Authors: Elizabeth Dimarco
Enjoli Harris, patient scheduler for Seattle Children’s Sickle Cell Program and “sickle cell mom” with her son, Nehemiah
When patients and families with sickle cell disease (SCD) call Seattle Children’s to schedule appointments, they are greeted by the friendly voice of Enjoli Harris, who is a skilled member of the SCD patient scheduling team and a “sickle cell mom.”
Harris’ youngest child, Nehemiah, was diagnosed with SCD at birth almost 12 years ago and has been receiving care at Seattle Children’s, including at the Odessa Brown Children’s Clinic (OBCC), ever since. The frequent visits have helped Harris not only empathize with the concerns of families, but also better navigate their scheduling needs.
SCD is a group of blood conditions that affect hemoglobin, the part of red blood cells that delivers oxygen to cells in the body. In the United States, approximately 100,000 Americans are affected by SCD, most of whom are of African or Hispanic heritage, however the disease can affect anyone, especially people of southern European, Middle Eastern or Asian Indian heritage.
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Authors: Ashley Speller and Jenni Carson
Tina Janni was a pediatric patient at Seattle Children’s
At the young age of 12, Tina Janni began suffering from flu-like symptoms over the summer that rapidly escalated into kidney failure.
“I rode in an ambulance from Olympia, WA to Seattle Children’s Hospital,” she explained.
Though Janni recalls feeling frightened, a compassionate support system made a significant impact on her family during a deeply difficult time.
“I was fortunate that loneliness was never a complicating issue,” she said. “In addition to my parents, I remember nurses, care providers and staff who were a constant and calming presence during the two months I was a patient.”
Janni was diagnosed with a rare blood disorder called Hemolytic Uremic Syndrome (HUS).
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Authors: Ashley Speller and Jenni Carson
PART FOUR: From witnessing exceptional care and compassion given to children in their own lives, to receiving treatment first-hand, this weekly series features Seattle Children’s employees and the life experiences that drove them to pursue careers in healthcare.
Natalie Jean Ahrens (left) helped care for Becky Greenway when she was a pediatric patient at Seattle Children’s
In 1991, Becky Greenway was a 17-year-old student facing chronic knee pain throughout her senior year of high school.
“My pain was worse at night and the only way I could get any relief was by soaking it in the bathtub,” she recalled.
Greenway sought care from several primary care doctors who provided varying diagnoses, including tendonitis, growing pains and a possible mental disorder.
“This fourth doctor couldn’t find any reason for my pain, so he was convinced it was all in my head,” Greenway explained.
Feeling exasperated, Greenway’s mother pushed forward, certain that the root of her daughter’s pain was something more serious.
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Authors: Ashley Speller
Pediatric, adolescent, and young adult patients with cancer and blood disorders in the greater Pacific Northwest will be cared for at a new state-of-the-art facility specifically designed for transformative, patient-centered care.
On Dec. 5, the Cancer and Blood Disorders Center (CBDC) officially opened the doors to its new outpatient space at Forest B. Forest B is a 310,000 square-foot addition to Seattle Children’s hospital campus that continues to open in phases throughout 2022.
In addition, the new Seattle Children’s Blood and Marrow Transplant (BMT) Clinic will join CBDC’s outpatient clinic space at Forest B. This move concludes the last phase of the Seattle Cancer Care Alliance restructuring that created the Fred Hutchison Cancer Center and brings all pediatric cancer and blood disorders programs under one roof at Seattle Children’s — making it easier for patients and their families to receive the same exceptional and compassionate care from the dedicated teams at both organizations.
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Authors: Anna Altavas
Update – February 27, 2020: It is our pleasure to share that the individual featured in this story now uses she/her pronouns and goes by the name Iris. She continues to be seen at Seattle Children’s Gender Clinic and advocate for gender affirming healthcare.
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In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.
From as early as Torin could remember, they used writing as a way of expressing emotion.
“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”
Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.
Each individual should have the power to create their own story and be true to themself.
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Authors: Ashley Speller
PedAL leadership left to right: E. Anders Kolb, Gwen Nichols, Samuel L. Volchenboum, Laura Di Laurenzio, Soheil Meshinchi, Todd Cooper
The PedAL (Pediatric Acute Leukemia) Master Trial is part of the Leukemia & Lymphoma Society’s Dare to Dream Project with one of Seattle Children’s doctors leading the clinical trials for pediatric acute leukemia.
For children battling through a diagnosis of relapsed leukemia, moving away from standard chemotherapy and onto newer, safer treatments is something many families are hopeful for.
Seattle Children’s is actively working to identify, validate and innovate how children with pediatric acute leukemia, including acute myeloid leukemia and other high-risk leukemias, are treated through a collaborative master screening clinical trial led by The Leukemia & Lymphoma Society (LLS) called Pediatric Acute Leukemia (PedAL).
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Authors: Rose Ibarra (Egge)
Josh, Harper and Meagan in June 2022
Two years ago, Meagan stood in a hospital room at Seattle Children’s cradling her 1-year-old daughter, Harper, against her chest. Her fiancé, Josh, huddled close to them and kissed the thinning hair on top of their baby’s head.
A feeding tube was routed through Harper’s nose and her eyes were brimming with tears. Exhausted, she snuggled into her mom’s arms as a photographer took their picture.
Meagan and Josh feared those would be the last photos taken of their baby girl.
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Authors: Madison Joseph
On June 1, 2022, Seattle Children’s opened the doors to our new Forest B building – the latest addition to the Seattle Children’s hospital campus.
When Seattle Children’s began planning for the Forest B building 10 years ago, we wanted to formally recognize that the hospital is located on the traditional land of the Coast Salish people through an art installation in the lobby. We sought out an artist with a deep understanding of the Pacific Northwest and a whimsical style that patients and families could connect with. We were lucky to find Shaun “Qwalsius” Peterson, who has been creating public art inspired by the Puyallup people’s heritage and the greater Pacific Northwest region for more than 20 years. Qwalsius designed, carved and erected a Story Pole in the Forest B lobby that will now be enjoyed by all the patients, families and workforce members who walk through our doors for decades to come. Read full post »
Authors: Madison Joseph
New “Forest B” Building Features More In-Patient and Operating Rooms, Cancer and Blood Disorders Care Facilities and more
On June 1st, Seattle Children’s opens the latest addition to the hospital campus — a building called “Forest B.” Forest B is a project over 10 years in the making and will add an additional 310,000 square feet of space to the hospital campus.
“Forest B is a critical addition to Seattle Children’s, given our region’s incredible historic and anticipated growth,” said Mandy Hansen, senior director of planning, design, and construction at Seattle Children’s. “The building gives our care teams the space they need to provide lifesaving and life-changing treatments, surgeries and procedures to even more patients in the coming years. The thoughtful design will also help us integrate more of our breakthrough research into the clinical care environment as we tirelessly work toward cures.” Read full post »
Authors: Seattle Children's
Amna and her family moved to Seattle to get the best treatment possible for her daughter Jude, who has sickle cell disease. This is Amna’s story in her own words.
I will never forget the moment I learned I was pregnant with my daughter, Jude. I had moved from Sudan to join my husband, Amar, in the United States the year before. In my culture, we have big families with lots of kids, and Amar and I wanted to start our own family right away.
It took a long time for me to get pregnant, but when I finally did, I felt like I was flying! I named my baby Jude that day. In Arabic, it means “the gift.” She was my gift from God.
Back then, I never imagined my baby’s life would be at risk before she reached her first birthday.
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