Couple fight boy's brain cancer with natural remedies, reiki and alternative medicine – we believed his body ‘would not take' more chemotherapy, Hong Kong mum says

Shirley Johnson faced the biggest test of her life when her 18-month-old son, Max, was diagnosed with medulloblastoma, a type of brain cancer in children, in November 2019.

The Hong Kong-based life coach, yoga instructor and wellness therapist had used yoga, meditation and spirituality to overcome the trauma of a difficult childhood and then several miscarriages. She would call on these healing tools again to help her fight for her second child’s life, which she describes in her latest book, Cancer I Forgive You.

“Max had been lethargic for a few weeks. Initially, we thought his body was fighting off a flu, but a CAT scan and an MRI revealed a brain tumour,” says 40-year-old Johnson. “When we heard the diagnosis, my knees buckled. If it wasn’t for my husband holding me, I would have passed out.”

The 5cm tumour was exerting pressure on Max’s brain and needed to be removed immediately. He had surgery the same day.

Yoga instructor and wellness therapist Shirley Johnson at her home in Tong Fuk, Hong Kong. Photo: Jonathan Wong

Two more operations followed within the next two weeks, after which the doctors recommended eight cycles of chemotherapy followed by radiotherapy. Max developed posterior fossa syndrome, a condition that sometimes develops after brain surgery. He had loss of muscle control, blurred vision, impaired hearing and headaches.

As the months went by, he only regained partial mobility.

He also had severe side effects from chemotherapy. With each chemotherapy cycle, Max grew weaker. It took longer for his bone marrow to recover to get to the minimum blood count level to undergo another round.

“He was in pain and cried all the time. He had nausea, vomiting and diarrhoea. I felt helpless when I saw him sitting in a pool of his own puke. I didn’t know where to start cleaning up.

“His hair was falling out and I spent hours every day just removing hair from his pillow,” shares Johnson. She also worried about Max contracting Covid-19 with his lowered immunity levels.

Johnson with her son, Max, at home in Tong Fuk, Lantau Island. Photo: Jonathan Wong

Four months after the treatment finished, Max relapsed. Johnson and her husband, Neil, chose not to subject Max to chemotherapy any longer.

“We believed his body would not be able to take it,” says Johnson. They also decided not to pursue radiotherapy, as Max had high chances of developing secondary cancers and other lifelong illnesses that come with radiation treatments at a young age.

The couple treated Max with natural supplements such as Vitamin D3 and K2 and off-label drugs – drugs used to treat a medical condition for which they have not been approved, or which are given in a different way, or at a different dosage, to those approved. These included low-dose naltrexone (LDN), a drug normally used to treat alcohol dependence and prevent relapse of opioid addiction.

“We spoke extensively with parents of children suffering from cancer who were using alternative treatments and also found a wealth of information on the subject on the internet and social media,” says Johnson.

Linda Elsegood is founder of the UK’s LDN Research Trust Charity that raises funds for clinical trials of LDN for cancers and autoimmune diseases. She says many doctors are finding that traditional medicine can only do so much for certain diseases and are increasingly open to prescribing off-label drugs which seem to be having a significant impact on patients’ health.

Elsegood, now 65, was diagnosed with multiple sclerosis when she was 44 and used LDN to get her life back.

A friend recommended Johnson read Jane McLelland’s book How To Starve Cancer. McLelland was diagnosed with stage 4 cervical cancer and used off-label drugs and supplements to cure herself.

“The theories and suggested treatments explained in her book resonated with me. In fact we had been doing most of it already,” Johnson says. “We wanted to help Max build a stronger immune system to keep the cancer from coming back.”

“Neil and I often found ourselves asking if we were doing the right thing. Yet we were certain that we did not want chemotherapy or radiation for him until we were desperate,” she adds.

Things began to turn around and soon Max’s tumour began to shrink. Johnson’s experience changed her view of conventional cancer care, and she advocates research and clinical trials that do not involve harsh treatments.

Johnson’s past experiences of overcoming adversity helped her cope with her son’s illness. Born and brought up in Hong Kong, she faced a difficult childhood after her parents divorced when she was three years old. As an adult, she suffered multiple miscarriages before Max’s older sister was born in 2018.

Johnson and her husband, Neil, with her daughter, Jasmine, and son, Max, at home in Tong Fuk, Lantau. Photo: Jonathan Wong

“The years struggling with infertility and healing from my childhood trauma led me on the path of yoga, meditation and spirituality, which transformed me,” says Johnson, who trained to become a reiki practitioner, a practitioner of ho’oponopono (a Hawaiian practice that literally means “to put right”) and a life coach.

“When life dealt me the cancer card, I asked myself whether I had what it took to win the hand. I made the decision to use every tool in my arsenal to make it a journey of great healing, personal learning, and remaining hopeful.”

Johnson began and ended her day with a yoga practice. “As soon as Max went to sleep in the evening, I set up my ‘yoga studio’ in the bathroom, since that was the only place, I could take my face mask off and remove the protective gown.

“No one would believe me if I told them I spent a year doing yoga in the bathrooms of a public hospital,” says Johnson. “Yoga allowed me stay in the moment and kept me calm.”

When Max was admitted to hospital, they often found themselves in a different room.

“For a few nights, I would do ho’oponopono meditations, which involves expressing repentance, forgiveness, gratitude and love. Soon I would feel a serenity return to us. Things became calmer, Max slept better, and it felt more like a second home than a cold, isolated oncology ward,” says Johnson.

Johnson did energy healing for Max every day in hospital, giving him reiki – a complementary energy-transfer therapy. “Reiki from my palms would travel to wherever healing was needed in his body.”

In October last year, Max relapsed again and underwent a cyber knife surgery, a non-invasive treatment that delivers concentrated doses of radiation to destroy tumours.

Johnson with her daughter, Jasmine, at home in Tong Fuk. Photo: Jonathan Wong

“While radiating the entire brain has long-term, harmful effects for children, cyber knife radiation is a safer option,” says Johnson, who continues to follow the alternative treatment regimen for Max. He requires full-time support, help in walking and attends a special needs school.

Dr Wilson Ho, head of neurosurgery at the Hong Kong Children’s Hospital, says that 30 to 40 children in the city every year are diagnosed with a malignant brain tumour and the mortality rate is 30 per cent.

“Cancer impacts the entire family and seeing the children suffer is heartbreaking. Our goal is to be there for the children and their families and guide them in the best way possible,” says 53-year-old Ho.

Johnson says that she has come to terms with her son’s cancer.

“One day while meditating, a picture of what I imagined as cancerous cells came to mind. I took a deep breath and found myself saying, ‘Cancer, I forgive you,’ and found tears streaming down my face.

“I realised how much anger, resentment, and fear I had been holding against cancer – and letting it go was liberating. I visualised gold sparkles falling upon the ugly, distorted cancer cells, and one by one they turned into healthy, vibrant cells.”

Forgiving cancer, Johnson believes, gives her the best chance to conquer it.

Like what you read? Follow SCMP Lifestyle on Facebook, Twitter and Instagram. You can also sign up for our eNewsletter here.