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. Consider asking your doctor these questions:
• 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?
• Would you 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 possible side effects?
• When will we get the results?
The procedure that occurs most often during treatment is accessing your child’s central venous catheter. This procedure is described in detail in Chapter 13, Venous Catheters.
My daughter had a terrible time having her port accessed. She would scream and cry (probably terrifying the other kids waiting outside the room for their turn!) and I became an expert at holding her down. I’d lie down next to her, holding down her hands, pressing my knee on her legs to keep her from kicking, and with my head on her forehead. It was horrible. I don’t think it was particularly painful, just a terrible invasion for her, and she knew she’d feel badly after her treatment. We ended up meeting with the neuropsychologist on staff at the hem-onc office. The doctor was wonderful and warm, she talked to my daughter about why having her port accessed bothered her so much, and we talked about ways that she might cope. The doc made some good suggestions: listening to music, looking at a book, dreaming herself somewhere else. The neuropsychologist then accompanied her into the procedure room. My daughter was calm and completely still through the whole procedure, and never made a fuss again about having her port accessed. I’m very grateful.
Some of the chemotherapy drugs that children receive for treatment of solid tumors can cause hearing loss. In addition, 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 check for possible hearing problems.
They tested my 5-month-old daughter’s hearing after the first two rounds of chemo and it was normal. After the third round, she had fluid in her ears so she couldn’t be tested. So, they are going to test it again after her surgery when she is in the PICU [pediatric intensive care unit]. They said they can do a more thorough test when she is under anesthesia.
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.
Matthew experienced some high-frequency hearing loss from the cisplatin he received as part of his treatment for neuroblastoma. He had periodic audiograms performed at various stages of his treatment protocol. They were never a big deal for him, and in fact, he found them to be fun in many ways. The audiologist had a knack for making him feel comfortable. I think to Matthew, stepping into the soundproof booth and putting on his headset was somewhat like a game. The first few audiograms were done with me sitting in the booth beside him. Eventually, he reached a point where he felt he could do this test on his own, and so I would sit with the audiologist, watching him through the window. I think I might have messed the test up a few times with all those funny faces I was making at him. Fortunately for us, the audiologist had a sense of humor!
A different type of hearing test, called a brainstem auditory evoked response, is described later in this chapter.
Frequent blood samples are a part of life during treatment for a solid tumor. Blood samples 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 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 blood draw, the needle is removed as soon as the blood is obtained.
Bone growth test
A bone growth test is an x-ray of your child’s nondominant hand and wrist; for example, if your child is right-handed, the left hand and wrist will be x-rayed. 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
Bone marrow aspirations or biopsies are done as part of the diagnostic workup for several types of solid 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 bones with a needle. Bone marrow biopsies remove a small piece of bone marrow with a special biopsy needle. Without sedation, bone marrow aspirations are very painful, so almost all hospitals anesthetize children for this procedure. Do not hesitate to advocate for this at your treatment center.
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, and then wipes it several times with an antiseptic to eliminate any germs. The nurse places sterile paper around the site, then an anesthetic (usually xylocaine) may be injected into the skin and a small area of bone. The doctor then 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.
Melissa (age 5) has had several bone marrow aspirations since her diagnosis. We always use propofol (which I refer to as the “milk of human kindness,” because of its milky appearance) before the procedure. After the aspiration is over, Melissa wakes up from a very deep sleep and has felt no pain whatsoever. She’s usually hungry and ready to go ASAP. Propofol has worked exceptionally well for her.
A bone scan is a test performed in the nuclear medicine department to assess the status of a particular bone or the entire skeletal system. It is often used when the oncologist suspects there is cancer present in the bones—either in the form of a primary bone sarcoma or metastatic disease.
Your child will be given an injection of a radioactive material, called technetium, which will travel through the blood to the bones. Approximately 2 hours later, the scan will be performed. You should be allowed to stay with your child during this procedure.
Brainstem auditory evoked response (BAER)
Mikey (age 4) had numerous full body bone scans that would pinpoint hot spots after injection of radioactive isotopes. He also had MRIs of his legs, as well as CT scans and x-rays, but the bone scans were the scary ones for me. I suppose it was because it would outline his whole skeleton, and I could see those glowing areas.
