In 2020, Luca Evans, at just 15 weeks old was diagnosed with an inoperable Spinal Cord Tumour that would change his and his families lives forever.
June 23rd, 2020, a date etched in our memory forever. Luca was only 15 weeks old. Nothing could have prepared us for the heartache we were about to endure. Not only did we have a global pandemic to deal with, but we had the most heart-breaking 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, therefore deemed inoperable.
The days that followed are a blur, filled with tests, difficult conversations and tears. 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, he had a seizure and lost all movement in his limbs. Luca was in unimaginable pain, unable to move his little body, his eyes were 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. Paul, 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 an Oncology nurse to travel with us in case he was to deteriorate on the journey.
We were heartbroken, I will never understand how we got through these first few weeks. 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 everyone's surprise a week later, Luca was still with us, and what's more, he'd started making small improvements. Luca was on a cocktail of drugs in a bid to keep him as comfortable as possible, everyday he showed a little more improvement, slowly regaining movement in his legs and right arm.
Until one morning he woke us up with a beautiful big smile, the first smile since before his biopsy.
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 an in fact 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 targeting 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 again. To this day we don't know why Luca became so critically unwell so quickly, but we believe he may have had a stroke within his tumour or his body wasn't absorbing the targeted drug, we will never know. Luca's 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 has been stable for four years. He takes Larotrectinib twice a day every day. His most recent MRI results show that the cancer is stable, but they have shown that Luca has two unexplained fractures, one in his spine and one in his left hand. At the moment his medical team are investigating why this may be happening, there is a worry that Larotrectinib, the drug that is keeping Luca alive may be causing his bones to weaken. Luca may need to start bone strengthening treatment, however this decision has not yet been made, we have a few more appointments and discussions to have first.
Although we are currently experiencing a bump in the road, this miracle drug has given Luca another lifeline and has given us the opportunity to make precious memories as a family.
We will continue to count our lucky stars and make memories for as long Luca is well enough to do so. We hope that this is forever!
