Larayia-Faith

Larayia-Faith was weeks away from her second birthday when she was diagnosed with high risk localised paramengeal embryonal rhabdomyosarcoma.

Larayia-Faith was born at 32 weeks and spent four weeks in NICU. She was always such a happy baby. Development was delayed which we just put down to prematurity. While she was learning to stand she would cry like she was in discomfort. Having been through an Ehlers-danlos diagnosis with her siblings we wondered if it could be the same. I contacted the GP. All communication was done via phone or video call unless urgent as it was the beginning of Covid.

For three weeks they hinted it was a urine infection. Larayia-Faith went off her baths which she loved before. By the fourth week she had a little lump in front of her ear.  She was given antibiotics for an infection but after four days there was no sign of improvement and we pushed for a face to face appointment. The GP effectively ruled out cancer, questioned mumps but wasn’t convinced. We were told it was a silva stone and that if it hadn’t resolved by itself to return in July (It was May).

We also decided to visit A and E who were also unsure what was wrong. I explained I had looked it up and mentioned cancer, mumps and silva stone. They followed the doctors theory of silva stone but one doctor was not convinced. After bloods and a scan which didn’t show anything, we were sent home and told to expect a call. An appointment was booked for the following Tuesday with the ENT team.

However, she got worse over the weekend and at the appointment on Tuesday, a decision was taken to blue light us to the HDU at Southampton hospital. It was here we were told that it was a tumour. The next morning Larayia-Faith under went a biopsy and had a Hickman line fitted. She was kept sedated over night and had a lumber puncture and bone marrow the following day before bringing her round.

We were told it was an aggressive cancer that was heading towards her brain. Her right nostril was blocked by the tumour and her airway was also being compromised. She started chemotherapy the next day but in the early hours of the following day she had a respiratory arrest. Thankfully the family next to us hit the emergency button and the nurses worked extremely hard to bring her back to us. Larayia-Faith was incubated, heavily sedated and then had a three week stay in PICU. She was very quickly named miss sassy pants because she would fight through the sedation especially when she heard my voice. A decision was made to put a tracheotomy in because of her airway being so comprised. This caused great anxiety but was truly the best decision, it was strange watching her having to learn to eat and drink again, as well as not being able to hear her laugh or cry.

Larayia-Faith continued to receive high risk chemotherapy with the plan to have six weeks of chemotherapy in London. Unfortunately, her MRI before radiotherapy showed two new tumours which changed her protocol, she now had to go on to intense chemotherapy and was given a less than 30% survival rate. Larayia-Faith always lived up to the sassy pants nickname needing in total four Hickman lines and two PICC lines fitted, one of her lines split during chemotherapy and as the nurse clamped it she got chemotherapy in her eye. She had a gastrostomy fitted, she learnt to talk slightly over her trache and was a little cheeky.

Larayia-Faith received six weeks of radiotherapy in London as well as her chemotherapy. She then had a year of maintenance treatment. Thankfully,

there has been no evidence of disease for the last two years. She has received another other diagnosis of cerebral palsy and global development delay but despite it all she continues to smile and make others smile everyday.