A brainstem auditory evoked response (BAER) test uses clicking sounds to evaluate a child’s hearing when a standard audiogram is not possible, either because of a child’s 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 on the scalp and each earlobe. The test is not painful and takes about 30 minutes.
Computerized tomography (CT) scan
BAER was very easy, quick, and painless. They attached leads to my daughter’s head, very gently, and they didn’t get tangled up in her hair or anything. Then they put earphones on, and the doctor told her she would hear a series of clicks in one ear, and a whooshing sound in the other, and to just sit still. So she did, and the little lines came out on the computer screen. The doctor duly recorded all the highest humps in the lines, and switched ears. Then they did the TV part, which I think is called VAER. She stared at a small American flag in the center of a TV screen. The rest of the screen is small black and white squares, and they move around as the child stares at the flag in the center. I would say the test took about 5 minutes of sitting and staring.
Computerized tomography (CT) is a complex, computer-enhanced procedure for obtaining x-ray images of the body. The machine looks 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, the donut-shaped x-ray tube rotates around the body during the CT scan, generating hundreds of images as it moves. These images are called slices.
Rachel, unfortunately, is very familiar with CT scans. From the beginning we’ve looked for ways to get her to lie still. The way we accomplished this was by me standing next to her and holding her hand. The parent must wear a shield in order to do this. The CT scanner at our hospital does not make that much noise, but they had a music player and I would always bring her favorite music and set it up right next to her during the whole thing. Also, they would let her have her blankie and baby with her. They were very accommodating.
Before the procedure begins, your child may need to receive a liquid dye, called a contrast agent, which is given intravenously. If your child requires a CT scan of the abdomen, 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 will not stay in the room while the images are taken.
When we first went in and Luke was going to get a CT scan, I was told he could just drink the contrast in a bottle. Um, that’s great, but, he didn’t take a bottle…ever. So, their solution was to insert an NG [nasogastric] tube and squirt the stuff directly into his tummy. I felt horrible. I felt like he was being punished because I breastfed him. The next time he had to have a CT, I worried about them having to pin him down and sticking the NG tube in him. I told the nurse that I really, really didn’t want that to happen and asked if there was any other way we could get the contrast in. She asked if he’d drink from a cup (nope, not yet) but I told her that he did take medicine from a syringe and I asked if I could use a syringe to squirt the contrast in him. That’s what I did. It took me half an hour of filling and squirting nonstop but I was less stressed and Luke, while not too thrilled, took it anyway and it was okay.
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.
My son handled CT scans like a little trooper. Even at the age of 3, he never needed sedation to help him remain perfectly still. He had so many of them, he was able to lip-sync along with the recording that was asking him to “breathe in and hold your breath.” The only part he strongly disliked was having to drink the contrast material before the scan. We experimented with this until we found something that was palatable for him. We mixed the contrast with orange juice, which made it much easier for him to drink.
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 solid 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 determine whether your feverish child has pneumonia.
For chest x-rays, your child may be asked to breathe in, hold his breath, and remain perfectly still for a few seconds. The technologist leaves the room during the time the x-rays are taken. 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 his body. Pregnant women should not be in the room when x-rays are taken.
Several drugs used to fight cancer can damage the muscle of 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. The percentage of blood ejected during a contraction compared to blood in the heart when it is relaxed is called the ejection fraction.
The echocardiogram is performed by a technician, nurse, or doctor. The child or teen lies on a table and has conductive jelly applied 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. Pressure is applied on the transducer and can sometimes cause discomfort. The test results are displayed on a videotape and photographed for later interpretation.
Meagan used to watch a video during the echocardiogram. Sometimes she would eat a sucker or a popsicle. She found it to be boring, not painful.
Finger pokes are different from blood draws because they only require a quick puncture of the skin to obtain a few drops of blood. The technician will hold the finger and quickly prick 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 a Buzzy® or EMLA® is not used, the squeezing part is uncomfortable and the finger may ache for a while.
One way to minimize the discomfort of a finger poke is to put a blob of EMLA® on the tip of the middle finger, cover the fingertip with plastic cling wrap, and then use tape or a bandage to hold it in place. Another method is to buy long, thin balloons with a diameter a bit wider than your 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. EMLA® needs to be applied an hour before a finger poke to be effective. When it is time for the poke, remove the plastic wrap or balloon, wipe off the EMLA®, and ask for a warm pack. Wrapping this heated pack around the finger for a few minutes opens the capillaries to allow the blood to flow out more readily. Now your child is ready for a pain-free finger poke.
