Knowing what to expect will help lay the foundation for months or years of tolerable procedures. 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. The procedures are listed in alphabetical order.

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 needed 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 psychologists 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?

Accessing implanted catheters

The procedure that occurs most often during treatment is accessing your child’s implanted central venous catheter. This procedure is described in detail in Chapter 12, Central 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.

Blood draws

Frequent blood samples are a part of life during treatment for leukemia. Three common laboratory tests performed on blood are a complete blood count (CBC), blood chemistries, and blood cultures. A CBC measures the types and numbers of cells in the blood. Blood chemistries measure substances in the blood plasma to determine whether organs (e.g., liver, kidneys) are functioning properly. Blood cultures help evaluate whether a child is developing a bacterial or fungal infection. For a list of normal blood cell 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.

Bone growth test

A bone growth test is an x-ray of your child’s non-dominant 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 whether endocrine testing is needed. This test takes only a few moments to perform and is not painful.

My daughter wasn’t growing much while she was taking Gleevec® from age 7 to 13. We went for an endocrine consult and they ordered a bone growth test. The test showed she was a couple of years behind in closure of the growth plates, which was great news because it meant she had more time to grow. When she was switched to Sprycel®, she started to grow again.

Bone marrow aspiration

Protocols for children with leukemia require bone marrow aspirations, a process by which bone marrow is removed with a large-bore needle. The purpose of the first, or diagnostic, bone marrow aspiration is to see what percentage of the cells in the marrow are abnormal blasts. Then these cells are analyzed to determine which type of leukemia is present. For children or teens with acute lymphoblastic leukemia, the next bone marrow aspiration usually is done on day 29 of treatment to see how many blasts are still present. This information, along with other test results such as the amount of minimal residual disease (MRD), is used by oncologists to decide how intensive treatment should be.

Our son never got sick, didn’t lose his hair, and gained weight during the nine months of treatment for APL. He was able to keep going to preschool because his counts never dropped. He does have PTSD from the many bone marrow aspirations he’s had. He gets very upset on the way to the sedation room and wakes up vomiting and very emotional. He is pretty much wiped out for the whole day. So, now they premedicate him with Ativan® and they changed from ketamine to other sedatives, and things have improved.

Doctors usually take a sample of the marrow from the iliac crest of the hip (the top of the hip bone). 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.

Without sedation, bone marrow aspiration is very painful, so most doctors anesthetize children for this procedure. Do not hesitate to advocate for this at your hospital. Here are some descriptions from children and teens who have experienced it:

It was the worst thing of all. It felt really, really bad.

• • • • •

It hurts a lot. It feels like they are pulling something out and then it aches. It feels like they are trying to suck thick Jell-O® from inside the bone. Brief but incredible pain.

Echocardiogram

Some drugs used to fight cancer can damage heart muscle, 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. The technician might apply some pressure on the transducer, which could cause very mild 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 lollipop or a Popsicle®. She found it to be boring, not painful.

Finger pokes

Finger pokes are different from blood draws because only a quick puncture of the skin is needed 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. Most often the technician needs to squeeze the fingertip to get enough blood. If a Buzzy® or numbing cream is not used, the squeezing part is uncomfortable and the finger may ache for a while.

One way to lessen 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’s 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 using EMLA® may cause them to worry more. 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.

Gastrostomy

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. A G-tube is used for children who can’t 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 long time 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.

My daughter was diagnosed when she was three 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. She needed a way to get nutrition, but it was very hard not to be able to nurse her.

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 one to two days after the operation to receive pain medication and make sure they can tolerate tube feedings. After two to three 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 in a day or two.

