Delilah’s Story
Delilah was just three years old when she was diagnosed with neuroblastoma after being misdiagnosed with growing pains and constipation. One year later her father Harry shares her story…
Delilah was having lower tummy pain and was limping so we decided to take her to our GP, who originally suspected growing pains and constipation, and prescribed laxatives. Our instincts told us otherwise though and after multiple GP and hospital visits, coming up with the same answers and treatment, I finally had enough and refused to leave our local hospital until they found out the real reason for her pain.
After a few days of being an inpatient Delilah’s blood tests finally showed high infection markers. As a result they decided to give her an ultrasound. This was when they realised something wasn't right, so further investigations were made and eventually they decided to send us to Addenbrooks where we got our official diagnosis.
It took 6 weeks from our first visit to a GP to finally come to the diagnosis of Stage 4 High Risk Neuroblastoma.
Delilah had an 18cm tumour behind her kidney.
Very soon after receiving Delilah's diagnosis they gave her some emergency chemotherapy which was followed relatively quickly with rapid COJEC which lasted for 80 days. Delilah also had to have Bilateral Ureteric Stents put in because of how big the tumour was and how much it was pushing on her kidney and bowels. Then Delilah got randomised to have two lots of high dose chemotherapy. The first one was done at Great Ormond Street, the second at Addenbrooks. Before her chemotherapy she also had to go through two stem cell harvests. Luckily we managed to have Christmas at home which was amazing for us as a family.
Delilah then received radiotherapy at UCLH, which was the fourth hospital she had been to throughout her treatment. She had twelve rounds of radiotherapy where she had to be under GA every single time, which is never nice to see.
Due to the intensity of treatment Delilah has also had 'Overy Cryopreservation' a surgery to remove her ovaries and have them frozen and stored so that there is a small chance she can have the option to have children in the future.
She is now receiving GD-2 (an immunotherapy) which should last until the end of September where they will do all the scans and tests on Delilah to find out how everything is.
Since diagnosis we cannot fault any staff, from consultants to doctors, nurses, play specialists and even 'Danka' she's the chef at Addenbrooks and is amazing with all the children's appetites!
I have not been alone in what I can easily say has been the worst time of my life. Delilah's mother has also been through all this where we have shared our time with Delilah as equally as possible with one staying overnight in hospital with her and one being at home with Delilah's six-year-old brother Arthur. It has been incredibly draining for us as parents, especially as we aren't together, but through all this you somehow find a way to put on that brave face for our special girl who is so brave.
You wouldn't even think she was going through hell right now the way she takes each day with a smile on her face, singing songs and playing games.
I haven’t been at work since last May so I could focus on looking after Delilah, but recently had to go back due to finances, which makes things even more difficult and adds something else to the mix to worry about. Luckily they are really good with me still leaving for appointments but I am having to use annual leave if I stay overnight with Delilah when she is an inpatient. Addenbrooks is also over one hour's drive away from home and every single scan, appointment, and check up is done there which is also tough. Sometimes it means waking Delilah up in the mornings and putting her straight in the car to take her to an appointment. Nothing is ideal in this situation but you just find a way.
It's extremely hard to just sit and watch my little princess going through this and I can't physically do anything, I know it's cliché but like any parent would say, If I could swap places I would in a heartbeat - no child deserves to go through this.
Delilah is an amazing girl, who loves singing frozen and k-pop demon hunter songs, and she adores her brother so much. She is fighting this with everything she has. Myself, her mother and her family could not be any prouder!
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