Even though we use EMLA®, Katy (5 years old) still becomes angry when she has to have a finger poke. I asked her why it was upsetting if there was no pain, and she replied, “It doesn’t hurt my body anymore, but it still hurts my feelings.”
Some children are more anxious about the anticipation of a poke than the actual poke itself, so the use of EMLA® may cause them to worry. As you try various methods, you and your child will learn what works best. Children who choose their own routines for pain control may feel more comfortable and secure.
Gallium scans are performed in the nuclear medicine department and help doctors identify sites of tumors and infections. Prior to the scan, your child will be injected with a radiopharmaceutical, called gallium citrate, though the venous catheter or a IV. Usually, the scan is performed 24 to 48 hours after the injection. 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.
A gastrostomy is the creation of an external opening in the abdominal wall through which a feeding tube (usually called a G-tube) is placed in the 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 appetite for a prolonged period because of disease or treatment. The stomach end of the feeding tube has a small balloon on it that prevents it from being accidentally pulled 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 after the operation to receive pain medication and make sure they can tolerate tube feedings. 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 G-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.
Intravenous pyelogram (IVP)
My daughter was diagnosed with hepatoblastoma when she was 3 months old. During her second round of chemo, I told them that the sound of her crying had changed, and she was coughing a lot while nursing. It turns out her vocal cords were paralyzed from the vincristine. She was in a lot of pain and needed to be on a continuous drip for that. I couldn’t nurse her anymore so they put a G-tube in because they were afraid she might aspirate and get pneumonia. We had the same surgeon who had put in her Hickman® and did the biopsy. She needed a way to get nutrition, but it was very hard not to be able to nurse her.
Your child’s doctor may order an IVP if he feels there is an abnormality involving the urinary tract. Your child may need to fast before the procedure. Prior to the IVP, your child will have a contrast material injected into the bloodstream through an IV or venous catheter. X-rays are taken as the contrast material is collected and excreted by the kidneys. The process usually takes about an hour and you can stay with your child while the IVP is being performed. Children with an allergy to iodine should not have this test.
Magnetic resonance imaging (MRI)
MRI uses a magnetic field to create two-dimensional images of a cross section of an area of the body. 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 placed around the area of the body that is to be imaged.
During the first year of getting scans, Cassandra (age 5) would have to be anesthetized to have the MRI done, since it scared her to be in that tube for so long. It was difficult for her to come out of the anesthesia and she would be crabby for the rest of the day. One day she decided, at my prodding, that she would try to do it without being asleep if I would stay with her and hold her hand. She has done it this way ever since. She listens to music and usually falls asleep, while I am stretched out, holding her hand inside the tube for up to an hour. To celebrate having the scans finished, Cassandra and I go shopping for something special afterwards—for a while it was different-colored Converse high tops. On those evenings, my husband, the girls, and I go out for a special dinner to celebrate the cancer still being gone!
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 earplugs 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. Although some centers now have open MRI scanners, they are not currently available in the majority of hospitals.
I-metaiodobenzylguanidine (mIBG) scan
We don’t run around trying to get copies of scans after the fact (the ones made then aren’t as clear anyway and cost money). We ask the technician for a second set of MRI scans to be made the same day it’s taken. That way we always have sets to pull out for consults and other doctor visits. We’ve also learned that it appears to help with interpreting MRIs to use the same MRI machine, and we also try to get the same technician.
Children who have neuroblastoma may require a special nuclear medicine scan called I-metaiodobenzylguanidine (mIBG) that can identify tumor cells in the bone or soft tissues. This procedure uses a radioactive substance—either iodine 123 metaiodobenzylguanidine or iodine 131 metaiodobenzylguanidine—that is injected in a vein 24, 48, or 72 hours prior to having the scan. The injected substance accumulates in neuroblastoma tumor cells, which then appear on the scan as a “hot spot.” Prior to the injection, and for 3 to 5 days after, your child will need to take an oral medication, called potassium iodide (also known by the brand name SSKI®), to protect the thyroid gland.
