Told by his Mum, Ann.
Dominic is now 10. When he was just 7 weeks old he had a bleed on the brain. It was terrifying. It took two scans to determine that he had a glioblastoma, grade 4. It’s one of the most common types of brain tumour in adults, (so I discovered later), but extremely rare in babies. When they finally told me what he had, and what he would have to go through, I was devastated, but all I kept thinking is – just don’t let him be in pain.
Dominic had two operations in those first few weeks. The first time they tried to remove the tumour it bled so much the surgeon had to stop. He just managed to get enough for them to do a biopsy. I was told he would need to go through 8 cycles of chemotherapy over 2 years. But the tumour was growing, and fast, so after the 2nd cycle the surgeon tried again to remove it. I will never forget going into the resuscitation area to see him after his 5 hour op. I knew if they weren’t able to remove it this time then there would be no hope. I saw the surgeon walking towards me, he was smiling, and he just said, “I’ve done it.”
But removing the tumour was not the end of the story. The tumour has left Dominic with a visual impairment on his right side and he has limited hearing. He has a hearing aid. He is also having to take growth hormones. But perhaps the hardest legacy of the tumour and the treatment has been the impact on Dominic’s mental health.
Dominic suffers with depression and acute anxiety. He is just a child, and he is loving and sensitive. But he carries the weight of the world on his shoulders. He is constantly worrying about the rest of the family. When his Nan was diagnosed with cancer at Christmas, he thought it was somehow his fault; that if his cancer had come back then his Nan wouldn’t have to go through it. He worries a lot about his own tumour returning. Every time he gets a headache, he thinks the worse.
When he was 6 years old, he suddenly lost the use of his legs – he literally couldn’t walk. I was terrified. But we eventually found out that it was all trauma related. His acute anxiety was getting the better of him. And then couple of years ago he temporarily lost his sight, he was completely blind. We all panicked. Especially Dominic. But again, we were told it was the anxiety manifesting itself.
As a Mum, one of my biggest struggles has been getting him the support he needs at school. He has always struggled with school – he just wants to be normal, but he stands out; his hearing aid, the fact that he is so emotional. He has taught himself to control it now, but he used to cry all the time at school. His school have never accepted that Dominic needs extra help. They’ve said things to me like “It’s all over now”, “He’s fine” and “It’s all in the past”. They’ve constantly neglected to advise new teachers about Dominic’s background and needs, claiming that he didn’t have any. They told me I would never qualify for extra help.
Success Charity gave me the help and support I needed to get Dominic an Educational Health Care Plan. It was a battle and without that support I know I’d never have got there. They told me what I could do, what steps I could take to get Dominic the help he needs. It has been a relief just knowing that there are people out there that understand. It can be very isolating living with the aftereffects of Dominic’s tumour.
When Dominic was a baby all I was focussed on was getting back to ‘normal’ – but you soon realise that you will never get back to the ‘full’ normal, and it helps to know there are people who you can turn to for help when things get tough. Sadly, people just don’t understand that children like Dominic are left with huge emotional as well as physical difficulties. Dominic’s tumour may be gone but it’s left him with a legacy of hurt.
