Thoughts on A Year with Childhood Cancer

Around 18 months ago, childhood cancer became an everyday part of motherhood for me, 6 months of it unknowingly when it was simply ‘a virus’. Today, March 06th 2018, is the one year anniversary of the dark day we learnt our daughter’s eventual cancer diagnosis, aged just seven.

Seven years old..? The thought of it makes me sick.

Innocent, vital and in that glorious phase of childhood when independence, self-confidence and inner beauty are blossoming.

A whole year in which childhood cancer has dominated our lives.

Even though my sweet Caroline, my firstborn and only child, is currently, miraculously, in remission, her cancer remains a silent spectre, always skulking to inflict a stab of worry, anguish or grief.

It’s impossible to define the changes cancer has wrought, many of them obvious but not all negative.

A Year in Providence

Last week my brother asked the date Caroline was first admitted to hospital for the ‘mumps’ blood tests. We realised it was a year ago to that very day, February 27th. The four following days in 2017 were filled with confusion, fear and dread, test after terrifying test for Caroline culminating in a traumatic biopsy through the roof of her mouth under general anaesthetic.

The same four days this year couldn’t have been more different – the journey from then to now is monumental. These photos say it all..

During tests and biopsy, 27/02 to 02/03 2017

Same dates, one year later..

What a difference a year makes!

I really believe we were in the hands of providence, as our ancestors might have put it, and I feel truly blessed that Caroline overcame and survived the experience.

Cancer Future – Side Effects & Symptoms

Caroline is in remission and long may it last.

She has 3-monthly MRI scans and chest X-rays until October to check for spread, then regularly after that for 4 more years, and she will have neurological tests annually to monitor cognitive damage from the radiation. She has many other side effects which may increase over time.

Her cancer side effects include a paralysed vocal chord where the tumour damaged the nerve. Whilst the remaining chord has somehow compensated Caroline can’t shout. Her diction is virtually normal, a miracle considering her voice was not expected to return at all and speech therapy starts in July to help protect the remaining chord. Her hearing was affected by the tumour but a recent test showed a complete recovery. She gets pain on swimming so uses an ear plug. Sharp shooting pains in the tumour area may reduce in time though could remain permanently. She also gets a numb tongue several times a day for which there is currently no known cause!

Chemotherapy caused nerve damage for which Caroline took painkillers for 11 months. She is now weaned from all drugs but still suffers regular sharp pains in nerves around her body, mostly the head. These should hopefully reduce over time but could also remain permanently for which painkillers would be re-instated if the pain is too debilitating. Her compromised immune system should now be functioning relatively normally again.

Radiotherapy affected a small part of the brain and may cause future infertility which will be monitored through puberty and treated with hormones if necessary. Radiation slows bone growth and blood supply so Caroline’s face may be assymetrical by her teens, requiring reconstructive surgery. We hope against hope that this will be as minimal as possible. She will require 3-6 monthly dental checks with a maxillo-facial dentist for the rest of her life to ensure teeth and jaws grow normally. We await a full radiotherapy report from the States to determine exact target areas in the head/brain and other side effects to watch for e.g. eye damage.

The central line is now out and her hair is growing back thick, silky (and slightly wavy!)

There is a possibility she has a genetic illness called Nerofibromatosis which predisposes sufferers to lumps and other symptoms. Tests are still ongoing. The initial blood test was negative (though only 95% conclusive) and an eye test yesterday for identifying ‘lisch nodules’ was also negative though these may not manifest until the 20s so we are no nearer a diagnosis. I’ll write more after a specialist meeting in April.

Caroline agreed for her story to be used to help raise awareness of childhood cancers for the charity Children With Cancer UK. You can read it and discover the charity at Caroline’s Story.

She also agreed to participate in a genetic research project for solid tumours where blood from all three of us is stored for future testing, as and when new cancer breakthroughs are made.

She’s slowly writing about her cancer journey from her beloved teddy’s point of view Otto the Bear

She constantly inspires me, not shying away from any of it. I am sometimes afraid.

Death at the Door

Cancer kills. It’s as simple as that. It no longer kills as many children as it used to but nevertheless it is a killer. Of children and adults. One of my best friends died from breast cancer during Caroline’s second round of chemotherapy. There is no more stark reality than that; a devastating year for both our families.