The scan takes place in a machine that is similar to a CT scanner. During the scan, the technician will place your child on a scanning bed, and two special cameras, one above and one below the bed, take images from head to foot. You should be permitted to stay with your child during this procedure. A mIBG scan usually takes much longer than other imaging techniques, and the child must remain very still during the procedure. Some young children will need to be sedated while the test is being done.
One of the scans that Matthew disliked most of all was the mIBG scan. Not because there was anything painful involved, but because he found it to be so incredibly boring. He knew if we were making a visit to nuclear medicine for that particular test, it meant spending the next few hours lying motionless on the scanning bed. Fortunately, Matthew developed a very good relationship with the technicians who performed the procedure. They were wonderful to him, and he came to love them all very much. It certainly made things a lot easier for both of us. He never once needed to be sedated for his many mIBG scans—very impressive for a child diagnosed at the age of 3 with neuroblastoma. I think this was because of his attitude and because of how he was treated by the technicians.
Parents often notice obvious hot spots during the mIBG scan. It is important to bear in mind that mIBG is excreted in the urine, and rare false positive results can appear in the groin area (for example, urine-soaked diapers or underwear). False positive results are also possible if the radioactive substance leaks around the central line or IV used for injection of the material.
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 pediatric surgeon 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 through the skin and into the mass; then 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.
Eric (age 16) had a fine-needle biopsy of some lesions appearing on his brain. His oncologist thought that his osteosarcoma had metastasized. I was with him as he was sedated in the CT room, standing right beside him, holding his hand when he fell asleep. The biopsy was guided by the CT pictures and a metal frame that had been “screwed” into his skull. Because of the sedation, Eric didn’t feel any pain.
Using a thin, flexible tube called an endoscope, doctors can perform a needle aspiration biopsy in parts of the gastrointestinal (GI) tract. While your child is sedated, a gastroenterologist guides the endoscope through the mouth and into the stomach and duodenum. The tip of the endoscope contains a miniature ultrasound probe that creates visual images of the GI system. During the endoscopic ultrasound, a biopsy can be done of any tumor tissue seen via a needle that comes out of the end of the endoscope.
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. This information 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 test
Some of the chemotherapy drugs children receive can damage the lungs. Your child’s doctor may order a pulmonary function test to evaluate your child’s 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)
Our son didn’t like having pulmonary function tests. On the outside, it looks so simple. But blowing into the spirogram was hard for him. He was usually a little tired after the test was complete. We would always make a trip to the hospital gift shop afterwards, because we felt he deserved a special treat for working so hard.
Due to the blood-brain barrier, systemic chemotherapy sometimes cannot destroy cancer cells present in the central nervous system (brain and spinal cord). Chemotherapy drugs may have to be directly injected into the cerebrospinal fluid (CSF) to kill any cancer cells present. For certain diseases, spinal taps are used to monitor a child’s response to treatment.
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, swabs it with antiseptic several times, and administers one or two shots of an anesthetic (usually xylocaine) into the skin and deeper tissues. It is necessary to wait a few moments to ensure the area is fully anesthetized.
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 removes the needle, bandages the spot, and sends the CSF to the laboratory to see whether any cancer cells are present.
It is important to lie extremely flat for at least 30 minutes after a spinal tap 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 him a high-caffeine beverage (such as Mountain Dew®) to drink. If the headache persists, 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 into the tissues. If this is the cause of the headache, the relief is immediate. You can stay with your child during the procedure.
Starting an intravenous (IV) drip
Most children with cancer have a permanent venous catheter implanted in their chest within a week of diagnosis to avoid the pain of multiple IV sticks (see Chapter 13, Venous Catheters). However, there may be instances when your child will need an IV line started, as well.
Most children’s 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.
Here are a few ways to make this procedure a bit easier:
• 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 prefer privacy. Listening to music, visualizing a tranquil scene (such as floating in a pool or watching snow fall in the mountains), or using the same technician each time can help.
• Use a topical anesthetic or a Buzzy®. Using a topical anesthetic (e.g., EMLA®) or a Buzzy® (described earlier in the chapter) can be very helpful when starting an IV.
• Keep warm. Cold temperatures cause the surface blood vessels to constrict. Wrapping the child in a blanket and putting a warm pack 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.
