Knowing what to expect will lay the foundation for months or years of tolerable tests. Because hospitals and practitioners have their own guidelines and preferences, the descriptions of procedures in the rest of this chapter may not exactly mirror your experience, but the fundamentals are the same everywhere. Reading the rest of this chapter may lessen your fears and help you to calm and prepare your child.

Questions to ask before procedures

You need information prior to procedures to prepare yourself and your child. Some suggested questions to ask the doctor include:

• Why is this procedure necessary and how will it affect my child’s treatment?
• What information will the procedure provide?
• Who will perform the procedure?
• Will it be an inpatient or outpatient procedure?
• Please explain the procedure in detail.
• Is there any literature available that describes it?
• Is there a child life specialist on staff who will help prepare my child for the procedure?
• If not, are there nurses, social workers, or parents who can talk to me about how to prepare my child?
• Is the procedure painful?
• How long will it take?
• What type of anesthetic or sedation is used?
• What are the risks, if any?
• What are the common and rare side effects?
• When will we get the results?

Accessing catheters

The procedure that occurs most often during treatment—and that can be the most or the least worrisome—is accessing your child’s central venous catheter. This procedure is described in detail in Chapter 9, Venous Catheters.

Angiogram

An angiogram is a special x-ray procedure to evaluate the circulation and blood supply in an area of tumor in either the brain or spinal cord. This procedure is performed in the radiology department and requires sedation or general anesthesia, depending on your child’s age and temperament. No food or liquids are allowed for a period of time prior to the procedure. A catheter is put in a blood vessel in the groin and then threaded up to the area that needs to be evaluated. Dye is injected and doctors can see the blood supply to the tumor. After the procedure, your child will go to the recovery room until she is awake and then will go back to her room.

Audiogram

Some of the chemotherapy drugs that children receive for treatment of brain or spinal cord tumors can cause hearing loss. Additionally, some children with these tumors experience hearing loss as a result of injury to nerves caused by the tumor itself, or from surgery or radiation. Your child’s doctor may order a hearing test, called an audiogram, to monitor for possible hearing problems.

During the audiogram, your child is tested in a soundproof room to prevent outside noises from interfering. You can remain with your child during this procedure. Earphones are placed on your child’s ears, through which sounds (such as beeps and tones) are relayed. Your child will be asked to signal when he hears a sound by either raising his hand or pressing a button. Each ear is tested separately. The results of the audiogram are usually displayed in the form of a graph, and the amount of hearing loss is measured in decibels.

Audiograms are repeated throughout therapy to monitor your child’s hearing if he is taking drugs that place him at risk.

Blood draws

Frequent blood samples are a part of life during treatment for a brain or spinal cord tumor. Blood specimens are primarily used for three purposes: to obtain a complete blood count (CBC), to evaluate blood chemistries, or to culture the blood to check for infection. A CBC measures the types and numbers of cells in the blood. Blood chemistries measure substances contained in the blood plasma to determine whether the liver and kidneys are functioning properly. Blood cultures help evaluate whether a child is developing a bacterial or fungal infection. (For a list of normal blood counts, see Appendix A, Blood Tests and What They Mean.)

A finger poke provides enough blood for a CBC, but blood chemistries or cultures require one or more vials of blood. Children with catheters usually have blood drawn from the catheter rather than the arm or finger. If the child does not have a catheter, blood is usually drawn from the large vein on the inside of the elbow. The procedures for a blood draw are similar to those for placing an IV, which are described later in this chapter. The only difference is that with a draw, the needle is removed as soon as the blood is obtained.

Bone growth test

A bone growth test is a plain x-ray of your child’s nondominant hand and wrist. It is performed to determine whether your child’s growth is appropriate for her age. Your child’s x-ray film will be compared with a series of photographs of wrist films of children of all ages so the radiologist can define your child’s “bone age” compared to her chronological age. The results help determine the need for endocrine testing. This test takes only a few moments to perform and is not painful.

Bone marrow aspiration or biopsy

Bone marrow aspirations or biopsies are done as part of the diagnostic workup for several types of brain and spinal cord tumors to see whether the tumor has spread to the bone. They are also done prior to stem cell transplantation.

During a bone marrow aspiration, bone marrow is extracted from bone cavities with a needle. Bone marrow biopsies remove a small piece of bone marrow with a special biopsy needle.

