Helen’s Story – Retinoblastoma Part 2


Helen 2nd birthday mickey mouse party

Hey There,

Helen and mommy Siobahn here again – today we are going to continue with “Helen’s Story” because we want everyone out there to know about Childhood Cancer and about my cancer, Retinoblastoma.

Now that the problem had been diagnosed as Retinoblastoma, things moved along very quickly. The diagnosis was made on the Thursday and the operation to remove the eye was scheduled for the next Monday.

Helen underwent an MRI Scan as well as a Lumbar Puncture in order to determine whether cancer was present anywhere else in Helen’s body. Fortunately all tests came back negative and it was determined that the cancer was confined to Helen’s left eye.

Helen underwent surgery to remove the eye and she and mommy stayed overnight in ICU and in the normal Paediatric ward the next night, during which time Helen she had a plaster over her eye. The plaster was removed before she went home the next day and replaced by a transparent shield to prevent infection and was removed two weeks later.

A ball implant was inserted into the empty eye socket and Helen currently wears nothing over the eye  – she will get a prosthesis when she is a little bit older and able to handle the hygiene it requires (toddlers tend to play in the sand or touch unhygienic toys etc. and then rub their eyes).

The process of custom making an artificial eye for an individual child involves several stages and is done by an ocularist (someone who specialises in the fabrication and fitting of ocular prostheses for people who have lost an eye or eyes due to trauma or illness.)

Sometimes the mould is made during the enucleation, while the child is asleep, but making it when the child is awake often has a better cosmetic result.

Helen went for monthly checks on the right eye to ensure there was no cancer growing there for the first 6 months post-op, then every 3 months – this will become once every 6 months once she turns 3 years old, then annual visits until she is 6 years old to check for retinoblastoma in the right eye.

Helen is going to pre-school and having to deal with lots of curious minds and Retinoblastoma Awareness Ribbonquestions and a bit of teasing, about her eye, but she is strong and very confident, and the Little Fighters Cancer Trust especially wrote a little booklet called Helen’s Story that the teacher can read to the class to explain what has happened to Helen’s eye and what cancer is, so things should get better.

Because she does not know any better Helen has already automatically adapted to only having one eye – she knows no different, and once the prosthesis has been put in nobody will be able to tell the difference or even know that she has a false eye unless they actually stare intently at her for a while.


From birth on, children constantly learn and develop as they navigate different experiences. With the right information, attention and support, they can learn to do anything. Children are built to survive!

Each infant or child has a unique experience of retinoblastoma diagnosis, therapy and life after treatment. They have different feelings and reactions. There is no right or wrong response.

Each child’s experience is “their” experience. For many, retinoblastoma and its treatment is the only life-experience they have. Our job as adults is to support them through that experience.



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

  • full description of this type of cancer;
  • Everything you need to know about the Warning Signs/Symptoms of Retinobalstoma – including a great app to detect it; and 
  • Various very informative and helpful articles on “Living with Retinoblastoma“ (Parts I – IV)



About LFCT

CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit Childhood Cancer support organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 14 March, 2017, in Advice & Tips, Blog and tagged , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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