patient experience
the first few days
A cancer diagnosis is stressful for families trying to comprehend what is happening to their child. Our team moves quickly to confirm the diagnosis, establish a plan of care and begins treatment.
During your first visit to the clinic, you will meet with a hematologist/oncologist, nurse practitioner and others who can answer your questions and help you prepare for the days and weeks ahead. We will schedule necessary tests as quickly as possible, often on the same day.
The multidisciplinary team will meet to talk about test results and create a treatment plan. Your oncologist will then spend time reviewing the plan with your family and answering any and all related questions. This treatment plan can include surgery, chemotherapy and/or radiation therapy. Depending on the type of cancer your child has and how advanced it is, we may recommend starting therapy the next day. In most cases, therapy begins within the week.
outpatient care
Patients come to our outpatient cancer clinic for physician appointments and procedures such as transfusions and chemotherapy. Our team takes care of:
- Scheduling appointments and tests
- Working with insurance companies to confirm coverage and obtain pre-authorizations
- Requesting prescriptions and refills
- Educating families about at-home care
- Making referrals to other specialists as needed
Our nurses make sure that the clinic is a happy place! They take time to get to know each child—their interests and hobbies, what makes them feel scared, what eases their anxieties. We celebrate birthdays and everyday accomplishments; we laugh with families and sometimes cry together, too. Also, kids participate in a special program called Emily’s Beads of Courage, which provides beads to patients as they progress through treatment. Each bead represents a different treatment or milestone, and is used to create a colorful necklace.
inpatient care
When patients need to be hospitalized, they are admitted to our dedicated hematology/oncology unit. This unit provides special care for patients receiving prolonged chemotherapy or recovering from a surgical procedure, or those who are ill and need round-the-clock care.
Every day during “morning rounds,” one of our pediatric hematologists/oncologists will come to the patient’s room with resident physicians, the charge nurse, other nurses and a nurse practitioner.
The team will go over any test results, talk about what will happen in the day ahead and answer any questions families may have.
During their hospital stay, patients receive comprehensive care from our doctors and nurses. Also, patients interact with many more healthcare personnel including psychologists, registered dietitians, social workers and child life specialists.
Volunteers often come by to spend time with children and play games. Family members are always welcome to take a break in the family lounge, which features a large-screen television, kitchenette and comfortable chairs. All hospital guests can take advantage of the hospital’s free WIFI.
Discharge planning begins almost as soon as the child is admitted to the hospital. Our goal is to make sure families have everything they need when the child goes home, such as prescriptions, home care services and follow-up clinic appointments. If questions arise after the child is discharged, parents can call the clinic during regular hours. After hours, they can call the hospital operator and ask for the hematologist/oncologist on call.
education and support
Taking care of a child with cancer can feel like an overwhelming responsibility. Our team is here to share the load by providing support every step of the way. Our team wants to help with whatever needs families have. Do not be shy about asking!
Nurse practitioners as well as shift coordinators are the point persons for families whose child has just been diagnosed with cancer. They work with patients in the clinic and in the hospital’s inpatient cancer unit and:
- Provide all education for newly diagnosed families to help them know what to expect and how to meet their child’s needs at home
- Work with other nurses to organize multiple appointments and tests
- Coordinate discharge planning for inpatients
- Connect new families to “veterans” whose children are further along in the journey
- Answer emails and phone calls from parents who need information or additional support
- Talk to school nurses and teachers to make sure patients have what they need to be successful in school
- Coordinate referrals to other hospital departments, such as psychology, nutrition therapy, social work, and physical rehabilitation
