“Be Bald Be Proud!”
Mikayla’s amazing motto.
Mikayla was diagnosed with a rare and inoperable brain cancer (a Ganglioglioma) when she was 4 years old. Ganglioglioma is a rare brain tumour with both glial cells (responsible for providing the structural support of the central nervous system) and neuronal cells (the functioning component of the central nervous system). Ganglioglioma is a low-grade glioma, i.e. it is cancerous but slow growing.
It’s rare for glioma’s to run in families but having a family history of glioma can double the risk of developing it. Mikaela’s family had a dilemma – to test or not test.
She has four siblings, the eldest is age sixteen. Her parents eventually decided to test the whole family to establish if they have an inherited genetic virus that could put them at an increased risk of having brain cancer
The Genetic Test Dilemma
You may receive reassurance of a negative test result.
Mikayla’s parents have always been honest with their children about her cancer. They felt it was important to inform their children of the risk that exists within the family and to establish whether Mikayla’s siblings actually carry the same genetic virus as Mikayla.
You can hope that your children are not carriers.
Being tested and knowing for sure that your other children have the virus may destroy hope by presenting the children and the parents with a perceived ‘doomed future’ in which their genetic make-up increases the risk of developing the same brain cancer as their sibling.
What children believe is happening is worse than it actually is
Mikayla has had many years of chemotherapy and other medical treatments so her siblings were used to her showing signs of illness. Even at a very young age without being told specific information they often sensed when something was wrong, yet not always know what it was.
Mikayla’s parents decided to tell their children what is happening within the family in a way that they can understand. Furthermore, Mikayla’s mum does not believe in keeping secrets from her children, especially when the secret is about a cancer that may affect her children’s lives in the future. Natasha believes that deliberately concealing information may do more harm than good. Every Sunday the family sit around the dining table and the children are allowed to ask questions, nothing cancer-related is off bounds. “More often than not, what the children believe is happening is worse than it actually is” says Natasha.
TALKING TO CHILDREN ABOUT CANCER
The family were encouraged to have the genetic testing by genetic service providers on the basis that if tested and found free of the genetic virus the children may grow up being less fearful of getting brain cancer themselves and they may be able to make different choices, eg. regarding having children of their own.
Furthermore, Natasha and her husband will not look for signs in their other children, which prior to genetic testing they may have concluded were possible symptoms of brain cancer.
In addition to testing their children, Natasha and her husband also selected to be tested. Presumably they felt confident in their ability as parents to cope with the impact of the testing of which parent carries the genetic virus.
Natasha and all of Mikayla’s sibling tested negative which was a huge relief the family, however her husband tested positive. He suffered severely from the burden as he felt that he was solely responsible for all of Mikayla’s suffering and for all of the immense suffering that the disease had caused their family.
Natasha said to him “don’t look at it like that, there is nobody to blame, it’s just one of those things ”. She was also distraught to witness her husband’s belief that his genes could have given Mikayla cancer. Natasha wrapped him in her arms and told him “we weren’t to know that the virus was in your genes.
Whether siblings are better off not being tested is a tough personal decision for families to make. It’s understandable, especially if they have experienced traumatic consequences of cancer in their family. However, all the evidence suggests that children are capable of understanding the need for genetic testing if the information is given to them in a way they can understand. (More often it’s the parents who have the trauma of receiving this type of information). In addition, considerable emotional turmoil can be caused by delaying giving children important information, i.e. it’s much more difficult for an adolescent to accept than a child.
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