Ben Underwood, aged 15 years, lost both his eyes to retinoblastoma when he was three. Now he is battling cancer again, this time, a tumour in his sinus region. The doctors can’t tell if the cancer is a secondary from the retinoblastoma, or if it has occurred as a result of the radiotherapy treatment used to erradicate the retinoblastoma tumours.

But Ben isn’t letting this major change in his health get him down. Living in Sacramento, Ben has become famous for being able to “see through sound”. He refuses to use a white stick to move around, preferring clicking with his tongue and using echolocation to navigate around his environment. Ben is able to ride a bike, skateboard and play basketball, despite being totally blind.

His amazing abilities have led to him travelling extensively, giving talks about his life and meeting famous people.

Now he is undergoing chemotherapy and suffering from its side-effects. Although his prognosis is not clear, he has one vital thing on his side: his positive attitude.

To read Ben’s inspiring story, click here

In some of these posts, I’ve vented my frustrations about retinoblastoma not being taken seriously by medical specialists because it is so rare.

In response to this, James Spangler sent me a comment that attracted my attention. He is part of a public health program in America that recognises the need for comprehensive eye examinations for all babies in the early stages of their lives. These exams are free of charge and are carried out by members of the American Optometric Association. As well as other eye conditions and vision problems, these tests pick up retinoblastoma.

I went and had a look at the website InfantSEE and was really impressed with what I found there. There is a lot of easily accessible information for parents and medical professionals on eye care and vision. What struck me most was a couple of sentences on their home page which highlighted the ease of identifying significant developmental stages in a baby - such as sitting up, making different sounds - compared with the ability to recognise visual growth stages. How many of us know that vision, too, goes through developmental stages? Apart from the normal indicator of seeing a baby focus on you after six weeks or so, I don’t think many of us think about what else happens with the eyes. And such development isn’t easy to track without the use of specialised tools.

I also didn’t know that although paediatricians conduct eye examinations, they don’t have the relevant equipment or tools to detect all eye conditions.

InfantSEE has been providing this service since 2005 and the recognition of its worth is growing. Thanks, James, for letting me know about it. Maybe something similar can happen in Australia.

The day before I was to go on radio to talk about World Retinoblastoma Awareness Week and my book, I get an email from the producer saying it is off.

It’s full of sincere apologies - the co-host has been called away to more important business etc - but the real message is clear. We, the survivors of a rare condition who want to raise public awareness and enhance early detection to save both life and sight, are but small fish in the big scheme of things. It is sad, but true.

One thing it has taught me is never to rely on one media source to publicise a major event such as Retinoblastoma Awareness Week. Next time, I will target the local print media and perhaps even more than one radio station.

A contact in America emailed me to ask what was happening in Australia with respect to RB week. Now I have to say, “nothing”. I haven’t heard of any other form of publicity. In a way, it is symbolic of the attitude the Australian medical profession has to retinoblastoma. If you ask an oncologist, they will say it is such a rare cancer that no-one is doing any research on it over here.

It may be rare, but I certainly hear of many new cases in Perth.

So next time, I will be ready with my media campaign to raise awareness to the incidence of retinoblastoma and what needs to happen, both in developed and under-developed countries.

Sam Valavanis, from Patterson Lakes in Victoria, is undergoing surgery today to remove his remaining eye after a long battle with retinoblastoma.

I feel a connection with Sam and his family because it was his Mum, Lisa, who contacted me to help them with their fund-raising event in April this year. Lisa had read my book and wanted a copy donated for either raffling or auctioning to raise money for the ‘Beyond Sight’ group.

Lisa told me about the long and emotionally-draining battle they had all had over the past four years to try and save Sam’s sight. Sam has had numerous treatments. In Australia, Melbourne is probably the best place to be in terms of treatment options for retinoblastoma. As I read about Sam’s ordeals, my heart went out to his parents and the suffering they were going through. Lisa knew this day was coming, the one where Sam would have his eye removed, and so set out to make Sam’s last visual days memorable for him.

In this news story there is a picture of Sam on Puffing Billy, his last visual adventure before going into hospital.

I can just feel Sam’s parents agony on this day. It is undoubtedly a parents’ nightmare, but one they have no control over. Although I know that living without sight is not as bad as it sounds, if I were in their situation, I would feel the same for my child.

So today, my thoughts are with this brave little boy and his family.

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.

Seventeen-year old Samantha lost her sight to bilateral retinoblastoma as a baby, and suffered many complications which meant multiple hospital visits.

But she has never let her blindness or her treatment get in her way. Samantha is in training to ride her bike, with a sighted pilot, from Chattanooga to Memphis, some 400 miles. Her aim is to raise funds for retinoblastoma survivors like herself.

You can read more here

Being a cyclist myself, I know how much training goes into building strength and endurance for such a ride. And riding a tandem bike is harder than people think, especially when it comes to hill and mountain climbing! People don’t realise how heavy a tandem bike is when you have two riders. You can be pushing over 100 kgs up a slope. And four legs aren’t actually better than two when it comes to climbing.

It’s great to see fund-raising by people directly affected by retinoblastoma. Usually, it’s the parents who launch these events, or celebrities. Good on you Samantha. Go for it.

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