Tommy's Story

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Meet Tommy and his family

On Boxing Day, 2022, two-year-old Tommy came down with a temperature and began struggling to walk. His mum, Leah, explained how out of character his behaviour was:

‘He was staggering around. It was like he was on a cruise ship. He kept falling over and just couldn’t balance unsupported.’

His parents, Leah and Michael, took Tommy to the doctors the next day and were then sent to their local hospital. Doctors there struggled to diagnose Tommy, as the various scans and tests they performed all came back as clear, but his symptoms persisted.

‘It was really difficult because his condition is so rare. Doctors went down the route of brain MRI and CT scans, but everything was coming back clear. They originally diagnosed him with Cerebellar Ataxia. He’d tested positive for flu whilst in hospital so it was suggested he could maybe have had some swelling around the brain as a result of that. After a few days we were sent home but his symptoms never fully went away. I knew something wasn’t right.’

Later in January 2023, the family were referred to the Royal Victoria Infirmary Hospital (RVI) where the doctors were incredibly thorough and eventually diagnosed Tommy with a rare condition called Opsoclonus Myoclonus Syndrome (OMS), which is caused by a Neuroblastoma (tumour) near his spine.

‘We really wanted a diagnosis because there was obviously something wrong with him. I’m a bit of a worrier and always prepared for the worst-case-scenario, but I didn’t think it would be something as bad as that. Not a tumour!’

Although Tommy’s tumour is small, it is located on a blood vessel so it is not being removed. At present, Tommy’s parents were told by their oncology consultant that it would be more risky to operate than to use the ‘watch and wait’ approach. Tommy was having an MRI scan on the tumour every three months to make sure there are no changes, but this has recently been increased to every six months due to its stability.

The symptoms Tommy experiences are a result of the OMS, which is secondary to the tumour. He is also on regular steroids for his symptoms, however, this makes his behaviour extremely challenging.

‘The OMS heavily affects his behaviour but we’ve got to a good place at the moment with his mobility and movement. He can now walk and feed himself, all the things he lost the ability to do at the beginning but his condition causes these rage attacks that are very challenging for us to manage. Just to go out and do normal family things is really difficult. You feel on eggshells all of the time, waiting for the next tantrum.’

Even a task as simple as walking to the corner shop you are on edge because at some point, he might just decide he doesn’t want to, fall to the floor and refuse to walk and he will not back down. I have to try and decipher whether he’s being stroppy because of his age, or if it’s a relapse of his condition and it’s so hard.

Leah, Tommy's mum

Coping with the pressures of Tommy’s diagnosis has impacted Leah’s mental health. Leah explained that the family have some support from family and friends and Tommy has an especially strong relationship with his Nanna and Grandad, but it is hard when others around them move on and do not have to live through the challenges they continue to face.

‘It’s hard because everyone’s there for you at first, because it’s such a shock, but then their life moves on, and you’re sort of stuck in this horrible situation unsure on how to move forward.’
‘It feels like there’s not an ending point in sight, because obviously the tumour can’t come out. As a parent, you just want closure, but there’s no closure, and I find that difficult.’

Tommy’s condition has also had an impact on Leah and Michael’s older son, Harry, who is six.

‘Harry came home from school one day and just cried and cried. He told me he’d rather stay at school than come home because Tommy is so horrible to him. It broke my heart.’

Leah describes the brothers as very close, but due to Tommy’s behavioural difficulties, he gets angry when playing with his brother and the difference in their temperaments leaves Harry feeling upset.

‘If all of Tommy’s shouting gets to me, of course it’s going to affect Harry as well - he’s six!’

Leah self-referred to Rainbow Trust after leaving hospital, as she felt as if they had no direct support as a family for Tommy’s condition. The family then started receiving support from Family Support Worker Emma.

‘I feel like we were sent home from hospital, and we just felt lost. We had been given this awful news and did not know how to move forward as a family. I was desperately looking for something to help us understand what was going on and what to do next.'

Emma provides emotional and practical support for the family, allowing Leah time to talk to someone about her worries, advocating for the family, and supports Leah taking Harry and Tommy out of the house.

‘Emma is someone I can ask anything to when I feel like I’ve got no where to turn. I know if I need to go somewhere with Tommy and I’m anxious about him becoming difficult and overwhelmed she’ll come with us and reassure me throughout. She’s come to appointments with us at times and it just really helps having another pair of ears to listen and take on board what is being said.’
‘Last week she came to an appointment with us, and occupied Tommy so that Michael and I can properly listen and take things in without distractions.’

What Leah values most is Emma’s ability to advocate for her, Tommy and their family.

‘I feel like sometimes, as the mum, I don’t know where to turn or feel like ‘I am being a nuisance’, but Emma always uses her knowledge and does her best to advocate for us and helps us get appointments and support when we’re really struggling.’

Tommy started nursery at the beginning of the year, and this has been a challenge for the family. He has found separation from Leah incredibly difficult and is struggling to adapt to new routines inside school. Emma is providing support for Tommy in his school classroom once a fortnight to help him settle in and to help him feel more reassured by having a familiar, friendly face there when he is finding things difficult.

The family have also got involved with fundraising challenges since Tommy’s diagnosis. In September, spurred on by Childhood Cancer Awareness Month, Leah and her Mum completed 10,000 steps a day challenge raising funds for Rainbow Trust.

‘We wanted to give something back to a charity that has continued to give us invaluable support that we will be forever grateful for.’

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Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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