A determined Johannesburg grandmother started on a world-wide search for help to both save her grandson’s sight and life. When baby Vaughn was diagnosed with bilateral retinoblastoma, his grandmother was allegedly told that both his eyes should be removed.

But Vaughn’s grandmother refused to listen to the ophthalmic surgeon, and instead dispatched urgent emails looking for a doctor who could treat her grandson. She found Dr Brenda Gallie at the Toronto Children’s Hospital. Dr Gallie is the head of retinoblastoma research in Canada.

In this news story an email from Dr Galli to Vaughn’s grandmother sent in March this year outlines the success of chemotherapy treatment to date on Vaughn’s eye cancer. It appears his life is not under threat, and he will retain some functional vision.

Is this another signal for the need to establish a network of retinoblastoma experts on a global scale to help fight this cancer in our developing countries? And does it also highlight the lack of appropriate medical treatment in these countries, as well as the absence of a full understanding of the types of treatments available to cure this disease? Money, of course, and the cost of treatment is always an issue. Many families cannot pay for the necessary treatment.

With World Retinoblastoma Awareness Week coming up from May 13 to 19, this story is a timely reminder of what needs to be done towards eliminating both the loss of sight and life through this curable cancer.

I received a newsletter from Retinoblastoma International recently which announced the upcoming World Retinoblastoma Awareness Week. The week runs from May 13 to 19. This is the first time all the retinoblastoma organisations world-wide are getting together to raise the public’s awareness of this eye cancer in children.

Everyone is encouraged to do their bit in promoting RB week. I have informed my local radio station with a view to getting on air to talk about the importance of early diagnosis, what to look for, and the incidence of retinoblastoma all over the world. I’m hoping this will happen, as this station had already asked me to co-host an hour on one of their shows, with the subject being my book, ‘Beyond the Red Door’. I’ve pointed out to them that it would be an opportune time to fit in with retinoblastoma week, as this is a strong theme in my book.

I am keeping my fingers crossed, as I would love to spread the word more about this disease, and join others out there who are doing the same.

Well done all the retinoblastoma organisations in bringing this event to fruition.

Retinoblastoma is well recognised as a curable eye cancer in children. Early diagnosis and a variety of treatment options ensures the saving of lives and sight.

But this is only in developed countries. According to a UK charity Daisy’s Eye Cancer Fund there is a less than twenty percent cure rate in under-developed countries, as compared to a ninety-six percent cure rate in the UK.

Daisy’s Eye Cancer Fund is a retinoblastoma charity with a difference. It’s aim is to prevent deaths from retinoblastoma in all countries of the world.

The international charity under a different name was founded in 2004 by the parents of a child with retinoblastoma in the UK who needed to travel to Canada for treatment. In 2006, Abby White, a bilateral retinoblastoma survivor working in Kenya at the time, became involved when she received an email from parents of a child in Botswana who urgently needed treatment. The charity assisted Rati and her parents to travel to Canada for treatment. Sadly, Rati did not survive. Rati’s death highlighted the need for relevant resources, education and services to be made available to countries such as Africa.

Daisy’s Eye Cancer Fund focuses on research, education and training for health care clinic workers and families in under-developed countries, as well as providing financial and logistical support to families where local resources do not exist. There are many reasons for the high death rates in these countries. They include a lack of awareness amongst health care clinic workers and families about the need to closely monitor a child after treatment; the expense of treatment and hospitalisation; and the lack of access to medicines.

The charity is based in the UK and Canada, and has Dr Brenda Gallie’s support. Dr Gallie is a retinoblastoma specialist and has interests in the global treatment of the disease.

The site also includes fact sheets on retinoblastoma. Have a look around. It is a much needed resource.

I’ve just written a blog on my other site about the question of whether a person would choose to have their sight restored if a) they’d lost it through accident or disease later in their life; or b) they were born blind.

Before you go and read it, I just want to make something clear here for parents of kids with retinoblastoma who may be struggling with the question of whether to treat their child’s cancer, and so save sight, or whether to have the eye removed. This blog is not about that issue. It stemmed from a radio program about the invention of artificial sight and what it will offer those people without sight. But it is interesting in terms of what the blind ‘can see’, and this might be a comfort for parents of retinoblastoma kids who have lost their sight.

If you’d like to read it, click here

I gave Chapter 11 of ‘Beyond the Red Door’ the title of ‘Time Bomb’ for a good reason. It wasn’t until I was about thirty-two years old before I discovered the links retinoblastoma has with secondary cancer later in life. I felt as though I’d been living with a time bomb that neither my parents nor I was aware existed.

I’d known that radiotherapy as a treatment for cancer had its own late effect concerns in that it could cause the disease it had originally eliminated. But it was only through some chance events and encounters that I discovered that retinoblastoma also had links with secondary cancers. At first, I thought bone cancer was the one and only concern, and that once I’d finished growing, this wouldn’t be a problem. But my inadvertent wanderings led me to find out more, and I knew it couldn’t stop there.

