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Maintenance – and childhood cancer awareness

September is the International Childhood Cancer Awareness Month. It also marks one year since Alistair was diagnosed with leukaemia.

As mentioned before, Alistair has entered the maintenance phase. His hair is now growing back, his strength is coming back, and his life is slowly going back to normal (or as normal as it can be).

He’s started attending childcare again, and is very excited about starting school next year. Lots of cheekiness and laughter from him every day.

I can’t describe how that makes me feel – seeing him play and run around and gain weight and eat and laugh… All these things that we once took for granted, now I’m so grateful for.

As his treatment is less intense, hospital trips have vastly reduced too. (Except for when he’s unwell. Then we’d still need to take him to the hospital ASAP and he’d be hospitalised for monitoring and treatment.)

Finally, it feels like we have the time and space to breathe and relax just a little.

And yet. And yet.

After bulldozing through the last 12 months with adrenaline and determination, it seems as though the waves are catching up on me right now.

My soul is weary. My heart is battered. And my mind… My mind is constantly in a battle.

Every day, I have to take every thought captive. To not let my mind wander into the realm of negative ‘what ifs’.

Every day, I have to keep my eyes above, to put my trust in Him who holds everything in His hands. To believe. To surrender.

Every day, I have to remind myself to focus on hope, and peace, and joy.

And yet. And yet.

Sometimes when I look at how cheerful Alistair is, I have to hold back tears. How strong this little man is. How strong he has had to be.

When he asks me when can his port be removed from his body. Or when he nonchalantly tells people he’s got ‘wonky white cells’ in his body. Or when Amy announces that she hates leukaemia.

I swallow the lump in my throat.

When I feed him his meds every day. When we plan for holidays and I have to first search out the nearest hospital, just in case. When I have to manage the kids’ expectations, because our holidays could be cancelled any time, depending on Alistair’s condition.

It’s true that this phase is less intense. Alistair’s bloods are not expected to crash as low as they did in previous phases. His body is relatively stronger. We’re all happier.

And yet. And yet.

When everything seems and feels normal, I would be gripped by sudden memories that remind me, we are not normal.

Alistair is still undergoing active chemotherapy treatment. We are still believing for and proclaiming his complete recovery.

And for the rest of his life, he will remain under close observation and monitoring.

That’s the reality of childhood cancer.

And yet. And yet.

We have gone through the last 12 months of hell – and lived.

As a family, we have fought so many battles. Some together. Some against each other. But in the end, our bonds have strengthened.

So many victories to celebrate. So many moments to be grateful for.

So many things on my mind.

And it’s not just about Alistair. There’s also Amy.

My beautiful, growing-too-fast Amy. Who has been sidelined way too many times because of her little brother’s condition. Who has been expected to grow up quickly and be understanding. Who has stepped up and accepted situations way more bravely and maturely than any 8-year-olds should be.

And then, deep within me, still that little voice of my own desires whispers: What about me? What about my dreams? My plans? My goals?

Followed by a quick slap from my mind: How selfish am I? That I could even think about what I want, when my own flesh and blood needs my all?

But even if I want to answer the siren call of my heart… how do I do it?

All I feel is exhaustion – mind, body, soul. My energy and passion seem to have depleted.

I am tired.

Every day, my mind is a battlefield. My heart swells in love and beats with joy almost as often as it crushes with pain and squeezes in fear.

And yet. And yet.

We are called to more than this. We are meant to do more than just survive.

God has given us life, so that we might have it more abundantly.

For us to live not with a spirit of fear, but of power and of love and of a sound mind.

The battle continues. But I shall not yield.

I pause. I breathe.

I rest. I give thanks.

And then, I move forward. One (small) step at a time.

 

Before I go…

I feel obliged to say that, despite this being a somewhat depressing post, the atmosphere in our house is not all bleak and gloom and doom. Quite the opposite, in fact.

There’s a lot of silliness and laughter and fun (and scolding and eye-rolling and exasperation). Sometimes tears. Sometimes fear. But overall, we’re doing well. ❤️

In all honesty, I struggled a bit on whether or not I should write this post. But, seeing it is Childhood Cancer Awareness Month, I wanted to share a little about what we go through, as a family with a child diagnosed with cancer.

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2 Comments

  • Reply Chek Hui

    Dear Natalie, thank you for the post. Hugs. There are so many emotions going on. It seems that the alert mode is always on. You think there isn’t a moment you should relax. But you should, and you can 🙂 Thank you for sharing your struggles, and for showing us that in the midst of struggles and difficult circumstances, we can still hold on to hope in Christ. Will continue to keep you and your family in my prayers. Please take good care!

    September 26, 2022 at 12:54 pm
    • Reply Natalie Sia

      Hi Chek Hui, thank you for always keeping us in prayer through these years. I hope you and your family are well ❤️

      September 26, 2022 at 7:49 pm

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