Archive for April, 2007


Retinoblastoma Survivor Takes to Her Bike to Raise Funds

April 26th, 2007 by janet

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.


The Beyond the Red Door Bookmark

April 19th, 2007 by janet

With the Boyup Brook Book Bonanza coming up soon (May 19 & 20), I’ve been thinking about what I could give away with my books.

The perfect answer, of course, is a bookmark. Then it came down to design, who should do it and how much would it cost. I did a lot of research on bookmarks and discovered that what I wanted - which was quality and longevity - would cost quite a bit.

So the next best thing was to be creative and do it myself, so to speak.

It was actually my mother who came up with the fantastic design idea and who became the hands-on producer. Why not have the bookmark as a red door with panelling and a door handle?

It was a brilliant idea. And having control over a product and producing it yourself is so satisfying. I think there is more pride in creating something yourself. I certainly felt happier when I did the reprint of ‘Beyond the Red Door’, just because I was in charge of the design and content.

I’ll describe the bookmark to you - if I was really clever, I could take a photo, upload it to a blog post and let you see it. But I’m not clever, so here’s the description. The bookmark is made of a high quality plastic, red in colour, of course. The panels are etched in gold paint and so is the door handle. And to top it off, there is a beautiful red rope tassle.

I’ll be giving these away at the book fare in May, but will also include them when you buy your copy through my site. Please click here to purchase your copy and get your free bookmark.


A Global War on Retinoblastoma

April 12th, 2007 by janet

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.


Choosing Blindness Over Sight

April 7th, 2007 by janet

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


The Time Bomb of Retinoblastoma - Chapter 11

April 3rd, 2007 by janet

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