For the past two years, Emberlyn Wray has entertained our team and her fellow patients with her sassy, spunky and unforgettable personality.
She’s known for singing songs and dancing in her hospital room, the hallways of our ASK Hematology and Oncology Clinic and “the fishbowl” (our aquatic-themed infusion room). She also has a knack for easily making new friends. “Emberlyn doesn’t hesitate to go up to the other kids in the waiting room or fishbowl and give them a big smile and see what they’re doing,” Katie Barber, child life specialist for the ASK Pediatric Hematology and Oncology Clinic team, explains.
“The biggest thing is that she never stops smiling,” Ashley Wray says of her 3-year-old daughter’s many visits to CHoR. “Even when she has moments where she feels terrible, she’s still smiling and interacting – from the moment she gets on the elevator and all through her appointment.”
Emberlyn was diagnosed with pre-B cell acute lymphoblastic leukemia when she was just 22 months old. ALL is a cancer that the affects the blood and bone marrow, causing problems with cells that make antibodies to fight infection. It is the most common type of cancer in children and can worsen quickly without treatment.
In the months prior to her diagnosis, Emberlyn experienced a few upper respiratory infections. Her parents also noticed she’d started limping. “We thought it was something simple,” Ashley recalls. “We brought her to the pediatrician but there was nothing they could find wrong with her hip.”
Emberlyn’s limp worsened quickly and the following week her parents brought her from their home in South Hill, Va., to our pediatric emergency room. Though x-rays taken there looked normal too, her blood work was concerning and she was admitted that night for more testing. They received the diagnosis the next day. “The world stopped spinning,” Ashley recalls of that moment. “And our world just turned upside down.”
Things moved very quickly from there. Under the guidance of our hematology and oncology team, which includes pediatric hematology and oncology specialists, nurses, nurse practitioners, researchers and other medical and support specialists from CHoR and VCU Massey Cancer Center, Emberlyn’s treatment began immediately. “Within just eight hours, she’d had a blood transfusion, a bone marrow biopsy, a port placed in her chest for chemotherapy, a lumbar puncture to test spinal fluid and her first chemotherapy treatment,” Ashley recalls.
Emberlyn’s treatment regimen continued to be intense for the next nine months. She had scheduled inpatient admissions for chemotherapy to kill the cancer, bone marrow testing to measure progress and blood transfusions when her blood counts were low. She also had several hospital stays for fevers and other concerning issues.
In the current phase of her treatment, Emberlyn has outpatient chemotherapy at least once a month and related testing, procedures and treatments when needed. Her ever-present smile is reflective of the strong attitude she’s shown throughout: “She doesn’t have a lot of fear of the unknown or of her treatments,” Ashley says. “This is all she can remember. To her, procedures and treatments are an absolutely normal part of life.”
One big play date
Emberlyn was not even two when she was diagnosed and undergoing these types of treatments and procedures can pose unique challenges for such a young child. Communication about what’s happening, or exactly how a child is feeling, can be difficult. Things like waiting for a procedure can also be trying at times for a young child. This is where having a team specially trained to work with children can be particularly helpful. Meeting a child at their developmental age is an important part of this type of care.
Though Emberlyn’s interactions with child life and other team members may be playful at times, much of what they’re doing with her is intentional. “With someone Emberlyn’s age, we make sure to get down to her level when talking with her,” Katie explains. “You’ll even see team members outside of child life playing dolls with her or helping her make something out of play dough to make her feel comfortable with the entire team. We make sure that if it’s going to be a long clinic day that we have plenty of age-appropriate activities available. You may also see a nurse walking down the hall with Emberlyn to give her a break from being in a room for long periods of time. Our team gets to know each child so that we know what their interests are, like their favorite toy or character, so we have something to talk with them about besides their diagnosis.”
With her personality and young age, Ashley said it was often a “guessing game” in terms of how Emberlyn was feeling so the team’s time with Emberlyn was also helpful in this regard. “It’s so important that a child’s medical team gets to know them well,” Katie says. “With kids who we see regularly like Emberlyn, we get to know them and their personalities so we can tell by their actions and behaviors when they’re not feeling well – when they’re not acting like their ‘normal’ self.”
Emberlyn is not allowed to eat or drink before many procedures and through much of her treatment Ashley says she couldn’t understand why she wasn’t allowed to eat when she was hungry. To help a child and family cope in these situations, the child life team often relies on distraction techniques. “It’s a big part of our job,” Katie says. “Emberlyn won’t understand the reasoning behind why she can’t eat, so we use activities and toys as a distraction to keep her mind off the fact that she can’t eat.”
With such a strong focus on child-friendly care and a child’s experience, Ashley says that many appointments ended up being like “one big play date” to Emberlyn. “Everyone – doctors, nurses and support staff – have been absolutely amazing and great with her,” she says. “We’ve gotten to know child life and the inpatient and general pediatric nurses well. They are a wonderful example of care focused on the child. There’s always something there for her to do, even when she’s having a bad day or is hungry or not feeling well, and there’s always someone there to help distract her, pay attention to her or to play. There’s even a special prom for kids like Emberlyn.”
Watch out world, here she comes
Supporting Emberlyn in new childhood experiences outside the hospital walls is also part of a care program for a child her age and in recent months Emberlyn’s taken some pretty significant steps in that regard.
This past June, she performed in her first dance recital. Though she couldn’t attend every class, the staff at Dance It Out Studios made sure she had the opportunity to dance – one of her favorite activities – and to have fun. Emberlyn plans to continue ballet this coming year (and her friends at CHoR look forward to seeing more videos!).
Emberlyn also started preschool this fall. Ashley says it was her medical team who encouraged enrolling her. “I had quite a bit of anxiety about her starting preschool,” she comments. “They’ve been very patient with all my questions and supportive of the entire experience.”
August 30 was her first day and according to Ashley, things are going well. “Every afternoon she is very excited to tell us what she did during the day. She gets to play, eat and sleep there – all of her favorite things!”
Experiencing the joys of childhood along with her peers is high on the list of our goals for Emberlyn and the many other children who come to us for this level of care. For Emberlyn, these new adventures are the start of many that her team and family hope to see her make in the coming years, bringing her big personality and big smile to an even bigger audience of new fans and new friends.
The “Meet our Calendar Kids” blog series highlights children featured in CHoR’s Tid*Bits calendar. Join our mailing list to receive future issues of the Tid*Bits calendar and newsletters. We hope you’ve enjoyed getting to know Emberlyn our featured patient for September 2017.
More about Emberlyn – fun facts:
What she likes to do for fun: Dancing, playing dolls, coloring, playing outside, riding her princess carriage and getting into mischief with her 7-year-old big brother, Everette
Favorite food: pancakes, strawberries and cheese sticks
When she grows up: wants to be a princess
Most memorable CHoR moment: “There have been so many memorable moments that I really can’t pick just one. I think the most memorable part of her journey thus far has been watching her interact with the hematology/oncology staff. Her face literally lights up when she sees the staff that she knows well. To her, many of the appointments are like one big play date.” – Ashley Wray, Emberlyn’s mom