• 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.
• 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.
You’ll think I’m crazy, but I’ll tell you this story anyway. After getting stuck constantly for a year, my daughter (5 years old) lost it one day when she needed an IV. She started screaming and crying, just flew into a rage. I told the tech, “Let’s let her calm down. Why don’t you stick me for a change?” She was a sport and started a line in my arm. I told my daughter that I had forgotten how much it hurt and I could understand why she was upset. I told her to let us know when she was ready. She just walked over and held out her arm.
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. Child life specialists can teach parents ways to hold a young child to help him feel secure while undergoing procedures.
Some children require medications given by subcutaneous (under the skin) injection during their treatment. For example, Neupogen® (filgrastim) is a granulocyte colony-stimulating factor (G-CSF) that is often used to boost the white blood cell count. It is usually given by subcutaneous injection. If you are required to give shots at home, make sure a nurse has trained you to do it and ask her to write down any tips she may have for making the shot as easy for your child as possible.
We found that giving 4-year-old Joseph as much power in the process as possible really helped. The shots themselves are non-negotiable, but there are many parts of the process where the child can have some control (where to put the EMLA® cream, where to be sitting for the cream and/or the shot, who holds him, what toy to hold during the procedure, etc.). We also made sure to have a consistent little treat available afterwards, although this became unnecessary after a while. Even at 4, Joseph loved money, so for a long time he kept a pint jar, which would travel to the hospital and back home again, and he’d get to drop in a nickel for each pill successfully swallowed (a huge chore for him) and a quarter for each shot. Of course, adults would look very surprised when we told them we gave Joseph “quarter shots.” Something tells me the bar scene will be very confusing to him when gets to college.
To minimize pain caused by subcutaneous injections, apply EMLA® cream 1 to 2 hours before the shot, and then cover it with a Tegaderm® patch or plastic cling wrap. Parents can also reduce pain by numbing the site prior to the injection by using a Buzzy® device for 30 to 60 seconds or by rubbing ice over the skin.
Taking oral medications
We always used EMLA® cream before our son needed a subcutaneous injection. I think part of the benefit to him was pharmacological, and part of it was psychological. He just seemed to be more at ease with the injections when he knew the EMLA® was applied a few hours before the needle was given.
As the parent of a child with a cancer, one of your most important jobs is to administer each dose of all oral medications to your child on time—every day. To accomplish this, it is essential to get off to a good start and establish cooperation early in the process. Pill swallowing is an essential skill for children and teens to master, and having a cancer diagnosis means they will need to learn how to do it in a short span of time. Many pills can be chewed or swallowed whole without leaving a bad taste in the mouth, but some medications should not be chewed because they have a bitter aftertaste and may cause your child to develop an aversion to all oral medications.
To teach Brent (6 years old) to swallow pills, when we were eating corn for dinner I encouraged him to swallow one kernel whole. Luckily, it went right down and he got over his fear of pills.
Children and teens can learn how to swallow pills by practicing with candy. One method, developed by the Child Study Center at New York University Langone Medical Center, starts with a child swallowing a tiny candy such as Nerds®. When the child is able to easily do this five times, he practices swallowing a slightly larger candy. The size of the candies is gradually increased (e.g., mini M&Ms®, Tic Tacs®, and then full-sized M&Ms®). This method allows your child or teen to practice swallowing in a relaxed setting at home with as much repetition as needed. With lots of encouragement from parents, the stress is minimal. If this method does not work for your child, a more gradual way to learn to swallow pills is described online at http://research4kids.ucalgary. ca/pill-study and listed in Appendix C, Books, Websites, and Support Groups.
I wanted Katy (3 years old) to feel like we were a team right from the first night. So I made a big deal out of tasting each of her medications and pronouncing it good. Thank goodness I tasted the prednisone first. It was nauseating—bitter, metallic, with a lingering aftertaste. I asked the nurse for some small gel caps, and packed them with the pills which I had broken in half. I gave Katy her choice of drinks to take her pills with and taught her to swallow gel caps with a large sip of liquid. Since I gave her more than 3,000 pills and 1,100 teaspoons of liquid medication during treatment, I’m very glad we got off to such a good start.
