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Hello my name is Denvah.
I was diagnosed with Bilateral Retinoblastoma 2 weeks after my 1st birthday.
Retinoblastoma is a rare form of eye cancer affecting around 40 children every year.
I have lost my sight in my right eye and chemotherapy has saved my sight in my left eye
I'm due to have my last round of systemic chemotherapy on Wednesday 1st April.
My left eye has responded amazingly and the Dr's are very happy with it, my right eye, they are still unsure.
They are confident that lazer therapy every 3 weeks for the next couple of year will keep the cancer under control in my left eye, and the tumours will slowly die leaving me cancer free in that eye with good sight.
My right eye they have no idea how it will respond once the chemotherapy stops and at that point they would need to consider enucleation before it would become a threat to my life, the Dr's have assured my Mammy and Daddy that they would remove my eyeball before it ever got to that stage and they have also mentioned chemo injections directly into my eyeball as another option in a bid to save my right eyeball.
The injection, they have mentioned can only be given in Birmingham Children's Hospital , I am currently receiving systemic chemotherapy In RVI Newcastle so it means more travel and possibly longer stays but my Mammy and Daddy will do what ever it takes to give me the chance of saving my eyeball, my sight won't ever return in this eye but my mammy is confident if we can save my actual eye that In the future there will be some technology that can give me sight in that eye .
This might be wishful thinking, it might just be my Mammy being hopeful but if there is a glimmer of hope we will cling to it.
It's been in the back of my Mammys mind for a while, what if the chemo injection doesn't have enough impact to kill the tumours in my right eye either?
My Mammy found out about something in USA, that has amazing results as a last alternative to save the eyeball of a child with Retinoblastoma.
A chemo plaque, something really similar to a contact lense that would be placed directly into my eye. The process is lengthy and we would need to spend time in the USA
On Monday my Mammy finally had the call she was waiting for, the Dr in the US called to say they had looked at my case in their consultant meeting last week and if the chemotherapy injections directly into my eye don't work they would be happy to take me on as a patient should the need arise.
I really hope the injections directly into my eye work but we have the safety net of knowing there is another option out there if not.
My Mammy has spoken with their international office to put the ball in motion, should we need it and to obviously find out the only thing that could potentially stop us.... The cost!
They will pay for the initial assessment face to face then after that its for us to take care of
Flight, Visas, The procedure, travel whilst over there, food and general living. We would take Maverick my 3 year old brother with us and my 2 older brothers Strand and Davis will stay here so the cost of living in the UK will also remain...
Its just all what ifs and maybes at the moment but we know that if we do need to go we will have a matter of weeks to set it up and get there otherwise I will loose my eyeball.
From my mammy.....
We already got a bank account for Denvah's Diary, it hasn't been set up as a foundation or appeal yet but going forward that's our plans.. To make sure Denvah is ok and she has everything she needs and then to help other family's of children with Retinoblastoma as well as raising awareness.
So now we patiently wait for the email.
We will always do everything we can to help our baby and if that means asking for more help from you lovely lot then thats what we will do.
Please follow Denvah's page for more updates but anything you can spare right now would mean so much to us
Thank you
Denvah's Diary
-The fight for sight
-The fight for life