Shay is doing absolutely brilliant – he doesn’t need any treatment

Shay is doing absolutely brilliant – he doesn’t need any treatment

17 February 2021

A FOUR year-old Kilcoo boy who is recovering from a rare cancer condition is looking forward to the end of lockdown restrictions more than most of us.

Little Shay Knox only experienced three months of ‘normal life’ after undergoing two years and eight months of chemotherapy before he was advised to shelter from last March.

The youngest son of Susanne McCusker and Mark Knox took seriously ill at just three weeks old and was eventually diagnosed with Multisystem Langerhans cell histiocytosis.

The autoimmune condition affects several of the body’s systems with 50 children in the UK being diagnosed with it every year.

Mum Susanne (30) said: “Shay is doing absolutely brilliant now. He got his annual review just a few weeks ago and the doctors are delighted with him. He doesn’t need any treatment. We say that the disease is dormant now, he doesn’t get the all-clear.”

She said that she noticed problems with her baby son’s skin when she took him home from hospital and that he was not breathing or feeding easily.

“I knew something was not right, his skin was not right, he wasn’t feeding properly. I would have to wake him up just to try and get an ounce of milk into him,” she explained.

The infant developed lesions or blisters all over his body and Susanne tried everything recommended by her health visitor, community midwife and GP to help it, like changing his milk and applying creams.

“Eventually I took him to A&E at the Ulster Hospital. He was a bad colour, and had lost weight, having been born at 9lb 12ozs. We were referred to a dermatologist and over a course of two weeks we tried various antibiotics. Shay required oxygen to help him breath and an X-ray showed that he had it in his lungs as well and they couldn’t figure out what it was.”

Shay was transferred to the Royal Belfast Hospital for Sick Children and a team of oncologists diagnosed him with the rare disease on April 12, 2018.

He started chemotherapy the following week and the family celebrated the second birthday of their eldest son, Zach, in a hospital room.

The road ahead was a difficult one for Shay and his family. “There was supposed to be 12 months of chemo but it ended up two years and eight months,” said Susanne.

“His chemo didn’t really go to plan and he was an in-patient most of the time. The longest that we got him out of hospital was four to six weeks. We just had to keep going day by day. You just think of the here and now, and to get him over the next hurdle and then the next.”

Shay’s parents did get to see any real improvement in his condition until the summer of 2019 after the child had undergone high-dose chemo.

Shay eventually got to ring the bell to signify that his condition was dormant on December 18, 2019.

However, Susanne and Mark were only able to enjoy a few months of normality. He enjoyed his first birthday at home before Shay was advised to shelter from last March.

The little boy was able to make some friends at a local playgroup for a few weeks last September and enjoyed some special day trips with his family thanks to the Children’s Cancer Unit charity.

Susanne, who is due to give birth to her third child in six weeks’ time, has spoken about Shay’s condition in order to raise awareness of the charity which supports the work of the Haematology and Oncology Unit at the RVH where Shay was treated.

“We could never repay the doctors and nurses and the charity for their kindness which they show to every family, not just us. There could never be enough thanks for what they did for Shay and us.  The doctors and nurses are like family to us now.”

For more on the work of the Children’s Cancer Unit Charity, visit childrenscancerunit.com.