Doctors usually take a sample of the marrow from the iliac crest of the hip (the top of the hip bone in back or front). This bone is right under the skin and contains a large amount of marrow. The child lies face down on a table, sometimes on a pillow to elevate the hip. The doctor puts on sterile gloves, finds the site, then wipes it several times with an antiseptic to eliminate any germs. The nurse places sterile paper around the site, then an anesthetic (usually lidocaine) may be injected into the skin and a small area of bone. This causes a burning and stinging sensation that passes quickly. The doctor usually rubs the area to distribute the anesthetic around the site. When she is convinced that the insertion site is numb, the doctor pushes a hollow needle (with a plug inside) through the skin into the bone, withdraws the plug, and attaches a syringe. She then aspirates (sucks out) the liquid marrow through the syringe. Finally, she removes the needle and bandages the area.

Without sedation, bone marrow aspiration is very painful, so almost all centers anesthetize children for this procedure. Do not hesitate to advocate for this at your center. Here are some descriptions from children and adult survivors who have experienced it without sedation:

Brainstem auditory evoked response (BAER)

A brainstem auditory evoked response (BAER) test uses clicking sounds to evaluate the central auditory pathways of the brainstem. This test evaluates a child’s hearing when standard audiometric testing is not possible, either because of age or inability to respond. During the test, clicking noises or tone bursts are delivered through earphones. Your child’s brain waves are then measured by electrodes placed along the scalp and on each earlobe. The test is not painful and takes about 30 minutes to perform.

Computed tomography (CT)

Computed tomography (CT) is a complex, computer-enhanced procedure for obtaining x-ray images of the body. The machine looks very much like a big donut, and your child will be placed in the hole in the middle. Instead of having a fixed x-ray directed at one part of the body, during a CT scan an x-ray tube rotates around the body, generating hundreds of images as it moves. These images are called “slices,” similar to slices in a loaf of bread.

CT imaging allows the doctor to see central nervous system (CNS) structures in great detail. Development of the CT scan was a major step forward in the diagnosis, evaluation, and treatment of brain and spinal cord tumors. CT scans are used to look at the relationship between the tumor and bones. Although magnetic resonance imaging (MRI) is now the gold standard for evaluation of CNS tumors, CT is still a good screening tool.

Before the procedure begins, your child may need to receive a liquid dye, called a contrast agent. The contrast agent is given intravenously for CNS tumors. In the event that your child requires a CT scan of the abdomen or pelvis for another reason, oral contrast will also be given. The technologist will position your child so the area being imaged is inside the opening of the CT machine. The technologist does not stay in the room while the images are taken.

If you plan to remain with your child, you will need to wear a lead apron to protect your body from unnecessary exposure to radiation. Sometimes, if the site being imaged is the chest area, your child may be asked to breathe in and hold her breath for several seconds. It is important that your child remain still during the CT scanning process. Small children who are unable to remain motionless for several minutes at a time are sedated before the procedure. You are usually asked to stay in the department until the images have been reviewed by the technologist to ensure they are adequate and do not need to be repeated.

Conventional x-ray

X-rays, a type of electromagnetic radiation, provide the doctor with a quick and simple way to view organs and structures inside your child’s body. X-rays are performed for many reasons during a child’s treatment for a brain or spinal cord tumor. Some of the most common reasons for taking x-rays are because they are:

• Needed before operations
• Needed after your child’s central venous catheter is placed to confirm it is in the proper location
• Used to check cerebrospinal fluid shunt placement
• Used as part of a workup for fever to determine whether your child has pneumonia

For an x-ray, your child is positioned by the technologist in a manner that will make it easiest to get the images that are needed. For chest x-rays, your child may be asked to breathe in, hold her breath, and remain perfectly still for a few seconds. The technologist leaves the room during the time the x-rays are taken. As with CT scans, if you are planning to stay with your child, you need to wear a lead apron to protect you from radiation. Your child may also have to wear a lead apron or lead shield to protect specific areas of her body. Pregnant women should not be present in the room when x-rays are taken.

Echocardiograms and electrocardiograms

Spinal radiation and some drugs used to treat brain and spinal cord tumors can damage the heart, decreasing its ability to contract effectively. Many protocols require a baseline echocardiogram to measure the heart’s ability to pump before any chemotherapy drugs are given. Echocardiograms are then given periodically during and after treatment to check for heart muscle damage.

An echocardiogram uses ultrasound waves to measure the amount of blood that leaves the heart each time it contracts. This percentage (blood ejected during a contraction compared to blood in the heart when it is relaxed) is called the ejection fraction.

