Three-year-old Rayne Cumberbatch is getting life-saving treatment after being accepted into the National Institute of Health’s (NIH) aplastic anemia clinical trial. Her mom Agnes Cumberbatch said the toddler is responding well to treatment and that doctors are confident Rayne will continue to respond well to the treatment.
“So far, she seems to be doing well with the treatment; no severe reaction. Her blood pressure has been pretty high, but she’s happy, comfortable … content,” said Cumberbatch.
Rayne was diagnosed in May with aplastic anemia, a rare and serious condition that can be life-threatening. Her platelets, along with her red blood cells and white blood cells, have been compromised. When Rayne’s platelet count drops too low, it causes bleeding, anywhere from her eyes, mouth, gums, teeth, under the skin, around the brain or around the lungs – the result is she had to have the transfusions to keep her levels up just enough to limit the bleeding.
She had been hospitalized since her diagnosis, and had to take life-saving blood transfusions every three to four days. Her diagnosis meant her parents, Agnes and Ray Cumberbatch, needed to seek medical intervention outside the country. They were also advised that Rayne could require a bone marrow transplant to the tune of $400,000. The Cumberbatch family was informed of the NIH clinical trial, to which, if Rayne was accepted, her treatment would be free. They decided to try to get the toddler in the program.
Getting Rayne to Washington, D.C., did not come without its challenges. On the day the family was due to depart New Providence, the toddler stopped responding to the transfusions she had been receiving. Doctors advised the parents against Rayne traveling.
“Her platelets dropped to about 2,000 and they didn’t want her to travel. They said she was too at risk and it would have been a while for us to get into the hospital, and it could have been fatal.”
The decision to take Rayne to Washington, D.C. was left to her parents.
“It was either leave her in Nassau or take the risk and fly and, if anything happened, potentially, she could bleed out. We made a decision and stepped out in faith,” said Cumberbatch. She said had they remained in Nassau, her daughter would have been a “sitting duck” because she needed matched platelets.
Once the family arrived in Washington, D.C., they had to quarantine for five days, and take COVID tests before Rayne could be retested to confirm an aplastic anemia diagnosis. A bone marrow biopsy confirmed her diagnosis. After meeting the criteria, she was then admitted into NIH’s clinical trials.
The trials look to find new ways to prevent, detect or treat disease and improve quality of life. Clinical trials – and other types of clinical studies – are part of medical research and involve people. When a person volunteers to take part in a clinical study, they help doctors and researchers learn more about disease and improve health care for people in the future.
Researchers are studying many aspects of aplastic anemia, such as the efficacy of new combination treatments, new methods of stem cell transplant to reduce complications and improve outcomes, and optimal dose of immunosuppressants following stem cell transplant.
“Since treatment began, she hasn’t had any major complications, other than high blood pressure. Her body stopped responding to the transfusions, so she now requires matched platelets instead, meaning she can no longer have just any platelet transfusion. It has to be matched alongside a donor to see if it would actually work for her before being administered,” said Cumberbatch.
Rayne’s treatment entails taking a lot of medication. She takes 13 different medications daily, starting at 4 a.m., with a medication that restricts the toddler from eating certain foods four hours before and after ingestion. The course of medications continues throughout the day.
Rayne started out on the medications in hospital. Once medical officials saw she was responding well to the medications, the family was allowed to take the toddler to where they are residing while she receives treatment. Since she was allowed out of hospital, she’s had one scare. She got sick and had to be rushed to the hospital. It turned out to be an infection in her port line, which allowed bacteria to get into her blood stream. Rayne has a central line placed in her chest.
With Rayne comfortable, Cumberbatch said she feels better.
“It was rough for her at first, adjusting from Nassau to coming here to a big hospital in a completely different environment, but she has completely warmed up. She’s not afraid and not anxious, so it’s comforting to me.”
With a long process ahead of them, Cumberbatch said she has her days and that she sometimes finds it rough when she sees her daughter going through it. She also has tough times getting Rayne to take all the medications.
“She has her moments; I have mine,” she said.
Rayne’s treatments are expected to last at least six months, including taking another two biopsies to determine how her body is responding to treatment. If she’s clear at the end of the treatments, the family can return home to The Bahamas. If the final biopsy result isn’t positive, the family will have to look at doing a transplant with their five-year-old son, Ryan, or another match as a donor.
When Rayne was initially diagnosed and the Cumberbatches realized the financial challenge they would face for a bone marrow transplant, with no health insurance for their toddler, they turned to crowdfunding to help raise the money. Through GoFundMe, they raised $18,573. After being accepted into NIH, and treatment being offered free of charge to Rayne, they suspended the account. The money they raised will be used by the family to cover expenses they will incur for the duration of Rayne’s treatment.
Earlier this year, Cumberbatch noticed bruising/a rash on Rayne’s skin. She initially thought it was an allergic reaction to the new hair product she had used on her daughter. She reached out to their doctor who prescribed medication and the bruising/rash cleared up.
A few days later, she noticed the bruising/rash on Rayne’s skin again and brought it to her husband’s attention. A few days after that, she noticed increased bruises/rashes on her daughter. Something, she said, made her look into her daughter’s mouth where she saw blood bruises everywhere on Rayne’s tongue, cheeks, gums and lips. It was at that moment that Cumberbatch said she knew something was wrong. Every pediatrician she reached out to was closed for the day, but as her daughter wasn’t in distress, and was happy and smiling, she felt they could wait until the next day to take her to seek medical attention.
By the time she was preparing her daughter for bed that night in May, she noticed a golf ball-sized mass protruding from Rayne’s abdomen and said she knew they had to immediately take the toddler to the emergency room.
“I was afraid. I was terrified, especially when they said things didn’t look good and they found something in her blood. When they said she had to be airlifted [from Grand Bahama to New Providence], I knew it was serious. I was trying to be brave and strong but, deep down inside, I was terrified.”
Rayne was airlifted to New Providence and hospitalized from May up until she traveled to Washington, D.C. in July.