Spinal tap (lumbar puncture or LP)

The body has a structure, called the blood–brain barrier, to protect the brain from toxins that may be circulating in the blood. Due to this barrier, systemic chemotherapy usually cannot destroy any blasts in the central nervous system (brain and spinal cord). Chemotherapy drugs must be directly injected into the cerebrospinal fluid (CSF) to kill any blasts present and prevent a possible central nervous system relapse; this is called intrathecal administration. The drugs most commonly used are methotrexate, ARA-C (cytarabine), and hydrocortisone. The number of spinal taps required and when they are done varies, depending on the child’s risk level, the clinical study, and whether radiation is used (most often there are fewer spinal taps if cranial radiation is used).

Most hospitals sedate children for spinal taps. To perform a spinal tap, the doctor or nurse practitioner positions the child 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 injects 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.

In the beginning of treatment, they used Versed® when doing spinal taps on my 11-year-old daughter who has Down syndrome. She hated it and would growl at her beloved doctor and scream to “Stop it!” So, we started doing spinal taps in the OR under general anesthesia, and it was much better.

The doctor will push a spinal 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.

Some facilities will suggest your child lie flat for at least 30 minutes after a spinal tap to reduce pressure changes in the CSF. 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) line

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 12, Central Venous Catheters). However, there may be instances when your child will also need an IV line started.

Children’s hospitals either use nurses or technicians with specialized training to start IVs and draw 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. She will then withdraw the needle, leaving only a thin plastic tube in the vein. The technician will make sure the 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.
• 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 amount of blood in 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.

• • • • •

I request a portable ultrasound each time for Lillia, as her veins are very deep and hard to get to. It used to take 30 minutes of poking, multiple collapsed veins, and techs finally giving up or Lillia saying “no more.” With the ultrasound, the whole thing takes just a few moments and they never miss getting the best vein. It is heaven sent!

Traditionally, infants and young children have been restrained on their backs to insert IVs. This technique lessens the risk of misplacing the IV, but it can cause a lot of fear and distress. Many treatment centers now allow parents to hold children upright in their laps to reduce stress. Child life specialists can teach parents ways to hold a young child to help him feel secure while undergoing procedures.

Subcutaneous injections

Some children require medications given by subcutaneous (under the skin) injection during their treatment. For example, growth hormone is given by subcutaneous injection. If you will be giving shots at home, make sure a nurse has trained you to do it and ask her to write down any tips she has 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 numbing cream one to two hours before the shot, and then cover it with a Tegaderm® patch or plastic cling wrap held in place with paper tape. Parents can also numb the site prior to the injection by using a Buzzy® device for 30 to 60 seconds or by rubbing ice over the skin.

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 an hour before the needle was given.

Taking oral medications

As the parent of a child with a leukemia, one of your most important jobs is to give each dose of all oral medications to your child on time, every day. To do this, it is essential to get off to a good start and establish cooperation early in the process. Children with leukemia need to be able to swallow pills, and they will need to learn how to do it in a short span of time. Some pills must be swallowed whole, but others can be chewed without affecting efficacy. However, some 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.

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.

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 those that bother 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 aren’t able to swallow pills, many parents crush the pills into a small amount of pudding, applesauce, jam, ice cream, 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 some 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 2½ 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.

Most children on maintenance take SMZ-TMP (sulfamethoxazole and trimethoprim), Bactrim®, or Septra® two to three times a week to prevent a specific type of pneumonia that can develop in children with suppressed immune systems. These drugs come in either liquid or pill form and are produced by a variety of manufacturers. Ask your pharmacist for a kid taste test. Letting your child choose a medicine that appeals to him encourages compliance.

Because children associate taking medicine with being sick, it is helpful to explain why they must continue taking pills for years after they feel well. Some parents say, “We need these pills to gobble up the last few bad cells” or “The medicine keeps your blood strong.” Others explain that the leukemia can return, and the medicine prevents it from growing again.

