Writing about Caroline’s care and condition and the nature of her cancer is tough emotionally, hence not having written for ages.
I realised this a couple of weeks back when she had a hearing test to compare with the test carried out following her initial Rhabdomyosarcoma diagnosis in March. It was just another in a long list of scans.
Incredibly it showed a complete recovery of her hearing on the tumour side to exactly the same as the right ear, the best proof of recovery we could hope for without a CT or MRI scan! I cried my eyes out with relief, joy, hope, gratitude. I had no idea how strung out I was about her recovery. No chance of writing coherently.
It is hard to believe that she has come through 6 months of life saving medical treatment.
It is hard to acknowledge that just 6 months ago her life needed saving…
Making Light of the Dark
Those are the dark thoughts that were rubbed away daily to maintain positivity and get Caroline through her ordeal.
Back in March, Caroline was an emergency admission with an inoperable tumour (due to its deep location and the vicinity of facial nerves etc) for which the surgeon was called in on a day off to insert the Hickman line so that chemo could start the next day.
Yesterday Caroline had an MRI scan to determine the success of her treatment. We get the results next Wednesday. More waiting, more limbo, more hope and a whole heap more prayers.
Radiotherapy and Beyond
When I last wrote (from America) Caroline had completed 21 of her 31 radiation treatments. She was in a terrible state of stress, fatigue, weight loss and lack of appetite resulting in desperation to avoid having a naso-gastric feeding tube fitted; she was fighting thrush and mucositis; in pain from the tumour, the chemo, the radiotherapy skin burns, the secondary illnesses; homesick and generally desperate for it all to be over.
Ifosfamide Toxicity and Methylene Blue
She had experienced the terrifying symptoms of Ifosfamide toxicity, basically poisoning from a build up of the Ifosfamide chemotherapy drug which caused mental confusion, uncontrollable bodily tremors and excruciating head pain which had her literally screaming in agony.
When the screaming stopped and the pain wore off, Caroline told us she’d not been in pain, just desperate to be home. A bizarre state of confusion. A rescue drug, Methylene Blue, reversed the neurological damage within hours but the whole event was appalling for all of us.
She was well and truly ready to return home.
More Blues Back Home
Unfortunately home wasn’t the relief she’d anticipated and it took a couple of weeks to settle back in. In Caroline’s dreams the return home would make food taste better, pain disappear, her appetite would return and she’d feel better.
Finding the Right Food
On our first night home my poor brother-in-law made a delicious shepherd’s pie which had been on Caroline’s wish list for weeks but after a mouthful she left the table in floods of tears as it did not taste how she’d expected. It took 6 different lots of sausages to find some that tasted right! Once she accepted that ‘home’ didn’t mean ‘better’ she slowly found a routine and some peace.
There were two more sessions of chemotherapy back home at the RVI (which we also discovered has the highest rate of paediatric oncology success of any UK hospital, read this article). Both chemotherapy rounds made use of the Methylene Blue prophylactically to ensure no further toxicity occurred. Both went without a hitch.
End of Treatment Bell
The 9 rounds of chemotherapy finally finished at the end of August, with an emotional bell-ringing ceremony after the final dose. Two weeks later we were back in hospital isolation for a temperature but she is now through all of that and continuing her healing and gentle recovery at home.
Parents as Impotent Onlookers
One of the worst things about being the parent of a child with cancer is the abject helplessness one feels most of the time. Virtually everything about a child’s ‘new’ life following diagnosis is beyond a parent’s control.
It’s not quite so bad for children Caroline’s age or older (though they have other, often worse fears and experiences) but my heart breaks for the parents of toddlers with no understanding of what’s happening to them. They, thankfully, won’t remember most of their ordeal (as Caroline will) but their parents will NEVER forget. The plaintive screams of “No Mummy” are a regular occurrence on child cancer wards, when little ones are being given drugs or procedures that scare them.
And parents must allow it all to happen.
No longer are we the omnipotent protectors of our children but passive, impotent onlookers, comforting our babies’ hearts and minds, however old those ‘babies’ are, as best we can while they suffer before our eyes. Of course it is suffering in order to achieve healing but that feels scarce consolation at the time.
In all of this Caroline has shown incredible resilience, fortitude, strength and all round staying power. An utter will to survive. She has achieved incredible things, including suggesting a fundraising sale for the UK Sarcoma charity, playing in the sea with cousins, climbing, being a mascot for Newcastle United, singing every day and generally loving life. Photos in a forthcoming article.
‘Wishin’ and Hopin’ and Thinkin’ and Prayin’
The doctors, nurses, us as parents, our family and friends, the angels, and Caroline herself have done everything in our power to heal this illness.
On Wednesday we get the MRI results and until then we keep praying, ever grateful for the powerful healing her warrior spirit has achieved so far.
In the meantime Out, Damn Cancer and God bless you Caroliney, my gorgeous girl.
Read more of Caroline’s cancer journey at Caroline’s Rainbow.