For this test, the child or adolescent lies on a table and a technician, nurse, or doctor applies conductive jelly to the chest. Then the technician puts a transducer (which emits the ultrasound waves) on the jelly and moves the device around on the chest to obtain different views of the heart. He applies pressure on the transducer to obtain clear images; this pressure can be uncomfortable. The test results are videotaped for the technician to see the results as he works and so the radiologist can interpret the findings later.

An electrocardiogram (EKG) measures the electrical impulses that the heart generates during the cardiac cycle. An EKG can be performed at an office, a lab, or your child’s bedside. Before placing the electrodes, the technician cleans the area with alcohol and applies a cool gel under the electrodes. Your child must lie quietly during the test. You can remain with him throughout the procedure, which generally takes less than 10 minutes. Your child will feel nothing during the procedure other than the gel on the electrodes.

Electroencephalogram (EEG)

The most widely used method for diagnosing any type of seizure disorder is the electroencephalogram, or EEG. During an EEG, measures of the electrical activity generated by the brain are taken. There is no health risk from an EEG, with the exception of several very specialized types of EEG (depth and subdural grid EEG), which are discussed below.

To prepare for an EEG, wash your child’s hair before the test and avoid conditioner, creams, hairspray, oils, gels, and elaborate hairstyles. Your child should avoid caffeinated drinks for a day before the test. Although the test is not painful, a mild sedative is sometimes used before the test is performed.

For the most common type of EEG test, usually called a scalp EEG, the neurologist or EEG technician will apply 21 electrodes to your child’s scalp with gooey, strong-smelling glue. Each disc is strategically placed to capture the brain wave activity from a different region of the brain, and each is attached to a wire called a lead. Because the heart’s electrical activity can skew EEG results, it is usually monitored by a separate electrode placed on the chest. The loose end of each lead is attached to the EEG machine itself, which amplifies the tiny amount of sensed activity, making graphing possible. The EEG machine will represent the electrical output of your child’s brain on a piece of paper, on a computer screen, or both. The basic type of EEG test lasts between 30 minutes to 2 hours. During the test, the neurologist or EEG technician may try some things that could provoke a seizure. For example, your child may be asked to look at a flashing light (photic stimulation) or breathe rapidly for several minutes (hyperventilation).

Sleep-deprived EEGs are administered after a period of sleep deprivation. Sleep deprivation lowers the seizure threshold dramatically, and deep sleep is a time when some kinds of seizures are more likely to occur. For this test, your child must stay up all or most of the night and then have the scalp EEG performed in the morning. Once the electrodes are hooked up and the neurologist has reviewed the initial brain activity, your child will be allowed to sleep. The dual challenge of sleep deprivation and deep sleep often evokes seizure activity.

Videotaped EEGs are when an EEG is performed while your child is simultaneously videotaped. By comparing your child’s visual symptoms with you or your child’s reported symptoms with the EEG data, subtle correlations can be made.

The depth EEG requires surgery to temporarily put electrodes into your child’s brain. Your child’s head will be placed in a frame that is pinned to your child’s skull. CT or MRI scanning will then help the doctor decide on positioning of the electrodes. The neurosurgeon will carefully drill through the skull and insert the electrodes into those parts of your child’s brain where seizure activity is suspected. Because there are no nerve endings inside the skull, this is not painful; however, some people experience discomfort despite the use of local anesthetic. A post-procedure headache is a common occurrence; your child will have a bandage on her head and her scalp may be sore for up to 4 weeks.

Subdural grid EEG involves placing a grid or strip of electrodes on the surface of the brain. The electrodes do not penetrate the surface of the brain. This type of EEG is most frequently used when seizures occur in areas affecting language or movement. The grid is usually kept in place for 2 or more weeks before being removed during a second operation. As with the depth EEG, your child’s head will be sore afterwards and will need time to heal thoroughly.

Electromyogram (EMG)

An electromyogram (EMG) measures the electrical activity of a specific skeletal muscle. The study is generally performed in an EMG laboratory. Your child’s position for the examination is determined by the specific muscle being evaluated. Local anesthetic or topical analgesic agents (such as EMLA® cream) are applied prior to the test. A fine, small needle that acts as a recording electrode is inserted into the muscle. In addition, a small skin electrode, such as that used in an electrocardiogram, is placed on the skin’s surface. Your child needs to lie still for a baseline reading and then contract the muscle repeatedly for several seconds. The neurologist and technician will then evaluate the monitor readings for evidence of abnormal or diminished function. Sedation is generally not used for this test, because your child’s participation is necessary. Your child may experience some discomfort from the needle insertion (similar to an intramuscular injection). You may stay with your child throughout the procedure.

