Skye’s Treatment

Diagnosis

Symptoms began with feelings of nausea on the morning of Friday 26 July 2013, followed by a perfectly normal day. This progressed to a single vomit in the morning, followed by a perfectly normal day. After ruling out a stomach bug and other common ailments, the GP was the next port of call. He was diagnosed with reflux, and prescribed antacid medication.

With no significant improvement, we went back to the GP, where he was prescribed stronger antacid medication with advice that an immature digestive system, in particular the sphincter muscle at the entrance to the stomach, can sometimes cause this problem. Again, there was no improvement and a further GP appointment was made. He was referred for blood tests, which were taken on the 20th August, and they came back indicating high potassium. He was recalled to hospital for further tests, which proved to be normal. We tried late night and early morning feeds to rule ketotic hypoglycemia, again no effect.

Tissue Analysis

The analysis of the tissue confirmed that the tumour was a medulloblastoma. It is the most common of childhood brain tumours. It is much easier to treat if it is confined to its origin, but it becomes more complicated if it has become metastatic. Unfortunately, in Skye's case, it had become metastatic and nodules were evident not only elsewhere around the brain, but in the spinal cord as well.

Withdrawal of the Milan Protocol

In May 2014, the Milan Protocol was suspended due to the emergence of severe neurotoxicity. Children continue to be treated with a combination of Radiotherapy and Chemotherapy, but under a different protocol.

Skye’s Diagnosis

Skye was just like any other healthy, happy boy. He was super excited to be starting school and we had just moved to a house in Abingdon, Oxfordshire opposite the local primary school where he was to attend.

Towards the end of the summer holidays Skye started feeling sick in the morning, a classic symptom we now know of a brain tumour. I took him to the GP who prescribed acid reflux medicine but after a couple more weeks, he was vomiting more regularly. I asked for a referral to a paediatric unit of our local hospital. Not for one second did I think it was anything sinister, but we just wanted him to feel better for the start of school.

After an initial CAT scan, we were given the most devastating news Skye had a medulloblastoma, a malignant and aggressive brain tumour. My heart just stopped. The world went silent. The consultant was moving is mouth but I could hear nothing. I just remember thinking “Don’t break down for Skye’s sake”. A role I have been playing ever since.

Diagnosis of a brain tumour is the kind of news you wouldn’t wish on your worse enemy, let alone your treasured, beautiful child.

Life for us as a family changed over night. The whole family was torn apart. Skye’s little brother Jesse, aged 18 months spent most nights at his Granny’s house and my husband tried to juggle work with endless hospital visits. I never left Skye’s side.

Within days Skye underwent major brain surgery at the John Radcliffe hospital in Oxford to remove as much of the tumour as possible before starting on months of chemotherapy and radiotherapy to kill the remaining cancer cells. He and I were often confined in isolation for weeks at a time.

Almost a year on, Skye's subsequent MRI scan gave us much awaited good results that his tumour was significantly reduced and all that was potentially left was scar tissue. He was discharged but was unable to walk. At that stage it was attributed to muscular wastage from being bed bound for so long.

But Skye was suffering from the effects of his aggressive treatment, which had caused nerves in the brain and spine to die. He became paralysed from the neck down. His consultant told us he was a victim of radio/chemotherapy neurotoxicity. 

We were initially told that that was highly unusual and very rare. But we now know that a number of other children had also developed severe neurological side effects.

Skye was left in a state of tetraplegia, with double incontinence, and very poor use of his upper limbs and hands. Skye sadly died at home in my arms on 29 August 2014.

THE SHOCKING TRUTH WE DISCOVERED AFTER SKYE’S DEATH

As if losing Skye wasn’t enough, what we then went onto discover with the help of Skye’s doctor was the shocking fact that there is no country-wide formal infrastructure in place to gather, monitor and share data for standard guideline treatments, such as the one Skye had been on as there were with patients on clinical trials.

Despite the fact we now know other children had been suffering in a similar way and different treatments had been tried, Skye’s consultant could not easily obtain this information.

To illustrate how important this issue is, when Skye’s consultant noticed there was an unexpected problem with Skye—the severe white matter damage shown on the MRI scan—she immediately tried to see whether any other clinicians had experienced similar issues. This was important in order to ascertain what other symptoms to look out for, what other treatments could be tried and what other outcomes they had had. Despite the fact that we now know that other children had been suffering in a similar way and that different treatments had been tried, she could not easily obtain this information; it was a matter of phoning around individual colleagues in an ad-hoc way to ask them one by one, and all this took place while Skye deteriorated. Time in such situations is of the essence so this is an unacceptable situation and it cannot be allowed to continue. Had there been a system in place to monitor adverse effects, things might have been different.

This is not acceptable, extremely dangerous and raises questions over avoidable deaths.

My husband and I have spoken to a number of other families whose children have died as a result of side effects to their treatment. We all accept that fighting such aggressive tumours is not an easy task and that treatment can come with unfavourable consequences. What I cannot accept however, is that where a significant fundamental area of childhood cancer care is unanimously agreed to fall short, not only by the front line medics but a numerous politicians, including Jeremy Hunt, with whom I have spoken directly with, no improvements have been made whatsoever.

We absolutely understand there is only limited funding resources but what is being requested is not costly and it the most basic of measures to have in place.

The Oxfordshire Coroner concluded the matter was so serious that he filed a ‘Prevention of Future Death’s Report’ to Professor Sir Bruce Keogh, the National Medical Director of NHS England at the time.

Nicola Blackwood who was our MP at the time stated in Westminster “The complete absence of monitoring for adverse effects of standard treatments of childhood cancers can lead to life-long disability and death. I hope the Minister will take this away and take urgent action to rectify the situation.”

I am utterly dismayed that six years on, nothing has been done to address this. In school, we teach pupils to learn from their mistakes. Failure should not be considered a dirty word that supresses what could be achieved if only we improve upon what is discovered.

Why are some areas of PHE, the only industry that thinks it is above this way of learning when the cost of not being open and honest but rather turn a ‘blind eye’ comes at the greatest cost of all, children’s lives. 

We are forever indebted to the work of Tessa Jowell who raised huge awareness of brain tumours which are the number one cancer killer in children before she herself sadly died from a brain tumour. It is incredibly difficult for normal families like ours to be heard and we are grateful she was brave enough to use her tragic situation to help others. That is all we want to do also.