Retinoblastoma Focus

Dealing with Retinoblastoma

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Archive for October, 2007


Turning Nightmares into Dreams for Kids with Cancer

October 13th, 2007 by janet

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.’


The Rights of Birth Fathers

October 3rd, 2007 by janet

I stumbled across a news story in The Vancouver Province on a recent court ruling about the rights of birth fathers in adoption.

In this particular case, an adoption was being held up because the Master (lower than a judge) interpreted the Adoption Act as requiring the birth father to be informed of the adoption, despite the fact that he was unaware of the pregnancy and had not been named on the birth certificate. The master believed that the child had the right to know both his/her biological parents’ histories.

However, a Supreme Court Judge over-ruled this decision. This Judge’s interpretation of the Act was that the birth father should only be informed of the child’s adoption if he had admitted paternity and was aware of the pregnancy. It was contended that the Act did not compel the birth mother to inform the birth father of the child’s existence.

this throws up the question of a birth father’s right to know he has a child, and to be involved in the adoption process, if he chooses. Of course, there are always situations where it isn’t appropriate to involve or name the birth father, and no-one disputes this.

I haven’t done a lot of research on the current lie of the land in terms of the role of birth fathers in adoption these days, and their own thinking on the subject. From an adoptee’s point of view, I can say two things.

Firstly, I think informing the birth father of the pregnancy and the child’s adoption at the time makes it far easier for the adoptee to make contact with him down the track. When a birth father has no idea of the child’s existence, the search and reunion process is so much harder for all concerned. An adoptee may think about searching for years before actually doing it, but the person being contacted - in this case, the unsuspecting birth father - needs just as much time to come to terms with what this means to him.

Secondly, I agree that having access to both biological parents’ backgrounds is so important for the adoptee. Even if the adoptee decides never to search for either party, at least he/she has some idea of his/her background. Forming an identity of who we are is so difficult if some of the past is missing.

In saying all this, I acknowledge some adoptees are not interested in their biological backgrounds and never search for their biological parents. But that is their choice. And choice is the optimum word here. Everyone in the process needs the chance to choose whether they play a role in the whole adoption story. By denying birth fathers the right to know they have a child, they are denied the right to be involved in choosing the adoptive parents, in keeping in touch with the child, and in perhaps meeting that child one day.

These are just my comments and feelings, but I’d love to hear from others. Feel free to jot down what you think about birth fathers and their rights.