The Jaydie Lynn King Neuro-oncology Program at Phoenix Children's Hospital is the only comprehensive pediatric program of its kind in Arizona, combining the expertise of subspecialists in Barrow Neurological Institute at Phoenix Children's Hospital and the Center for Cancer and Blood Disorders (CCBD). We offer family-centered, multidisciplinary, coordinated care to provide hope, healing and the best healthcare for children and their families.
Will my child survive?
Answer: When you arrive here, you’ll be placed in the care of a dedicated team of health professionals who can share information on your child’s diagnosis, treatment, and recovery. Every child and every diagnosis is unique. That being the case, your care team will discuss with your family what you can expect once the team has had the chance to develop a treatment plan for your child. That discussion will cover medical treatment, psycho-social considerations, and financial needs. We will also discuss your child’s and family’s future. Every situation is different, which is why we gather all of the information we can on your child’s specific diagnosis before we begin these conversations with you. The good news is the five-year national survival rate for pediatric brain tumors exceeds 61 percent, so there is plenty of reason for hope.
How did this happen to my child, and why did this happen to my child? Where did this tumor come from?
Answer: It’s important for you to know there is nothing you or your child did to cause the brain tumor. It’s not your fault in any way. Brain tumors do not discriminate. Kids of all ages, of any race, of either gender, in any part of the world can be diagnosed with a brain tumor. It’s equally important for children to understand it’s not their fault – they’re not being punished. It’s not because they didn’t eat right. It’s not because they had a bad thought about somebody or they did something bad. While some children may have a genetic predisposition to brain tumors, the vast majority of pediatric brain tumors are of unknown origin.
What’s the difference between a benign and malignant tumor? Are they both cancerous?
Answer: The concept of benign versus malignant can be very complicated for families to understand, so we take a great deal of time to explain this to families. With brain tumors in particular, the line between a benign tumor and a malignant tumor is very fuzzy. Your child may have a slow growing, benign (non-cancerous) tumor that’s in a really bad part of the brain that doctors can’t get out, which can be very detrimental to your child’s health. Or your child may have a malignant (cancerous) tumor in an area of the brain that a surgeon can remove and responds well to chemotherapy or radiation. For this reason, we don’t only look at tumors as being cancerous or non-cancerous. The important factors we consider are the location and size of the tumor along with your child’s age. From there we can determine the most effective course of treatment.
What’s the whole course of treatment going to be like, and can you map that out for me?
Answer: We approach the treatment of brain tumors in a very specific, individualized manner. Two children may have the exact same diagnosis, but very different treatment regimens. The reason for this is there are a number of variables – not only among the different tumor types, but also from child to child – that help us determine the most effective treatment for your child. When a child is diagnosed with a brain tumor, we present their case to the Phoenix Children’s Neuro-oncology Tumor Board, a group of physicians from a variety of specialties including radiation oncology, Neuro-oncology, neurosurgery, neuroradiology, pathology, and neurology. Together, we decide the best treatment plan for each and every child. Once our team identifies the most appropriate course of action for your child, our team will discuss the treatment with you, help you understand the process, and tell you what you can expect as your child goes through treatment. Our experts in oncology, surgery, research, nursing, radiology, psychology, nutrition, rehabilitation, social work and more make sure our patients get the highest level of care all in one location.
How do we support our child nutritionally?
Answer: A balanced diet is an important part of your child’s treatment. But some of our treatments can cause side effects like dry mouth, nausea, vomiting, and mouth sores, which can impact your child’s appetite. Additionally, your child may experience difficulty swallowing, an increased sensitivity to certain smells, and a change in tastes. That’s why a key component of our dedicated team is a nutritionist who works with you and your child to develop a balanced diet that includes proteins, carbohydrates, fat, water, minerals, and vitamins. Our nutritionist works with you to make sure your child’s dietary needs are met and gives you creative solutions to nutritional problems that may arise during treatment.
What will we do after treatment? How long will we have to come and see you?
Answer: It depends on many issues. While many children return to acting much the same way they did before the diagnosis and receiving treatment, your child may face some difficulties with things like learning, growth, hormone deficiencies, and other health-related issues. That’s where our Comprehensive Neuro-oncology Clinic comes in. We’ll help your child and family navigate the life changes you’ve experienced and get the clinical support necessary to address health and other issues your child may be experiencing. We also have on staff school re-entry specialists who prepare children for a return to school and work collaboratively with teachers and classmates to welcome them back. Through our Comprehensive Neuro-oncology Clinic, we also closely monitor your child for several years for any signs of the tumor’s return and for ongoing medical, social, and emotional needs you may have.
What happens if the cancer comes back?
Answer: It’s completely normal to worry about a benign or malignant tumor returning, and the fact is, it sometimes will. A tumor’s return means the original treatment regimen – which might include any combination of surgery, chemotherapy, or radiation – was unsuccessful in killing all of the bad cells. If and when a tumor does return, there is hope – more hope than ever before – it can still be effectively treated. We’ll reassess your child’s condition and work with you and your family to plan another approach to treatment. This second course of treatment will be different from the therapies we implemented the first time to give your child the best opportunity for recovery.