Finger pokes

During the course of treatment, your child will probably have hundreds of finger pokes. Many children cooperate better with this procedure if the finger is first anesthetized with a topical numbing agent to reduce pain. The three topical anesthetics in wide use for pediatric procedures are as follows.

EMLA® cream is a combination of two topical anesthetics, lidocaine and prilocaine. It is available by prescription only. Parents must remember to apply the EMLA® cream at least 1 hour before the scheduled poke. Children with darker skin may need to leave it on longer to achieve the full effect.

To anesthetize the finger, put a blob of EMLA® on the tip of the middle finger, then cover it so the cream doesn’t get wiped off. Tegaderm® is a special bandage designed for this purpose, but you can also cover the fingertip with plastic wrap and then tape it on the finger. Another method is to buy long, thin balloons with a diameter a bit wider than the child’s finger. Cut off the open end, leaving only enough balloon to cover the finger up to the first knuckle. Fill the tip of the balloon with EMLA® and slide it on the fingertip. Before the finger poke, remove the plastic wrap or balloon, wipe off the EMLA®, and ask the technician for a warm pack. Wrapping this heated pack around the finger for a few minutes opens the capillaries and allows blood to flow out more readily. The finger then should be washed or wiped with disinfectant. Now your child is ready for a pain-free finger poke.

LMX4® is a 4-percent solution of lidocaine in a cream form. It works much like EMLA®, but it is available over the counter. It is important not to wash the child’s finger prior to applying LMX4®, because it works best when it mixes with the natural oils on the skin. LMX4® works faster than EMLA®, so in most cases it should not be applied until you arrive at the laboratory or treatment center.

The procedure for applying LMX4® is slightly different than it is for EMLA®. A small amount should be rubbed onto the finger first and left for about 30 seconds, then a thick blob should be applied on top. Cover the finger loosely with tape, a balloon, or Tegaderm®. Remove the wrapping after 30 minutes, clean the site, and proceed with the poke.

Ethyl chloride (“freezy spray”) is sprayed on the skin immediately before the procedure by the technician. This medication requires a prescription.

After the skin is numbed by one of the above methods, the technician will hold the finger and quickly stick it with a small, sharp instrument. Blood will be collected in narrow tubes or a small container. It is usually necessary for the technician to squeeze the fingertip to get enough blood. If you have not used a topical anesthetic, the squeezing part is uncomfortable and the finger can ache for quite a while.

Not all treatment centers recommend a topical anesthetic for finger pokes; you may have to advocate for it.

Gallium scan

Gallium scans are performed in the nuclear medicine department. Prior to the scan, your child will be injected with a radiopharmaceutical, called gallium citrate. Your child’s venous catheter may be used for the injection, or you may apply EMLA® cream to a peripheral vein site prior to the injection. Usually, the scan is performed 24 to 48 hours after the injection. Gallium localizes at sites of infection and malignancy. The procedure takes about 30 minutes. Your child needs to lie flat on an examination table while the machine scans above her. The machine makes noise but the procedure is not painful. You can stay with your child during this procedure.

Gastrostomy

A gastrostomy is the creation of an external opening in the abdominal wall through which a feeding tube is placed to provide nutrition directly into a child’s stomach. This is appropriate for children who cannot eat normally because of chronic swallowing problems or long-term pain in the mouth or throat, or for children who have lost their normal appetite for a prolonged period because of disease or treatment. The stomach end of the feeding tube has a small balloon that prevents it from being accidentally pulled all the way out.

A skilled gastroenterologist or surgeon can perform the procedure in about 10 minutes. Most children have general anesthesia for the procedure and remain in the hospital for 1 to 2 days postoperatively to receive pain medication and make sure they tolerate feedings through the tube. Care of the tube is simple, and after 2 to 3 months the tube may be replaced with an unobtrusive skin-level device called a button. After a short recovery, children may play, bathe, and swim normally.

The tube is used for liquid feedings and medications for as long as the child needs it. If a child no longer requires the tube, it is removed and a bandage is placed over the site. The wound closes spontaneously in a day or two.

Magnetic resonance imaging (MRI)

MRI uses a magnetic field to create two-dimensional images of a cross section of the brain or spinal cord. Your child may need to receive a liquid dye, called a contrast agent, prior to or during the scan. The dye can be administered through your child’s central venous catheter or via a peripheral IV. For the MRI, your child lies on a platform that slides into a long tube. Inside the tube is a donut-shaped magnet. A special device, called a surface coil, is then placed around the area of the body that is to be imaged.

