With the launch of Childhood cancer awareness month, I’d like to share a story about an incredible little girl Harper Brave and her family, who found themselves thrown head first into a life they knew existed, but one they hoped they would never live themselves. There was no warning, no planning, no choices made. One day the doors to their new life opened and they were ushered through, entering a parallel universe where life on the outside stops. The only thing that matters once entering this world is that once your time is up, you all get to walk back out those doors together, forever changed but together.
Harper’s beautiful little face kept popping up on our @mayasrest Instagram feed. I was slowly learning the story of this gorgeous little not-quite two-year-old who had Bronchiolitis at the end of May. Bronchiolitis that took a little longer than normal to shake, even though it was considered a 2/10 in severity when first treated. It was nearing winter and Harper was sick, like so many children at the same time of year. Nothing out of the ordinary, nothing to cause alarm. Harper was tired but still enjoyed play-dates, outings and helping mum Eliza in the kitchen.
By mid-June Eliza and her husband Darren were worried about their increasingly lethargic toddler and took her back for another check up with the same GP who diagnosed her Bronchiolitis. This time he was concerned, worried that little Harper was anaemic. A blood test was performed and extremely low haemoglobin (red blood) levels saw the family sent to the emergency department at their local hospital, and eventually they were transferred to Sydney Children’s Hospital in Randwick. This was the 22nd of June 2018.
A blood transfusion was needed to help stabilise Harper’s haemoglobin levels at an acceptable level, providing her little body with energy needed to explore her new surroundings. Doctors and nurses drew more blood and performed tests, working hard to get to the bottom of the cause of Harper’s low blood levels. Darren and Eliza comforted their daughter and distracted her with adventures throughout the children’s hospital, convinced that within hours, a few days tops they would be taking their little girl home.
It was the latter before the answers came and on the 28th of June 2018 their brave little baby girl was diagnosed with leukemia. Just like that. No time to prepare, no chance to say no, no choice to make. In that moment life changed forever. Their little Harper was diagnosed with cancer.
I watched on via Instagram as this little family travelled a path similar to my own. First the disbelief, ‘this can’t be happening’, and then eventually acceptance and the physical shift into survival mode. Every action centered around caring for an ill child, hopes and fears exploding into every thought, every moment of the day. All while trying to bring a bit of normality to a completely ‘not normal’ situation, in a nowhere near normal environment of needles and bright hospital bays full of frightened children and bewildered parents.
An unimaginable twist of fate
I reached out to Eliza via Instagram messaging, telling her about the free respite we offer to families of sick children in hope of providing them with a chance to recharge away from hospital. I told her that when Harper is well enough to leave hospital, that they were welcome to come and enjoy a few days in the country, we’d look after all their meals and organise fun activities or a simple massage to help them relax.
I was not prepared for Eliza’s reply, it hit me really hard, splintering my own unhealed heart. Eliza pointed out that she knew about Maya’s Rest and we had actually met earlier in the year after her mother’s group collected single serve spreads, cereals and coffee for families who stay at Maya’s Rest for respite. Our meeting was brief, we called in for a few minutes on the way back from a day at the coast with camp quality. Eliza met us at our car and we had a quick chat and took a photo so we could thank her and her beautiful mum’s group on social media. That was it. Oh how I wish that was really it.
Eliza had wanted to do something for the families that stay at Maya’s Rest, after hearing me speak at an event in the October before. In her reply via Instagram, Eliza admitted that she never thought she would need to use our services herself. Heartbreakingly, within four months of her caring donation her own little girl was diagnosed with leukemia. Life can be so unfair.
Cancer does not discriminate
I know that cancer does not discriminate. I know that it is not a result of anything we do as parents, or for that matter don’t do. I know that Karma doesn’t play a part, but for the very first time I was wishing that this beautiful little family’s efforts to support others in heartbreaking situation had given them a free pass. They should have been able to zip around the playing board of life, collecting $200 as they passed ‘Go’. It wasn’t fair that they hit this roadblock, that their lives had been turned upside down after trying so hard to help others.
Ways you can help
You can follow @HarperBrave on Instagram and learn more about Eliza, Darren and Harper’s journey, supporting them with well wishes and positive comments. Let this loving little family know that that they are not alone. Help give them the strength to get through each day.
You can also help by donating blood or blood products, which literally saves the lives of children just like little Harper Brave.
Donating to charities like the Ronald McDonald House, Starlight Foundation, and Camp Quality helps to support families like Harper’s and charities like the Leukemia Foundation, The Kids Cancer Project, Sydney Children’s Hospital Foundation, Dainere’s Rainbow and Stronger, Braver, Smarter who all work tirelessly to raise funds for research into finding a cure to all different types of childhood cancers. Your donation will make a difference.
Sharing this story will help bring awareness to the fact that cancer does not discriminate and to encourage parents just like Eliza and Darren to follow their hearts when it tells them there’s something not right with their children. That it’s OK to keep going back to the doctor until you are comfortable that your child is OK. Don’t let doctors turn you away if your child has symptoms that you are concerned about.
Please remember during the heightened focus on Childhood Cancer in September each year, that cancer doesn’t know a date. It doesn’t exist for a month. It’s capable of turning your life upside down any month, any day, any minute of any year. One moment your life is normal, next minute your normal is a very very different life.
And finally, if you know of a family with a seriously ill child, that could use a few nights all expenses paid away in country NSW, then please put them in touch with us via www.mayasrest.com – we’d love to offer them our support.