“Of course our life has changed. It’s given us all an incredible sense of perspective but it is something we accept and we are moving on. It won’t get the better of us.”
These are the words of Monika Matyjasek whose five-year-old son Oliver Gavin is being treated for leukaemia at Newcastle’s Great North Children’s Hospital. It seems Oliver has adopted his mum’s positive attitude too, quietly adjusting to a life involving endless hospital visits, chemotherapy, antibiotics, injections and lumber punctures.
“He has simply accepted that this is what his life involves now and he is coping remarkably,” says Monika. “For him going to hospital frequently is just normal and he doesn’t question it. He’s a clever boy and I’m very proud of him. He’s even doing really well at school. Initially he had to miss lots of school but he has picked up brilliantly since he’s been back and he’s progressing at the same rate as any other child now.”
Monika says her acceptance and understanding of leukaemia is a survival technique she developed to cope with the fear of a disease that threatened to take the life of her son. She admits she knew nothing of leukaemia when Oliver was first diagnosed but was determined to get to grips with its symptoms, causes and treatments as a way of preparing for the battle she realised Oliver would have to fight.
She made a list of everything she wanted to know about acute lymphoblastic leukaemia, which is a cancer of the white blood cells and the most common childhood cancer, and fired them all at celebrated childhood cancer specialist Professor Josef Vormoor. Josef is Director of the Northern Institute for Cancer Research at Newcastle University (NICR) and Honorary Consultant Paediatric Oncologist at the Great North Children’s Hospital and continues to treat Oliver.
“It was a couple of days between the diagnosis and meeting Josef and they were just the worst days of my life,” says Monika. “I didn’t know or understand anything about leukaemia and there were so many things I wanted answers to. Everything changed when we met Josef.
“He took the time to answer every single question I had – and I’m a person who has lots of questions! I found it all much easier to cope with once I understood the disease and how we were going to tackle it.”
Partnership with parents crucial
Professor Vormoor says this partnership between clinicians and the families of their patients is crucial to the success of all treatments. “Good communication is everything!” he says. “The parents of our patients become partners in delivering treatment as they give most of the oral medicines at home. We rely on them to monitor their children and bring them back to hospital if they get unwell due to side effects of our therapy. Oliver’s mum is a good example of how families are empowered by understanding how we are going to treat leukaemia, how this may affect their children and what side effects to expect.”
That first meeting between Monika and Professor Vormoor was back in February 2013 and it brought to a conclusion weeks of worry for Monika who couldn’t understand why Oliver had gone from a happy, healthy four-year-old to a weak little boy who seemed to catch every bug in the playground.
“I was never away from the GP and began to feel like a neurotic mother of a newborn,” she says. “My instinct was right though because at some point he became really poorly and at that point he was sent to James Cook Memorial Hospital in Middlesbrough, near to where we live, and I found out he was suffering from pneumonia. The same day his blood was taken and the results suggested he might have leukaemia but I was told it might be anaemia because of the infection that was raging round his body – at that point it wasn’t clear.
“Oliver was taken by ambulance to the Great North Children’s Hospital in the night and I followed in my car behind. All I could do on that long drive was hope it wouldn’t be the worse case scenario when we arrived. He was admitted to the cancer ward and though he was too weak to have a bone marrow test, the doctors confirmed he did have leukaemia based on his bloods.”
Life is back on track
Oliver underwent six months of intensive chemotherapy and is now in the middle of a two-year course of ‘maintenance’ chemotherapy and despite their daily challenges, the family is enjoying getting life back on track.
“I have just finished my university training to become an occupational therapist,” says Monika. “I was in my last year at university when we got the diagnosis so I put my studies on hold for a year but I’ve managed to complete them now.
“Oliver was selected for a trial that means his treatment is a little bit different from the usual course of action and he is feeling a lot better. He doesn’t need steroids during the final two years of his maintenance therapy, which is such a blessing, and we are all doing well.
“I wholeheartedly support the Future Fund’s aim to build on the expertise in children’s cancer. We are so grateful for what is already understood about Oliver’s leukaemia and anything to improve on this and develop better treatments has my backing.”
The Future Fund
The Future Fund aims to raise £5.5 million to create the Newcastle University Centre for Childhood Cancer, a specialist children’s cancer research facility at Newcastle University. The fund is a collaborative project between Newcastle University, North of England Children’s Cancer Research and The Great North Children’s Hospital.
How to donate
- Via JustGiving
- Call 0191 208 7250
- Text NCFF01 and the amount of your donation to 70070.
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