Empty gel caps come in many sizes, and you can purchase them at a pharmacy or ask a nurse for them if your child is in the hospital. Many parents put pills inside gel caps to mask the taste and make them more slippery and easier to swallow. Number 4s are small enough for a 3- or 4-year-old child to swallow. Children develop different taste preferences and aversions to medications, and gel caps are useful for any medication that bothers them.
After much trial and error with medications, Meagan’s method became chewing up pills with chocolate chips. She’s kept this up for the long haul.
I always give choices such as, “Do you want the white pill or the six yellow pills first?” It gives him a little control in his chaotic world.
For younger children who are not able to swallow pills, 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 pills with food, check with the doctor or pharmacist, because some foods can negate the effects of medications.
Jeremy was 4 when he was diagnosed, and we used to crush up the pills and mix them with ice cream. This worked well for us.
Our son was 2 ½ years old when diagnosed. We put the med in an oral syringe and put very hot water in a tiny glass. Then we would draw a wee bit of the hot water into the oral syringe and then we would cap it. Then you gently shake the syringe and turn it back and forth while the med completely dissolves. Then we would take off the cap and fill it the rest of the way with nice cold Kool-Aid®. Alexander would get to choose the flavor of Kool-Aid® each day and we would just mix up a couple different batches of flavors and keep them in the fridge. He felt like he was in control because he chose the flavor, and it covered up the lousy taste of the medication. We asked our oncologist about this at the very beginning, and he said it was a great way to do it because neither the water nor the Kool-Aid® had any unwanted effects on the medication. Anyway, we never once had any problem with this method.
The method we used for getting my son to take his foul-tasting chemo/meds was the mixing agent Syrpalta®. This is a grape-flavored syrup available from the pharmacy. It doesn’t react with most meds and the flavor can hide almost anything.
We used quite a bit of the stuff. First, we crushed his pills with a pill crusher/cutter, then we mixed them in a cup before putting them in a syringe to squirt in his mouth. (Keep in mind he was only about 15 months old when he got sick.) We had to make sure he got every drop though, since some of the pills were really small and a little bit of syrup could hide a significant portion of the dose.
You should make sure that any med you do this with is safe to crush or mix with Syrpalta® (or chocolate, or anything else for that matter). Meds with time-release or slow-release agents should never be crushed.
Pharmacists can flavor oral medications with a product called FlavorX®, allowing your child to choose from a variety of flavors such as banana, strawberry, mango, watermelon, and chocolate. The pharmacist can advise you about which flavors will work best to cover up the taste of each medication. You can find a local pharmacy that offers FlavorX® by visiting the website www.flavorx.com.
Teens and medication
Whenever my son had to take a liquid medicine, such as antibiotics, he enjoyed taking it from a syringe. I would draw up the proper amount, then he would put it in his mouth and push the plunger.
Teenagers usually have completely different issues around taking pills than do 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 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
I think the main problem with teens is making sure that they take the meds. Joel (15 years old) has been very responsible about taking his nightly pills. I’ve tried to make it easy for him by having an index card for the week, and he marks off the med as he takes it. I also put a list of the meds on a dry erase board on the fridge as a reminder. As he takes the med, he erases it. That way it’s easy for him (and me) to see at a glance if he’s taken his stuff. The index card alone wasn’t working because sometimes he couldn’t find a pen or forgot to mark it off.
Fever is the enemy during treatment because it signals infection, and children on chemotherapy cannot fight infection effectively if their white blood cell 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, on 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 an infrared thermometer on the forehead.
• Use a digital thermometer under the tongue or arm. Some have an alarm that beeps when it is time to remove the thermometer.
We bought a digital thermometer that we only use under his arm. It has worked well for us because he likes the beep.
• Tympanic (ear) thermometers are very easy to use.
When my in-laws asked at diagnosis if there was anything that we needed, I asked them to try to buy a tympanic thermometer. The device cost over 100 dollars then, but it worked beautifully. It takes only 1 second to obtain a temperature. I can even use it when she is asleep without waking her. They are now sold at pharmacies and drug stores, and cost much less.
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 helpful to have a copy of your child’s most recent blood cell counts when you call to notify the doctor about fever.