We had a lot of issues with dexamethasone. Our pharmacy provided a liquid version, but one of our nurses warned us that this form tasted worse than the crushed tablets of dex. My 2-year-old son fought hard. I tried everything—hiding dex in a melted Starburst®, applesauce, ice cream, chocolate syrup. I read that chocolate is supposed to mask bitterness better than anything else. But ultimately, I found that I had to keep the volume of medication as tiny as possible to get my son to swallow it. So I never mixed it so that it was more than 3 mls. Then I found the thinnest syringe I could get my hands on. I would slide the syringe down the side of his mouth (avoiding his tongue) and he could get all the liquid down in one quick swallow. I also used bribery at first (I think stickers), but eventually it became no big deal. So the concoction that worked best for us was super concentrated tropical punch Kool-Aid® mixed with extra powdered sugar! I crushed the dex, added just 2 cc’s of this disgustingly sweet liquid, and then let it dissolve in the syringe. It was gross, but it worked for us.

Taking a temperature

Fever is the enemy during treatment because it can signal 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 tips that might help:

• Use a digital thermometer under the tongue or arm: Some have an alarm that beeps when it’s time to remove the thermometer (usually only one minute).

We bought a digital thermometer that we only use under his arm. It has worked well for us because he likes the beep.

• Use a tympanic (ear) thermometer: Be sure you read the directions so you use it properly. This thermometer gives a read out in only a few seconds.

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 one 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.

• Use a pacifier thermometer for infants and toddlers: The thermometer is in the nipple of the pacifier and the toddler’s mouth must be closed on the nipple for three minutes to get an accurate reading.

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 their child’s temperature goes above 101° F (38.5° C) or below 96.8° F (36° 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.

Teens and medication

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.

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.

• • • • •

One of the biggest concerns with teens and maintenance is noncompliance. I think it’s a delicate balancing act to allow the teen to be responsible for taking his own meds and yet have some supervision of the process. Our meds are kept in a small plastic basket on the kitchen counter. All meds are taken there. I’d never want him to keep his meds in his room where I would have no idea if he had taken them or not. On Friday nights when he is to take his weekly methotrexate—a 16-pill dose—I will count it out and put it in a medicine cup on the counter. I am not always an awake and alert person when he comes home at midnight on Friday night. When I get up Saturday morning, I know immediately if he’s taken his meds. If he had shown any resistance to taking the meds, or any sign of telling me that he had taken them when he had not, I’d be doing this differently. But he’s aware of the importance of each dose and the importance of his participation in the team beating the leukemia. My only other advice is to be sure and ask the doctors what to do about a missed dose for each med. In 3-plus years of treatment, you are going to have a missed dose, and it helps to know how to handle it.

Transfusions (blood)

Leukemia treatment can cause severe anemia, which is a low number of oxygen-carrying red blood cells (RBCs). This is because the normal lifespan of a RBC is three to four months, and as old cells die, the chemo-stressed marrow cannot replace them. Many children require transfusions of RBCs 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 RBCs takes two to four 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, you may need to premedicate her with an antihistamine such as Benadryl® (diphenhydramine) before transfusions. 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.

RBC transfusions carry some risks of infection. 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 eight hours. I asked why it would take so long when it only took four 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 nurse was angry at me for questioning the pediatrician.

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 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 doesn’t occur. Many centers require a transfusion when a child’s platelet count goes below 10,000 to 20,000/mm³, and sometimes more transfusions are required every two or three days until the marrow recovers. Most platelet transfusions 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.

Urine specimens

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. Explain to the child why the test is needed. 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 the sound of running water 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 wipe, 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 urinary catheter. This procedure can be quite stressful, because it involves placing a sterile, flexible 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 five minutes to perform.

X-rays

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. 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 yourself 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.

Meagan is scheduled to go off therapy this May. She’s doing well and is very happy. A father at our support group was advising a new set of parents to remember to view life from the child’s perspective. He said that, especially with the little ones, parents sometimes agonized more than the child. He told us that at the end of the first year of treatment, he and his wife were reflecting on how much misery their child had endured, and then she piped up and said, “This has been a great year for me!” Meagan is the same. When I have bad days and get preoccupied with the uncertain future, I see Meagan skipping along and saying as she frequently does, “I’m such a happy girl!”