Hello friends and family! My name is Pam Stevenson and my family’s medical story is one of heartbreak but hope. I have suffered from Lymphedema since teenage years and, knowing it was a genetic condition passed to me from my father, I always prayed it was something I would not pass on to my children. Sadly, about 2 years ago, our youngest son, Jack, began to show symptoms. It is something I’ve always “just lived with” but Jack kept asking us to pursue possible medical treatments to improve his quality of life. Jack is an incredibly active young man on his feet for countless hours each day with marching band and varsity tennis and this disorder definitely takes its toll on his legs. His attitude and quiet spirit of just accepting this diagnosis without complaint motivated us to seek out medical options besides “just live with it.”

Lymphedema is a condition where excess lymphatic fluid collects in tissue. It happens when the lymphatic system which normally helps drain fluid and fight infections has been damaged. Sometimes it’s genetic as in our case, and sometimes from trauma or removal of lymph nodes in surgery. Treatment has always been aimed at simply managing the condition with compression garments and specialized physical therapy. No cure existed and most doctors had very limited knowledge of the disorder. If left untreated, the disorder spreads to other areas of the body, lead to fibrosis and cellulitis.

With the help of our physical therapist, we’ve discovered a world-renowned plastic surgeon at the Cleveland Clinic who’s developed micro surgical procedures for lymphedema patients. (He’s the only one we found in the nation doing these procedures on minors.) We flew to Cleveland in November for a consultation and Dr. Chen approved Jack as a surgical candidate. Surgery #1 this June will debulk fluid from his right leg, followed by surgery #2 in November on his left leg. Recovery after each surgery will require 4-6 weeks of bed rest, elevation, and wrapping of the limb (fun summer and Christmas). Eventually he will have surgery #3 which is corrective by attaching lymphatic vessels to nearby veins to help bypass the damaged symptom. All of this to say, this is going to be a long, difficult and expensive journey for us.

Although we do have insurance through Richard’s job, the deductible is $7,500 per person and the expense of the surgeries, travel expenses to Ohio, and needed medical equipment is staggering. It’s not in my nature to ask for help, but feeling inspired by Jack’s persistence to seek out solutions, wanted to share our journey and what the next year holds for our family. It will be a season of prayers, travel, recovery, rest, patience, and possibly learning to lean on others for support along the way.