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.

When you come from a closed adoption system and experience the many battles and yearnings to discover your roots, open adoptions seems to be a much easier and fairer road to travel for all concerned.

But any adoption, whether it is from a closed or open system, has its challenges. I came across an incredibly moving story from an adoptive parent, Dawn Friedman, about the emotions involved when she adopted her daughter, Madison, in an open adoption system. Dawn writes honestly and freely about her own grief and guilt in “taking” her daughter from her birth mother.

It is thought provoking and refreshing to read. ‘Open Adoption, Broken Heart’ can be viewed here

It speaks for itself.

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.

I think it was almost ten years ago now when I first stumbled on the fact that retinoblastoma survivors can get secondary cancers later on in life. Back then, I was like a dog with a bone, pursuing the medical profession to get answers, and to design a screening program for me to detect early cancers.

So when I fronted up for my annual breast ultrasound yesterday, I shouldn’t have been surprised when the doctor began telling me that ultrasound was not enough, that I needed a mammogram and an MRI. Now that I’m forty years old, things have changed.

But I was. I wanted to say ‘no thank you, I’m fine’ and ‘let’s just do the ultrasound and I’ll go home’.

Why was I so reluctant to keep my finger on the pulse and ensure I was getting the best medicine could offer me in the way of a screening program? Well, maybe it was because, for the first time, someone was saying to me that I was in a high risk group, and I needed to be watchful.
Maybe I dont’ want to hear this, maybe it is too confronting? My life is going so well,and I don’t want it to change. I also hate hospitals and quite honestly, anything other than an ultrasound scares me.

Part of it too might be that it seems like overkill that they’re putting all these resources into just looking for breast cancer wen I know full well that secondaries can occur anywhere. An acquaintance of mine died last year from a leiomyosarcoma. She was 49 years old, had bilateral retinoblastoma and radiotherapy treatment. Detecting a leiomyosarcoma is near impossible.

But I’ve pushed down my fear and reluctance and booked myself in for the MRI. I know it would be crazy to ignore what the doctors are saying. They are taking me seriously, acknowledging that I am at higher risk. I owe it to myself to keep up the screening program.

I’m on a roll here, so let’s keep going. Ooops, this chapter is an emotional one too!

This chapter really highlights many of the issues adoptees experience through life. It’s been seven years since I first met my natural father, seven years of trying to stuff down my feelings, deny my needs. But of course, denying things never works. My feelings eventually explode and I find myself before a counsellor.

This time, I meet the right person. Before I make the big decision about whether or not to reach out again to my natural father - who has been absent in the last seven years - I must deal with my adoption issues, my feelings of loss. As a social worker, you’d think I’d know this, that adoption is a loss and must be grieved. But like most of society, the losses associated with adoption are not recognised.

I think this was the roughest road I’ve ever been down. But the results at the end were worth it. At the end of the process, I choose to seek a second reunion with my natural father. But nothing is ever simple or straightforward in adoption, and much strength is needed.

Phew, that’s over! No more tim tams left!

Golly, where have I been? Back to the book!

I just reread this chapter and a vivid memory came flooding back. When I completed the first draft, this chapter wasn’t included. My agent then told me to “dig deeper”. So I sat down in front of the computer and thought about my darkest secret. I think I typed about a paragraph, then I left the room, tears rolling down my cheeks.

It took a few packets of chocolate biscuits to get this chapter down. I find it hard even to summarise it here. In essence, the shadow I refer to is the “retinoblastoma look”, the scars I was left with after losing an eye early in my life, and the effects of the radiotherapy on my bone development. Both these things changed my facial structure, something totally out of my control. But that didn’t stop the pain that I went through and the years of torment.

My desire to have my facial features returned to “how they should have been” sent me to a plastic surgeon for help. I showed him a photo of me as a baby and said, “I want to look like that, have that face”.

You’ll have to read the rest, but be warned, tissues are really needed here.