Cancer treatment can cause severe anemia (a low number of oxygen-carrying red blood cells). This is because the normal lifespan of a red blood cell is 3 to 4 months, and as old cells die, the chemo-stressed marrow cannot replace them. Many children require transfusions of red blood cells when they are first admitted to the hospital and periodically throughout treatment.
Whenever my son needed a transfusion, I brought along bags of coloring books, food, and toys. The number of video players at the clinic was limited, so I tried to make arrangements for one ahead of time. When anemic (hematocrit below 20%), he didn’t have much energy, but by the end of the transfusion, his cheeks were rosy and he had tremendous vitality. It was hard to keep him still. After one unit (bag) of red cells, his hematocrit usually jumped up to around 30.
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® (diphenhydramine). 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 blood cell transfusions. Excellent tests are used to detect the most serious viruses in donated blood. The risk of exposure to the HIV virus from a blood transfusion is now less than 1 in 2 million. The risk of acquiring hepatitis B is 1 in 800,000, and hepatitis C is 1 in 1.6 million. Exposure to cytomegalovirus is also a small possibility. These very small risks are the reason transfusions are given only when absolutely necessary.
My daughter received several transfusions at the clinic in Children’s Hospital with no problems. After we traveled back to our home, she needed her first transfusion at the local hospital. Our pediatrician said to expect to be in the hospital at least 8 hours. I asked why it would take so long when it only took 4 hours at Children’s. He said he had worked out a formula and determined that she needed two units of packed cells. I mentioned that she only was given one unit each time at Children’s. He called the oncologist, who said it was better to give only one unit. We went to the hospital, where a unit of red cells was given. Then a nurse came in with another unit. I questioned why he was doing that and he said, “Doctor’s orders.” I asked him to verify that order, as we had already discussed it with the doctor. He went into another room to call the doctor, and came back and said the pediatrician thought my daughter needed 30 cc more packed cells. I called Children’s and they said she didn’t need more, so I refused to let them administer any more blood. It just wasn’t worth the risk of hepatitis to get 30 cc of blood. Even though I was pleasant, the nurses were angry at me for questioning the pediatrician.
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 450,000/mm3. Chemotherapy can severely depress the platelet count. If a child’s platelet count is 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.
Three-year-old Matthew had countless platelet transfusions, and only once did he have a reaction. It was an awful thing to watch, but the nurse who was monitoring him was very calm and professional, which helped both of us. Matthew was always premedicated for his platelet transfusions with Benadryl®, which made him very drowsy. Most often he would sleep through the entire transfusion.
Ultrasound provides the doctor with a quick and radiation-free tool for imaging internal organs. The ultrasound involves placing a small device called a transducer against the skin in the area that needs to be examined. The transducer sends inaudible sound waves into the body, which bounce off the internal organ and return to the transducer. The ultrasound machine uses these sound waves to form an image of the organ.
Before the procedure begins, your child may have to remove some items of clothing or jewelry that could interfere with the ultrasound. Sometimes your child will be asked to wear a hospital gown. The technologist will position your child on the examination table, and a clear gel will be applied to the area to be imaged. The technologist will move the transducer over the surface of the skin while the child remains still and relaxed. After the images have been taken, you may need to wait until they are reviewed before you can leave the department.
Children taking chemotherapy often need to provide 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.) You can use a shallow plastic bucket (called a hat) under the toilet seat to catch urine.
Turn on the water while the child sits on the toilet. I don’t know why it works, but it does.
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 of urine, 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.
Six-year-old Ethan’s introduction to procedures started the day he was diagnosed. The MRI that afternoon was no problem for him because he was nearly comatose. Getting through that scan was difficult only for my peace of mind. His next scan was a day later; he lay still, occasionally giggling, because he was watching Men in Black through special MRI-safe video goggles. Scans became a not-so-hard routine. Reminded to lie still, he often fell asleep through the jackhammer-like din of the MRI magnet.
Getting to Ethan’s blood was, at first, a bit more challenging. After his port was placed, we at first had to hold Ethan down while accessing it. We were told it shouldn’t hurt after being anesthetized with EMLA®, but the sight of the needle was scary. The breakthrough came when a child life specialist (what a great addition to pediatrics!) distracted him and he found that it really did not hurt.
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 G-CSF 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. Now if we can only get by the hurdle of the eye-drops which sting like the devil.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups