June 3rd is national Cancer Survivors Day. Today we will celebrate and honor the lives of those who have survived the horrid disease. While cancer comes in many forms, none of them change a patient’s reaction when the doctor walks in the room with a stoic look on their face and says, “Its cancer.” That is a sentence no one wants to hear.
Now you may be wondering, what does congenital heart disease have to do with cancer? Sure, they have some things in common: hospital stays, weakened immune systems, and changing someone’s entire life. However, the main commonality lies within the truth that transplant recipients are three to four times more likely to develop cancer than the average person. Not only that, they have a significantly higher chance of dying from their disease. This happens mostly because of the immunosuppressant medication transplant recipients must take so that their body does not reject the new organ.
Not all people born with a congenital heart disease need a heart transplant. It is often the last-ditch effort because of the side effects it can have. It is life saving yet life-endangering at the same time. Olivia Apa and her family know this all too well. You can read her full story in a prior blog written by her mom called “Miracle Girl Olivia.”
The basic understanding of her incredible story of faith and strength starts a day and a half after she was born in 2006. Olivia went into shock while being nursed and was then diagnosed with Hypoplastic Left Heart Syndrome, or HLHS. She had her first surgery, the Norwood and had a hard recovery following with going into shock two months after. She then had two more open heart surgeries that had major ups and downs with her heart suffering from an aneurysm and infection. When she was about two-years-old Olivia was ready for the Fontan. Her forth surgery, the third step in the HLHS series. However, her cath revealed early signs of heart failure and so she went back to the operating room again.
The surgeons at Vanderbilt worked to repair her valve but at her six-week follow up the echo told all. The surgery was not successful and now she was in heart failure. Only one shot left, the hope for a new heart. She was placed on the transplant list in late October 2008 and got her new heart late March 2009. A few weeks in the hospital and Olivia and was discharged to go home with beautiful pink (no longer blue) tinted skin. She had energy to play and was living the childhood her parents dreamed for her. 7 years of “normalcy” went by and Olivia was doing great with her new heart.
Except one day in late 2015 Olivia started experiencing strange symptoms and eventually ended up in Vanderbilt again, this time being diagnosed with PTLD or post-transplant lymphoproliferative disease. PTLD is a form of lymphoma caused by the medicine transplant recipients take to ensure their body does not reject the new organ. Olivia received Chemo treatments and care from her parents. She is now cancer free.
With Olivia’s inspirational story in mind, take some time this week to celebrate those who have defeated cancer. They are survivors, inspirations, and sometimes even heart-warriors.