On the one year anniversary of her son Tyde’s cancer diagnosis, Ashleigh Wheatley shares her family’s story so far.
On this day one year ago our lives changed FOREVER! It was a nightmare, a nightmare I never woke up from. A fear that I will live with for the rest of my life. A fear that will always haunt me.
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One blood test and one phone call and within hours we were in Randwick Sydney Children’s Hospital.
On this same day we met our oncologist who told us exactly what was going on and what we were in for.
To be honest I don’t remember this conversation. It was a blur. My eyes were so sore from crying, it was late, or very early, I had no idea. I was exhausted.
Tyde had just spent the whole time screaming in the ambulance. Tyde was asleep and Ross and I were looking at each other and had no idea what was going on.
Already Tyde had so many needles that we held him down for. I didn’t understand why we had to hold my baby down while all these people stood around him hurting him.
I remember a few times I told them to stop, that’s enough. I wanted to pick him up and run and never look back. The fear in his eyes was horrible. This is when I knew we were in really big trouble!
The next day we had a huge meeting with doctors who were talking about days like: so on day 79 this happens, and day 105 this happens. I didn’t understand any of it.
The only question I kept asking is: “Is my baby going die?” And I never got an answer. I still ask that question, I also still never get an answer.
Day 8 was going to determine which path we were going to take. A six-month treatment or a 12-month high-intense treatment, which we only had a 10 per cent chance of getting and which dropped his survival rate another 20 per cent. Well that’s what we got given.
I remember Tyde waking up from getting his central line in. I was shaking, crying I had the worst anxiety. It just all hit me - our son has CANCER! I couldn’t stop throwing up.
I also realised on this day that there’s nothing we can do about it. The nurses got me to lay down in recovery because I felt like I was going to have a heart attack ... turns out I was just having a panic attack.
We spent so many weeks in hospital where I met my new family – the nurses, children, doctors, parents – and we have this crazy bond that I can’t even explain we share.
Without even talking about our children, we could just speak about the weather, or where is good to eat. Anything but. We are always there for each other.
We have met some amazing people who will be part of our lives forever. We also lost some amazing children, which makes me so angry, sad, lost at the world that these poor kids have gone.
I don’t understand any of it. How God can take away the lives of these innocent children and then leave their families here to grieve and somehow get through each day, I will never understand.
I can’t count the amount of times people would tell me I need a break and to get some rest and to go home for a couple of nights. You just think about these families and how unfair and unpredictable life is and I kept telling others that I will get a break when my child does.
I never expect others to fully understand and it’s all coming from a good place, however that’s why it was good having these other families, who are in the exact same boat and feel exactly how you feel.
Life before having a child with cancer was free. We could go on holidays, go to the shops, go to parks - even just going to get some groceries there wasn’t a care in the world. Now sometimes we can’t go to these places.
Life is completely different forever. It is our new normal. I don’t expect people to understand or people to get it. Sometimes it’s hard to explain to others how you feel so you just step away from everyone when things get too tough for a little while to regroup. Sometimes I may seem distant. I’m always here, I’m just taking some time out to process everything, and think about how I’m going to live this new “normal” life.
I have had to explain to my five-year-old daughter that her little brother has cancer. She asks me, “Is he going to be okay?” I always say, “Of course he is.” I say this because I don’t want her to feel the fear we live in every day. With uncertainty. And the uncertainty that things can change very quickly. I also had to explain to her that she is a bone marrow match for him if we need to go down that path.
We have spent months away from my girls in the last 12 months. Time we will never get back. We spend months sitting in a hospital chair watching poison fill our son’s body, which makes his so sick, but at the same time is saving his life.
What do we do? What choice do we have? I wonder if he understands that I don’t want to do it as much as he does or if he wonders why I take him to this place to make him feel like this. Why his sisters, friends, other kids get to play outside and go to school.
The amount of medication my son has been given over the past 12 months has been more than I’ve seen at a chemist. We are almost at the end of the intense stage. I have learnt that, although this is very exciting, I don’t ever get my hopes up too much because we could be let down at any time.
So we just go with it now. We be grateful we are given today with each other. We get told where to be on what day and we just do it.
I still cannot believe my child has cancer. It took me a little while to use that word. Even now It takes a few seconds to come out of my mouth. You always hear about stories or see them on the news, but you never think it could be you.
We don’t know what the future holds. We didn’t come here 1 week, 2 weeks, 2 months; it’s been 12 long, hard months. But we are still here fighting.
There will be fear forever, it’s the unknown. We don’t know if Tyde can have children, if he will be traumatised forever, if his fine and gross motor skills and physical skills will recover.
The future is uncertain. I’m completely lost. Not long before Tyde’s diagnosis his dad was in a horrible work accident where he is still unable to work. And still lives in chronic pain. My beautiful niece passed away at just six years old. We miss her each and everyday and Tyde is the luckiest little boy to have her as his guardian angel looking over him every minute of everyday.
Life is just so unfair. You really don’t know what’s around the corner. We were just an ordinary family doing everyday things. Let this be a lesson. Don’t take things for granted. Don’t worry about the small things in life because one day you may wish you could just worry about them again. Enjoy time with loved ones as you never know how long you have. Wake up each and everyday grateful for the things you have in your life.
I don’t want people to feel sorry for us and be upset for us and what we are going through. I simply share this story because I want others to look at their families and be grateful and enjoy life with their families. Give your kids extra kisses.
Some people say I’m strong. I don’t believe that. I believe I have no other choice, so we just do what needs to be done. We will keep fighting each and every day, which is why we need to thank each and everyone of you.
THANK YOU all for continuing to support us. For the messages, calls, help, fundraisers, friendships, Thank you to the people who have always been in our lives and the people we have come across along our journey. I wasn’t sure if I wanted to share our journey in the beginning, but looking back at all the support, it’s you all who get us through each and every day. I will forever be grateful.
Our journey isn’t over. This day is just a beautiful milestone. We love you all and I want to thank all the doctors, nurses, families and each and every one of you. There are too many people to thank. You are all wonderful and I will never get around to thanking each and every one of you but please know we appreciate you all and love you all. Stay on this journey with us, it’s you who help us through. This time next year Tyde is going to ring that bell. Bring on another 12 months …
Follow Tyde’s progress on the Facebook page Tuff Tyde.