2 Years in Remission; Insights into Life Beyond Childhood Cancer Treatment

Writing about Caroline’s cancer has been tricky for the last a year or so. I’ve been struggling with a focus for the entire blog actually, and processing and writing more about her cancer treatment has been hard for both me and Caroline (and Otto too it seems!)

Cancer Charity Commitments

We did quite a bit for children’s cancer charities in 2019, including (in true Kids of the Wild outdoor-style) a 3-mile charity run for the North of England Children’s Cancer Research Fund. Caroline helped open the race by firing the starter gun, completed the course and raised over £2000 for an exceptionally worthy cause. I was blown away that she was fit enough to take part and an incredibly proud Wild Mummy!

Later in the year we were asked to talk at a legacy donor event for Children with Cancer UK, who, amongst many other research and fundraising projects, sponsor the Beads of Courage cancer programme, which continues to be a real source of comfort and achievement for Caroline. It was quite emotional, discussing diagnosis and treatment as well as showing all of Caroline’s beads to the potential donors. A full post will hopefully follow soon.

We also received tickets to visit the Children with Cancer garden at BBC Gardener’s World show at the NEC, Birmingham. We were unable to attend in the end but Wild Grandma went and I will be doing a brief post on that soon, too.

I was also commissioned by The Sunday Times newspaper to write an article about Caroline’s cancer journey, my first ever commission! You should be able to access the online article using this link.

Now in 2020 it’s about time a new post went out!

I wrote this one last October, a little while after Caroline’s 2 year anniversary of being in remission. We’re planning more cancer posts fairly soon and I thought I’d get this out there in the meantime. Back to October 2019…

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I knew today was going to be special. There was the most stunning sunrise over the sea, surely too beautiful to be a shepherd’s warning? Though the clouds are building from the east as I write…

Caroline and I could just see the sun come up over the sea, almost hidden behind the disrobing trees at the bottom of the garden. The photos of course do no justice to such an uplifting start to the day.

After the school run I took a restorative walk on the beach alongside a barely wakeful, silent sea that listlessly deposited an occasional gentle wave onto the sand just to remind me it was morning.

A pair of Typhoons (the aircraft variety, not the wind!) appeared from across the North Sea – not a regular sight round here – causing several squadrons of migrating geese to do a smart wheel about before returning to their original path. Fascinating to see nature adapting to man, all with the backdrop of the enchanting Dunstanburgh castle – what a day to forget my camera.

And since then I’ve spent quite a while crying!

Childhood Cancer Sucks

I didn’t write a post celebrating Caroline’s 2 years in remission last week, October 18^th, as I was still reeling from the death of a gorgeous 12 year old friend, Layla, in Canada, who battled the same tumour as Caroline, Rhabdomyosarcoma (RMS), for a year.

We have never met Layla nor her family but have followed her journey since her Mum contacted me through Kids of the Wild last year. Her funeral was on October 10^th. I can only imagine her parents’ grief. My love and prayers go out to them.

As a parent of a child who has fought cancer it is devastating to hear that another young life has been lost to the disease.

2 Years in Remission

That’s not to say we didn’t celebrate the amazing date that marks Caroline having been in remission for TWO WHOLE YEARS – it’s an incredible achievement. We had a takeaway meal and a family night in at Caroline’s request. We didn’t really think or talk about cancer to be honest, just enjoyed the time and the moments together.

The real reason I am writing today is because a close friend just messaged me some extraordinary news. I’ve been bawling my eyes out ever since, proper deep-rooted, body-shaking, soul-cleansing sobs.

One Vocal Chord

Here’s the news: Nana Mouskouri was born with only one vocal chord.

Yes, that’s why I’ve been crying!

If you’ve not heard of Nana Mouskouri, she’s an inspirational Greek singer who has sold around 300 million records in 15 different languages. All with only one vocal chord, which may even have shaped the sound of the beautiful soprano voice she has made famous. How amazing is that?!

So I cried because..?

Cancer paralysed Caroline’s left vocal chord.

There was nothing to be done about it, they didn’t expect her voice to recover at all so it’s been another of the miracles of her recovery that she can speak as well as she does, and sing too – she’s having lessons at school and is in the school choir.

Humans only have two vocal chords so I worry constantly about what will happen if the other gets damaged, from a cough, cold, shouting too much during football or even whispering too much, apparently. Doing the daily voice exercises can be a challenge too as my repetitive nagging reminds Caroline that she’s now ‘different’ to other children in having to take extra care of her voice.

Stuffing Parental Emotions

Discovering that an internationally renowned singer, now in her eighties, has lived and sung her way through life with only on vocal chord was such a beacon of hope that it brought tears. And once crying, I couldn’t stop.

It’s made me realise how much fear and emotion we parents stuff away without realising, as we carry on with life after cancer while forever in its shadow. How, even when we think we’re in control of our feelings, there are massive undercurrents we ignore and suppress. I’m so glad I cried and let it out in the open, even if it was only witnessed by the dog and cat!

Thank You For The Music

Between Caroline’s biopsy and the news of her diagnosis we were allowed home for the weekend. In an effort to lighten our mood I got out my guitar to play and sing. Caroline joined in – we have it on video which perhaps one day I will post online.

I remember choking out the words with tears in my eyes as that beautiful little 7-year old, with the biopsy wound raw in her mouth, bravely squeaked and croaked through 3 songs with me, while Wild Daddy and my parents choked back tears too.

We knew then that there was a possibility her voice would not return so it felt like it could be the last time we’d hear her singing out loud.

In fact her voice got worse during treatment and nobody really knows how it has recovered.

Music is a huge part of life for me – my brother is a professional musician, one sister a music teacher and the other a self-taught singer and guitarist – and as a family we love having a sing-song when we get together. I am eternally grateful that Caroline’s voice has recovered sufficiently for her to be able to learn to sing again, and also to a great friend for imparting the news that gives me such great hope; that with the right support there’s no reason to think Caroline can’t enjoy a life of singing, music and chatting just like the rest of us.

Thanks, Nick for passing on the message of hope (even if it did make me bawl for ages!)

Thanks Nana Mouskouri for the songs and inspiration.

Thank you God for the power of healing, the music, the chance Caroline has been given to live a life to the fullest she possibly can.

And mighty strength and courage to parents of children with cancer and serious illness, and all parents everywhere, who stuff our worries and fears on a daily basis so we can model to our children a life of vitality, fun and adventure.

Wild wishes to you all x

Reach Out for Support

If your child has been diagnosed with cancer, or anyone you know has been affected and is looking for support, help or information, PLEASE don’t hesitate to reach out and get in touch with me – you can use the contact form on the website or message me via Facebook at Kids of the Wild and I will respond personally and confidentially.

To read Caroline’s cancer journey from the start back in 2017, go to the Caroline’s Rainbow section on the website.