In this chapter, I describe what I found out, the attitudes I encountered, and how I resolved my new-found situation. I’d been severely shaken by this new information. It felt as though my life had been turned upside down. It was crunch time for me, and I had to make a choice.

You can read all about my struggles in this chapter in my book

Researchers are always looking for a non-toxic treatment for retinoblastoma, one that goes directly to the tumours and acts on them, rather than on other normal cells. This is because treatments such as radiotherapy and chemotherapy have sometimes significant side effects.

A recent article in the journal Eye, described some possibly exciting news about a treatment that does just this. It’s an extract from a particular tree bark that only requires low doses to effectively make the tumour cells “commit suicide”. It’s a treatment that targets the tumour cells, but at this stage, of course, there isn’t enough evidence to determine its toxicity.

Retinoblastoma is not the only cancer that this treatment may be used for. Researchers are hoping it can work on other specific cancers, such as breast cancer.

You can read more here

It is in the early stages and requires more testing, but at least there is some hope for a better treatment of Retinoblastoma in the future.

I had an email recently from Lisa, a mother of alittle boy with bilateral retinoblastoma. The family live in Melbourne, Australia, and are part of a support group for parents whose children have RB.

The support group is called, ‘Beyond Sight’. I was really pleased to hear of such a group, as I recall searching for groups like this years ago when I wanted to know more about RB in Australia. Nothing existed then, but obviously this has changed.

Lisa is organising a huge fund-raising and public awareness event in April. After the trauma her family has been through with a shock diagnosis for her son at age twelve weeks, and subsequent lengthy treatments, she says she wants to give back to the support the group has given her.

Lisa has read my book, ‘Beyond the Red Door’. She asked me if I’d donate a copy to be raffled at the event. I am only too happy to do that. She hoped I might be able to come to the event and speak about my experiences. I am going to Melbourne to receive a literary award for one of my short stories, but it’s at the wrong time. But I will be there in spirit, and I am so happy to see more resources for RB families now in Australia.

If you are in the Melbourne area and want to support this event, email me and I’ll pass information on to you.

Four-year-old Kyra who was diagnosed with retinoblastoma in August last year, had more than one type of gift for Christmas.

Kyra’s Mum, Samantha, tells how a local church went out of their way to grant three wishes Kyra had made for Christmas, including seeing Santa. She expected to see Santa at a shopping centre, but was surprised when he turned up at her house.

But this wasn’t the only gift for Kyra and her Mum. Kyra, after having the eye with the cancer removed, was given the magical news that she was clear of cancer. Of course, she will ahve to be monitored for five years, but the news was just what the family needed.

Kyra’s Mum talks about the importance of support from friends and the community. I think this is definitely important for families of kids with retinoblastoma.

You can read Kyra’s story here

I had a lovely email from Karina, a Mum of a 3 year old girl, Chloe, who was diagnosed with unilateral retinoblastoma at age two. Karina had noticed one of Chloe’s eyes had irregular movements,and reported this at regular health checks. The doctor didn’t think this was abnormal, and dismissed it, until at her two-year-old check, Karina reported a strange glow in the eye.

It was only then that the doctor took action and Chloe was found to have retinoblastoma. You can read Karina and Chloe’s story here

Karina is an incredible person. She has taken it upon herself to advocate for the screening of babies for retinoblastoma. She is actively doing this, as well as undergoing the emotional strain of her daughter’s regular health checks, exams under anaesthetic and MRI’s. But she is determined to make a difference for other parents and children.

Karina mentioned to me the feeling of guilt that parents of retinoblastoma children go through, that haunting question of “should I have picked it up earlier?” No one can ever erase that guilt, and I’m sure my parents also felt some guilt over the years. I, too, had a lazy eye, which wasn’t seen as a real problem, then my parents saw the whitish spot in one eye, and that’s when the doctors took notice.

I think all babies should be screened for retinoblastoma, even though it is seen as rare. As a geneticist told me, it’s amazing there aren’t more cases of RB, because anything can go wrong at conception, which is when one of the RB genes can just go missing. Why should everything be perfect? It’s food for thought, and an interesting point. And yet another reason why there should be some sort of mandatory screening for babies.

One of the symptoms of retinoblastoma is a white reflection in the child’s eye, sometimes referred to as a cat’s eye appearance.
Recently in the UK, one-year-old Jasmin had her photo taken. It was good luck that her mother noticed the reflective whitish spot in her left eye. She took immediate action, with the result that Jasmin was found to have bilateral retinoblastoma.
After six weeks of chemotherapy, Jasmin’s tumours have all gone. How fortunate that her Mum acted so promptly.
You can read the press release here