The technologist does not stay in the room during the MRI. The MRI machine makes a loud knocking noise as the images are taken. Your child may need to wear special ear-plugs to help block out this sound. Young children, or any child with a fear of closed-in spaces (claustrophobia), may need to be sedated for the MRI procedure. MRI takes longer to perform than CT scans and requires that your child lie perfectly still to prevent motion artifact in the scan pictures. Although some centers now have open MRI scanners, they are not currently available in the majority of hospitals. Some doctors feel that magnet technology in the open MRI scanners used by some facilities is not yet up to par with older closed machines, which may affect the degree of detail. MRI is considered the best way to image brain and spinal cord tumors.

A medical oncologist offers this advice regarding MRI interpretations:

Needle aspiration biopsy

Needle aspiration biopsies are sometimes used to obtain a sample of cells from a mass in an accessible area. Prior to the biopsy, children need to fast for several hours. The doctor will first use ultrasound or CT images to determine the exact location of the mass. Once your child has been anesthetized, a needle is guided into the mass and a sample is removed. The sample is then sent to a pathologist, who will view the cells under a microscope. Your child will need to stay in bed for the next several hours with vital signs closely monitored to ensure there is no bleeding.

Neuropsychological testing

Neuropsychological testing encompasses a broad category of oral, written, and performance tests that help define and describe your child’s level of functioning. If your child’s condition allows, it is best to perform such tests prior to surgery, but sometimes this is impossible. Postoperative and post-therapy testing performed every few years is important for documenting cognitive function and assisting with planning educational and rehabilitative interventions for your child. For more information about neuropsychological testing, see Chapter 18, School.

Positron emission tomography (PET) scan

Positron emission tomography (PET) is a type of imaging scan used to identify biochemical changes in the body’s tissues. MRI and CT scans provide information about structure and anatomy, but PET scans provide additional information about metabolism, which helps more clearly identify location and extent of tumor and, after treatment, whether masses showing up on CT or MRI are scar tissue, dead tissue, or new growth of disease.

The PET scan involves injection of a radioactive drug (tracer) prior to scanning. The most common drug used is fluorine 18, also known as FDG-18, which is a radioactive version of glucose. The amount of radiation is very small, about the same as a conventional x-ray. After the injection, your child will wait for an hour or so until the tracer has spread throughout the body, and then the scan is done. No anesthesia is used and the entire procedure takes about 2 hours.

Usually, parents are told to not let their child consume any caffeine (e.g., soda, tea, chocolate) for 24 hours before the PET scan. Other than water, your child should not have any food or fluids for 4 hours before the scan. Your child should be told that the scan will not hurt and that he will have to remain very still while in the scanning machine.

Pulmonary function tests

Some of the chemotherapy drugs children receive can damage the lungs. Your child’s doctor may order a pulmonary function test to evaluate her respiratory status. The basic pulmonary function test is called a spirogram. Your child will blow into the machine to measure the amount of air she can inhale and exhale. The respiratory technician who administers the test will coach and instruct your child throughout the procedure to ensure she is giving her maximum effort. The test is administered at least three times to ensure the results are reliable. You can stay with your child while this test is done.

Your child cannot take this test if she is agitated, in pain, or too young to cooperate with the procedure. Your child should not take any bronchodilators or use an inhaler for 6 hours prior to the procedure. Also, be sure to have a list of medications your child is currently taking with you, because this is necessary for proper test interpretation.

Spinal tap (lumbar puncture or LP)

Due to the blood-brain barrier, systemic chemotherapy sometimes cannot destroy tumor cells in the brain and spinal cord. Chemotherapy drugs may have to be directly injected into the cerebrospinal fluid (CSF) to kill any tumor cells; this is called intrathecal administration. For certain diseases (e.g., medulloblastoma, ependymoma), spinal taps are used to monitor response to treatment. Spinal taps can be diagnostic (done to obtain a specimen of fluid for analysis) and/or therapeutic (done to inject chemotherapy).

Most hospitals sedate children for spinal taps. If a child is not sedated, EMLA® cream is usually prescribed to lessen the pain. Even with sedation, EMLA® may be applied to minimize the sting of the topical anesthetic. To perform a spinal tap, the doctor or nurse practitioner first asks the child to lie on his side with his head tucked close to the chest and knees drawn up. A nurse usually helps hold the child in this position. The doctor, wearing sterile gloves, finds the designated spot in the lower back and swabs it with antiseptic several times. The antiseptic feels very cold on the skin. The nurse then drapes the area with a sterile sheet. The doctor will administer one or two shots of an anesthetic (usually xylocaine) into the skin and deeper tissues. This causes a painful stinging or burning sensation that lasts about a minute. Even if EMLA® was used, the doctor may still inject anesthetic into the deep tissues. It is necessary to wait a few moments to ensure the area is fully anesthetized.

