life was unknowingly seeping away. I wish I could type that with a sense of exaggeration, but the specialist told us he didn’t have much time and was lucky he came before it was too late. Not exactly the news you want to hear on a Friday night…

Courtesy of Lara Dee

I have always had a very pragmatic way of thinking so immediately, I was asking about the cure and what treatment and prognosis looked like. The most promising treatment for this condition is a bone marrow transplant from a matched DNA sibling donor. However, it is extremely rare (about a 1 in 5 chance) for any sibling to be an exact 100% match. Of course, Luke and I lined up to get the test that would assume Dylan’s fate. We were assigned a counselor we could access. Siblings often feel hopeless if they turn out to not be the match required to save their sibling’s life — pretty big emotive guilt for something genetically predisposed. The agony of waiting for these results was almost unbearable. I just wanted to know if I could save him. If I could somehow repay the brother who had, in turn, saved me so many times.

The news came two days later that I was, in spite of the odds, a match to Dylan and was subsequently the waking end to this horrible nightmare. The news was one of thankfulness and utter shock. We had been spared a bullet in what felt like a cruel game of Russian roulette. But our journey had only just begun.

Within 12 hours, Dylan was receiving platelet and blood transfusions at an Icon Cancer Care clinic. I sat beside him and winced with each newly inserted cannula. He bled a lot when removing the cannulas because of his body’s inability to clot but he never once complained or seemed defeated. Along with this, Dylan had to quickly adapt to self-injecting immune boosting support into his abdomen. We often used humor as a defense mechanism and made fast friends with the staff. They were all incredibly supportive and more than willing to have a laugh. They were constantly telling us they had a soft spot for Dylan because he was so young, compared to the usual demographic. It was endearing but also hard to swallow as a sister. Why did this horrible thing happen to such a young promising individual? This was somewhere old people end up.

Courtesy of Lara Dee

And, of course next came the Hickman or central line insertion, ultimately his lifeline for what was to follow. His chemotherapy and transplant material would all be delivered through this vital tube, making the insertion, although hideous to watch and gut-wrenching, completely necessary.

Courtesy of Lara Dee

The following day, I stepped into what my family would call home for the months to come, Oncology Ward 5C. This was the home that would witness mine and my brother’s tears, laughter, pain, and growth. I never spent a night on 5C because there were no overnight stays allowed but I ached, knowing that Dylan was alone in what essentially looked like a clinical isolation dorm. The oncology ward was populated by (mainly elderly) patients receiving chemotherapy and/or transplants. These patients are incredibly immune-suppressed and at a high risk of lethal infection. Wearing gloves, gowns, and masks, washing my hands, and social distancing was all very familiar long before the Coronavirus struck. I wasn’t able to go to school or even leave the hospital or the house to socialize. I had an important task to prepare for. My whole family had to focus on not bringing any foreign germs into 5C.

Courtesy of Lara Dee

Chemotherapy is a dreaded treatment that is painstaking to endure and arguably, equally as painstaking to witness. One person was allowed beside Dylan at a time throughout his treatment and I am forever grateful I had the opportunity to hold my brother’s hand through what would be some of the most hideous moments of his life. I don’t need to go into all the details of chemo, as what you see in Hollywood movies is (unfortunately) pretty much bang on. I can, however, describe the feeling of seeing a young man, so full of life and spirit, relinquish to the grasp of weight loss, bleeding mouth ulcers, vomiting, hair loss, and pain. You know these things are a process to revive the brother and best friend you love, but something about seeing Dylan morph into a completely different character sent fear and doubt through my body. What if I was never going to see my ‘real’ brother again? What if the transplant doesn’t work? What if….?

Courtesy of Lara Dee

I never once expressed these thoughts and emotions to my family. That would be cruel and nonsensical in a time of crisis, so I carried them close and would constantly find myself in states of panic and complete personal turmoil. In the later stages, I turned to smoking, rebelling, and withdrawal as a way to manage these emotions.

That has been a major drive for my passion to help people through the work I do now and aspire to do in the future. Coping in these ways is not the only option. I would love to help anyone who feels like they need an escape in times of crisis.

Courtesy of Lara Dee

As the following weeks ticked over, I began to get prepped for the bone marrow extraction surgery. I made the horrible mistake of watching a video of the surgical procedure and managed to convince myself of the worst-case scenario. I would die on the table. Spoiler alert… this did not happen. I doubted the procedure, the doctors, and the science. Just another example of a self-decrementing phase of panic. The emotions I felt were only discredited by the people around me. I was told constantly that if *insert name* had a 5% chance of surviving and had to have the surgery, they would do it for their sibling. Another motivator for my desire to work in aide of others. No one should ever have their individual emotions towards something so drastic belittled. We all cope and process in ways that differ and make us the individuals we become. In spite of the power of *insert names* comments, it was not the reason I overcame these fears and braved the reality. That’s on me, and I stand by my individual capacity to come to the powerful realization that Dylan needed me.

I went into the surgery prep holding my dad’s hand, wearing a snazzy hair net and compression stockings which made me feel like an overexcited 80’s aerobics instructor. My mum sat directly above me in 5C with Dylan, anxiously anticipating the day ahead. It was a pretty standard surgery experience, from my end. The cannula went in, I had a good sleep, and I woke up with an extremely sore throat (from intubation) and fashionable oxygen prongs. Of course, I tried to ignore the fact that the whole operating team had seen my naked ass and just extracted 2 liters of blood and bone marrow.

Courtesy of Lara Dee

All jokes aside, I was very out of it and slept for a good couple of hours. When I did wake up, it was because of a student nurse was having a go at inserting a canula for my iron infusion. I have so much respect for student nurses (I was one for a while) but this person messed up big time! She miss-judged the vein position and started running the infusion into my muscle tissue. If I wasn’t already awake, the pain of iron running through my muscle sure did the trick. What followed was screaming and a very upset nursing facilitator. I hope the poor person still passed. This was the beginning of a very long and painful rehabilitation, but one I would endure over again for my brother’s life.

Courtesy of Lara Dee

A few hours after the iron fiasco, I was given the news that Dylan was being infused with my stem cells and I was welcome to join him. Of course, I accepted the offer and was wheeled upstairs to be with him through the process. I lasted about 20 seconds before almost A) passing out at the sight of 2 liters of my bone marrow in a bag and B) bursting into tears at the sight of said bone marrow going directly into my brother’s chest. It was a powerful moment, one I will cherish deeply forever and carry with me when remembering why I love helping other people.

Courtesy of Lara Dee

I met so many inspirational people through this time and what followed. It is this experience that got me so passionately involved with humanitarian work, volunteer positions, and just being KIND. You never truly know the extent of someone’s suffering and those who don’t speak often bear the biggest loads. I hope to one day to extend what I have experienced to make systems and people better and change the way the world envisions certain situations and create an image of hope and capability. As much as it is my biggest fear, it is also my biggest motivation. I want to leave this earth knowing I had a positive impact. Thank you for reading and please be kind to others and be kind to yourself.”

Courtesy of Lara Dee

This story was submitted to Love What Matters by Lara Dee. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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