Life As We Know It

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I am acutely aware that a launched this big grenade into the blogosphere and told you about Sam’s diagnosis, but haven’t followed up with how he’s going. How we’re all going. So this is it. Part II. (Warning: you may need a packed lunch before you read this one. Sorry)

It’s now been nearly four months since Sam was diagnosed with Leukaemia, and it’s a little hard to remember what life was like beforehand. I find it amazing how resilient the human spirit is, how quickly we adjust to the ‘new normal’.

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After Sam spent the first two weeks in hospital, being poked and prodded and tested, we we were advised that he apparently has one of the ‘better’ types of Leukaemia and his course of treatment will take three years. My understanding is that all the research to date has revealed that lower doses of chemotherapy can be used over a longer period of time to treat this particular strand of ALL, therefore reducing the impact of side effects whilst still achieving excellent cure rates.

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The first month of treatment, known as ‘Induction’, gave us a baptism of fire and we quickly learnt the ins and outs of hospital visits, added many big medical terms to our vocabulary and discovered how to negotiate with a five year old about ingesting foul tasting medication on a very regular basis. At the end of a difficult month, we were beyond ecstatic to learn that Sam is now officially in remission (hooray!) and there were no Leukaemia cells detected in his bone marrow. We realize we have a long journey ahead and if we ceased treatment now the Leukaemia would return, but achieving remission after the first month is one major milestone achieved and we were so so relieved to receive that news.DSC_4372

Some treatment blocks have involved being up at the hospital a couple of times per week, weekly lumbar punctures under general anaesthetic and having to take various medication daily at home. Other phases have meant appointments with our Oncologist every 10 days, some IV chemotherapy on day visits to hospital and minimal medication at home, which can feel like a veritable holiday after more intense phases. Right now, we’re enjoying a quiet phase before another intense one begins in mid-January.

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On so many levels, Sam has responded unbelievably well to this major shift in his life. In the first month, his steroid-induced weight rose rapidly and his face shape changed, his hunger was relentless, he was quite immobile and often highly emotional, and that was really difficult to watch. There were days where I couldn’t really remember what he was like before the diagnosis. But, even through what must have been an incredibly difficult time for him, he was usually pretty happy and calm. These days, he’s looking so healthy and is more like ‘himself’ again, with an added dose of wisdom and resilience thrown in. It’s not uncommon to see him preparing his own medication (supervised, of course 😉 ) or hear him discussing upcoming medical procedures with impressive maturity. SuperSam amazes us on a daily basis, and even more so when we remember he’s only five.

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Our journey with Leukaemia would probably be considered quite smooth so far. Sam has been responding well to treatment, he appears healthy and happy and the prognosis for curing his Leukaemia altogether is great (95+%, according to our Oncologist). We have a stable (well, most of the time 😉 ) family unit, we are financially comfortable and we are well supported by an amazing village of friends and family. When we sit with the families also undergoing treatment at the hospital and hear their stories, I know that we are amongst the lucky ones. And I count each and every one of my blessings.DSC_4082

So I’m finding it difficult to admit that, to be honest, lately it’s been hard. I think after the initial devastation on hearing the news, we swung into action, put one foot in front of the other and launched into the new normal. We have survived on adrenaline and the food, babysitting services and love of the amazing village around us and, most days, have coped remarkably well. Whether it be tiredness or the end of the year or Christmas time or my-son-has-a-life-threatening-illness or all of the above, the very raw, very real emotions are very close to the surface at the moment and it doesn’t take much for me to get teary…when I’m not putting on my ‘woman of steel’ mask. It’s not uncommon to find myself in a social setting, desperately hoping no one asks me how I am for fear I may implode.

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We have lost our innocence. From now on, no fever is just a fever, no bruise is just a bruise, everything has a potentially sinister undertone. I look at how far we’ve come since September and I’m proud of the journey we’ve trudged so far. But some days I look ahead and realize how far we have yet to travel and it feels so overwhelming.

What I slowly coming to terms with is that, while I’m incredibly grateful for how relatively ‘easy’ we’ve had it so far, it’s never easy facing the potential mortality of your own child. As a parent, I think we all harbour fears about losing a child. We panic when our baby sleeps through for the first time, despite being overjoyed that we had our first full night of sleep in months. But we tuck our fears away somewhere in a dark corner, hoping they will never become our reality, that we will never be ‘that family’. While I am incredibly grateful that I still get to cuddle my beautiful boy every day when many parents aren’t that lucky, even this close to the harsh reality of losing him is far too close for comfort. I don’t want to hoard his kindy artwork, wondering whether one day it will be as close as I’ll be to having him with me. I don’t want to picture any part of my future without him in it.DSC_4406

This is not a cry for help or a pity-party. It’s just how it is, and I know these feelings will ebb and flow over time. I am okay, we are okay. Thank you for sharing the ups and downs of this journey with us and holding space for me while I find my way through darker moments.

“May we all learn that pain is not the end of the journey, and neither is delight. We can hold them both – indeed hold it all – at the same time, remembering that everything in these quixotic, unpredictable, unsettled and unsettling, exhilarating and heart-stirring times is a doorway to awakening in our sacred world.” ~Pema Chödrön

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0 thoughts on “Life As We Know It

    1. I just thought of you and your little family of lovelies late last night wondering how you were going. Thank you for sharing where you are at currently, you amaze me beautiful lady!! Love and prayers to you all xx

  1. So glad to get this update – I’ve been praying for your family and often wondered how your little soldiers are doing – Thank you so much for the update on your little man. Our son, who also has Trisomy 21 – did fantastic for his open heart surgery in October. I was so scared, and it worked out, and in reading your post, it’s working out the best possible way. I hear what you said about losing your innocence, great way to put it. That’s exactly what it’s like when we’re forced to come toe to tow with our child’s mortality. Know we’re out here praying for you! -Julia : )

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