The child must hold very still for the rest of the procedure. The doctor will push a needle between two vertebrae and into the space where CSF is found. The CSF will begin to drip out of the hollow needle into a container. After collecting a small amount of CSF, the doctor attaches a syringe to the needle and slowly injects the medicine. This causes a sensation of coldness or pressure down the legs. The doctor removes the needle, bandages the spot, and sends the CSF to the laboratory to see whether any cancer cells are present and to measure glucose and protein levels.

It is important to lie extremely flat for at least 30 minutes after an LP to reduce pressure changes in the CSF. Sitting or standing up too soon can cause severe headaches. If your child develops a persistent severe headache following the procedure that lessens while he lies flat, but throbs when he sits up, notify the doctor or nurse. The nurse will likely have your child lie flat and will offer a high-caffeine beverage (such as Mountain Dew®) to drink. If these measures fail to relieve the headache, an anesthesiologist sometimes does a procedure called a “blood patch,” during which your child lies in the same position as for the spinal tap. The anesthesiologist will draw a small amount of blood from your child’s arm or central line. She will then inject the blood at the site of the prior spinal tap where CSF may be slowly leaking from the canal into the tissues. If this is the cause of the headache, the relief is immediate. This procedure is generally performed in the recovery room, emergency room, clinic, or inpatient unit. You can stay with your child during the procedure.

Starting an intravenous (IV) drip

Most pediatric hospitals have teams of technicians who specialize in starting IVs and drawing blood. The IV technician will generally use a vein in the lower arm or hand. First, a constricting band is put above the site to make the veins larger and easier to see and feel. The technician feels for the vein, cleans the area, and inserts the needle. Sometimes she leaves the needle in place and sometimes she withdraws it, leaving only a thin plastic tube in the vein. The technician will make sure the needle (or tube) is in the proper place, then will cover the site with a clear dressing and secure it with tape.

The following methods can help when starting an IV:

• Stay calm. The body reacts to fear by constricting the blood vessels near the skin’s surface. Small children are usually more calm with a parent present, but teenagers may desire privacy. Listening to music, visualizing a tranquil scene (such as mountains covered with snow, floating in a pool), or using the same technician each time can help.
• Use a topical anesthetic. Use EMLA® cream, LMX4®, or ethyl chloride, as described earlier in the chapter. However, topical anesthetics are not recommended when giving medications (for example, vincristine) that can burn the skin if leakage occurs.
• Keep warm. Cold temperatures cause the surface blood vessels to constrict. Wrapping the child in a blanket and putting a hot water bottle or heating pad on his arm can enlarge the veins.
• Drink lots of fluids. Dehydration decreases fluid in the veins, making them harder to find, so encourage lots of drinking.
• Let gravity help. If your child is lying in bed, she can hang her arm down over the side to increase the size of the vessels in her arm and hand.
• Let your child have control, as appropriate. If your child has a preference, let him pick the arm to be stuck. If he is a veteran of many IVs, let him point out the best vein. Good technicians know that patients are quite aware of their best bet for a good vein.
• Stop if problems develop. The art of treating children requires spending lots of time on preparation and not much time on procedures. If a conflict arises, take a time-out and regroup. Children can be remarkably cooperative if they feel you are respecting their needs and if they are given some control over the situation.

Traditionally, infants and young children have been restrained on their backs to insert IVs. This technique minimizes the risk of misplacing the IV, but it can cause significant fear and distress. Many treatment centers now allow parents to hold children upright in their laps to minimize stress.

Subcutaneous and intramuscular injections

Some medications are given by injection, either under the skin (subcutaneous, or Sub-Q, injection) or into a large muscle (intramuscular, or IM, injection). One drug commonly administered subcutaneously is Neupogen® (G-CSF), a medication that is often used to boost white blood cell counts.

To minimize pain caused by injections, apply EMLA^® cream 1 to 2 hours before administration. Parents can also reduce pain by rubbing ice over the site to numb the area prior to injection. Other ideas are available online at http://webpages.charter.net/drshrink/gcsftips.htm.

