Helen 7 months old
my name is Helen and my mommy and I would like to share my story with you so that more people can get to know about Childhood Cancer; in this case specifically Retinoblastoma.
Retinoblastoma is a type of eye cancer that develops in the light-sensitive lining of the eye, called the retina, and can occur at any age but mainly occurs in children younger than 5 years of age and most often in those younger than 2.
Retinoblastoma may occur in one or both eyes, but rarely spreads to other parts of the body. Although it is the most common eye tumour in children, it is a rare childhood cancer and accounts for about 3-4% of childhood cancers.
The main challenge of treating Retinoblastoma is the prevention of blindness, however approximately 98% of children with retinoblastoma are cured.

Helen’s Story

Siobhan and Kole Smith were thrilled at the birth of their bouncing baby girl, Helen, but a mere 6 weeks later they got a very nasty surprise.
Siobhan was feeding Helen, and, looking down, got the strange feeling that she could look right into the back on one of Helen’s eyes… she thought it was just the play of the light or a reflection, but noticed it again later the same day and mentioned it to Kole, who jokingly told her she was just a paranoid mom.
The feeling that there was something wrong did not go away however, and even though a friend told Siobhan not to Google it as one can get either the wrong information or some very scary info online, Siobhan did exactly that and came up with eye cancer – Retinoblastoma!
Siobhan was in shock – babies do not get cancer! Cancer only happens to “Other People” (this is a very normal reaction to a cancer diagnosis)!!
Siobhan put it down to her just being a neurotic new mother, but the worried feeling would just not go away, and when she spoke to her mother about it, her mother saw the same thing she did.
This prompted Siobhan and Kole to take Helen to their GP, who referred Helen to an ophthalmologist. Of course, Siobhan being Siobhan, she read the referral letter and was relieved when it said “potential cataract.”
This relief did no last long however, as the ophthalmologist said it was either “retina infection” or “retina abnormality” or  “a tumour” –  of course one jumps to the worst case scenario – fortunately the ophthalmologist was very understanding and patient and calmed the worried parents down and made an appointment for Helen to see Dr Enslin Uys who specialises in the retina!
Dr Uys did a special scan on Helen’s eye and immediately came back with a diagnosis of Retinoblastoma. With their worst fears just having been realised, Siobhan and Kole listened in shock as Dr Uys explained everything to them, and although much of this conversation was a blur due to the shock, it did stick that Helen’s eye would have to be surgically removed.
Dr Uys explained that the reason that he wanted to remove Helen’s eye was that the tumour was already very large and he was worried that it either had already spread or would spread up the optic nerve and into the brain – if this happened there was really  no chance of survival for a 7 week old child.
Siobhan says she was in such a spin that she asked the doctor, “Where is the special school in PMB for children who only have one eye?”
The doctor laughed and said: “You can send her to any school you want! She can play hockey, she can swim, she will be good, she will be naughty, she can get straight A’s for school, she can become head girl and even go onto being a doctor one day. The only thing she can’t do is become a pilot – you need 100% vision for that!”
She will lead an a normal life! You treat her like a normal child!” he added
This news was great for a new mom who knew nothing about how to deal with what the family were now facing.
Just to make sure that his diagnosis was 100% correct, Dr Uys referred Helen to another doctor – unfortunately the diagnosis and prognosis were the same – the tumour in Helen’s eye was so big that it had detached the retina and she was blind in the eye – the only option was immediate surgical removal of the eye, which would also mean that Helen would not have to undergo chemotherapy, which is not recommended for a baby that young.

We will continue with Part II of Helen’s Story tomorrow



Please click on the Retinoblastoma links – each link refers to a different article on the subject, including:

  1. full description of this type of cancer;
  2. Everything you need to know about the Warning Signs/Symptoms of Retinobalstoma – including a great app to detect it; and 
  3. Various articles on “Living with Retinoblastoma


0 thoughts to “Helen's Story – Retinoblastoma Part 1

  • Liz Robertson

    This sharing of Helens story is so informative and going to be so helpful for parents who may have to walk a similar path.

    • LFCT

      Thank you, Liz that is the aim and we do hope that it helps other parents. It is not always easy for the parents to share their children’s stories and we really appreciate it when they do as it helps spread awareness, which is important and one of our mandates 😀


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