A protocol is a written plan for treating a disease. Just like a recipe for baking a cake,
it has a list of ingredients, the amounts to use, and the order to use them so the recipe
has the best chance for success. The protocol document lists the drugs, dosages, and
tests for each segment of treatment and follow-up. It usually also contains a diagram
(called a roadmap) that shows when each drug and test is given. If your child is
enrolled in a clinical trial, the protocol will outline the treatment for each arm.
The clinical trial that my child was enrolled in had three arms—A, B,
and C. He was in the A portion, so we only referred to the A section of the
protocol, which clearly outlined each procedure and drug to be given for
the duration of the trial. It also listed the follow-up care required by that
particular clinical trial.
If the family chooses not to enroll in a clinical trial, they will be given a protocol for
standard treatment (often the standard arm of the clinical trial).
The portion of the protocol devoted to the schedule may be five to twenty-five pages
long. The family may also be given an abbreviated version (one to two pages) to pro-
vide quick and easy reference on a daily basis. This part of the protocol is frequently
called the “roadmap.” Parents and teenage patients should review these documents
carefully with the oncologist so that all portions are understood. It will be the parent’s
responsibility to make the appropriate appointments and give oral medications at the
correct times.
Many parents express anguish when their child’s protocol changes during treatment.
An important point to remember is that the protocol is a guideline that is frequently
modified, depending on each child’s response to treatment.
I didn’t know what a protocol was when Preston was diagnosed, and I
understood from the doctors that this was the “exact” regime which must
be followed to cure Preston. It frightened me whenever changes were
made in the protocol. After several years, I came to view the protocol as
merely a guideline that is individualized for each patient according to his
tolerance and reaction to the drugs. We ended up deleting whole sections
of Preston’s protocol due to extreme side effects. He has been off therapy
for five years now with no relapse.
• • • • •
It took me a long time to get over my hang-up that things needed to go
exactly as per protocol. Any deviations on dose or days was a major stress
for me. It took talking to many parents, as well as doctors and nurses, to
realize and feel comfortable with the fact that no one ever goes along
perfectly and that the protocol is meant as the broad guideline. There will
always be times when your child will be off drugs or on half dose because
of illness or low counts or whatever. It took a long time to realize that this
is not going to ruin the effectiveness, that the child gets what she can
handle without causing undue harm.
• • • • •
I sobbed every night for an entire week when Christine was first
taken off chemotherapy for low counts. I was convinced that the
immunosuppression was due to a relapse. That was two years ago, and
we have changed her dosages almost every two weeks due to erratic
counts. I wish I had known how normal it is to go off protocol.
Monday, March 30, 2009
Questions to ask about clinical trials
To fully understand the clinical trial that has been proposed, here are some impor-
tant questions to ask the oncologist:
• What is the purpose of the study?
• Who is sponsoring the study? Who reviews it? How often is it reviewed? Who
monitors patient safety?
• What tests and treatments will be done during the study? How do these differ
from standard treatment?
• Why is it thought that the treatment being studied may be better than standard
treatment?
• What are the possible benefits?
• What are all possible disadvantages?
• What are the possible side effects or risks of the study? What are the side effects
of the study compared to those of standard treatment?
• How will the study affect my child’s daily life?
• What are the possible long-term impacts of the study compared to the standard
treatment?
• How long will the study last? Is this shorter or longer than standard treatment?
• Will the study require more hospitalization than standard treatment?
• Does the study include long-term follow-up care?
• What happens if my child is harmed as a result of the research?
• Compare the study to standard treatment in terms of possible outcomes, side
effects, time involved, costs, and quality of life.
• Have insurers been reimbursing for care under this protocol?
When discussing the clinical trial with the oncologist, you’ll need the information to
review later. Many parents bring a tape recorder or a friend to take notes. Some
parents write down all of the doctor’s answers for later reference.
Informed consent
True informed consent is a process—not merely an explanation and signing of docu-
ments. Informed consent requires that:
1. All the treatments available to the child have been laid on the table and discussed—
not just the treatment available at your hospital or through your doctor, but all the
treatments that could be beneficial, wherever they are given.
2. The parents and, to the extent possible, the child, have discussed these options
and decided that they want to consider one of them.
3. The option selected is thoroughly discussed, with all its benefits and risks clear
explained.
4. Those aspects of the study that are considered experimental and those that a
standard are clearly described.
A fully informed medical decision weighs the relative merits of a therapy after fu
disclosure of benefits, risks, and alternatives.
During the discussions between the doctor(s) and family, all questions should b
answered in language that is clearly understood by the parents and child, and the
should be no pressure to enroll the child in the study. The objective of the informe
consent process is that the participants are comfortable with their choice and ca
comply with it.
We had many discussions with the staff prior to signing the informed
consent to participate in the clinical trial. We asked innumerable
questions, all of which were answered in a frank and honest manner.
We felt that participating gave our child the best chance for a cure,
and we felt good about increasing the knowledge that would help other
children later.
The form that parents sign will have language similar to the following: “The stud
described above has been explained to me, and I voluntarily agree to have my chil
participate in this study. I have had all of my questions answered, and understan
that all future questions that I have about this research will be answered by the inve
tigators listed above.”
The study that our institution was participating in at the time of my
daughter’s diagnosis was attempting to lessen the treatment to reduce
neurotoxicity yet still cure the disease. My family began a massive
research effort on the issue, and we had several family friends who were
physicians discuss the case with the heads of pediatric oncology at their
institutions. The consensus was that since my daughter was at the high
end of the high-risk description, it was advisable to choose the standard
care, which was more aggressive.
