June 23rd 2020 and Luca was 15 weeks old. Nothing could have prepared us for the heartache to come.
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. We were told that it was inoperable as it was entwined within his spinal cord. Due to the location of his tumour, surgery was and still is deemed too dangerous. Surgery isn’t always an option for children with solid tumours.
The days that followed are a blur. The one thing I will always remember is the kindness from the staff on Owl ward where Luca and I spent the next three weeks. The kindness from nurses, health care assistants, play therapists and the Noah’s Ark Charity team got us through, especially because I had to be on my own due to COVID-19.
I will always remember the small room and Luca’s oncologist’s face when she told us that Luca was treatable but incurable. She told us that Luca may only have weeks, maybe months left to live. On the 30th of June, Luca had his biopsy followed by a short stay on the critical care unit. Shortly after this, we were introduced to the palliative care team. Luca began chemotherapy but became more and more unwell. He then had a seizure and lost all movement in his limbs. He was in an extreme amount of pain and discomfort. hHs little body was the shape of a banana.
Luca was sent for an emergency MRI which showed that his tumour had grown in all directions. Luca’s dad, was advised to stay in the parent accommodation that night and Zac, Luca’s three-year-old brother, was allowed on to the ward the next morning. We made it clear that we wanted Luca at home when the time came. The team on Rainbow Ward were absolutely amazing and arranged an ambulance and a nurse to accompany us home later that day. The play therapists rallied around to make sure we had all of Luca’s beads of courage.
We were heartbroken. Cancer charity, LATCH, organised a photographer and a lady to do casts to come to our home, we signed a do not resuscitate order…..no-one thought he’d make it through that weekend. However, a week later Luca was still with us and what’s more he’d started improving.
Finally, five months later, Luca’s pathology report was back. It said that his tumour might be a CNS embryonal tumour, but most importantly they had found a gene mutation within his tumour called an NTRK fusion and there was a targeted drug available on the NHS for Luca. If Luca’s tumour is a CNS embryonal tumour with an NTRK fusion then he is the first ever recorded case worldwide.
Luca is now three-years-old. He completed a year of chemotherapy between July 2020 and August 2021 but sadly his cancer started growing again and he had to begin the targeted drug, Larotrectinib, earlier than hoped. He is currently still taking this drug twice a day every day. He has very little side effects and is able to live a relatively “normal” life.
Since Luca has been on Larotrectinib we manage to enjoy more time at home. However, now and again Luca throws a curve ball into the mix and we end up back in Noah’s Ark.
Luca became critically unwell in April 2022 and we ended up staying a month in hospital. This is where the wonderful Noah’s Ark Charity came in and helped put a smile back on our faces after a very difficult few weeks between critical care and Rainbow ward. They surprised us with some treats. Something as simple as a wooden train for Luca and some cupcakes for me really did make the biggest difference, Those cupcakes got me through the weekend!
If you like to read more about Luca please follow his Instagram page where the family continue to raise awareness – https://instagram.com/luca_fighting_for_life?igshid=OGQ5ZDc2ODk2ZA==