Again upon getting him to the hospital they assured us it was just mumps or a bad ear infection and sent us away with antibiotics. So we went trusting the doctor’s opinion. On the weekend he went to his normal football class where we noticed he wasn’t himself and he couldn’t really coordinate his legs properly. 

We took the decision to go back to the same hospital to insist further investigation was done. In total six doctors including specialists told us we were crazy and it was just an infection that would go away.

As parents we had a gut instinct that it was something more and we fought to get a second opinion at Birmingham Children’s hospital. 

They didn’t know what type but he had a golf ball sized tumour in his skull. We later found out that it was Ewing sarcoma. 

I can’t begin to tell you how devastating it is to hear this news, you have so many questions as a parent, the main one being will my child make it. Jesse had been born in lockdown and life was just getting back to normal so this was a cruel twist of fate.

I’ll never forget the first day of walking onto the cancer ward in Birmingham and seeing all of the poorly children. It is just every parent’s worst nightmare. We knew Jesse had a tough schedule of 14 rounds of chemotherapy ahead of him to give him the best chance of survival. 

I don’t think anything can quite prepare you for that actually becoming your new normal. 

At the beginning of treatment Jesse was given very low odds of survival due to the complicated nature of where his tumour was situated. It was inoperable so our only hope was that his body responded well to the chemotherapy. 

I remember we were completely dreading the start of chemotherapy but anyone that has met Jesse knows that he doesn’t do anything without a big smile on his face.

Being in hospital was definitely not doom and gloom he was always making the nurses laugh and winning them around with his infectious personality. 

It was during his treatment that he developed his love for superheroes and he would spend hours playing with them in the hospital. He still refers to himself as a superhero (he’s definitely one in our eyes).

After his chemotherapy he was lucky to qualify for proton therapy at The Christie in Manchester. We spent six weeks living there and he would go under general anaesthetic every day to have his treatment.

We got told this would be tough on him but he defied all the odds. He would wake up from treatment and ask to go and play on the park, his resilience was admirable. 

Upon finishing treatment unfortunately Jesse was left with a residual mass, this is part of the tumour that couldn’t be broken down by the treatment.

This mass will be monitored every three months with scans for any signs of growth for the next 5 years.  

We have to live in hope that life is now kind to our little boy and that it won’t return but the reality is Ewing sarcoma has an extremely high recurrence rate. 

We really wanted to work with the Bone Cancer Research Trust to raise awareness of these terrible cancers.

We hope by sharing Jesse’s story it also raises awareness as the stats for early diagnosis are so poor. 

We thank you for taking the time to read Jesse’s story and hopefully your donations can help fund much needed research into better treatment options. 

- The Small family