Coming to Terms with a Child’s Cancer Diagnosis – “None of this is OK.”

We love dragons at Kids of the Wild, particularly Toothless and especially Bearded weirdies like this cute guy, Fenster, under attack from St George.

Everyone faces life’s dragons. We deal with them as best we can, though it is hard to make sense of a child having to endure the suffering that follows a cancer diagnosis, cruel even.

Yet this St George’s Day, against the odds, Caroline has proved herself to be far from a damsel in distress. She is one seriously unstoppable warrior princess on a mission to kill the cancer dragon in her head.

It’s a bad dragon, one we definitely hate (not like Fenster) and the battle rages daily.

However, after just two rounds of chemotherapy, we’re celebrating three small victories in her epic fight; an unexpected reduction in tumour size, a change in tumour consistency from hard lump to being watery, cystic, indicating it is dying and an unprecedented improvement in Caroline’s voice which our consultant wasn’t expecting! (I’ll post about the wonderful hospital and staff soon).

Current (18th April) and original (27th February)

There’s obviously a long way to go and the toll on Caroline’s body is huge, but she’s not giving up.

The Courage of Children

I have nothing but admiration for the courage of my child, and all children in her situation.

On Tuesday, exhausted as she was, we had to wake her 2 hours early for a hospital MRI scan she didn’t want to have. She knew that afterwards she’d be pumped with more chemo she didn’t want to have – poisoned basically, causing severe nausea, pain, weight loss, nerve issues, constipation and 3 days on a drip that wakes her every two hours for the toilet.

She didn’t cry, moan, complain nor avoid getting up. She simply got dressed and got on with it, coming to me wordlessly for a long hard hug which said more than a million words about what she was feeling. But she did it.

As a parent the hardest thing is sitting helpless as that poison is pumped in, watching your child become tired and lethargic, seeing her skin yellow, her eyes sink, lose sparkle and form deep brown bags beneath.

You sit there, watching the drugs break her into pieces, willing it to stop yet willing it to work at the same time and all you can do is hold her hand as she, through sheer strength of will, puts all her pieces slowly back together.

Read beautiful beads for courageous cancer kids to see one of the ways our brave warrior children are saluted for their incredible courage.

The Tapestry of Life

It has proved impossible to write about our experiences in the last weeks, not least because the Mum of Caroline’s best friend, one of my best friends, died of cancer during Caroline’s second round of chemo, with the funeral held last week during Chemo 3.

There are literally no words to describe the impact of cancer on both our families and the terrifying nature of watching a friend die, grieving for her, her daughter and her family while praying and hoping that one’s own daughter will survive.

Caroline recently asked why God doesn’t stop all cancer…
If only.

But it’s these things, these knots on the back of the tapestry of life, that make the front so beautiful.

In the 3 weeks between Chemo 2 and 3 Caroline was beyond exhausted, struggling to eat and put weight on, desperate to avoid a naso-gastric feeding tube, having every poop examined, her temperature checked twice daily and being fed a cocktail of 7 to 10 drugs three times a day.

Her stamina was inspirational and with energy-boosting visits from friends and family she achieved a huge level of activity including trampolining, beach trips, an Easter trail around a lake, hours of outdoor play, tree climbing, fence balancing, Easter Egg hunts, football, pond dipping, cartwheels and handstands!  All of which had me clutching my own chest in the place where Caroline’s Hickman line sits, terrified it would come out! She of course had no such worries and is proof that not only is it possible but being active and outdoors with cancer is a positive life enhancer. (I will post in future about enjoying the outdoors safely during cancer treatment.)

The tapestry of life truly is beautiful.

Not O.K.

One thing which has kept me going is a statement our consultant, Dr Gail Halliday, made back in March when telling us Caroline’s diagnosis. Through tears I said ‘It’s OK,’ but Gail said, quite firmly, ‘It’s not OK, none of this is OK. Nobody should have to be told their child has cancer. ‘ She gave me permission to cry, to rage, to grieve the loss of Caroline’s old life, to grieve for her suffering.

A couple of weeks ago those words gave Caroline the same permission. She was upset at the prospect of being away from our dog while she undergoes radiotherapy in America, up to 12 weeks away from home. She was trying not to cry.
‘Do you know what Gail told me?’ I asked, and told her. The flood gates opened and she let her emotion out. None of this is OK, but somehow that makes it OK.

Survival of the Fittest?

The battle for life rages all around us, all over nature.

I took this photo today through our bedroom window (between fruit ninja duels with the wild warrior and blogging!); a cool Blackbird Daddy feeding his chicks in their nest in our ivy. They’ve all been fighting for survival from the second they hatched.

Happy St George’s Day and may all our battles be victorious.

Read more about Caroline’s cancer journey at 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.

Huge thanks to Ed of Ed Brown Photography  for the use of his great photo of St George battling the ‘fearsome’ Bearded Dragon. A brilliant shot – nice pose Fenster!