Deacon’s Story

Site created on November 10, 2021

Thank you for following us on our journey! On August 27, 2020 Deacon was diagnosed with Rhabdomyosarcoma of the neck. This is a rare cancer, but thankfully Deacon is strong and everyday he is proving that he is stronger than cancer. 

Newest Update

Journal entry by Samantha McNeill

Because Deacon was so young when he was diagnosed it was encouraged he get genetic testing done. There are high cancer rates in both our families so we already had some background knowledge of other family genes that might be in the mix.

Months later we received news that Deacon does have a gene abnormality (Gene TP53), this is correlated to Li-Fraumeni Syndrome. This means that Deacons body is not able to fight off cancer as well as other bodies can. It means he will most likely have to fight cancer multiple times in his life. 

Daniel and I were also tested for this gene because it can be hereditary. His came back negative, and my test came back positive for the faulty gene. 

After learning this news we went into a state of mourning. 

Mourning for the life that Deacon will have, mourning our past life and realizing it will never go back to being the same, and mourning the fact that we won’t have any more children. We were preparing our hearts for the fact that a cancer diagnosis for myself can potentially be right around the corner, and preparing for all the new scary things that will inevitably come our way. 

 

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