This beautiful, kind, happy, gentle, bubbly little boys’ fight started when he was two years old, with trips back and forth to the doctors every couple of weeks. He wasn’t eating like usual, he started vomiting, he was losing weight, lethargic but yet not sleeping through on a night anymore, not wanting to play with his big brother Oscar and he became very clingy. He just wasn’t himself. Despite the symptoms suggesting it was a virus and being given antibiotics for a chest infection, parental instinct knew there was something more.
The Friday before Freddie’s primary tumour was found, he was again at the doctors and whilst performing a ‘percussion’ test on his upper torso, a dull sound was detected near the bottom of his lungs. He was diagnosed with a chest infection and given antibiotics. Over the weekend, the tumour had swollen up so much, that by Sunday afternoon it could be felt and seen under his t shirt. He was immediately sent by his GP to York District Hospital, where an ultrasound scan was carried out. We were prepared for a diagnosis of a severe chest infection or spleen infection. Blood tests revealed Freddie had anaemia, which raised alarm bells and doctors informed us there was a VERY small chance it was a tumour.
Emily and Phillip were taken into a room and their worst fears were confirmed, as the bottom fell out of their world: Freddie had cancer.
The malignant tumour was 10cm in diameter; the size of a large orange, and cancer was identified in multiple lymph nodes.
Freddie was once again immediately transferred, this time to Leeds Paediatric Oncology department at the LGI that evening, where more tests were carried out.
It took over a month to fully diagnose the type of cancer, following the numerous tests required and analysis of the results. During this time Freddie was finding it increasingly difficult to sleep because of the discomfort and pain caused by the tumour and referred pain in his legs.
The diagnosis: Stage 4 Neuroblastoma MYCN amplified chromosome.
This is high risk (the most aggressive because it spreads so quickly) and metastatic, having spread to multiple areas of bone.
This type of cancer offered a 35% chance of survival.
Chemotherapy was started straight away. He needed 80 days of chemotherapy, then would need surgery to hopefully remove the tumour, then a stem cell transplant. Over the course of the next 3 months, the LGI became Freddie’s second home with his mum and dad, while Oscar had numerous ‘sleepovers’ at Granny and Grandads, being taken to and picked up from school, and fed tea by grandparents and a close family friend, to make it as fun as possible, while his mummy, daddy and little brother were AWOL. During the three months, without warning Freddie would be admitted to the hospital with high temperatures and infections as a result of the chemotherapy’s effects on his immune system.
Fortunately Freddie and his mummy and daddy were able to come home for Oscar’s first day at primary school!
The “huggles“ (as Oscar and Freddie call cuddles) were heartwarming and magical every time they were reunited when Oscar got his little brother back home from hospital.
The tumour caused intense pain so Freddie was given morphine until the tumour started to respond to the chemotherapy. We couldn’t hold him because of the pain in his spine from the Neuroblastoma, he would say it hurt when he was sat or standing. Heartbreaking when your little boy is feeling poorly and needs comforting, but is in too much pain to give him a hug!
Freddie’s primary tumour responded to the chemotherapy and he was able to have surgery to remove it and most of the lymph nodes affected by the cancer. His surgery was successful, but due to the 10 hours that the surgery took, he was transferred to the paediatric intensive care unit and his little body was put into an induced coma so that his heart and other organs had chance to recover from the surgery. On returning home he was carefully guarded by his big brother because “Freddie has poorly bits” (referring to his huge scar across his tummy).
At the moment Freddie has been in an isolation ward at the LGI for the last month, having had intensive chemotherapy and a stem cell transplant. Currently he is the most poorly he has been throughout his 6 month fight. As well as the usual side effects he has endured with all his chemotherapy treatment of hair loss, nausea and vomiting, sleeping (except for when he’s vomiting), mucousitis (where the inside of his mouth peels, ulcerates and blisters), lower than normal oxygen levels in his blood and neutropenia (weakened immune system making him susceptible to infection); he currently has to endure ‘VOD’. This is caused by the high dose chemotherapy for his stem cell transplant, resulting in his little body not being able to process fluids, so they are being stored in his abdomen and causing it to become massively distended, compressing on his lungs so that he can’t breathe properly on his own and is receiving oxygen to assist him. His skin on his lips, face, arms and genitals are peeling so much that the bed and his nappy are covered in blood. (Our little boy who was fully toilet trained is back in nappies).
Freddie is due to undergo radiotherapy and immunotherapy.
Even if in full remission, there is a 50% chance of the cancer returning. If this happens, Freddie’s chance of survival is reduced to only 10%. As promising as new treatments in the UK are, the chance of him relapsing from this cruel disease are too high.
The family have decided to make his fight public as a new vaccine has been invented in America which is giving children a lot higher chance of being cured from this awful cancer. The chance of him getting a relapse after receiving the vaccine decreases from 50% to 20%.
While the cost to get him this bivalent vaccine in New York is massive (£250000), the potential cost of him not receiving it are unthinkable.
Please, we ask you from the bottom of our hearts to help our little Freddie as much as you are able.