“Every single doctor, every single nurse, every single shift - I am so appreciative of their professionalism.”
Rutgers Cancer Institute and Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital Patient Refuses to Let Chronic Blood Disorder Slow Her Down
There isn’t much that slows down Amanda Carter. The 22-year-old Somerset resident and recent Rutgers University graduate is studying to become a yoga and Pilates instructor, loves dance and now teaches ballet at her alma mater. She also produces content for her blog, Tik Tok and Instagram pages.
But one thing always had the potential to get in Amanda’s way: sickle cell disease.
Amanda was diagnosed with hemoglobin sickle cell anemia shortly after birth. She has managed the condition her entire life with few problems – remaining cautious about her health while making sure that she always had proper rest and stayed hydrated.
“I was very blessed to not have any symptoms,” Amanda says.
That changed after Amanda attended Dream Con 2025 in Houston last June. The extreme heat and humidity, worse than what she ever experienced in her home state of New Jersey, left her in excruciating pain.
“The level of oxygen that I could get breathing in the air there is not what I could get in New Jersey,” Amanda recalled. “I had never felt that level of pain before – it was shocking,”
When she returned from Houston, Amanda felt tired and sore, but thought it was normal fatigue that you feel following a long trip and air travel. As a dancer who works out regularly at the gym, Amanda is used to some muscle soreness, but this was different. The pain grew worse over time and no amount of ibuprofen and acetaminophen seemed to help.
One night, the pain became too much for Amanda to bear and her mother, Jackie, decided to rush her to the Pediatric Emergency Department at The Bristol-Myers Squibb Children’s Hospital (BMSCH) at Robert Wood Johnson University Hospital.
Amanda had been under the care of Richard Drachtman, MD, pediatric hematologist/oncologist at Rutgers Cancer Institute/Jack & Sheryl Morris Cancer Center and Professor of Pediatrics at Rutgers Robert Wood Johnson Medical School, for most of her life. Jackie called Amanda’s Rutgers Cancer Institute nursing team. They let BMSCH Pediatric Emergency staff know that Amanda was on her way while briefing them about her sickle cell diagnosis.
According to Dr. Drachtman, Amanda has Hemoglobin SC, a form of sickle cell where two abnormal forms of hemoglobin are present in the blood. Hemoglobin SC is a moderate type of sickle cell disease that does not require periodic blood transfusions. However, if it’s not managed properly it can cause chronic issues such as eye and heart damage.
“The problem with SC patients is that they tend to be okay, are feeling okay, and they don’t stay current with their appointments or follow-up care,” Dr. Drachtman explains. “If you do not hydrate properly, SC can cause problems. The red cells start to sickle and oxygen can’t get from point A to point B in the affected area, causing pain.”
While Amanda stayed current with her care plan and managed her health consistently, the Houston trip combined with the stress of completing her degree a month earlier and planning the next chapter of her life, took its toll on her.
When Amanda arrived at BMSCH, the Pediatric ED team took steps to address and manage Amanda’s pain. She was admitted to BMSCH’s Pediatric Hematology/Oncology Unit that night and would spend the next week there, receiving fluids and getting much-needed rest.
Dr. Drachtman says the best way to manage Hemoglobin SC is to prevent it from happening in the first place.
“We try to prevent it from happening primarily,” Dr. Drachtman notes. “But if hospitalization is necessary, we try to hydrate the patient as much as possible and have them rest.”
Now back at home and pursuing the activities she loves, Amanda is deeply grateful to the BMSCH staff, particularly Pediatric Hematology/Oncology Nurse Erin Lajoie, RN, who helped her recover.
“I am so appreciative of the care they gave me,” Amanda says. “When you are at one of your lowest moments, you see the true character of others. When I was in pain, the nurses showed me so much empathy. Nurse Erin was so amazing, so caring, so aware of the pain I was experiencing. She made my comfort a priority.”
Her mother was impressed by the teamwork and personalized care demonstrated by BMSCH staff during her daughter’s stay.
“Every single doctor, every single nurse, every single shift - I am so appreciative of their professionalism,” Jackie says. “They regularly shared information (during shift hand-offs). All of them worked collectively and collaboratively. They were a team. You didn’t have to worry about starting over with each shift or comparing notes. It was just a personal, caring experience.”
Dr. Drachtman’s advice for sickle cell patients is simple – stay vigilant about the disease.
“Be compliant as possible (with follow-up visits). Stay ahead of yourself,” Dr. Drachtman says. “Stay hydrated and get proper rest. Avoid anything that could potentially dehydrate you – that applies to all sickle cell patients.”
Amanda will continue to follow that advice, especially after her recent hospitalization. Her advice to others with SC is to be proactive with your health - drink plenty of water, get proper rest and take care of your body.
“My body and my health come before anything,” Amanda says. “We are young and we shouldn’t fear living, but you have to take care of yourself.”