..m sorry, but since you yourself had the cancer in both eyes, there's a 99,4 % chance that you carry a gene mutation, which could cause your children to develop the retinoblastoma as well..."
Retinoblastoma is a rapidly developing cancer that develops in the cells of the retina, the light-detecting tissue of the eye. It is rare and affects approximately 1 in 15,000 live births, but it is the most common inherited childhood malignancy. In Sweden, around 6 to 8 cases are diagnosed per year.
In about two thirds of cases, only one eye is affected (unilateral retinoblastoma), in the other third, tumors develop in both eyes (bilateral retinoblastoma).
There are two forms of the disease, of which one is a heritable form. In children with the heritable genetic form of the cancer there is a mutation on cromosome 13, called the RB1 gene.The genetic codes found in chromosomes control the way in which cells grow and develop within the body. If a portion of the code is missing or altered a cancer may develop.
What is there to say... Up until now they have said that I don't carry the gene, but this new doctor has now refered me to another genetic investigation. So, as the course of my life goes, it has now been turned upside down again.
When the doctor called us last time, she said that they'd have to examine little Squeeker as soon as possible and, that he'd have to be under anaesthetic during the procedure. She did not however tell us that this will have to be done every month until he's 1 year old....
Nor did she tell us that it'll have to happen every other month until he's 3...
And every 3 months until he's 5...
And then every 6 months until he's 8 years of age...
How did she not know this when she examined him the first time? And how is it possible, that Noone ever told us this when Alex was little? We have been to the eye department a million times for his cataract and, they have never so much as mentioned anaesthetics...Except once or twice when they wanted to check his pressure when he was little....
This means that my little rainbow baby will be given a general anaesthetic at least 30 times in the next 8 years...
30 times that we will have to worry about side effects from the anaesthesia...
30 times that we'll have to sit there and wait for them to come out and possibly tell us that they'll have to start an agressive treatment imediatly to save our little one from dying.
30 times...
It'may sound melodramatic, but I feel like we have been put on death row...We never know what the next appeal is gonna bring...
If he is diagnosed with the cancer he could be given any number of the following treatments:
chemotherapy, cryotherapy, radioactive plaques, laser therapy, external beam radiotherapy and at worse, surgical removal of the eyeball...
I realize that in the developed world, Retinoblastoma has one of the best cure rates of all childhood cancers, about 95%, with more than nine out of every ten sufferers surviving into adulthood and, that is something to be grateful for, but he may be in for months and months of difficult treatment and, he may also lose his eyesight in the process. They say that surviving with, what they call good eyesight, is common these days, but in their definition that may still mean losing one eye...
Most of the time I can't take it in. What i can take in however, probably since I will have to get on birth control right away, is that we will not be able to have anymore children, as according to this doctor, there is a 50 % chance that I'll pass on the gene and, 99,4 % of the children with the heritable retinoblastoma develop the cancer.
And, we so wanted to try to have another one...
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