Swallowing tests

Swallowing tests are necessary if your child is unable to swallow or does not have an adequate gag reflex. Swallowing tests are performed in the radiology department; your child cannot eat or drink anything prior to the procedure, but will be given a barium-containing “meal” during the test. X-rays are taken and examined to evaluate swallowing. Swallowing tests help determine whether your child can begin to eat and drink more normally following surgery or whether a gastrostomy tube, nasogastric tube, or IV nutrition will be needed for a period of time. You can stay with your child during the swallowing tests.

Taking oral medications (pills and liquids)

As the parent of a child with a brain or spinal cord tumor, one of your most important jobs is to administer each dose of all oral medications to your child on time—every day. Research has proven that children who do not comply completely with the dosing regimen have a lower survival rate than those who do. Your child will need thousands of pills or liquid doses throughout treatment. To accomplish this feat, it is essential to get off to a good start and establish cooperation with your child early in the process.

Gel caps come in many sizes. Number 4s are small enough for a 3- or 4-year-old child to swallow. Many pills can be chewed or swallowed whole without leaving a bad taste in the mouth. Steroid medications (e.g., prednisone, dexamethasone) should not be chewed, because they have a bitter aftertaste and may cause your child to develop an aversion to all oral medications. Just remember that different children develop different taste preferences and aversions to medications, and gel caps are useful for any medication that bothers them.

For younger children, many parents crush the pills into a small amount of pudding, applesauce, jam, frozen juice concentrate, or another favorite food. However, your child may develop a lifelong aversion to these foods after treatment is over. Before mixing with any food, check with the doctor because some foods can negate the effects of medications.

Teens and medication

Teenagers usually have completely different issues around taking pills than young children. Most problems with teens revolve around autonomy, control, and feelings of invulnerability. It is normal for teenagers to be noncompliant, and they cannot be forced to take pills if they choose not to cooperate. Trying to coerce teens fuels conflict and frustrates everyone. If you need help, ask for an assessment by the psychosocial team at the hospital to work out a plan for treatment adherence. Everyone will need to be flexible to reach a favorable outcome.

Taking a temperature

Fever is the enemy during treatment because it signals infection, and children on chemotherapy cannot fight infection effectively, especially when their white counts are depressed. Parents take hundreds of temperatures, especially when their child is not feeling well. Temperatures can be taken under the tongue, under the arm, swiping across the forehead, or in the ear using a special type of thermometer. Rectal temperatures are not recommended due to the risk of tears and infection. Here are a few suggestions that might help.

• Use a glass thermometer under the tongue.
• Use a digital thermometer under the tongue or arm. Some have an alarm that beeps when it is time to remove the thermometer.

• Tympanic (ear) thermometers measure infrared waves and are very easy to use.

Before you leave the hospital, you should know when to call the clinic because of fever. Usually, parents are told not to give any medication for fever and to call if the fever goes above 101° F (38.5° C). It is particularly important for parents of children with implanted catheters to know when to call the clinic, as an untreated infection can be life-threatening. It is also really helpful to have a copy of your child’s most recent blood counts when you call to notify the doctor about fever issues.

Transfusions (blood)

Cancer treatment can cause severe anemia (a low number of oxygen-carrying red cells). The normal life of a red cell is 3 to 4 months, and as old cells die the diseased or chemo-stressed marrow cannot replace them. Many children require transfusions of red blood cells when first admitted and periodically throughout treatment.

One bag (called a “unit”) of red cells takes 2 to 4 hours to administer and is given through an IV or catheter. Mild allergic reactions are common. If your child is prone to allergies or experiences an allergic reaction, it may be necessary to premedicate her with an antihistamine such as Benadryl^®. Acute allergic reactions are rare, but they do happen. If your child develops chills and/or fever or any difficulty breathing during a transfusion, notify the nurse immediately so the transfusion can be stopped.

There are some risks of infection from red cell transfusions. Because tests have been devised and used to detect the HIV virus in donated blood, the risk of exposure to HIV is minuscule. Although there are excellent tests for the various types of hepatitis, exposure to this disease is still possible (the risk is less than 1 in 4,000). Exposure to cytomegalovirus is also a concern. These risks are the reason transfusions are given only when absolutely necessary.

During transfusions, sometimes the nurse will strap the child’s arm to a board for the duration of the procedure. This method of restraint prevents the child from accidentally bending his arm, which can be very painful and can reposition the needle, but the board can be cumbersome.

