Maddie B Maddie B.

Embrace Kids came in the first day we were there when I didn’t understand the full impact of what was going on

Vicki Beirne experienced every parent’s worst fear when a routine trip to the doctor to treat what she thought was her nine-year-old daughter Madelyn’s (Maddie) bronchitis suddenly turned into a serious crisis.

Maddie was diagnosed with single T-cell lymphoblastic leukemia at just nine years old. Anxiety gripped Vicki and her family. No one knew what to expect. Following a diagnosis like Maddie’s, there are so many questions that parents face: What would the course of treatment be like? How long would Maddie have to stay in the hospital? When could she return to school? And perhaps most importantly, what did the future hold for her?

Thankfully for the Beirnes, there was an organization and a program ready to support them during this difficult time: Embrace Kids Foundation and The David E. Zullo Pediatric Advanced Comprehensive Care Team (PACCT) at The Bristol-Myers Squibb Children’s Hospital (BMSCH) at Robert Wood Johnson University Hospital (RWJUH).

“Embrace Kids came in the first day we were there when I didn’t understand the full impact of what was going on,” Vicki recalled. “They are just persistent and know exactly what you are going to need. They anticipate your needs every step of the way.”

For the past 26 years, Embrace Kids Foundation has supported families whose children are receiving treatment for cancer and blood disorders. Embrace Kids has provided major gifts exclusively to two medical institutions throughout its history: The Bristol-Myers Squibb Children’s Hospital and Rutgers Cancer Institute of New Jersey. Embrace Kids recently pledged $300,000 over three years to support the PACCT Program at BMSCH. Since 1991, Embrace Kids has provided major gifts totaling $4 million to entities now part of Rutgers Biomedical Health Sciences and $3 million in major gifts to RWJUH. Of this total, $2 million has supported the PACCT Program. Funding for the PACCT Program is the largest pledge ever done by Embrace Kids Foundation and the most recent gift will allow for the hiring of critical medical staff needed to help more patient families The internationally recognized PACCT Program was established to meet the unique needs of high-risk pediatric oncology patients like Madelyn. The program provides seamless continuity of care through the child’s hospital stay to the child’s return home following discharge.

Maddie
Maddie Beirne successfully underwent treatment for leukemia at The Bristol-Myers Squibb Children’s Hospital (BMSCH) at Robert Wood Johnson University Hospital (RWJUH) and through a unique program offered by BMSCH, The David E. Zullo Pediatric Advanced Comprehensive Care Team (PACCT). PACCT, which recently received a generous $300,000 donation from Embrace Kids Foundation, enabled Maddie to receive treatments at home and return to school.

“The kids and families deserve the best comprehensive medical treatment, whether they are at home or in hospital,” explains Embrace Kids Foundation Executive Director Glenn Jenkins. “Embrace Kids is a thriving and passionate community with a calling to provide every resource and support possible. It is important to Embrace Kids to sustain the David E. Zullo PACCT Program as it serves the best interests of the patient families. This $300,000 commitment will go a long way to give families the comfort and care they need to ease their rough road through treatment.”

Miguel Rodriguez, a current Embrace Kids Board member whose son, Michael, was a patient of the PACCT Program, recounted how much that continuity means to a parent. “We knew he was safe at the hospital; we didn’t want to leave the amazing nurses. We were assured by Embrace Kids Foundation that the same nurses who were treating him in the hospital would be the same nurses coming to our house. It was the peace of mind we needed when that is all you’re looking for.”

Typically, home care would be provided by caregivers not associated with the hospital or clinic. With PACCT, families never have to readjust to a new team of caregivers throughout the entire course of treatment up to remission, cure, or end of life. Because the PACCT members have been there from the beginning, they are familiar with the child, treatment regimen, and family at the most critical time.

Maddie endured more than two years of hospital stays and treatment as she fought her disease. In the first year following her diagnosis, Maddie spent nearly 100 days in the hospital. Vicki remains grateful that Embrace Kids and PACCT remained close by Maddie’s side and helped guide her through her treatment.

“Maddie struggled with denial when she was diagnosed, and she did not want anyone around,” Vicki said. “Embrace Kids was persistent in visiting her. They encouraged her to come to the playroom or brought her a fun meal and encouraged her to eat. They also provided her with a laptop, held a birthday party for her, as well as Thanksgiving and Christmas holiday celebrations for patients and their families.”

Once Maddie summoned the courage to fight her illness, PACCT gave her the necessary medical and social support she needed to overcome it.

“Karen (Else Cambria, PACCT Counselor) is rock solid. We were very overwhelmed in the beginning with people wanting to help us – family and friends – which is a wonderful gift, but I talked to Karen endlessly about that stuff. She said, ‘Vicki, people want to do something to help, you just have to open your mind to it. She was really good guiding us through things like that.’ “

PACCT also played a crucial role in helping Maddie transition home and back to school.

“One of the best things she did was come to Maddie’s school,” Vicki said. “After the first two weeks in the hospital, we thought she might be able to go back a bit, maybe half-days, so she was nervous about what people in school would say. Karen did an in-service that her school still talks about as one of the most phenomenal that they’ve had. It was clear and concise and catered to the age group.”

By providing treatments for Maddie in her home, PACCT greatly reduced the stress on the Beirnes.

“We didn’t have to drive to the hospital – you’re so exhausted from it all to be able to get that at home was just what we needed,” Vicki explained. “Maddie was more comfortable not having to be in the hospital, and be away from home and away from her siblings. Since everything in her world was out of her control, to be in her own controlled environment took the edge off of another medicine or another treatment.”

Looking back on their family’s journey, Vicki credits Embrace Kids and PACCT with helping her family maintain a sense of normalcy as Maddie battled her disease. She was impressed that the entire team was in constant communication and they paid particular attention to the emotional needs of Maddie’s siblings by including them in playroom activities and remembering their birthdays.

“There are not enough words to describe what I consider to be our team. Karen and Pam and the clinicians and Embrace Kids, I saw them all as one,” Vicki said. “Their value is immeasurable. They help the patients heal in more ways than one.”

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