Our Family’s Journey Through Genetic Testing
The Jones family chose familial testing because they believe knowledge is power.
If you had asked me several years ago what I thought caused cancer, I probably would have told you that, for most people, it had something to do with the environment or lifestyle. For some people, maybe it was bad luck. And while I may have said that some were born with it, I really did not understand the link between cancer and genetics.
I learned about that link through an unexpected journey that took many twists and turns. And I understand it much better now than I did several years ago.
Whitney and her family enjoy spending time together at home in Florida.
An unexpected diagnosis
My husband, Jason, and I live in Florida with our 2 beautiful boys, Davis and Kyler. Our youngest son, Davis, was just 4 years old when he began having headaches. A local doctor found that they were caused by hydrocephalus, a condition where too much fluid builds up in the brain. That same day, we found out that Davis had primary intracranial sarcoma, an aggressive, rare, and dangerous brain tumor.
We couldn’t have been more shocked that Davis had cancer.
He had a tumor biopsy at our local hospital the next day. Unfortunately, there were unexpected complications. He developed bleeding in his brain during the surgery. He lost his ability to walk. He could not swallow, and he could not open his eyes.
We were in an incredibly difficult situation, and we were willing to do anything to help Davis get better. We felt unprepared to face his diagnosis as well as his treatments. And we were very unprepared when the doctor suggested that his tumor might have been caused by a genetic condition. The doctor wanted us to speak with a genetic counselor about genetic testing because he believed Davis might have inherited a risk of cancer from a genetic condition.
We were stunned and alarmed at a possible connection between Davis’ cancer and genetics, but we agreed right away to genetic testing.
It was confirmed that his tumor was the result of a genetic condition we knew nothing about.
Davis’ parents were stunned to learn that his brain tumor may have been caused by a genetic condition.
Testing for the whole family
We spoke with a genetic counselor about our son’s results and what they meant not only for Davis but for our family as a whole. The counselor suggested that each member of our close family have genetic testing to see if we were at risk for cancer.
Jason and I were overwhelmed. The idea that one of us might have cancer as a result of a genetic condition was a lot to take in. But our genetic counselor was kind and patient. She talked with us about the process, and she addressed all our concerns.
We wished we could have found Davis’ brain tumor sooner. If we had been able to learn about his genetic predisposition earlier, we might have been able to get scans earlier or been more aware that his brief symptoms were a major concern. We decided to have the familial genetic testing done.
The test was simple and straightforward. The kit was mailed to our home with instructions and a return mailing label. Each of us had to spit into a container. The testing lab would use those saliva samples to study our DNA.
We did the spit tests as a group, returned the test, and waited for the results.
Kyler did not have any symptoms. He did not feel sick. We would not have known this tumor was there and needed to be removed if we had not gone through genetic testing as a precaution.
The Jones family looks forward to celebrating many happy days together.
Early detection
Through this process, we learned that our older son, Kyler, also had a genetic condition. Cancer screening tests revealed that he had a kidney tumor and that he would need a partial nephrectomy. Surgeons were able to safely remove the tumor and save a portion of his kidney.
Kyler did not have any symptoms. He did not feel sick. We would not have known this tumor was there and needed to be removed if we had not gone through genetic testing as a precaution.
Knowledge is power
There is a lot of information available about the connection between genetics and cancer. We have learned about the genetic condition that our family has and what we need to do to best care for our boys.
We believe that knowledge is power. Genetic testing gave us a chance to treat Kyler’s tumor before it caused any problems, and we were able to save his organ from further damage. We also now know what scans to have to surveil the boys and ensure they remain healthy. That has been invaluable to our family in giving us peace of mind.
