Rhys’s Retinoblastoma Journey

My name is Jade and I am the mum to 4 beautiful children; one of them being Rhys, aged 3 (nearly 4!)

On Friday 14th April we heard the dreaded phrase that no parent ever wants to hear that turned our lives upside down

Rhys was diagnosed with a childhood cancer called Retinoblastoma. It’s a rare type of eye cancer and he has a large tumour that fills his left eye. Unfortunately he has completely lost his sight in that eye and won’t get it back. He is under the Oncology unit at Birmingham children’s hospital as there are only 2 hospitals in England, Ireland, Scotland and Wales that treat this. We had never heard of this type of cancer before, therefore we’re unaware of any symptoms.

We noticed Rhys’s left eye started to look a bit ‘glassy’ but thought he may have been coming down with conjunctivitis. After a couple of weeks his eye was getting worse so I sought advice from our local Specsavers, who then sent us to Hereford A&E. From there he was referred to Birmingham Childrens Hospital where he is currently under the care on the Retinoblastoma Oncology consultants.

Rhys is having his first Intra Arterial Chemotherapy on Monday 24th April, and then 3 weeks later an examination under anaesthetic to see if the treatment has started any affect on the tumour. Due to its size and position they have said that if there hasn’t been a shrinkage that the consultant is happy with them the next stage will be to remove his eye completely and to start Systemic chemotherapy.

You never expect your child to have cancer, but we have an amazing support system to help us all get through it. We have been processing and trying to come to terms with everything.

Our families have been amazing with their support and we couldn’t get through this journey without them. This hasn’t just had an affect on us, but on my 3 other children. Who are 11,9 and 4 months old. Our families have had to rally round with child care, and Rhys’s dad Kurt and my partner Chris have had to have time off work to either be with myself and Rhys in hospital or to be with our other children.

I have had numerous people asking me about donations for food, travel and accommodation and anything Rhys needs. Also about donating and raising money for the Children’s Hospital and Retinoblastoma charity which we will be doing fundraisers for. We also want to raise awareness. So I’ve been advised this is the best way to go.

As you can imagine we are all heartbroken about our little boy having to go through all of this But he has been so brave so far and we are so proud of him. More than we ever thought possible!

Let’s go smash this Rhys We love you so much ♥️