For Whom The Bell Tolls

Why is Children with Cancer UK such an important Charity to support?

By Nada Stankovic, Tatiana’s mum.

As Milos steps off today to start the GR5 to raise awareness of and funds for Children With Cancer UK, I am compelled, based on my personal experience, to tell you precisely why this is such a worthy charity to support.

Of every £100 spent on cancer research in the UK only £3 is spent on research into childhood cancer. Children with Cancer UK invests in high quality childhood cancer research that would otherwise go unfunded.* I am sure that children all over the world diagnosed with cancer, and the medical staff caring for them, would benefit from the research funded by this charity.

Every day more that ten children and young people are diagnosed with cancer in the UK, but eight out of ten of these young people CAN be successfully treated thanks to the vital research funded by Children with Cancer UK. Cancer is still the most common medical cause of death in children and young people, claiming more than 500 young lives in the UK each year.*

On Friday 13th March 2015 our daughter Tatiana was diagnosed with a malignant rhabdoid tumour of the bladder. To say she had bladder cancer is more understandable but misleading in many ways. Establishing the type of tumour is so important as it dictates the treatment and the prognosis. Rhabdoid tumours in the bladder are “vanishingly rare”, extremely aggressive and have a poor prognosis. However we had a bit of luck, the paediatric oncologist assigned to look after Tatiana at Bristol Children’s Hospital, Dr. Steve Lowis, knew a lot about rhabdoid tumours and “vanishingly rare” was his description.

He helped us decide which protocol would be best to treat Tatiana – there were two available – the German one and another one which was still in clinical trial. The very efficient Germans hold a register of all the children who have been treated with their protocol: there were 300 children on a register covering seven years and the whole of Europe. Dr Lowis knew of ten UK children diagnosed with malignant rhabdoid tumour and treated using a different protocol, five survived and five didn’t.

On the basis of these tiny numbers, and the fact that Dr. Lowis had successfully treated another girl about three years earlier, we consented to Tatiana being treated using the German Protocol. The treatment consisted of complete removal of the tumour and surrounding tissue – Tatiana had two consecutive operations to remove rhabdoid tissue from her bladder; nine rounds of chemotherapy and 25 days of radiotherapy – intensive treatment for an aggressive cancer. We were warned that the cancer could come back during treatment. Luckily, it didn’t.

The photo above shows Tatiana with her Beads of Courage – the journey of her cancer and its treatment: the operations, the intravenous lines; the chemotherapy; the radiotherapy; hospital admissions from febrile neutropenia, blood/platelet transfusions, antibiotics etc etc. Each bead tells one small story: of courage; of endurance; of pain and suffering; of strength; bravery and stoicism. Tatiana endured all of this with a smile on her face.

I salute her, my brave, brave daughter.

However, the intensity of this treatment was not without side effects. By the end of treatment Tatiana was left completely infertile; without any functioning ovaries so no hormones to continue through puberty; a very small bladder and all the issues associated with that; and she was left profoundly deaf. Unbeknown to all of us her bone marrow had been damaged too. So for 17 months we all thought that Tatiana was in remission and recovering well. We thought we had ‘dodged a bullet’ and been given a precious second chance. We were beyond happy.

On Wednesday 15th February 2017 our lives were shattered for a second time. Her damaged bone marrow finally showed itself in the form of the hideous Acute Myeloid Leukaemia – AML – and because this leukaemia was caused by one of the chemotherapy drugs used in 2015 it’s called a secondary/therapy-related Leukaemia – another very, very rare occurrence with a very poor prognosis.

This time we had a less palatable haematologist looking after Tatiana. In his child-unfriendly, compassion-free way he spelt out the end game – that Tatiana might die in days, weeks or months, nobody knew. Without a bone marrow transplant she would certainly die, but could die anyway during the bone marrow transplantation treatment or relapse after successfully having a new bone marrow, and then die.

Basically, all roads led to the same outcome – it was practically certain our child would die one way or another. The suggestion was that we should give our child the best possible quality of life before her certain death – and we did just that, within the constraints of her illness.

Tatiana died at 3.45am on the 23rd of August 2017 aged 13 years, 8 months and 1 week. Our adored only child.

On the ward is the Treatment Bell. When a child finishes treatment, all the staff and family crowd round to applaud as the child rings the bell to signify that treatment is over. They can finally go home.

As Tatiana’s body was wheeled from her room to the hospital mortary we stopped by the Treatment Bell and rang it quietly three times, just us, the nurse and the porter – no happy faces, no applause. I wiped her name off the inpatient board on the ward. We packed up her room and went home to this empty life without our beautiful, brave Tatiana.

Children with Cancer UK is committed to developing safer, kinder and more effective cancer therapies with fewer toxic side effects. 83p from every £1 donated is spent fighting the injustice of cancer in children and enabling more children to ring their end of treatment bell. This charity wants to ensure that they are doing everything they can to improve the lives of children with cancer.* I hope that one day they achieve that aim. I would not wish our horrific journey through childhood cancer on anyone. For this reason alone I would ask you to support this vital charity and support Tatiana’s Gambol.

Thank you! Tatiana’s mum.


* Source: Children with Cancer UK charity website.

PS Next time I will tell you a little about Tatiana – the child behind the cancer!