During this year Caroline has undergone some incredible feats of medical intervention and overcome a seemingly intolerable bodily onslaught to defeat the illness. She was of an age when death wasn’t her focus but for us parents, family and friends it was another matter. There was no way to escape the dark thoughts that flood the mind at every mention of the C-word when a loved one is battling it.

During this year she has experienced things she wouldn’t have were it not for cancer – travelling to America, meeting American celebrities, doing indoor skydiving, being team mascot and kicking penalties at Newcastle United Football Club, meeting Olympic softball gold medalists, being cancer ambassador at a charity ball and receiving a Brave Heart award for her courage, to list a few.

At Christmas my cousin asked my thoughts on the benefit of these activities. I replied that they distract the children, give them something to look forward to and go some way to ‘positivising’ their memories of cancer treatment.

What I didn’t say was that the fear of your child’s death makes you want them to experience as much life as possible, in case the worst happens…

With the potential for death on the horizon you want them to have as much enjoyment and pleasure as possible while they are suffering so terribly from the treatment as well as the illness. Fears you can’t voice to your child. Events you can do nothing to change.

When we learnt we were to have proton radiotherapy in America I spoke to our oncologist without Caroline, as to her prognosis. If she ‘might not make it’ then there was no way I would subject her to the stress and trauma of being dragged half way round the world, away from home, loved ones and her dog for 10 weeks. If she were dying we would have a wonderful last few months at home. But proton radiotherapy is the best in the world and on an inoperable tumour it was our best chance of a cure.

So yes, all that ‘stuff’ she did, much of it organised and offered by others, was a form of protection in case those were the last few months of her life with us. We made memories, we shared experiences, we were together, we smiled when we could, we cried when we needed. And in a massive way, that we didn’t guess at the time, it helped Caroline stay positive and get through her ordeal.

It was only after January’s MRI scan that I allowed myself to believe that Caroline might actually not die.

One of the silly things that happened in the middle of it all was that I started worrying about what would happen to Caroline if I died!

There’s a low point in cancer treatment  when you witness your loved ones at their absolute rock bottom – physically, mentally, emotionally, spiritually. They’re bone-thin, they can’t eat or drink, they barely speak and have no energy, they can’t face another treatment or needle or even to swallow a pill they know will take the pain away. Their skin is burning and raw, they have no hair….everything they knew of life is gone.

There were two days in America when I worried Caroline had given up. And it was up to us parents to pull her through. So what if I died then, and she lost her support? Crazy emotions that signal the depth of fear and fragility in the eye of the storm.

She hadn’t bloody well given up!!! She is the strongest most indomitable little warrior spirit I have ever met.

Our Focus Determines Our Reality

Yes, I’m quoting Star Wars, and not even one of the good films or Yoda! Thus spake the Jedi Qui-Gon Jinn to a young Anikin. But never a truer word.

Take death. We can focus on the possibility of death and waste away with worry about our mortality. We can resign ourselves and hide away from it, missing out on living the life we have or we can accept that death comes to us all and therefore seize the days we’ve been given. Our reality depends on our focus.

A Shamanic take on decision making is to ask what you would do if you knew you were dying or would die at a set date. Do it now. What would you do and change in your life?

I’ve tried this a few times over the years and believe me, when you are actually faced with the possible death of your child, your focus is far, far removed from the selling up, opting out, round-the-world travel or space adventure you might think you’d choose.

What you actually choose is time.

Time to stroke a cheek or wrap a curl of hair (that’s been missing so long) around your finger. Time to talk and watch the birds, collect shells and paint stones. Time to watch a  film, or 3 in a day even if it’s against all your screen-time rules and beliefs. Time to snuggle at night, time to balance against the toilet door, half asleep in the middle of the night while they’re on the loo, loving that they are there instead of cursing that they’ve woken you at 4am like you used to do. Time with family, with friends, outdoors, together.

I am blessed and thank God for this time. For the horrendous time we’ve spent in the last year fighting cancer. For the preciousness of the time we have now. For whatever wondrous time we have been gifted in the future.

Who knows what that future holds? All that matters is that Caroline is alive.

I love her more than words can ever express.

It’s been a hell of a year. Thank you all for being with us on the journey.

Read about my warrior girl on her 7th birthday in 2016 when cancer was then, unbeknownst to us, probably just beginning Happy 7th Birth Day

In February 2017 I noted her ‘virus’ and my best friend’s cancer battle in a post, little knowing that our family was soon to be ransacked by cancer Waiting for the Sap to Rise.

For more on Caroline’s cancer journey read Caroline’s Rainbow

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.