“… as parents we are terrified. We are so grateful to have found this page to get more information.”
This is Olivia, my fearless 7 year old daughter. Our happy, sweet, gymnast full of life.
In January of this year I brought her to our local children’s emergency room with the fear she was having appendicitis- lower abdominal pain, nausea, fever… within 12 hours my world fell apart and we had a cancer diagnosis. I was told she had a large mass pressing against her right kidney and to prepare. Along with the mass her blood pressure was extremely elevated so we started her on medications immediately. At the time her father was deployed on a submarine out in the Atlantic Ocean and our mission was to get him home to his baby. After countless ultrasounds, labs, and so many doctors we found metanephrines & normetanephrines were extremely elevated so we turned to an MIBG scan- which immediately lit up. With the help of the American Red Cross- Dad was evacuated from the submarine and a week after our first day in the ER he was home.
We then spent 14 days inpatient doing catecholamine blockade and March 2nd she went in for surgery to remove the tumor. Surgery was planned for 3 hours to which ended up taking 7! But it was successfully removed and our baby was recovering in the PICU. The next few days were extremely rocky. We went back to the oncology floor for a few hours when her blood pressure became an issue and was found to be anemic needing to be transferred back to ICU for blood transfusions…. 7 days later we were finally evicted and sent home! A total of 28 days for this stay.
We were then told she had a Extra Adrenal Para Type 4 with a SDHB mutation. Our doctors have told us this is extremely rare for an adult nonetheless a 7 year old but here we are! We have such little knowledge about any and all of it and to be honest as parents we are terrified. We are so grateful to have found this page to get more information.
Olivia’s motto through the entire process has been to “Dance it Out!” Everyday she would find a fun song and make me post it with an update so her family and friends could see she was okay (in her words.)
So if you’d like to dance with Miss Olivia- follow her journey at #FIGHT4OG on Facebook.