Hello, I’m Denvah. I’m from the North East of England from a pit village called Hetton le Hole.
I live at home with my Mammy, Daddy and 3 big brother’s Strand (17), Davis (15) Maverick (3). I also live with our 3 small dogs, Riio, Pacco and Xenna, 2 cats MinnieCat and MickeyCat and our Parrot Percy. I’m a normal little girl and I love playing with my older brothers, I love to eat and I love to climb.
I was diagnosed with Bilateral Retinoblastoma just 2 weeks after my 1st birthday.
My mammy and Daddy noticed I developed a squint in my right eye at around 10 months. They took me to the GP but they didn’t seem concerned and told my mammy I was ok.
My 2 older brothers Strand and Davis have worn glasses since they were small and needed to ear patches, glasses and use eye drops from an early age so my mammy told the GP this and said she would like me to be referred to the Eye Infirmary to be checked out.
The GP agreed but didn’t put me through on an urgent referral so my appointment took over 10 weeks to come through.
Around my 1st birthday my mam had noticed that there was something else wrong with my right eye, it seemed to have a white pupil when light shined on it but she wasn’t sure so waited till my appointment with the eye infirmary.
At the eye Infirmary the optometrist examined my eyes and put drops in them, I was sent to a room to let the drops work then me and my mammy were called into another room, some lady looked in my eyes then another lady came in and sat my mammy down.
My mammy started to cry and I heard the lady tell her that I had tumours in both eyes and my right eye was very bad and I was already blind in my right eye.
Denvah was diagnosed with Bilateral Retinoblastoma, a very rare form of eye cancer and in both eyes.
Because its in both eyes this means its hereditary however Denvah’s mam and dad don’t have it so it means the gene must have started with Denvah, when she was conceived, put simply “a simple glitch”
The tumours in Denvahs right eye was already so bad that she was already blind in this eye and the hospital want to remove it and fit a prosthetic eye. Her left eye can be saved but treatment had to be started immediately.
There are only 2 hospitals in the UK that can treat Denvah, London Royal and Birmingham Children’s Hospital.
Denvah was immediately referred to Birmingham and by the end of that week her family booked into a hotel, made their way down and met with the consultants.
Denvah was put to sleep so they come get a better understanding of the tumours, they were planning on removing her right eye as there was a mass of tumours, one on top of the other however her left eye was worse than they initially thought and if treatment and chemotherapy wasn’t started immediately then she would loose the sight in her left eye too.
There was no time to recover from surgery from removing her right eye so to date her right eye is monitored and removal will be discussed at a later date.
For Denvah’s left eye she had 3 tumours, 1 up in the corner that wasn’t causing any problem but the 2 in the front were not as good, as they grew her sight became restricted and intime without treatment she would become blind in this eye too.
A plan was put in place for chemotherapy to start immediately at Newcastle’s RVI and treatment of lazer therapy and cryotherapy at Birmingham Children’s Hospital.
3 days later Denvah was admitted to RVI, she was out under general anesthetic again to have her port o cath fitted for her chemotherapy to go straight in to her central vein, whilst asleep she was under went a lumber puncture to make sure the cancer hadn’t spread to her spine, an MRI to make sure the tumours weren’t touching her optic nerve and the cancer hadn’t spread to her brain and also a bone marrow biopsy to check it hadn’t spread to her bones.
Thankfully all 3 came back clear an she was able to start her chemotherapy the next day
Denvah will receive 6 rounds of intense chemotherapy from the RVI into her central line and treatment from Birmingham. After this more plans will be put on place for more treatment (her treatment will go on for around 3-4 years) and more chemo.
She’s such a resilient little girl and is already very popular on wards 4 and 14, you will often find her walking around the wards whilst receiving her chemotherapy babbling away to the nurses and other children, her daddy and mammy are never far behind her pushing her IV pole.
Denvah’s left eye has showed an amazing response to the chemotherapy and she already has lots of sight returned in that eye.