Life for our family changed forever in 2013 when our two-year-old baby girl was diagnosed with neuroblastoma. For four years, Evie Grace endured surgeries and seemingly endless treatment only to relapse four times before gaining her angel wings on 19 December 2017. Throughout our cancer journey, because my husband Josh and daughter Alicia shared it too, there were moments of extreme joy alongside the heart wrenching pain. Here are a few lessons I learned along the way.
1. Cancer does not discriminate (and neither should you)
I remember one of the first things Evie’s doctor said to us was there was nothing we had done that had caused Evie to become sick. Childhood cancer is not like cancer in adults. There is no known prevention. Research has shown that it does not discriminate between gender, race, socio-economics, where you live, etc.
When your child is sick, you can often wonder if there was anything you could have done to prevent it. Then there are those well-meaning people who try to comfort you with their opinions as to why it may have happened. I’ve had people say they think it’s immunisations, others say it’s the food.
All I can say is if you are ever in the horrid position of having a friend or family member who has a child diagnosed with cancer, they don’t need you to solve why it happened. They need love and support. Full stop. They need a shoulder to cry on. Someone to vent to on a bad day. Someone who they feel safe to say when they are scared or don’t know how they are going to get through it. They don’t need people being medical experts and making them feel guilty about what they could have done to prevent their child getting cancer.
Evie at QBE Foundation Day, August 2016
2. Children with cancer need blood transfusions throughout their treatment
The very first time we were told Evie needed a blood transfusion was just after we found out she had a tumour and it was all new and scary. I didn’t really understand and felt so devastated. As they hung the bag of blood up ready to transfuse into Evie, I looked at the date the blood had been given, 31 July. Evie’s birthday. I remember thinking how beautiful it was that unknowingly, someone had given Evie a present on her birthday by giving her blood that would help save her life.
Since that first transfusion, Evie has had so many transfusions, both haemoglobin and platelets. If there is anything I can encourage people to do, it is to give blood if you are able. It is something simple you can do that really does make a huge difference to a child having treatment from cancer.
Sarah Weir with daughters Alicia and Evie. Photo credit: Tim Williams Photography
3. Watching a child battle cancer changes you forever
If you have ever set foot in an oncology clinic or ward at a children’s hospital, it really does change you. The children look different. They have bald heads, often have a bit of a grey skin tone, some are really skinny or are in wheelchairs, and some have feeding tubes taped to their faces.
However, they are still kids. They just happen to be facing the biggest battle of their lives! They are resilient heroes who, despite what they are going through, continue to smile. They still sometimes chuck tantrums or cry about having to have a needle or take disgusting medicine, but they are incredible. There have been times when I have felt so broken and exhausted, only to be given strength from Evie. She never knew that was what she was doing, but she would say or do something that would spur me on, and I found myself drawing strength from her.
As parents, we often feel we are meant to teach our children about life, and how to live. I have discovered that they in turn teach us so much. I have learnt so much from Evie and watching her battle cancer. My perspective on life and what is important has been changed through watching Evie and the kids I have met through hospital.
Evie snuggles up with mum, Sarah
4. Siblings of children with cancer suffer more than you would think
In many ways, I feel like Alicia has struggled more with Evie being sick than Evie herself. This is probably due to Evie being so young when it all happened. But for many siblings, having to watch someone they love go through nasty treatment, get really sick, and be apart from them is so heart wrenching, confusing and scary. They also have to have either Mum or Dad away a lot, spending time at the hospital with the sick child. They see their brother or sister get loads of attention and presents, and can sometimes feel like they wish they were the sick ones.
Alicia always struggled when Evie had to be in hospital. She also was affected when Evie relapsed, as she understood what that meant. The day of Evie’s last scan, we picked up Alicia from school and the first thing she said to me was, ‘Is Evie ok? Was the scan good?’ She said she had been fragile all day thinking about Evie’s scan. The siblings of sick children are the unsung heroes.
Evie and big sister Alicia. Photo credit: Tim Williams Photography
5. Friendships made in hospital with other parents are so important
Being in hospital is isolating and lonely. Sometimes we had to spend weeks at a time in hospital. I don’t know how I would have survived those weeks without the friendships I made in the parents’ room of Camperdown Ward or sharing a room with another family. Those friends become your second family. You often see them more than you do your actual family!
When you spend your days sitting in a square box of a room, bumping into another mum or dad while making a cuppa and having a quick chat is your sanity. It’s because you’re connecting with other people who truly understand what you are going through. That know how you feel. People who know how lonely it is lying in a hospital bed all night beside your sick child, comforting them while they are sick in the early hours. Someone who knows how scared you sometimes feel at the thought that you could lose your child. How anxious scan day is. How much responsibility you shoulder, giving your children medication and hooking them up to feeds when you are discharged from hospital.
Childhood cancer is a terrifying world, and I am so thankful that in the midst of very dark days, there were rays of light with the friends I made. Friends I will call friends for life. Friends I share a bond with that can’t be broken.
6. Life is never the same after your child has cancer
There is no going back to the somewhat normal life you lived before you heard the awful words, ‘your child has cancer’. You are forever changed.
Even when treatment is finished, you still live with the threat that it will come back. Many children suffer from long-term side effects from treatment, and you see life very differently. In some aspects, for the better.
I know that my perspective has changed so much. Situations that would have stressed or bothered me before pale into insignificance compared to what I’ve faced. I have become really mindful of living for the now. Trying not to worry about what will happen, but enjoy what is happening right in front of me. To seize moments in life and just go for it. I also find myself appreciating things that would have just seemed so ordinary, I may not have even noticed.
No, life is the never the same and nor should it be.
Weir Family at Tangalooma Island Resort, August 2017. Photo credit: Tangalooma Island Resort
7. Children die from cancer
This is a very harsh awareness. Unfortunately, I know this all too well and our family is certainly not alone. While Evie was going through treatment, we saw many children pass away. It is one of the most excruciating things to have happen to you. Cancer stole our baby. Not because she didn’t fight hard enough, or we didn’t do everything we could.
Josh with his little girl, Evie. Photo credit: Tim Williams Photography
8. Fundraising and research is vital
Before Evie was diagnosed, I had never fundraised. But over the past four years I’ve found fundraising to be a very rewarding and healing project. There have been so many times that I felt helpless, and that everything was totally out of my control. To have a greater purpose and an outward focus has really helped. To know that I am doing something for the greater good, and that will potentially help children and families in the future is powerful. I don’t have to just sit and twiddle my thumbs, I can be proactive in finding a solution, and being a voice for children who may not.
If you’ve ever found yourself thinking or saying, ‘I wish there was something I could do to help’, there is. You can donate blood, you can host a fundraiser or attend one, or donate money to a charity like The Kids’ Cancer Project. Children like Evie, her friends who have battled or are still battling cancer deserve a cure. They are worth fighting for.
Weir Family with TKCP founder Col Reynolds at a Candlelight vigil at Sydney Opera House for Childhood Cancer Awareness Month Sept 2017. Photo credit: Monde Photography
The beauty of innocence
When a child has cancer they don’t ask ‘why me?’, they live innocently and sometimes they dance.