Tommy’s Story
Tommy was diagnosed with Stage 4 High-Risk Neuroblastoma in April 2024 at just two years old. After 18-months of intensive treatment Tommy is now thankfully in remission, but side effects from treatment have left a lasting impression. Tommy’s mum Nicole shares his story…
Tommy was being sick, had a spike in temperature and generally didn’t feel himself. We put it down to a viral infection, but he started waking through the night, which was unusual for him. Then during the Easter weekend, Tommy was not eating or drinking and seemed very clingy and lethargic. I contacted NHS 24 for advice and we were given an out-of-hours appointment. We were assessed and sent home with worsening advice.
The next day Tommy vomited again so we took him back to A&E. We were assessed and advised it could possibly be constipation. But the Registrar came to review him and her face immediately changed when she felt his tummy.
Things snowballed quickly after this. Bloods were taken, IV access obtained and a Consultant was on the way to see us - it was 10pm so we knew it was something that could not wait.
The Consultant felt Tommy’s tummy and booked an ultrasound scan for the morning. She advised us that the mass was unlikely to be constipation and given his age and other symptoms, it was likely to be something nasty.
It never crossed our minds that it would be cancer.
Tommy had his scan the next day. The radiologist left the room and returned a while later advising the Consultant would see us on the ward. We knew then something serious was going on.
Then our world got turned upside down.
A Consultant met with us who advised that a mass had been discovered in his tummy and it was likely cancer. However, no other information was available as only an ultrasound had been done.
Over the next two weeks, Tommy had his bone marrow sampled, MRI, MiGB scan and a CT scan. We were then told the devastating news that Tommy had Stage 4 High Risk Neuroblastoma, a very aggressive and rare childhood cancer with a 50% survival rate. Tommy's primary tumour was on his adrenal gland with secondary manifestations in his lymph nodes, thorax and spinal cord.
More tests were carried out on Tommy’s heart, hearing and kidneys before having a central line inserted to start a gruelling induction chemotherapy regime consisting of seven volatile chemotherapy drugs with horrible side effects.
As well as suffering the effects of the chemotherapy, our little lion man has undergone numerous bone marrow procedures, blood transfusions, CT and MRI scans, nuclear MIBG scans, G-CSF injections, stem cell harvest, tumour re-section, his first intensive chemotherapy, two stem cell transplants (part of the HR-NBL 2 trial), sternotomy, twelve rounds of radiotherapy, six rounds of immunotherapy as well as, platelets and line replacements.
Tommy also needed an emergency sternotomy following issues whilst re-fitting his central line in his chest. This had a devastating impact on us as a family as it happened just six days after we were discharged following Tommy’s second stem cell transplant. We were back in hospital for another six and a half weeks.
Tommy is now thankfully in remission and on DFMO treatment. We were very lucky to receive this treatment free on the NHS despite not yet being freely available within the UK, as it is still awaiting approval at the European Medicines Agency.
Treatment has left its mark. Our little warrior has lost his high frequency hearing which has resulted in him having hearing aids fitted. This is a direct result of the chemotherapy used to try to reduce his tumour. He has also experienced a number of other side effects including; hair loss and sickness.
He has amazed us all with his resilience and strength, keeping his cheeky smile and mischievous nature, making us so proud of how he is coping daily and taking it all in his stride.
Even after completing this intensive course of treatment, there is still a very high risk that Tommy could relapse. That's why we need to continue to fund research. Neuroblastoma UK is an amazing charity that I had never heard of prior to Tommy's diagnosis. Our children deserve better funding, better research and better outcomes and this cannot be done without the work done by Neuroblastoma UK.
A big thank you to Nicole for sharing Tommy’s story.
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