Trust your instincts... or the doctors?

Sally Roberts has a stark choice but Karen Attwood, who also has a child in chemotherapy, says you have to believe that the experts know best
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Indy Lifestyle Online

High Court judges are expected to rule this week whether a seven-year-old cancer patient should have radiotherapy against his mother's wishes.

Sally Roberts sparked a nationwide manhunt when she went on the run with her son, Neon, because she did not wish him to have the treatment, which she describes as "medieval" due to its potentially devastating side effects, including a lowered IQ and infertility.

But Neon's doctors say that if the boy doesn't have radiotherapy and chemotherapy following surgery for a brain tumour, he will die.

The decision was delayed last weekend and it was later revealed that the tumour had returned, but Mrs Roberts is reportedly still "50/50" as to whether she will consent to the full treatment and is seeking a second opinion.

It is an impossible situation. Does she agree to a difficult course of treatment with potentially horrendous and life-changing side effects? And if she denies her beloved son treatment, is she risking his life?

I, like Sally, am living what the judge described as "every parent's nightmare" as the mother of a child with cancer. But for my husband, Andrew, and I, there really wasn't any choice other than to put our trust in our medical team.

My two-year-old daughter Yasmin was diagnosed with acute lymphoblastic leukaemia (ALL) in August this year and is undergoing a two-year course of chemotherapy treatment.

In the 1960s, ALL, like most childhood cancers, was a death sentence. Now, due to huge advances in medical science the cure rates are 90 per cent with a standard two-year treatment for girls and a three-year treatment for boys.

Cancer treatment starts immediately following diagnosis, so Andrew and I were in a state of shock when our daughter, screaming in fear and pain, was pumped full of steroids, and chemotherapy entered her body through a cannula in a tiny vein in her hand.

Four weeks later, while we were still digesting the news, Yasmin had a port fitted into her chest which will remain there for the next two years. It is accessed weekly by a needle for blood tests and to shoot drugs straight into a vein near the heart.

Yasmin is currently in the most intense phase of treatment. This means that she has lost most of her hair, has had numerous emergency dashes into hospital thanks to her lowered immune system, and she treats us all to intense rages – many aimed at her five-month-old brother – whenever she is on steroids.

Since then, we have had to make difficult decisions regarding her treatment. We agreed to go on a trial in order to help children in the future. Although we ended up with the standard course of treatment, we were considering dropping out if it meant that Yasmin would have to have more chemotherapy than currently deemed necessary.

As Yasmin has responded well so far, we have not had to face the prospect of more intense chemotherapies with much worse long-term side effects, or indeed radiotherapy.

For Sally, the situation is more complex. And although the weight of medical evidence is in favour of radiotherapy, the strength of a mother's instinct should not be overlooked. I thought Yasmin might have leukaemia on her first admission into A&E with severe joint pain, weight loss, night sweats and pale skin, but despite this several consultants insisted, for two months, that she had arthritis. She was repeatedly sent home from hospital with painkillers, which had no effect whatsoever on the cancer in her blood, until a referral to Great Ormond Street led to a diagnosis.

The fear your child might die is the worst thought imaginable, yet all parents of children with cancer cannot avoid this possibility. One of the first questions you ask is: "What are the survival rates for this particular cancer?" To cope with long, often painful and difficult treatment, as a parent, you have to believe your child will be in the percentage that will survive – but of course, there are times when you fear the worst.

Our daughter was in agonising pain in the month before she was diagnosed and was left unable to walk for three months. Thanks to her treatment, she is now pain-free and has recently started to dance – albeit in a wobbly way – around the house as she regains strength in her legs.

We have placed our trust in her treatment plan and continue to believe we will be in the 90 per cent.

Karen Attwood is a freelance journalist and author of the blog