A mother with a young boy with bilateral retinoblastoma in Australia wrote to me asking for help.

Her son lost one eye to retinoblastoma, and now the tumour in his other eye is growing again. The doctors have recommended lens sparing radiotherapy treatment in London.

As you can imagine, the mere fact of the tumour becoming active is frightening enough. Add to that having to go to another country to have a treatment you know nothing about, and you get a pretty traumatised family.

If anyone can help out here by relaying your experience of this treatment, this mother would greatly appreciate it.

I’ve done some research for her on the treatment, and referred her to some organisations that might be able to help. But ultimately, if she can get first hand experience from another parent, it’d make the events ahead so much easier for her.

So please, pass on your experience here.

As you might have noticed, I’ve changed my website name from Beyond the Red Door to Retinoblastoma Focus.

So for those of you who have subscribed to my blog, please resubscribe.

To make sure the new feed is active, leave doing this for about twenty-four hours from now.

I’m really keen to develop this site with a focus on retinoblastoma and stories of hope. I’m also going to include some medical information on retinoblastoma, as well as reliable and useful resources.

So have a look around and give me some feedback. What do you want from this site that I haven’t thought about? Drop me a few lines.

Five-year-old Isaac started school this year at a mainstream primary school, despite having lost an eye to retinoblastoma.

His Mum contacted me after reading Tyler’s story

She describes Isaac as excelling already, “a bundle of fun” and “taking it all in his stride”.

I’d love to hear other parents’ stories. If your child has been diagnosed with retinoblastoma and has started mainstream school, tell us how he or she is going.

A recent story reported in the UK’s Daily Mail featured an extended family who share a fighting spirit and a brush with life-threatening eye cancer.

Jarvis (aged 20 months), his father Andy (aged 41) and his grandfather John (aged 70) have all experienced retinoblastoma and carry the defective gene. Due to the treatment options available to each of them at the time of diagnosis, the outcomes have all been different.

Grandfather John lost both his eyes to the cancer when he was seven, whilst his son, Andy, lost only one eye. For baby Jarvis, chemotherapy initiated when he was three months old proved successful in treating the nine tumours in his eyes. But when a further tumour regrew, pioneering radiotherapy at Barts Hospital was used to eradicate it.

This Christmas, Jarvis and his family can relax as they open their presents because Jarvis is in remission.

But as I read this story, a strong theme of determination shines through.

Neither blindness nor partial blindness has stopped John and Andy from leading full lives. Totally blind grandfather John not only took to the ski slopes, but also installed his son and daughter-in-law’s central heating system by himself. And Andy, with the sight in only one eye, teaches dancing.

I’ve heard many stories like this one, where adult survivors of retinoblastoma have achieved so many things in their lives. Even the total loss of sight has not impeded them in any way. In fact, it has spurred them on to try harder, find more challenges.

So is there a link between determination and retinoblastoma? Which comes first? It’s certainly something that has been part of my life and has kept me going. I’d love to hear your story.

Whether you’re an adult survivor or a parent of a child with retinoblastoma, I’d love to hear from you. So please drop me a line.

When a diagnosis of retinoblastoma is made, the journey for that child has only just begun. Kids don’t usually die from retinoblastoma - well, not in developed countries, anyway. Unfortunately, it’s the links retinoblastoma has with secondary cancers later in life that cause the real problem.

Fact sheets and brochures have been produced over the years warning retinoblastoma survivors of the types of cancers to look out for, and how to monitor their bodies for any suspicious changes. But like anyone concerned with their health, detecting cancer is not always as simple as finding a lump.

Retinoblastoma International is an American charity that is involved in education and research on retinoblastoma. One of their desires in the research field has been to find a way of identifying a retinoblastoma survivor who is at risk of developing secondary cancers to enable early diagnosis.

Now they are closer to achieving this dream.

In the Proteomics Program, proteins that have been shed by cancer cells and are circulating in the blood can be studied to determine a person’s likelihood of developing a secondary cancer, such as osteosarcoma, soft tissue cancer or melanoma. The patterns these proteins take on are like markers that signal the type of cancer they represent.

Retinoblastoma International has just received a grant to kick off this project. And retinoblastoma is their focus. Further down the track, other childhood cancers will be studied. In their latest newsletter, they state that they hope to begin testing at the end of this year.

So for those of us who are adult survivors of retinoblastoma, there’s new hope for a more accurate method of detecting cancer. And I’m sure the test will be applied to children as well. I’ll be keeping a close eye on progress in the months to come.

Yesterday, I was presenting at a disability awareness training session for senior local government officials. As I always start my talk by giving a bit of background about my medical history - the fact that I’ve had bilateral retinoblastoma - I thought I’d take along some copies of my book, ‘Beyond the Red Door’. I’ve learned to be better prepared for these events: at the last one, some of the participants wanted to buy my book and I had none with me.

At the end of the two hours, when everyone was drifting out of the room, a lady approached me. Her friends had a three-year-old girl with bilateral retinoblastoma. She wondered if it would help the parents to read my story.

We talked about it, the fact that treatment has changed so much over the past forty years since I was diagnosed with the eye cancer, but came up with one vital bit of information that all parents can learn from me. And that is this.

Life does not end after retinoblastoma, even if all sight has been lost.

This lady wanted her friends to know how much I’d made of my life, that blindness wasnt’ getting in the way of what I really wanted to do.

It made me reflect on how difficult it is for parents to watch their children go through treatment, endure the many hospital admissions, the needles, the surgery, the medicines, the eye drops. And how much harder it must be for them if the battle with the cancer is lost, and their child loses both eyes.

Yet, for the child, being blind is not that bad. In fact, kids adapt so wonderfully to change.

The epitome of this is Tyler’s story After a fifteen-month battle with retinoblastoma, Tyler lost both his eyes to the cancer. And sadly, for Tyler, the treatment left him with a hearing impairment.

But Tyler isn’t sad. Convoy for Kids an organisation in Australia that makes kids’ wishes come true, sent Tyler, his Mum, Dad and older sister, to America for a fun-filled holiday. And as you’ll see from the story, Tyler made the most of it.

Tyler’s favourite colour is blue. When he was having his prosthetic eyes made, he asked for them to be blue, a change from his previous eye colour of brown. When they were fitted, he asked for a mirror so that he could see how handsome he was.

It’s stories like these that must help parents when they are feeling at their lowest.

Let’s hope.’

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.