Let me tell you a little bit about myself and my experience with childhood cancer. I’m Kate. In my late 20’s I gave birth to a son. Ryan was born healthy on the outside but within a few months the diagnosis was a rare tumor around 5 x 4cm spreading around the outside of the skull.
The intradural tumor had grown into the eardrum and cut off some of the nerves around his eye which initially presented as a possible internal infection. Sadly it was not that simple and an MRI revealed the monster growing inside my son’s head. During chemotherapy another growth presented itself inside the brain and it felt like the world was crumbling around me.
There are a few things I have learnt during time spent in and out of hospitals dealing with the possibility I would lose my son. Things I may have taken for granted before.
“Somebody else always has it worse”
Sometimes we pity ourselves and we think the world is out to get us. It’s human nature. My mum often jokes that I “Must have killed someone” because I truly have had my share of bad luck. But really if I face reality – I’m actually very lucky to be here at all.
I’ll never forget one night I couldn’t sleep and in the corridor of the ward at the Melbourne Children Hospital I got talking to a grandmother caring for her grandson. The boy – 13 years old – didn’t have a mother to speak of because she chose drugs over her son.
As if that wasn’t bad enough he had neuroblastoma – a deadly cancer. She explained to me that an infection had travelled to his chest and he was not doing very well. I wished her the best and I said even though I’m not religious I will pray to whoever is listening for our kids.
I made my way back to my son’s room where he slept wrapped up in bandages after a surgical biopsy. I had requested a bed so I could sleep with him because any night could have been the last and I wanted to be beside my son. Sometimes I lay awake most of the night terrified that I would miss his last breath.
The next afternoon I went looking for the grandmother to take her some decent coffee. Her grandson’s room was empty and she was nowhere to be found. He had died overnight. The room almost like someone had checked out of a hotel ready for the next person to arrive. Childhood cancer. You Monster.
This made reality even more real. The saying “Reality bites” is an understatement. It burnt. It felt like a knife through my chest. I thought of that grandmother going home alone and realised my life was nothing without my son. What would I return to? Would he be next? My pregnancy was unexpected and my relationship was nothing but broken pieces waiting for me to officially sweep up and put in the bin. He was the only thing in life that I felt so close to that I couldn’t live without.
I felt lost. No doctor would give me a shred of optimism because short of saying “Your son is going to die” they may as well have said “Your son is going to die.” Palliative care had come into my room within the first two weeks to sign the paperwork in preparation for death. This is just the way the process goes when you have a sick child with an uncertain future.
“Someone else always has it worse”
Two years later I was watching my son walk and start to talk, he survived. It wasn’t easy and not without sacrifice but in comparison to what I have seen in that ward and just life in general someone always suffers worse. I have taken this with me and although I reserve the right to complain about even the most insignificant things in the back of my mind I continue to remind myself somebody out there is suffering right now far more than I am.
I’m not going to say I’ve become a deeply humble person or a spiritual person. But watching your own flesh and blood go through what he did and witness people lose their own children around you is a game changer. It has the ability to completely change a person.
I revisit my story this morning after the news that a friend through social media lost his daughter on Monday. A mother and a father lost their child on Mother’s Day. While the world carried on buying cards and flowers a mother cradles her daughter after the battle is finally lost. Not without a fight. It leaves me questioning why some are chosen to stay and some are left to fly.
I don’t write this as if we should all be happy all the time. I reserve to right to complain about motherhood as much as the next person. But I do reflect on how lucky I am equally as much. Hold your children tight and kiss them twice tonight.
This article is dedicated to my children who I would be empty without them in my life.
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