Gene Therapy Program | FAQs

What are the guidelines before visiting the Jimmy Fund Clinic?

Always check your child before visiting the clinic for:

• Fever - call immediately if your child has a temperature of 3 F (38.5C) or higher.
• If your child has a temperature between 4 F (38 C) and 101.2 F (38.4C) - recheck the temperature in one hour.
• In one hour, if your child’s temperature is greater than or equal to 4 F (38 C), call immediately.
• If your child’s temperature is greater than 4 F (38 C) after that one hour or again within 24 hours, call immediately.
• Shaking or chills, or ill-appearing.
• Do not give any fever reducing medicine (i.e. acetaminophen or ibuprofen) until you have spoken to your healthcare provider.

Should I call the clinic in an emergency?

Call 911 immediately if your child has:

• trouble breathing
• blue or gray skin color
• unresponsiveness
• excessive bleeding
• other life threatening symptoms

Call the Jimmy Fund Clinic at 617-632-3270 immediately if:

• your child has any medical issues
• you think your child may need to be seen that day

Where should I call after normal business hours?

Call the Dana-Farber page operator at 617-632-3352. Ask to have the pediatric oncology fellow paged; the doctor on-call will call back within 20 minutes. If you don’t hear back within 20 minutes, call the page operator and have the on-call doctor paged again.

For less-urgent medical questions

Prescription refills

• Call the clinic at 617-632-3270 at least 48 hours before your child will need a medication refill.
• Leave a voicemail message with the patient’s name, date of birth, name of the medication, and the pharmacy phone number. The information will be sent to your healthcare provider.

Home health or VNA services

Call the clinic at 617-632-3270 if you have a question about a blood draw or medications your child is receiving at home via home health care (“VNA”). The triage nurse will either answer your question directly, or will follow up right away with your healthcare team and call you back.

Tests and studies

General information about tests and appointments can be located on the MyChildren’s Patient Portal. For questions about scheduled radiology tests or other studies to be done at Boston Children’s Hospital:

• call the Jimmy Fund Clinic at 617-632-3270
• ask the front desk for information regarding your scheduled study, such as the date and time

If you have other questions about your test or study, or if your test/study has not yet been scheduled, your call will be sent to the triage nurse, who will help answer your question.

Health care and supply company services

Call the Jimmy Fund Clinic Case Manager at 617-632-3258 if you have a question about home health care companies, supply companies, infusion companies, or health insurance issues.

Division of Psychosocial Oncology and Palliative Care

Call the Division of Pediatric Psychosocial services at 617-632-5425 if you have a question about psychosocial services or need support.

Frequently-used phone numbers

Dana-Farber Cancer Institute

Boston Children’s Hospital

What are the most common tests and procedures?

Your health care team will always explain the procedure to you and answer any questions you may have prior to any test. Parents are able to comfort their child during some tests. Some procedures may require sedation, general anesthesia or an operation. 

Audiogram

A test that measures hearing at different volumes of sound. This test may be given before and after certain treatments.

Biopsy

A collected sample of tissue which is later examined for abnormal cells. There are three types of biopsies used to collect tissue samples:

• Needle Biopsy: A method used to diagnose whether abnormal cells are present by inserting a needle through the skin. Your child may feel pressure or discomfort when the needle is inserted. We usually use sedation or general anesthesia to help relax your child and use a local anesthetic to numb the needle insertion site.

• Minimally Invasive Surgery: A method of collecting a sample of the tissue through a small incision. It usually requires sedation or general anesthesia to make your child more comfortable.

• Surgical Biopsy: A method of collecting tissue performed in the operating room. General anesthesia will be used during the procedure. 

• Bone Marrow Aspiration and Biopsy: A method to collect a sample of bone marrow, the liquid in the center of bones that produces white blood cells, red blood cells, and platelets. Bone marrow is usually taken from your child’s hip bone. The sample is then examined for abnormalities or to monitor your child’s response to treatment. This procedure is usually performed in the clinic, treatment room of the hospital, or the operating room. Your child will receive sedation or general anesthesia. For an aspiration, a needle is placed in the hip and a syringe is used to withdraw a sample of the bone marrow. If a biopsy is done, a small sliver of bone is taken from the same insertion site.

Bone scan

A bone scan is a nuclear medicine imaging test to look at the bones for disease, fractures or infection. Your child will receive a small amount of radioactive dye through an intravenous (IV) line before the scan. Several hours later, you will return for the image. Your child will lie on the table below a large camera that will move slowly around your child’s body. Your child may be asked to move into different positions but will have to remain still during the image for the best picture.

Computerized axial tomography (CAT Scan or CT Scan)

A CAT or CT scan is a radiology test that uses a type of x-ray equipment and computers to take pictures of the body. The detailed images from a CT scan helps healthcare providers diagnose and treat your child. Your child will have to lie still on a moveable table. In many cases, children will have to swallow and/or receive a contrast by IV to help the health care provider better see certain body areas.

24-hour urine test

A test to measure how well the kidneys are working by collecting all of your child’s urine in a container. You will need to save all of your child’s urine for exactly 24 hours. The lab can calculate your child’s creatinine clearance using the collected urine to measure your child’s kidney function.

Echocardiogram (ECHO)

An ECHO is a test that uses sound waves (ultrasound) to make pictures of your child’s heart and its chambers, veins and arteries (blood vessels).

Electrocardiogram (EKG or ECG)

An EKG or ECG is a test that can measure electrical activity of the heart. It will record the heart rhythm and the rate of the heartbeat.

Gallium scan

Your child will receive a radioactive isotope injected by IV that is only absorbed by certain tissue types. After about 72 hours, pictures will show where these cells are present within the body. There is no risk to your child from the radioactive isotope. Often, more pictures are needed 2-4 days later.

Glomerular filtration rate (GFR)

A GFR is a nuclear medicine test which measures kidney function; it is done before and after some chemotherapy treatments.

Lumbar puncture (LP)

An LP, also called a spinal tap, is a procedure that collects a sample of cerebrospinal fluid (CSF), which surrounds the brain and spinal cord to determine the presence of cancer cells or progress of treatment.  

Magnetic resonance imaging (MRI)

An MRI is a diagnostic imaging test that uses a magnet and radio waves to take pictures of organs and tissues inside the body.

MIBG study

An MIBG Study uses images and a tiny amount of radioactive liquid to help find certain types of cells, particularly those that are found in neuroblastoma and pheochromocytoma, in the body. After about 24 hours, pictures will be taken to identify where activity is occurring within the body. During the imaging, your child lies still on a table with cameras above and below. The camera comes close to your child but doesn’t touch your child. Your child will need to remain still during the study.

Positron emission tomography (PET scan)

A PET scan is an imaging test that produces three-dimensional images of the body. This test provides information about how the body functions.

Pulmonary function tests (PFTs)

PFTs evaluate how well the lungs work by measuring how much air the lungs can hold and how well your child can blow the air out.

Ultrasound

An ultrasound is a test that uses high frequency sound waves to provide images of the inside your child’s body.

X-rays

An X-ray takes a picture of your child’s bones and organs using small doses of radiation. It can be used for many reasons.

Complete blood counts

A complete blood count (CBC) is a laboratory test that shows the type and number of cells in the blood and are checked frequently during treatment. When blood counts are at a normal level, your child’s body can effectively fight infection, maintain normal energy, and prevent bleeding.