What to Expect
Most children with cancer survive. Even so, a diagnosis of cancer can feel overwhelming for families.
At Seattle Cancer Care Alliance (SCCA) and Seattle Children’s, we have an experienced, compassionate team ready to help you adjust to what’s happening. You may want to talk to a Child Life specialist, social worker or chaplain; join a support group; get suggestions on talking with your child about cancer; or visit the Patient & Family Resource Center.
Ask someone you trust to go with you to doctors’ appointments and tests. This person can provide emotional support. A friend can also help by keeping track of questions you want to ask, taking notes and doing research on your child’s disease and treatment options. Consider our list of questions to ask your child’s doctor.
Where Your Child Will Be Seen
Children with a diagnosis of leukemia may receive their standard treatment at Seattle Children’s, an SCCA parent organization, located at 4800 Sandpoint Way NE in Seattle. Seattle Children’s provides care for children with cancer up to the age of 21 years, normally at the Hematology-Oncology Clinic.
Your child’s healthcare team will be made up of professionals from many disciplines who work together to care for your child. These include pediatric oncologists, nurse practitioners, nutritionists, Child Life specialists, social workers and many others. Read more about the cancer team at Seattle Children’s.
Each child’s journey at Seattle Children’s is different depending on the child’s needs. Many children with cancer first visit us because their doctor at home recommended this. Some are referred to the emergency room because of acute cancer-related illness, and then they are admitted for a stay in the oncology unit of the hospital so they can receive immediate around-the-clock care. Others come to the hospital for other services, such as to have a mass removed, and then doctors discover the mass is malignant, so the child begins cancer care with us.
Bone Marrow Transplantation
If your doctor has determined that your child’s next course of treatment is a bone marrow transplant, Seattle Cancer Care Alliance is the best place to be.
You or your doctor may call our Intake Line at (800) 804-8824 or (206) 288-SCCA (7222). You will be connected to the clinic coordinator for bone marrow transplantation. Your first appointment will be scheduled at that time.
Bone marrow transplantation is about a four-month treatment process. Your child will receive their work-up and conditioning regimen at the Seattle Cancer Care Alliance clinic, located at 825 Eastlake Avenue East in Seattle. View a map and driving directions.
During this time, your child may become an SCCA inpatient at Seattle Children’s. Your child will most likely receive their actual transplant as an inpatient and will remain an inpatient for about two weeks after the transplant. After that time, your child will return to their outpatient status. Your SCCA transplant team will provide exceptional care for your child in both locations.
What to Expect After Cancer
Seattle Cancer Care Alliance has a long-term follow-up program for childhood cancer survivors. It’s designed to help survivors and their families deal with later effects of their disease and treatment.
Even when children are cured of cancer, their cancer history and treatment can affect their health for years to come. As many as two-thirds of childhood cancer survivors have adverse long-term effects. Some may be clear early on. For instance, some children who received radiation therapy to their brain may have learning difficulties. These children may need support to rejoin school successfully.
Many effects are not clear or relevant until later in life. For instance, some children who received the chemotherapy drug doxorubicin may develop cardiomyopathy, a weakening of the heart muscle. This heart condition may not cause symptoms. But it can put women survivors at higher risk of heart failure during pregnancy and delivery. So it’s important for women and their doctors to know about this.
The long-term risks for each childhood cancer survivor depend on many factors, including the type of disease, the treatments they received and their age at the time of treatment. The long-term follow-up program starts with a comprehensive review of the survivor’s treatment and health. Then each survivor gets a notebook of information that applies to their unique situation.