IN LOVING MEMORY of Mewan Voysey
When Mewen was on the neurosurgery ward at Birmingham Children’s Hospital, doctors asked about Mewen’s delivery. The only problem with his entrance to the world as he was nearly born in the car! His birth took less than 15 minutes, no complications; he was a large and seemingly healthy baby boy. At nine months old he started to walk around the furniture. Like his big brother, he liked trains, cars, diggers and trucks. He even caught chicken pox like his big brother, too!
After the chicken pox Mewen never seemed to regain full recovery. We took him to his G.P and the local hospital. They ran a series of tests, and he was placed on a drip. He seemed better and so we took him home. They advised us to bring him back in if he got any worse.
Two weeks later and it was our first day in our new house. Mewen really didn’t seem well. His grandfather insisted we took him to see the doctor. The receptionist registered him and give him an appointment on the spot. His new G.P sent him straight back to hospital. After a few days he was given a brain scan. The results showed a brain tumour the size of a lemon bending against his brain stem.
He was rushed into Birmingham Children’s Hospital and operated on the following day. The operation was a success. The tumour had been taken out.
Unfortunately brain tumours are nasty and there is never a simple and happy ending to them, or this story…
As a result of the surgery Mewen was left with problems walking, talking, and eating. He lost the use of his left eye, and the left side of his face drooped. He was barely conscious for his first birthday.
Mewen was a tough boy and made great progress! He was smiling before too long. Against all the odds, he learnt to eat again however, it took over a year for him to become comfortable eating and during this time he was fed through a naso-gastric tube.
Mewen tried to communicate and said a few words; he tried hard to walk. Leaning on furniture and holding someone’s hands. He loved playing trains with his brother and enjoyed his life. He rarely whined or moaned.
Mewen suffered greatly during his treatment and hated having his pulse taken. His tumour was aggressive and malignant. We eventually agreed to chemotherapy. His programme of chemo was tough. It was scheduled to last a year, but in the end took much longer. During his chemo Mewen caught MRSA. It had passed through his line site (A hickman line is used to administrate drugs). He was put in isolation and after some time he was cured. Mewen was left a large scar on his chest from this.
Every fortnight Mewen had more chemotherapy drugs. He was put on a drip with a short line which restricted his chances of movement. I cant imagine how frustrating this must have been especially for a toddler. Mewen was often caught trying to crawl out of the ward with his drip stand.
Mewen had numerous blood transfusions. He got through 6 Hickman lines; and each line meant a new operation. Every time Mewen needed antibiotics he would have to have a canula inserted. His tiny veins made this hard. On one occasion it took two hours to find a useable site. Mewen sat still whilst he was poked with needles. He never made a sound. Towards the end, even the doctor had tears in his eyes. They eventually managed to get his line in and Mewen obtained his much needed antibiotics.
Soon after the end of this gruelling course of treatment, a scan revealed that Mewen’s brain tumour was back.
After another major brain operation, Mewen recovered again. Some of the tumour was not operable and therefore left. Infections meant more time in isolation, and delays to the proposed radiotherapy treatment. They planned for a further 30 days and 5 minutes of radiation. It might not sound too bad, but because of his age this meant he had to be anesthetised for each session. It also carried potential long-term risks such as deafness and delayed growth, so it wasn’t a decision we could take lightly; it isn’t easy to make these decisions on someone else’s behalf!
He sailed through it. He crawled into the chamber with a smile, and woke up wanting a drink and a snack. Making him wear a hat outside was the trickiest part of the whole thing. The staff (at the Queen Elizabeth’s Hospital, Birmingham) were fantastic. They opened up the centre on a bank holiday especially to treat the 3 children under their care.
The treatment for Mewen failed. He was given just 6 months to live.
The cruellest thing is that he seemed quite well. Up until about two weeks before he died, he seemed quite healthy, unless you knew better. He caught a virus, the type most people would fight off, but he took to his bed and pneumonia carried him away. Of course the real cause was his brain tumour, ependymoma, which had been graded between 2 and 3.
The Royal Shrewsbury Hospital’s children’s Macmillan nurse and Shropshire’s Children’s Respite carers did a fantastic job which allowed him to spend his last days at home with his family.
Mewen was 3 and a half. This is no age for a boy to die!!! Five is no age to lose your brother, knowing you will have to spend the rest of your life without his friendship.
There are no winners in this tale. Mewen’s family is heartbroken, and the doctors and nurses who worked so hard to save him are disappointed that their efforts failed. There is no one in the medical world that knows the answers to how to cure this horrible illness.
Somewhere, sometime, another family will have to go through the same thing. This is why Mewen’s family are supporting Lisa’s fundraising efforts.
Vanessa Voysey & Family