February 4th marks World Cancer Day, a day when people all over the world share posts, pictures and stories all about the horrible disease that plagues 1 in 2 of us. I haven’t written in a while now, but I always feel obliged to share something on days like these.
I’ve said before that childhood cancer was never a priority for me until my child got cancer, and on days like today, I can fully comprehend how much this is true. World Cancer Day has become significant to us because we have been so deeply affected by it, but up until Aurora’s diagnosis, it’s something we would have thought about in passing. It wasn’t ingrained as deeply into our lives, despite the fact that there have been others I love affected by it.
It’s hard to believe that it’s almost 2 years since our little girl grew her wings, because the passage of time hasn’t been linear since the day that we lost her. It all sort of jumbles in to one, and it still feels like it was yesterday she was here holding our hand. There hasn’t been a day gone by where her name hasn’t been brought up in my house, where we haven’t shared a memory or a story, and it’s both refreshing and heart breaking all at the same time. Because, what happens when the day comes that nobody says her name? and how are we supposed to react if her sister all of a sudden doesn’t remember her? I wouldn’t wish this grief on anyone, especially not our children, but the idea that they will forget or not remember, makes my grief worse.
Cancer is a cruel disease. To watch someone you love deteriorate before your eyes leaves an emotional scar that’s hard to put into words, and whilst that stands for anyone put in this position, watching your child go through it is another world of heartbreak. It goes against the natural progression of things, the concept that we are meant to get old before we die, the global agreement that a parent shouldn’t have to bury their child, and do you know what? There isn’t one oncology parent I know, that hasn’t thought that they were going to have to say goodbye to their child or lost sleep over the possibility that they would be planning a funeral.
Sometimes people don’t share the harsh reality of what childhood cancer looks like. When I wrote about Aurora’s journey, I was very particular about what I shared. I omitted details that I thought were too much for other people, but we still had to live them. Every time I go back to messages I sent when she was poorly, my heart plummets, because there’s so much that I put to the back of my mind and I’m reminded just how raw and real the whole year was. People watch the adverts, but they’re not real life, they’re a snapshot of a good day, and they’re sorely outnumbered by the bad.
Even on the good days you take them with a pinch of salt. You wait for a temperature spike, all day every day. You’re monitoring fluid and food intake. You’re dealing with mood swings and the side effects of medication even when they’re off of them. It’s never ending, and physically exhausting, but we do whatever we can to get our children through it. It’s a really isolating journey, because even those closest to you can’t fathom how it feels.
With that in mind I thought I would share some practical things that people can do to help families who might be going through a diagnosis and trying to navigate their way through treatment:
Be Present:
Sometimes all we need is a listening ear and a place to vent. Some people vent online, some people journal, others need someone to convince us it’s what we need. I suppose our journey was slightly different due to covid, but offering help, even if it’s declined goes a lot further than you think. I can’t stress enough how it feels like your child has reverted back to a newborn when they go through treatment. It’s tiring.
Give Blood and platelets:
Most, if not all, oncology children will need a blood transfusion during their time on treatment. The way chemotherapy works is by destroying the fastest growing cells in the body, which is why hair loss is so common, and this includes cells generated in the bone marrow. The blood cells are frequently damaged during chemotherapy, which means in order to elevate HB and platelet levels, blood transfusions are necessary. Giving blood is a simple procedure and a vital component of treating cancer. For some clarity, Aurora had over 70 blood and platelet transfusions during her cancer journey.. If you would like to give blood or would like more information:
https://www.blood.co.uk/
Sign Up to the Bone Marrow Register:
As those of you who follow us are aware we started a campaign in honour of Aurora to encourage more people to sign up to be a bone marrow donor. Bone Marrow Transplants are commonly used to give the immune system a ‘reset’ of sorts, and is a brutal process that comes with a lot of risk. In order for the transplant to go as smoothly as possible, recipients and donors must be matched as closely as possible, which can be difficult when it comes to having mixed heritage, or being from an ethnic background. Whilst we were fortunate enough to have found a perfect match for Aurora, we were given a less than 20% chance that this would happen.
If you would like to become a donor or haven’t already signed up to become a donor, here is the information you need:
http://www.ACLT.org – The ACLT a leading Blood cancer/disorder charity dedicated to raising awareness of the severe shortage of donors on United Kingdom Stem Cell, Blood and Organ donor registers.
http://www.anthonynolan.org – For those aged between 16 – 30
http://www.DKMS.org – For those age 30+
Crowdfunding:
We were privileged to have received a number of donations when Aurora was going through treatment that allowed us to have the security of keeping our home and being able to afford to stay off work. Understandably, not everyone can afford to donate to crowdfunding pages, but a share costs nothing. With the increased cost of living, parents are finding it increasingly difficult to afford the added costs of travel to and from hospitals, parking, food and everything else that this journey entails. People don’t always want to share their money concerns or plead poverty, but the prolonged treatment adds up, especially with multiple appointments across primary care centres in London which aren’t always easy to get to.
Support a Charity:
Charities were monumental in supporting us throughout our journey, and continue to do so after the loss of Aurora. If there’s a chance you would like to do some fundraising, or support a cancer charity that works directly with children, Young Lives vs. Cancer has monthly fundraising challenges you can get involved with, and has created a fund in Aurora’s name that you can donate to which goes towards helping other families:
https://funds.younglivesvscancer.org.uk/TheAuroraFund
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Growing Pains and Paper Planes 