A recent comment from Kerri, aged 16 years, prompted me to raise two issues about adoption: firstly, the courage it takes to actually speak about thoughts and feelings related to adoption; and secondly, knowing where to find support from people who understand these issues.

Let me address the latter issue first. Kerri was surfing the net during school time, found one of my blogs on the difficulty of contacting birth parents, and had time to write just a few lines about her own adoption experience. What came through was her frustration in not being able to find places where she could share her thoughts and feelings with people in the same situation. She is only 16, has been contacted by and met her biological grandparents, but her birth mother is absent from the scene because she has schizophrenia. Dealing with all the emotions that come with meeting birth families is hard enough for anyone, let alone for someone as young as Kerri. And on top of that, she has to cope with having a birth mother who isn’t well.

It takes me back to the chapter in my book, ‘Beyond the Red Door’, where I tried to paint a picture of the incredible array of feelings I experienced when I met my birth mother - who made it clear she wanted no further contact - and then was contacted by my biological grandparents who were desperate to meet me. To someone who is not adopted, being accepted by your natural family shouldn’t cause any problems. But there is so much at stake. There is confusion about why one part of the family wants you while the other doesn’t, excitement at being accepted, disbelief that it will last, fear that your adoptive parents might feel rejected, and fear of being rejected because of course, it can’t be true.

If you don’t know where to go with all these feelings, who to talk to, you can feel very cut off from the world around you. There are support services out there, counselors and social workers who specialise in the field of adoption. Sometimes it may not be about how to find them as much as taking that step to trust another person with your deepest thoughts and fears.

Why is it so hard? Because you feel different. You feel as though you shouldn’t have the sort of feelings you do, that you shouldn’t want to know your natural family, know more about your background. You might feel disloyal and ungrateful to your adoptive parents. And if your adoptive parents have put up a barrier to you expressing your thoughts on adoption, it becomes even harder to talk about how you feel.

when you do find the right counselor or support group, the relief is enormous. That’s when you discover there is nothing wrong with how you are feeling, that it is perfectly natural.

I remember the day I finally got the courage to see an adoption counsellor because I could no longer handle being bombarded with images of my birth father in the media. At that stage, I hadn’t searched for him. I wanted the counsellor to give me some technique to stop the feelings I was having. I nearly fell off my chair when she said, “It’s perfectly natural for you to feel this way. Why don’t you consider contacting him?”. So I wasn’t some half crazed loser after all!

In thinking about where to find support, I’ve just stumbled across a new website that specialises in international and transracial adoptions for all sides of the adoption triangle. It looks pretty comprehensive and is promoting a documentary that is being made about the issues in transracial adoption. The film will follow American adoptive parents who go to China to meet their new daughter, and an adult Korean adoptee living with white parents whose adoptive mother is diagnosed with a brain tumour, which brings up new issues of abandonment. The film will also incorporate comments from professional counsellors and social workers on the issues brought up by all parties concerned.

You can view the site at Adopted, The Movie They are wanting more input from adoptees, have a blog and film clips to view.

Kerri’s comments have reminded me just how isolated adoptees can feel, especially during the teenage years when so many questions surface about who we are. I hope she finds someone to support her.

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.