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Article What childhood cancer taught me

By Kate Shelby
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22 Comments

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.

Image courtesy of Shutterstock.com

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Comments

  • Cancer sucks big time no matter what age you are. It touches not only the person with the cancer but all their loved ones as well.

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  • I can’t imagine anything worse than watching a child suffer from cancer. It must be unbearable for parents.

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  • That is a very touching story, thank you for sharing.

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  • Thanks for sharing your heartfelt story Kate, it brought tears to my eyes reading and recalling seeing so many young fighting for their lives. I too wonder why some are chosen to stay and some are chosen to fly.
    Our family circle lost a young one to cancer and I hope and pray that soon a cure will be discovered.
    Wishing you and your son love, strength and continued good health. xx

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  • Thanks for telling us your story – and pleased your son survived all that nature could throw at him. As you say there is always someone worse off than we are, even though at our darkest moments we don’t believe it. Had a few very minor scares in comparison to yours with my kids, but there was always someone worse off. You write wonderfully, by the way.

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  • I wish you and your son well and may he continue to recover steadily and healthily. It’s tough going through sickness with your children, but especially and more so without the support of a solid husband, father and partner to stand with you. May the Lord give you courage and strength to cherish and walk through this situation with your beloved son. I wish you both blessing, strength and hope.

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  • I can’t even imagine :( We had a couple of short stints in hospital when my son was a baby and a toddler and that was stressful and difficult. Nothing compared to this though.

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  • A tragedy that so many lives are lost to this cruel disease. Some little ones never experience a normal baby’s life. They are unable to express themselves to tell us how they are feeling, where the pain is so diagnosis takes so much longer. Palliative care is a wonderful service. They have very supportive people, often volunteers directly involved in the treatment and care of the patient and families affected. I hope you son lives a healthy life following successful treatment.

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  • What a terrifying experience for you both. So glad it had a happy ending. Although I shed a tear for the poor grandmother

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  • What a big battle that your son and your all family had to face. I’m glad he won. I can’t even imagine how terrifying those periods in hospital were. And how bad you felt when that teenager died. Too many parents still lose their kids to cancer. I really hope that in a near future fighting cancer will be as simple as fighting a flu.

    • Yes that would be a dream come true wouldn’t it. Unfortunately I believe cancer could be treated more successfully IF there wasn’t so much red tape and politics involved. But that’s a discussion for another day. One day we might win the war on cancer but we all have to stand together :)

      • Absolutely! :-)

      • I agree with you on that one. Standing together would make a huge difference.
        All the very best for you and your Son’s future Kate and thank you for sharing your inspiring story….definitely a great reminder to be grateful for every minute we have with our loved ones

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  • We’ve faced similar situations, and I have to say that “someone has it worse” feels like what you say to people who don’t know what to say to you – it lets them off the hook. It might be true, but it’s got absolutely thing to do with how hard it is when you’re in the middle of your fight.

    • Personally I think its probably subjective. I’m saying this to myself. Its not for people say to me.

      This article is about what I have l have learnt through the experience and although I continue to have hardships with my child’s health I can still count my blessings.

      It is not to bring down what I have been through or ignore the past completely. Its part of moving on and focusing on what I have and not what we have been through.

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  • What a great message.

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  • A very well written article. I’m so glad your son made it. Life is precious and every second cannot be taken for granted. Everyday I wake up and am grateful for everything and everyone I have in my life. I know I am lucky and I do (sometimes to her annoyance) hug and kiss my daughter when the mood strikes (and it strikes often!)

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  • Thank you for sharing your story. I am so happy your son battled through.

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  • Thts so sad and upsettig, cherish our children

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  • Thank you for sharing your story.
    Things like that certainly do change you.
    I’m so glad your son survived

    Reply
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