Layla Grace Children's Cancer Research Foundation

There might be times where you’ll have questions for your child’s doctor but won’t remember them when you have the opportunity to speak with her. Start a journal and write them down as you think of them. This way, when you do have time with your doctor, you’ll have them ready to go. Here’s a list of question to get you started.

About treatment

• What is a clinical trial and is it right for my child

• Which types of chemo will my child be given?

• How is chemo given?

• What is the difference between a central line and a portacath? What is the best option for my child?

• When and where is chemo given (inpatient or outpatient)

• What are the side effects of chemo?

• Will this chemo cause infertility?

• What causes hair loss?

• What is a Complete Blood Count (CBC) and why is it done?

• How can I tell when my child needs a blood transfusion?

• What are the side effects of a blood transfusion?

• How long does a blood transfusion take?

• How often will my child’s kidney and heart function be monitored?

• How often will by child’s hearing be tested?

• What is neutropenia?

• How can I tell when my child is neutropenic?

• When my child is neutropenic, what can’t they do?

About home care

• How will treatment affect my child’s daily activities?

• What foods should I give my child? Which foods should I avoid giving them?

• My child won’t eat, what do I do?

• How much fluid should my child have daily to stay well hydrated?

• What meds can my child take to help with nausea and vomiting?

• Will my child have weight changes? If so, what are they?

• What should I do if my child has a fever?

• What are the signs of infection?

• How are infections treated?

• Can my child be exposed to sunlight? If so, for what length of time?

• What lotions/products are okay to use on my child during treatment?

• Will my child be able to go to school?

About Surgery

• Am I allowed to be with my child before surgery? If so, for how long?

• Am I allowed to be with my child while anesthesia is being administered?

• What kind of anesthesia will my child be given?

• How long will the surgery take?

• How long will it take my child to wake up after surgery?

• How soon after surgery can I see my child?

• How soon after surgery can my child eat or drink?

About Stem Cell Transplant

• What tests are done pre and post-transplant?

• What is your center’s success rate for my child’s type of cancer?

• How many pediatric bone marrow transplants have been done at your facility?

• How many doctors are part of the transplant team?

• Is my child ever left solely in the hands of a resident?

• Will my child be assigned the same set of nurses while inpatient for transplant?

• Do you have a pediatric intensive care unit on site?

• Do you have a specific pediatric BMT unit? (Many combine adults and pediatrics in one unit)

• Is this an autologous or allogenic transplant?

• What chemo will be given pre transplant?

• Are specialists available if complications arise?

• What prophylactic medications are used? (Anti-fungal and anti-viral drugs)

• What are the most common complications post transplant?

• What treatment is used for mucositis?

• What are the neutropenic diet restrictions?

• What is the average engraftment time?

• What are the chances of engraftment failure?

• Is there any additional chemo post transplant?

• At what point post transplant do you transition patients from IV meds to oral meds? (Most medication is absorbed better through IV post-transplant. Also, your child will likely have a fragile digestive system, so using oral meds can be a huge mistake. Push for IV meds as long as possible. )