The cruelest disease

The day I was told that our son has cancer is a day that will never be forgotten. For us, this day was Sunday 28th January 2018 at approximately 1pm. I remember the word “leukaemia” so clearly like it was only yesterday. It was that word said, almost 12 months ago that shattered the life we had previously known, never to be the same again.

Lochlan was diagnosed with Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia Ph+ ALL. At the time we had no idea the enormity of what this diagnosis carried, nor did we realise how difficult the next 12 months would be.

Seeing Lochie endure the pain that this cancer inflicted on him has been brutal hell, the feeling of utter despair that I could not take the pain away from him was unbearable. I could not protect him from this monster that had consumed his little body and it went against all that I knew as a mother.

In the early months I was in shock, I did not really understand the how and the why of it all. I questioned many times in my head was it something that I did or didn’t do? Was this my fault? Of course, I know that none of what Lochie has endured is my fault, however these questions would always somehow creep into my mind as I felt and still do feel that it is my job as a mother to protect my children and somehow in this instance, I felt like I had failed.

Absolutely nothing could prepare us for childhood cancer, you are told from day one to take each day as it comes and we had to ride each and every wave that continued to knock us down every few days, for us a lot of the past 12 months felt like it was one step forward two steps back.

Lochlan’s cancer is high risk, he had CNS (central nervous system) involvement so therefore the treatment plan (protocol) has been aggressive from day one. He has endured months of high dose chemotherapy, weeks of radiation therapy, numerous CT, PET, MRI scans, bone marrow aspirates, lumbar punctures, ultrasounds, x-rays, blood and platelet transfusions, electrocardiogram’s (ECG), the list goes on. There were times when he needed assistance to stand in the shower and other times assistance to breathe. We were told twice that Lochie would need a bone marrow transplant but with no donor it was decided it was safer to continue with treatment. And just recently we were informed that Lochie carries a mutation that indicated a high chance of relapse.

<<Big sigh>>

So, after the most difficult 12 months of my life and faced with such adversity, I reflect on the person I was and the person I am now, I look at how this has not only affected our life as a family but the lives of the ones nearest and dearest to us.  I look at the incredible friendships I have made along the way and all that I have learned in the world of cancer.

 I am incredibly grateful for what I have achieved with the start-up of Little Big Steps alongside another driven cancer mum and dearest friend Cindy. Having something positive come from such hardship has given me the opportunity to focus some energy into helping not only my own child but others affected by this horrible disease. All taking small steps to big change.

I look at the beautifully resilient brave soul that is my son Lochan, and I am full of pride. He has grown more compassionate and has more empathy than any 8-year-old boy should. As hard as it is to think, given we are still very much on the cancer road, I know that his future will be full of brightness and he will be one day free, living the normal life he so much deserves.

As we continue to adjust to our ‘new normal’ without any knowledge of what our future holds, the trauma of this past year that has been etched into my soul although may fade overtime, will never ever be truly free and that’s ok because I have hope.

We are not heroes, we are not strong, we are simply parents who love our children more than life itself and would do absolutely anything for them.

Parents who burst into tears at Williamstown beach as we watched the smile on Lochie’s face as he took his first swim in 12 months.

 

 

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Cassandra Howcroft