Sally's Story - Your Baby has Cancer

Sally's Story - Your Baby has Cancer
Sally has been a long time supporter of Mummy Matcher and when she reached out and said she was ready to share her story, I was humbled.

Sally is one of those “you do what ya gotta do” type of personalities. Has her first year of parenting been what she imagined? Hell NO. But has she let it define her and stop her from feeling joy in life’s most simple pleasures? Also HELL NO.

So here is the story from a Mum who has literally been through what can only be described as hell on earth. How she has survived that first tumultuous year of motherhood and how she will not let “a little cancer” get in the way of her enjoying her BEAUTIFUL baby boy.

Who was Sally before she became a Mum?

Sally was and I think still is just with different priorities a person who always needs to be busy and working towards something. I previously worked as a primary school teacher and most recently a kindy director which kept me very busy. I realise now the amount of time I spent either working or thinking about work was a little excessive, but I am a bit of a perfectionist when it comes to work. Very unlike my personal life which is often a shambles, I am unorganised, go with the flow and pretty unphased by most things.

What is something about motherhood that drives you bonkers?

The repetitiveness! I feel like I clean under the highchair 100 times a day and then I turn around and it’s covered in an inch of food again! I think it’s the sense of nothing is ever done, because as soon as you’ve completed one thing there are 100 new things to do and they are the same 100 things you did yesterday.

Since becoming a Mum, what is something about you that has changed which you actually love?

I have a new appreciation for life and everything in it, family, friends, freedom and and of course every moment with Vinny. We have watched families have everything taken away from them in the blink of an eye, we ourselves have had our world turned upside down in a matter of weeks. I now know how important it is to appreciate all the little things I once took for granted.

I have also learnt to look after myself by recognising when I need to step back and take a break. I am not an emotional person but have learnt over the past year that just because I’m not bawling my eyes out, it doesn’t mean I’m not dealing with big emotions. I’ve learnt to recognise my own emotional behaviours and be proactive in looking after myself. It can be as simple as taking some time to cook (without a baby at my legs), a long bath or even just a coffee. I also have reconnected with my love of writing and find that writing about what I am going through helps me process the jumble in my head.

Elephant in the room, your son Vinny is almost 12 months old and has cancer. Neuroblastoma to be exact. Can you tell us about those first few weeks of diagnosis as initially the treatment plan wasn’t what we are typically led to believe with cancer.

His diagnosis felt like it came in two parts, the first was his actual diagnosis which happened slowly over the course of a few weeks. We were never taken into a room and told ‘your child has cancer’ like many are, we had been through a series of tests and before each we were given a list of possibilities one always being ‘in very rare odd cases it may be cancer’.

We were eventually told he had a tumor called a Neuroblastoma, hearing the word tumor I didn’t even think cancer and we were told not to stress so we didn’t. When the doctor said he was transferring us to oncology it all hit me, the registrar working with him quickly realised what was going through my head and they went on to explain that its likely he would not need treatment and although its a cancer in young babies it often doesn’t behave like a typical cancer. This was the only night I hysterically cried myself to sleep, it seemed surreal that a tiny baby could have cancer, and it was difficult to comprehend that after this diagnosis we were just going to take him home and check on it again in another 2 weeks! We were back up at our local hospital two nights later because I couldn’t stop worrying, but slowly we have come to terms with his diagnosis and attempted to regain some sense of normality.

What felt like the second diagnosis came after his first lot of ‘routine monitoring’ which includes a MRI and urine samples. His MRI had come back looking great and we breathed a sigh of relief. A week later I woke up to feed Vinny in the middle of the night to see missed calls and emails from his oncologist, this was extremely frightening as doctors don’t call late at night to tell you everything is going well. I instantly knew that she was contacting us to let us know his urines indicated he needed treatment. Which they did and three days later we were in Adelaide preparing Vinny for chemotherapy. At this point survival mode kicked in and since we have just been taking it one day and one appointment at a time.

baby with central line
Vinny rocking his central line.

Were you ever told at any point that there was the possibility your baby wouldn’t survive?

No, right through his team of doctors have assured us that his case is very treatable.

Unfortunately if you google Neuroblastoma you will see very low survival rates but the survival rate varies drastically depend on age of diagnosis and different characteristics of the tumour. Neuroblastoma can be extremely aggressive in some cases and in others cause no harm at all and then regress on its own. Vinny sits somewhere towards the more ‘well behaved’ end as his doctor likes to call it and if it starts misbehaving again we have multiple treatment options we can explore.

What are 3 of the biggest myths/stereotypes of childhood cancer/being the mother of a child undergoing cancer treatment that you would like to dispel?

This is a tough one as I’ve encountered so many different views. I think the most frustrating thing for me was when people assumed he had been given a death sentence. Losing Vinny has never been something we have considered, and don’t want to. Having others say it out loud made that horrible possibility pop into my head and it is not something I wanted there!

What did your life look like whilst Vinny was undergoing treatment?

It still feels like a blur, we took it one day at a time. Life came in waves, Vinny was on three weekly cycles and we counted our days by these cycles. The first week was chemo week, these weeks we usually spent the entire week in and out of hospital whilst he had tests, transfusions and injections, the following week things would settle, and then the final week he would be at his lowest and require cuddles 24/7, more trips to the hospital for transfusions. Our favourite time was always the few days leading up to chemo as he started to recover and feel well again. I guess it was just a constant cycle of monitoring and treating his side effects and the few days in between we tried to regain as much normality as we could despite living 300kms from home and away from family and friends.

Every 6 weeks he had a MRI and urine tests, these were extremely anxious times as his treatment depended on these tests. Each time we would be holding our breath in hope it would bring the end of chemotherapy. He ended up requiring 6 cycles of chemotherapy which took around 6 months including a few breaks and then the period after waiting for his line removal.

It honestly felt like life stopped for 6 months and we went into this weird world of chemotherapy, now we have popped back out the other side like nothing but everything has changed.

Vinny still has cancer, he may have cancer for the rest of his life as this isn’t uncommon for neuroblastoma. How do you keep pushing through day by day?

We try not to let it rule our lives, he will require monitoring for the foreseeable future but what that will look like we don’t know. At this point it is likely he will have monitoring done every 3 months.

Now that we have seen chemotherapy work and seeing him thrive despite his cancer makes us relax a little. We have been through the hard yards of chemotherapy, we know we can do it and if we have to do it again we will.

baby with neuroblastoma

What would you say to other Mums in similar situations to you?

Just take it day by day. Reach out to other families who have been through similar circumstances. I was warned not to get too much into other children’s journeys because ‘every case is different’ and yes they are, but every time I am able to connect with someone who has some understanding it really does lighten the load.

And don’t forget to look after yourself too, you can’t give from an empty cup. I learnt this the hard way and burnt out on Mother’s Day which fell about a month into his treatment. I couldn’t look after Vinny. I was a mess because I hadn’t taken any time to myself. After that day I learnt in order to care for Vinny I first had to care for myself or I wouldn’t have anything to give him.

What's Next?

Sally is days away from launching her very own online and INCLUSIVE baby store called Vinny & Co.

Here is the website: https://vinnyandco.shop/

Instagram Handle – @vinnyandcoau

Inspired by Sally's story?
Perhaps you have a similar one?
Do you want to connect with other curveball Mamma's?

Head over to the Mummy Matcher Village Private FB Group, it's like the hug you didn't know you needed.

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