Luca's Story

June 23rd, 2020, a date etched on my memory forever. Luca was 15 weeks old. Nothing could have prepared us for the heartache to come. Not only did we have the pandemic to deal with, but we had the most heartbreaking diagnosis and prognosis.

I'd first taken Luca into our local hospital at 5 weeks old, it took ten weeks of pushing and fighting until we were finally seen and even then it was by the wrong department after Luca was misdiagnosed.

At 15 weeks old, our brave little boy was diagnosed with a Grade 4 Spinal Cord tumour. Luca's tumour is entwined within his spinal cord, inoperable and therefore incurable.

The days that followed are a blur. However, there is one memory that will always stay with us and that is the words spoken by Luca's Oncologist “he may only have weeks, maybe months left to live, but we are not talking years.” In the blink of an eye, the future we had planned was torn away.

30th June 2020 Luca was taken to theatre for a biopsy, followed by a short stay in ICU. Shortly after this, we were introduced to the Palliative Care team.

Luca began treatment, but became critically unwell within days of his first dose of chemotherapy. Luca had a seizure and lost all movement in his limbs. He was in unimaginable pain, unable to move his little body, his eyes filled with pain and fear.

Luca was sent for an emergency MRI, results showed that his tumour had grown in length and width, leaving very little room for his spinal fluid to circulate. Luca's Dad was advised to stay in the hospital that night. Zac, Luca's three year old brother was allowed onto the ward the next morning, when this was allowed during a global pandemic we knew Luca was critical. Our only wish was to take Luca home to pass away surrounded by those who loved him.

The nurses, HCA's and play therapists on Rainbow Ward went above and beyond to arrange an ambulance to take us home later that day. Luca was so unwell we needed a highly trained oncology nurse to travel with us in case he was to deteriorate on the journey.

We were heartbroken. A photographer come to our house to take final photos and a lady to do hand and foot casts for us to treasure. We signed a do not resuscitate order... no one thought Luca would make it through that weekend.

.....

A true miracle. To everyones surprise a week later, Luca was still with us, and what's more, he'd started making small improvements. We will never truly understand where Luca gets his strength from.

Finally, five months after Luca's biopsy, his pathology report was back. Results were inconclusive, but suggested that his tumour could be a CNS Embryonal tumour.

Not having a clear diagnosis broke us. There was no protocol to follow, but there was a glimmer of hope when genetic testing showed a gene mutation within Luca's tumour called an NTRK Fusion. More hope when we were given the news that there was a targeted drug available on the NHS.

If Luca's Tumour is a CNS Embryonal Tumour with NTRK Fusion like his pathology report suggests, it is the first recorded case worldwide.

Luca is now nearly six years old. He completed a year of chemotherapy between July 2020-August 2021. Sadly, in August 2021 at 18 months old, our hopes of giving Luca's body a break from treatment came crashing down. Luca's end of treatment MRI showed that his cancer had started growing again. We had no option but to immediately start Larotrectinib, the targeted drug targetting the mutation within his tumour. Luca would have to take this drug twice a day, every day. Luca is the first child in Wales to be given Larotrectinib, there was and still is very little knowledge about this drug.

Between August 2021 and March 2022 Larotrectinib allowed Luca to live a relatively normal life. That is until late March 2022 when Luca became critically unwell. We believe his body wasn't absorbing the targeted drug, his tumour swelled leaving Luca fighting for his life once again, he ended up in Intensive care with surgeons on standby and doctors telling us 'the next 24hrs will be critical, this could go either way'. Again after a month in hospital with many scares and complications somehow Luca found the strength to pull through.

Fast forward to 2026 and Luca's cancer is still stable, he takes Larotrectinib twice a day every day. This miracle drug has given Luca another lifeline and given us the opportunity to make precious memories as a family. We will continue to count our lucky stars and make memories for as Luca is well enough to do so. We hope that this is forever ♡

Thank you to Ben Saunders foundation for this wonderful break away