Chase R.

Four-year-old Chase spent half a year at N.C. Children's Hospital, nearly 300 miles from home in Franklin, NC, battling acute lymphoblastic leukemia (ALL) and rare complications related to his treatment.

Close Calls: Mountain family spends six months at son's bedside

Sabrina and Dan will always remember Christmas of 2009 as the holiday their world was turned upside down.

Three-year-old Chase, the youngest of their five children, had been having cold symptoms for a few weeks. Nothing eventful really, more of an annoyance over the holidays. Then, while visiting his paternal grandparents in Clayton, Chase had a small fall down a few steps.

"He was acting very hurt, though he really shouldn't have been," recalls
Sabrina of Chase's fall. "We felt really silly, like we were overreacting, but we finally took him to the WakeMed emergency room."

Doctors didn't initially find any reason for Chase's upset. His parents, who both work in the medical field, requested Chase have some blood work done. The result was something they never expected.

"When they came back and told us it looked like he may have leukemia, I thought I was going to faint or throw up," Sabrina remembers.

WakeMed sent the family straight to N.C. Children's Hospital where the diagnosis was confirmed—Chase had acute lymphoblastic leukemia (ALL). Chase's pediatric oncologist, Dr. Stuart Gold, explained that most kids with ALL are hospitalized during their initial diagnosis, receive a central line and chemotherapy and then are discharged and treated in the outpatient setting. Being more than five hours from their home in Franklin, N.C., Sabrina and Dan decided to start treatment at UNC and planned to later transfer Chase to a practice closer to home.

After almost three weeks of inpatient treatment, Chase was allowed to go home. Just a few days after his discharge, though, Chase had his first bout with pancreatitis. He was readmitted to N.C. Children's Hospital.

Three days later, Chase took a harsh turn for the worst.

"When he went into septic shock, it quickly went downhill from there," says Sabrina. "Peds rapid response came in, and all of a sudden there were like 20 people working on him. Dan had gone home to see our other kids. He was six hours away, and there was snow on the ground. In the time it took my husband to get back, Chase got even worse."

Chase was intubated in the pediatric intensive care unit (PICU) and put on an oscillator for more than a month. Then he was put on a ventilator and spent six weeks in the PICU. Finally, he was miraculously weaned from the respirator and transferred to 5 Children's where he stayed for several months while he continued to battle pancreatitis.

"There were some close calls, a chance he would die," explains Sabrina. "It really comes down to your faith. You get to a point where you don’t have anything else, so you have to give it to the Lord. We prayed and prayed and prayed."

Chase's inpatient stay spanned six months during which Sabrina and Dan never left their son alone. After getting back to 5 Children's, Chase needed extensive physical and occupational therapy to help regain the strength to walk, turn and feed himself. The family moved to the Ronald McDonald House so Sabrina and Dan could alternate caring for Chase in the hospital and their 6-year-old daughter, Carlen, who also was with them.

The family could have transferred to a facility closer to home but chose not to because of the exceptional care they received at N.C. Children's Hospital.

"It was our decision to keep making the trip after he was discharged the first time," says Sabrina. "Not many kids get pancreatitis. We wanted him treated where they knew how to care for him. And because we were there so long, we got to know every department at Children's Hospital. They were not just treating Chase. They were treating us, too. It wasn't uncommon for the nurses to cry with us. They're like our family."

More about Chase

Hometown:

Franklin, NC, Macon County—about 580 miles roundtrip

Diagnosis:

Acute lymphoblastic leukemia (ALL)

Primary pediatric specialties:

Hematology-oncology; critical care medicine; gastroenterology; infectious diseases; radiology; anesthesiology; physical therapy

Other pediatric specialties seen:

Recreational therapy; hospital school

Frequency of visits:

Once per month

Favorite caregivers

"After such an extended stay, we grew fond, even close, to many from every department that we can think of. A year later, we maintain regular contact with dear PICU caregivers, nurses Carolyn Whitfield and Kelly Cherry, who come in on days off to visit Chase on clinic appointment days. Resident doctors Jen McEntee and Matt Lewis would visit Chase weekly, even after Chase was not under their direct care. Their compassion, thoughtfulness, insightfulness, and friendship are unmatched.

"Working in the health care industry ourselves, we have never seen such a dedicated, professional, caring, and knowledgeable healthcare staff such is found on 5 Childrens. Although fond of all his caregivers, Chase was especially fond of physical therapist Kerri Blazek and nurses Stacey Shubert and Vanessa Cline." ~ Chase's mom, Sabrina

Favorite thing about N.C. Children's Hospital:

"Our favorite thing about the Children's Hospital is the competent, unequalled quality of health care. Each specialized department merges into one focused team with the mission of providing and delivering superior treatment." ~ Chase's mom, Sabrina


UPDATE: Chase celebrated his 4th birthday this past November—at home, thankfully—and is now in the "maintenance" phase of his ALL treatment. Maintenance phase lasts two years. It includes daily oral chemo (taken at home) and a once-a-month trip to N.C. Children's Hospital for outpatient IV chemo and once every three months for intrathecal chemo, or chemo infused into the spinal cord, coinciding with his monthly IV treatment. If all goes as expected, Chase will finish his treatment just before he starts kindergarten in 2012.

The whole family—Sabrina and Dan, Chase, his three brothers (Devin, 19, Cameron, 16, and Trevor, 11) and one sister (Carlen, 6)—will enjoy Chase's Make a Wish trip to Walt Disney World Resort in Orlando, FL, this month. Chase hopes to meet his favorite character, Mickey Mouse. We’re sure he will and can’t wait to see pictures!

Says Sabrina, "He's so excited! The trip is all he talks about."

 

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