What do you associate with osteopathy?
Most people assume it means bad backs or dodgy hips, but when my boys were babies, I discovered osteopathy had other key uses, too. It helped my eldest son, Max who suffered from recurring ear infections as a toddler.
And when we discovered my second son, Toby, was born with an incurable kidney cancer (mesoblastic nephroma with chondroblastic differentiation, they call it) we started a journey that no new mother should ever have to go on.
Great Ormond Street Hospital informed us there was no protocol for treating this disease. They came up with one that contained some pretty nasty concoctions that were pumped directly via a thin tube through my precious baby’s chest wall and into his heart, and topped it off with seven weeks of daily radiotherapy under general anaesthetic.
The chemo was so toxic that as a result Toby developed other conditions, including the non-absorption of calcium which led to brittle and broken bones.
He also developed a blood clotting problem (Acquired Factor II deficiency) and once he stopped breast feeding at 13 months he had to be fed via nasogastric tube.
Throughout his early years Toby had his older brother, Max, to look up to and emulate. Pushing himself to climb up to the top of the scarily high playground slide after his brother, demonstrated his strong determination to live his life to the full. And whilst I protected Toby, I never wrapped him in cotton wool.
Not knowing how long he would be with us, I wanted him to be an active boy, like his brother, and get stuck into life.
However, I wish I had known that perhaps a couple of osteopathic treatments could have helped Toby after the chemotherapy had left him emaciated and weak. At just under two years old he could barely stand and he wobbled like a starving child with the biggest brown eyes you ever saw.
However after a lot of time and many setbacks, Toby did begin to improve.
Gradually we could relax back into a life without endless hospital stays, febrile neutropenia bouts and management of the Hickman line still delivering medication to his heart. He worryingly fell off the bottom of the weight centile line growth chart, whilst his brother sat chubbily on the 98th.
I threw an enormous garden party to celebrate Toby’s second birthday. It was a very emotional day as he was still not out of the woods. As a special treat for the little fellow, the local Fire Brigade came with their engine and the children were allowed to shoot jets of water all over the trees by the house. Many still remember this now, as young adults.
When Toby was just six and Max was seven we moved to Athens, Greece where he flourished in the sunshine. His medical history terrified the British Embassy School, but he merrily swung from the climbing apparatus and scooted up the olive trees – to their absolute horror! He cart-wheeled around the flat’s marble floors and swam in the pool like a dolphin, spending ridiculous amounts of time under water. Some remember him sitting for long periods at the bottom of the deep end, like a Buddha!
He was wiry but strong and still determined to be a normal kid. He repeatedly read all the Harry Potter books and everyone would remark how similar he looked to his hero. All he dreamt of when he grew up was to be an actor on TV and film.
Just after turning 12, Toby became ill with Parvo virus (slap cheek) which was going around school, and he struggled for weeks to recover. One night I noticed his usually stick-like ankles had become very swollen. Frighteningly he seemed to be suddenly slipping away as he crawled, fully clothed, into my bed.
My gut instinct ordered me to take him immediately to A&E where they subsequently told me he wouldn’t have made it to the morning if I hadn’t acted as immediately as I did…
Very quickly they identified serious heart failure and we were whisked to ICU in the Onassis Heart Hospital. Eventually, it was deduced that he had chemotherapy-induced dilated cardiomyopathy and the Parvo virus had exacerbated it by attacking his hugely weakened heart.
A large blood clot in his heart was identified and despite all their efforts to dissolve it, a week later it caused a left middle cerebral artery stroke, leaving him paralysed and virtually speechless. These were terrifying times and the doctors’ worried looks told me we weren’t yet out of trouble.
After two agonising months, Toby was walking and talking again but the right side hemiplegia had left him with distonia and a hand which hung behind him and would barely open.
After many tests and one invasive biopsy, a Greek nurse slapped a little clear plastic sample pot into my hand with something red in it. She demanded I take it to a specialist clinic on the other side of Athens for testing. (God bless the NHS for keeping all that behind the scenes!)
Holding a piece of your darling child’s heart in your hand is something no parent could ever anticipate! Zero out of ten for care and compassion!
The terrible news came that Toby needed an urgent heart transplant and I was devastated. There is no programme for heart transplants for children in Greece. They are sent home, permanently attached to a pump which delivers life-saving drugs day and night into their little hearts until they give out.
Parents are simply told to go home and enjoy their little one.
But that was not going to happen on my watch! I got on my primitive mobile phone and begged GOSH to take Toby back and save him.
I was tenacious, and promised faithfully to remain in the UK for all his treatment and aftercare, so finally they agreed.
Suddenly Toby and I repatriated to the UK with just a suitcase, after over six years in sunny Greece. Max was utterly torn but ultimately decided to stay with his father. Toby and I set up home and spent much of our time in hospitals.
I reconnected with my Osteopath friend, Anne Wright, and it seemed obvious to give Toby regular osteopathic treatments to help his body heal after all the trauma.
Gradually he responded and grew stronger. Meantime the cocktail of drugs which GOSH had prescribed was supporting his heart and the viral damage repaired. After some tough negotiations, I got Toby into my preferred senior school.
Amazingly, Toby began to cycle to school and achieved great results in his GCSEs. Halfway through his BTEC in Performing Arts however, he collapsed. It was time to go on the transplant list.
Yet again, cranial osteopathy (which includes osteopathy on the structures inside the head as well as the body) transformed him from lethargic and exhausted to animated and vibrant.
Even I was shocked at the change.
While he waited for a new heart, he took two buses to college and back, every day, without a whimper. Most children would have been incarcerated in hospital with no visits outside allowed until the new heart was available.
At one year post-heart transplant, I threw another garden party for Toby – this time to celebrate the miracle of his 18thbirthday. Despite suffering with Epstein Bar Virus, he managed to shine as much as the sun and embraced all his unexpected guests with gusto!
Afterwards Max threw a further surprise party at a local bar and filled the place with teenagers – and me! It was a relief to celebrate this magical milestone.
Toby is now heading towards his 21st birthday, has a steady girlfriend and recently moved out into a super little flat. He handles all his own medication and hospital visits and is totally self-sufficient.
He has an accountancy job which he really loves and an amazing boss who is thoroughly supportive. Meanwhile in his spare time he is studying to be an accountant.
Whilst not exactly an actor (yet) he can often be seen on BBC One’s Call the Midwife playing the back of the head of the doctor’s son. I kid you not!
Toby is very happy, fully fledged, and I think that finally my work here is done!