The Beacon Sickle Cell Program
Sickle Cell Therapy through the Pediatric Hematology-Oncology Program at Beacon Children’s Hospital includes ongoing monitoring of children and adolescents with all forms of sickle cell disease, as well as management of acute complications. “There are some children who have frequent complications and there are other children who live with sickle cell disease and have very good quality of life,” says Dr. Colleen Morrison. “Sometimes the unknown of what that might bring is one of the most significant hurdles for families to manage.”
Sometimes when our patients are in crisis, it’s an issue of needing help right away. It is a matter of life and death. Having that care close to home is so vital. –Barbara Johnson, Beacon Sickle Cell Program
For the Freeman family, Beacon’s Sickle Cell Program helped alleviate much of that anxiety. “We teach parents how to monitor for complications. It’s like they’re getting a crash course in medical care,” Dr. Morrison adds. “We tell them to call 24 hours a day, 365 days a year… there are no silly questions.”
From their very first appointment, the team at Beacon won Antoinetta’s confidence. “When we walked in, they knew who we were, they knew our names and really welcomed my son, myself and my family,” she recounts. “Everybody is friendly, all the staff there has been amazing. Any time I had questions; they were able to answer them in a very timely manner.” The Beacon team even helped coordinate the social workers and programs to be put in place at Trevor’s school, ensuring the teachers and staff fully understood all that was required. “Beacon has been a tremendous partner in helping us achieve what we needed to achieve for my son.”
Vital Care. Close to Home.
Knowing the Beacon team is there for her son is comforting for Antoinetta – but never more so than when Trevor is in crisis. She recalls a time when she got a call at work. “They told me he had a fever of 104. I called Beacon in a panic and told them we were on our way. The woman I spoke to calmed me and told me to be safe and not rush. She reassured me that they would be there for us.”
As soon they arrived at the hospital, the team immediately started giving Trevor the treatments he needed. “They were all working on him and I can remember the nurse turned around and she looked at me and said, ‘Mom… are you okay?’ In that moment, I just broke down,” Antoinetta tears up as she relives the experience. “I knew I got him where he needed to be. He was being taken care of, and he was going to be okay. Just knowing in that moment, despite everything that was going on, she managed to stop and realized that I was about to fall apart. That meant everything.”
When people come here, we give them hope. There is a change. We can do something for your child. You can get some rest. We’re going to make a difference in your home. – Beverly Milon, Sickle Cell Program
Making a Difference for Families
Beacon’s Sickle Cell Initiative helps meet the needs of individuals with sickle cell disease and their families through education, counseling, care coordination, screening and referrals. “It’s very important that we have this program in our area. We are out there – in schools, at health fairs, in grocery stores – we are everywhere trying to make a difference,” says Beverly Milon, a program representative.
For the Freemans, that difference is clear, and Antoinetta sums it up beautifully. “As we say in our family, Trevor has sickle cell disease, but sickle cell doesn’t have him. We keep him going, and Beacon has been a great partner in helping us keep that motto.”
Meet Trevor Freeman. You may want to remember his name – because this young man has some big plans. “My son is an energetic, outgoing, heartwarming person,” says his mom, Antoinetta. That much is clear in Trevor’s expressive eyes and charming smile. “He’s been golfing since he was seven years old, and that’s just his dream: he’s going to be a professional golfer one day.”
