Ethan’s Story

On New Year’s Eve 2013, our world was turned upside down when our 5 year old son, Ethan, was diagnosed with a brain tumour. The type of tumour Ethan had was know as Medulloblastoma. This is a rare form of cancer and statistics show that only 2 in 1 Million people are diagnosed with it each year.

Ethan had been poorly prior to the Christmas period however doctors sent him home with orders to rest as they thought his illness was a viral infection. Other than a headache Ethan seemed fine. During the week between Christmas and New Year’s Eve, Ethan’s four week old sister, Lily, was admitted to Wigan's Rainbow Ward and put on the High Dependency Unit (HDU) with breathing problems. This turned out to be Bronchiolitis, which due to Lily’s age was a real concern for us. As the days went by Lily began to improve and on New Year’s Eve I took Ethan in to the hospital to visit his mum and baby sister.

While Ethan was in the hospital he started to look really unwell and nearly collapsed so I took him to the A & E department, where he was checked over. He was diagnosed with a childhood migraine and since his sister was in hospital they arranged for him to have the room next to hers. Ethan had been on the ward around 20 minutes when he had a seizure. The doctors and consultants decided to take him for a CT scan straight away, in fact the consultants pushed him down to the CT scanner themselves. That’s when they confirmed there was a build-up of pressure in his head caused by a mass at the base of his skull. The hospital immediately called on the NWTS Team (Children’s Intensive Care Ambulance) to take him straight to Royal Manchester Children’s Hospital. He went from the back of the ambulance straight in to theatre to have the fluid surrounding his brain drained off. Ethan’s mum went in the ambulance with him while I got a lift to the Manchester hospital. We were allowed to see Ethan once he returned to the Intensive Care Unit (PICU) at around 11:45pm so we were able to see the New Year in with him. We were told however that although the initial operation was a success, he would have to go back to theatre a few hours later to have the drain repositioned.

The next day (New Year’s Day) he went back in to theatre for his third operation. This time it was for an 11 hour operation to remove the tumour. After the surgery, Ethan was again back in PICU and we were told that the tumour they removed was about 4cm in diameter (about the size of a golf ball). Immediately after the operation they MRI scanned him to get an idea to what was going on. The scan showed more bad news. The cancerous tumour had spread to the top of his spine and there was still 1cm left on his brain.

Later on New Year’s day we were accommodated in the Ronald McDonald House across the road from the hospital and by this time, Lily was being looked after at Wigan Hospital by other family members. Lily was discharged from hospital on the 2nd January healthy and well and was taken back to our house by my brother. After a few days of being looked after by grandparents and family, we came and collected her so she could be with us at the hospital. Every day our family, mainly the grandparents, travelled in to Manchester to look after Lily so that we could spend time with Ethan.

For the next week or so Ethan continued to suffer the problem of fluid building up in his head. The doctors decided to operate again and install an ETV (Endoscopic Third Ventrical). This operation was to be Ethan’s fourth and this was to help drain the fluid using the body’s natural drain channels.

For Ethan to be able to start his chemotherapy he needed to have a Hickman Line installed. This is a tube that runs from the body’s main artery and out through the skin, under the arm. This terminates in 2 tubes that can be used for administering drugs, taking bloods etc… So this meant another trip in to theatre for operation number five.

After another week it was clear the ETV wasn’t up to the job so Ethan went into surgery again for his sixth operation, this time to install a VP Shunt. This is basically where they run a rubber tube from your brain, through a pressure valve installed behind the ear, then the tube continues down to your stomach to absorb the CS fluid, all hidden beneath the skin. It’s truly amazing what the surgeons can do.

Apart from all of his battle scars, these operations now seemed to be working for Ethan because he completed 3 cycles of chemotherapy in hospital and with the aid of the physiotherapy team, which he did everyday, got himself fit enough to return home during the month of March.

In total as explained above Ethan spent a total of 9 weeks in hospital before he came home to spend priceless, precious time alone with us. We even managed a trip out to The Sealife Centre at Trafford Park, which he really enjoyed as he’d been to 3 or 4 in different areas of the country already.

The hospital visits were still very often though. We took him to and from the hospital for numerous appointments for chemotherapy and MRI Scans. The Christie was also often visited where Ethan began to make his mask for when he under-went radiotherapy. He designed the mask to look like Spider-Man as this was Ethan’s favourite super hero. His consultant at The Christie said that Ethan is the only child she had known that was excited about having Radiotherapy.

After 5 amazing weeks spent with us all at home Ethan fell poorly again and he was taken back to Royal Manchester Children’s Hospital. That day, we were told Ethan’s shunt, that had been previously fitted, had failed. Ethan had to have an emergency operation in the early hours of 2^nd April to have a new shunt fitted. A couple of days passed whilst Ethan was recovering, then out of the blue, our brave little man suffered a number of seizures which lead to him having more MRI scans – little did we know the worst news was yet to come.

Ethan’s consultant explained to us that the tumour was still there, only this time the growth was more aggressive and there was nothing anyone could do. The consultant basically explained that Ethan only had hours left and he advised that if the worst happened then he would take the decision not resuscitate him.

Ethan was moved to HDU and his consultant decided to give Ethan a course of steroids as a last resort, as he had these in January after a downturn in his health and responded well to them. The idea behind this was to try and get him fit enough to attend The Christie to start his Radiotherapy treatment. The original radiotherapy plan was to be 2 sessions per day for 4 weeks but this was now changed to 1 session per day for as long as it takes until he showed signs of improvement.

Ethan seemed to respond well to the steroids and five days later the NWTS team transferred Ethan to The Christie, for his first session of Radiotherapy, this went well and gave us all hope. However the next day about 20 minutes before the NWTS team arrived at the hospital, to take him for his second session, Ethan’s breathing deteriorated. After having an X-Ray and an examination Ethan’s consultant confirmed the tumour had progressed more and the only decent thing to do was to make him comfortable.

Ethan lost his battle against Medulloblastoma on 17^th April 2014 whilst on BMTU in Royal Manchester Children’s Hospital.

In all Ethan endured 7 operations, roughly 20 MRI scans, 4 cycles of chemotherapy, numerous physiotherapy sessions including swimming (which he loved) and one dose of radiotherapy.

That is why Ethan will always be known to us as a real super hero.