Connor’s story, as told by his mum Ruth

“Tom’s Trust has shown the need for mental health support. How can you stay strong and fight for your child if you’re broken inside and see no way out?” Connor’s mum, Ruth

Connor, now 17, loves playing on his Xbox, watching his brother play football, and clothes shopping. He is described as strong, funny and so loving by his adoring mum, Ruth. And at the age of three Connor was diagnosed with a life-changing brain tumour. He was treated at the Great North Children’s Hospital with surgery, chemotherapy, and radiotherapy. Surgery left him with a condition called Posterior Fossa Syndrome.

Whilst treatment has been successful in saving Connor’s life, chemotherapy resulted in hearing loss in both ears and radiotherapy has left him with learning disabilities.

He will need support throughout his life to maximize his independence and to help him make the most of his strengths. Neuropsychological assessments from our Tom’s Trust clinical psychologist have supported his team and family to consider what interventions or strategies might benefit him most.

Connor’s story, as told by his mum Ruth:

“On 18^th April 2011 we received the most devastating news that would change our entire family’s life. Connor had a brain tumour. The day after finding out, my beautiful baby boy went in for an operation to remove a tumour from his brain.  It was the longest five hours of our lives. We were told about the possible side effects but just wanted him to have a fighting chance.

“When Connor came out of his operation, he was transferred straight to ICU where we were told that all of the tumour could not be removed as when the surgeon (who was amazing) tried to remove it from his brain stem his heart rate was dropping so it was safer to use chemotherapy and radiotherapy to remove the last of it.

“Connor had developed Posterior Fossa Syndrome following the operation and we were told by his consultant that it was one of the worst cases she’d seen. My baby was now paralysed from head to toe, could not talk, eat or do anything that he was previously able to do.

“We were told Connor’s tumour was Medulloblastoma, which is a rare childhood brain cancer. There were two options given to us for treatment. He could have the under three treatment or we could go for the over three treatment which unfortunately carried worse side effects but was the best chance to cure Connor. We chose option two. Over the next few months, we stayed in hospital with Connor where he received the best possible care, physio, chemotherapy, radiotherapy and help with feeding through a tube.

“Connor went through approximately 1 ½ years of treatment, slowly beginning to walk, talk and feed himself again (but never like it was before).”

Mental health and Tom’s Trust support

“I had two other young children at home at this time who I missed, even though I knew they were cared for. I was broken, my son was writhing in pain, getting sore from not being able to move and my other children missed their Mam and brother.  My mental health took a nosedive.  Sarah, our Tom’s Trust clinical psychologist, was there to help.

“Sarah sat and listened, gave advice and reassured me that all of my feelings were normal around this time.  She helped me see the light and that things would get better. She reached out and offered help to my other children and husband and made sure none of us felt alone.  She was a godsend.

“One thing that many could never understand is the mental torture you go through when your child is sick, there’s self-hatred around whether you did something wrong then because you feel like you’re thinking about yourself. There’s guilt, why my child, why not me? And for the treatment options chosen and side effects he will have to suffer.”

Connor’s future

“In 2023 we were dealt another blow. Connor became unsteady and just not right after so long of being well. We took him to the hospital where we were told that he’d suffered a stroke as a result of his treatment all of those years ago. Again, Sarah to the rescue, this time for us and Connor as he was struggling. Connor doesn’t like to talk about his feelings, so she had a job on her hands. Sarah has an amazing way with people, and he opened up to her.  She also carried out a new cognitive assessment to see how much this new illness had affected him. It was found that his learning problems had got worse. Sarah sourced help within our area and supported with college.

“Connor is now studying life skills at college.  Due to his learning difficulties, he was unable to gain GCSE’s but is making the most of trying to give himself some independence. He will need to be supported throughout his life and will be unable to live independently. As a family we will be here to help and support him and keep encouraging to fulfil his dreams (at the minute that is being a gamer). Connor is not going to be able to drive so myself, his dad and siblings will be his chauffeur (which he loves). Connor uses a wheelchair due to poor balance, mobility and tiredness and we are looking into some wheelchair sports for him.”

Tom’s Trust support

When asked about how the support from Tom’s Trust had helped Ruth, Connor and their family, Ruth added:

“Tom’s Trust has shown the need for mental health support. You see a sick child and automatically think of them. What you don’t see is the parents struggle to come to terms with it, deal with the new ‘normal’ as well as the fear that their child will not get better. Tom’s Trust has shown that all these feelings are ok, but also need addressing. How can you stay strong and fight for your child if you’re broken inside and see no way out? This extends to siblings too and Tom’s Trust have nailed it in all these areas. Tom’s Trust sibling toolkit has been amazing for Connor’s siblings, even after all of this time since diagnosis.”

Ruth’s advice

“If faced with this path, my advice would be to stick together. It’s hard and testing but easier with two. Trust your gut, you know your child better than anyone. Don’t ever google anything, ask the people who know for reputable websites to look on. Your world will feel like it’s falling apart but your child needs you to stay strong and fight for them. If you struggle, ask for help, there’s no shame in it. Lastly, love them with all of your heart.”