Going Gold: Childhood Cancer Awareness
September is Childhood Cancer Awareness Month. The month that is dedicated to raising awareness, and much needed funds for childhood cancer. However, for many parents who have lived with their child having cancer, every month of every year is and will be childhood cancer awareness.
Life for our family has been the most ‘normal’ it has been in a very long time. We have enjoyed not visiting the hospital since her last scan, and slipping in to a routine that involves making school lunches, organising play dates and enjoying our weekends as a family. Evie has been sick a couple of times, battling temperatures and your average childhood sicknesses, such as throat infections and viruses. I still can’t help stressing when Evie gets a temp or is a little unwell. After almost three years of checking her temperature daily and having to take her in to hospital if it got to a certain temp, I can’t quite switch that off easily. I find myself going into slight panic mode, and second guessing myself. However, when we find out there’s a reason for the temperatures, there is a sigh of relief, even if that means she has a virus or a throat infection. Bizarre! Apart from the little hiccups with sickness, Evie has been great and loves going to Prep. Her class is doing their part for Childhood Cancer Awareness month by making and selling cupcakes next week. And our family, with the help of some special friends and generous people, are hosting our second ‘High Tea for a High Cause’ to raise money for The Kids’ Cancer Project. It’s going to be a beautiful day and we are looking forward to it. If you want to find out more about the event, or book tickets, you can visit our website. www.highteaforahighcause.com.au
We were also very honoured to be invited to an event held at Government House last week. It was an official launch of Childhood Cancer Awareness Month by the Governor of NSW. As much as I would never want to live through what we have had to with Evie having cancer, we have been offered some opportunities that as a family we never would have experienced. In honour of Childhood Cancer Awareness Month, I really wanted to share a few things that I have become aware of in the past three years.
Cancer does not discriminate. I remember one of the first things Evie’s Doctor said to us was that it was nothing that we had done that had caused Evie to become sick.Childhood cancer is not like cancer in adults. There is no known prevention. There are no known causes for Neuroblastoma. Research has shown that it does not discriminate between gender, race, socioeconomics, 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.
Children with cancer need multiple 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: 31st 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.
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, with bald heads, often have a bit of a grey skin tone, some are really skinny, or 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, that 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’s 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.
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.
The 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 sometimes 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 are spending your days sitting in a square box of a room, bumping into another mum or dad whilst making a cuppa and having a quick chat is your sanity. 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 at night beside your sick child, or comforting them while they are sick throughout the night. 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.
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 longterm 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 you have 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 you. 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.
Children die from cancer. This is a very harsh awareness, and unfortunately I know personally that this is all too true. We are very lucky and grateful that Evie is still with us, however, we have seen children we have grown to know and love during our time in hospital pass away. Although I can only imagine, and have imagined, what those parents feel like, I know that it would have to be one of the most excruciating things to have happen to you. That September and every day of every month will be the awareness that cancer stole their baby. I want to honour those children who have passed away. It’s not because they didn’t fight hard enough, or their parents did not do everything they could. I know that firsthand! I wish we knew why, but all I can say is I will never forget them, and they are a big reason as to why I will always try to raise awareness and funds.
Fundraising and research is vital. I have never fundraised for money personally, but I am very proud to say that since Evie was diagnosed, we have raised over $35 000 for Neuroblastoma Australia, and $15 000 for The Kids’ Cancer Project, with our High Tea fundraiser on in a couple of weeks. I have found fundraising to be a very rewarding and healing project. There have been so many times that I have 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.
So, if you have ever found yourself thinking or saying, ‘I wish there was something I could do to help’, there is. You can donate blood, you can run a fundraiser or attend one, or donate money to a charity like The Kids’ Cancer Project. You can buy a gold ribbon and wear it to raise awareness and start up a conversation with people. Children like Evie and her friends who have battled or are battling cancer deserve a cure. They are worth fighting for.