Penelope was diagnosed at 1 year and 3 weeks old. We went to see her pediatrician for an ear infection and I asked them look at her genitals because from one day to the next she had pubic hair on her private area and on her armpits. The next morning she went in for an ultrasound that revealed cancer. She was immediately hospitalized where we discovered she had an orange size tumor on her left adrenal gland resulting in a diagnoses of adrenocortical carcinoma which is an aggressive cancer originating in the cortex (steroid hormone-producing tissue) of the adrenal gland. This affect of 1–2 people out of 1 million population annually. 

Long story short nothing would be determined until the surgeon went in to see the tumor. After discussions of chemotherapy and and possible removal of gal bladder and other parts of her intestines, the tumor was surgically removed and it was discovered that the tumor was encapsulated in a fibrous connective tissue capsule. Because of this encapsulation, the doctors were able to remove the tumor before it could spread. Penelope’s case is under review and on file at MD Anderson because of how rare her cancer was. She currently is the youngest person on file to be affected by this cancer.

Because of this diagnoses and how rare her cancer was, we had genetic testing done and found out Penelope, her brother, and myself are positive for Li Fraumeni syndrome. Li-Fraumeni Syndrome (LFS) is an inherited familial predisposition to a wide range of certain, often rare, cancers. This is due to a change (mutation) in a tumor suppressor gene known as TP53. Baptist Cancer Center in Miami is beginning their Li Fraumeni section with the help of MD Anderson, and we are apart of their records. Because of this family diagnoses we are always having preventative screening and on the lookout for cancer. I would like to advocate preventative screening. It it hard mentally and we have scan anxiety (scanxiety). Some people would say its a blessing to know what we are looking for. Yes, it is but cancer is always in the back of my mind.

Hope session by Darcy Graf Photography | Facebook | Instagram

Floral crown by Jenna Sleeman at www.theinfinitefift.com.