Transfusions (platelets)

Platelets are an important component of blood. They help form clots and stop bleeding by repairing breaks in the walls of blood vessels. A normal platelet count for a healthy child is 160,000 to 380,000/mm³. Chemotherapy can severely depress the platelet count. If a child’s counts are very low, it may be necessary to transfuse platelets so uncontrollable bleeding does not occur. Many centers require a transfusion when a child’s platelet count goes below 10,000 to 20,000/mm³, and sometimes repeat transfusions are required every 2 or 3 days until the marrow recovers. Platelet transfusions usually take less than an hour.

As with other blood products, an allergic reaction is possible and platelets are capable of transmitting infections such as hepatitis, cytomegalovirus, and HIV. Even though the chance of contracting these viruses is extremely low, platelets are transfused only when necessary.

Tumor markers

A tumor marker test examines a sample of blood (obtained from a vein or from a catheter) or CSF (obtained during a spinal tap) for certain substances that help identify specific types of tumors. Tumor markers used to diagnose some germ cell tumors are alpha-fetoprotein (AFP) and beta-human chorionic gonadotropin (β-hCG). To diagnose pituitary tumors, tests may be run to check for the level of alpha subunit pituitary tumor marker.

Urine collections

Certain chemotherapy drugs can cause damage to the kidneys, so sometimes timed urine collections are done to evaluate your child’s kidney function. Also, by measuring certain substances in the kidneys, doctors can tell how well the chemo drugs are working. If your child is toilet trained, the collection is done by saving all the urine your child produces in a defined period of hours.

Urine specimens

Chemotherapy requires frequent urine specimens. One way to help obtain a sample is to encourage your child to drink lots of liquids the hour before. If your child has an IV, you can also ask the nurse to increase the drip rate. Explain to the child why the test is necessary. Ask the nurse to show how the dip sticks work. (They change color, so they are quite popular with preschoolers.) Use a “hat” under the toilet seat. This is a shallow plastic bucket that fits under the seat and catches the urine.

As all parents learn, eating and elimination are functions that the child controls. If she just can’t or won’t urinate in the hat, go out, buy her the largest drink you can find, and wait.

It may be necessary to obtain a sterile specimen, or “clean catch,” if infection is suspected. You or your child will need to cleanse the perineal area with soap or an antiseptic towelette, and she will need to urinate into a small sterile container.

If your child is not yet toilet trained, if a clean catch is impossible, or if your child is unable to urinate, it may be necessary to insert a Foley catheter. This procedure can be quite stressful because it involves placing a sterile rubber tube up the urethra and into the bladder. It is definitely appropriate to ask that your child be given a mild sedative or muscle relaxant before the procedure if he is anxious, and to request that the most skilled person available perform the procedure. In skilled nursing hands, the procedure takes less than 5 minutes to perform.

Visual acuity testing

Visual acuity testing is important if your child’s tumor involves the optic nerve pathways or an area of the brain, such as the occipital lobes, that controls vision. Children with these types of tumors are routinely followed by a neuro-ophthalmologist or, in some cases, a pediatric ophthalmologist, because vision loss can be a symptom and indicator of tumor growth. When done by an expert, such testing is accurate and fun for your child. Most ophthalmologists who specialize in the care of children employ technology that presents visual stimuli to your child in the form of toys and mechanical games. They usually understand that patience helps produce valid test results. Baseline testing is important prior to surgery and at specified periods throughout treatment.

Wada test

The Wada test (intracarotid sodium amobarbitol test) is sometimes used to help locate speech and memory centers within the brains of children with low-grade tumors. Sodium amobarbitol is injected into the carotid artery in the neck in such a way that half of the brain is temporarily put to sleep. This allows your child’s doctor to perform tests of speech, memory, and other functions while your child can use only one side of her brain. Sometimes an EEG is performed during this procedure. The Wada test is particularly crucial before surgery to ensure that the speech and memory centers are well defined and protected from injury.

Since that time, with my suggestions, he has devised (often-changing) routines; for accessing the port, he is sitting semi-upright, clutching his left ear with his left hand and holding a parent with his right. For receiving daily GCSF shots, the special Band-Aid® that looks like a tattoo needs to be open on the table; the appropriate site (left or right thigh) agreed upon, pinched, and alcohol-swabbed; a sibling holding one hand and he pinching an ear with the other; on the count of three the QUICK injection, followed as nearly instantaneously as possible by the Band-Aid®. Simple, really, when you know how. No fear and no tears. Audiometry, psychological/ academic testing, and vision checks are just games which he enjoys. Now if we can only get by the hurdle of the eye-drops which sting like the devil.