Although we believe strongly in clinical trials, we decided to opt for
the standard treatment because she had a poor prognosis, and we felt
that she would need the cranial radiation, despite the possibility of late
side effects.
By the time a study is published in the literature, doctors on the cutting edge of treat-
ment are two to four years into improving that treatment or learning of its shortcom-
ings. For this reason, it is best to make decisions in partnership with knowledgeable
medical caregivers, rather than in isolation.
No matter how comfortable you are with your child’s treating oncologist, it may be
helpful to have another medical caregiver help sort out your options. Often, that per-
son will be the family’s pediatrician or family doctor. Second opinions can be obtained
from physicians at other institutions in your community or region, or any of the larger
pediatric cancer centers. They will arrange to review the information and outline rec-
ommendations. It is most useful to get a second opinion from a center that treats sig-
nificant numbers of patients with your child’s diagnosis. Most pediatric oncologists
are happy to facilitate this process for you.
When my son was diagnosed, we were told we had two options:
a clinical trial or standard treatment. We decided to get a second
opinion before making our decision. Our pediatrician, my husband,
and I met in the doctor’s office for a telephone conference with a
pediatric oncologist from a major treatment center. We each presented
our concerns. Our pediatrician thought of some issues neither my
husband nor I had considered. I think we all came away better informed
of our options.
Second opinions can also be arranged through the Childhood Cancer Ombudsman
Program, which uses volunteer specialists to provide free help to families consider-
ing the range of treatment options and engaged in the informed consent process. (See
Appendix C, Resource Organizations, for contact information.)
tant questions to ask the oncologist:
• What is the purpose of the study?
• Who is sponsoring the study? Who reviews it? How often is it reviewed? Who
monitors patient safety?
• What tests and treatments will be done during the study? How do these differ
from standard treatment?
• Why is it thought that the treatment being studied may be better than standard
treatment?
• What are the possible benefits?
• What are all possible disadvantages?
• What are the possible side effects or risks of the study? What are the side effects
of the study compared to those of standard treatment?
• How will the study affect my child’s daily life?
• What are the possible long-term impacts of the study compared to the standard
treatment?
• How long will the study last? Is this shorter or longer than standard treatment?
• Will the study require more hospitalization than standard treatment?
• Does the study include long-term follow-up care?
• What happens if my child is harmed as a result of the research?
• Compare the study to standard treatment in terms of possible outcomes, side
effects, time involved, costs, and quality of life.
• Have insurers been reimbursing for care under this protocol?
When discussing the clinical trial with the oncologist, you’ll need the information to
review later. Many parents bring a tape recorder or a friend to take notes. Some
parents write down all of the doctor’s answers for later reference.
Informed consent
True informed consent is a process—not merely an explanation and signing of docu-
ments. Informed consent requires that:
1. All the treatments available to the child have been laid on the table and discussed—
not just the treatment available at your hospital or through your doctor, but all the
treatments that could be beneficial, wherever they are given.
2. The parents and, to the extent possible, the child, have discussed these options
and decided that they want to consider one of them.
3. The option selected is thoroughly discussed, with all its benefits and risks clear
explained.
4. Those aspects of the study that are considered experimental and those that a
standard are clearly described.
A fully informed medical decision weighs the relative merits of a therapy after fu
disclosure of benefits, risks, and alternatives.
During the discussions between the doctor(s) and family, all questions should b
answered in language that is clearly understood by the parents and child, and the
should be no pressure to enroll the child in the study. The objective of the informe
consent process is that the participants are comfortable with their choice and ca
comply with it.
We had many discussions with the staff prior to signing the informed
consent to participate in the clinical trial. We asked innumerable
questions, all of which were answered in a frank and honest manner.
We felt that participating gave our child the best chance for a cure,
and we felt good about increasing the knowledge that would help other
children later.
The form that parents sign will have language similar to the following: “The stud
described above has been explained to me, and I voluntarily agree to have my chil
participate in this study. I have had all of my questions answered, and understan
that all future questions that I have about this research will be answered by the inve
tigators listed above.”
The study that our institution was participating in at the time of my
daughter’s diagnosis was attempting to lessen the treatment to reduce
neurotoxicity yet still cure the disease. My family began a massive
research effort on the issue, and we had several family friends who were
physicians discuss the case with the heads of pediatric oncology at their
institutions. The consensus was that since my daughter was at the high
end of the high-risk description, it was advisable to choose the standard
care, which was more aggressive.
Although we believe strongly in clinical trials, we decided to opt for
the standard treatment because she had a poor prognosis, and we felt
that she would need the cranial radiation, despite the possibility of late
side effects.
By the time a study is published in the literature, doctors on the cutting edge of treat-
ment are two to four years into improving that treatment or learning of its shortcom-
ings. For this reason, it is best to make decisions in partnership with knowledgeable
medical caregivers, rather than in isolation.
No matter how comfortable you are with your child’s treating oncologist, it may be
helpful to have another medical caregiver help sort out your options. Often, that per-
son will be the family’s pediatrician or family doctor. Second opinions can be obtained
from physicians at other institutions in your community or region, or any of the larger
pediatric cancer centers. They will arrange to review the information and outline rec-
ommendations. It is most useful to get a second opinion from a center that treats sig-
nificant numbers of patients with your child’s diagnosis. Most pediatric oncologists
are happy to facilitate this process for you.
When my son was diagnosed, we were told we had two options:
a clinical trial or standard treatment. We decided to get a second
opinion before making our decision. Our pediatrician, my husband,
and I met in the doctor’s office for a telephone conference with a
pediatric oncologist from a major treatment center. We each presented
our concerns. Our pediatrician thought of some issues neither my
husband nor I had considered. I think we all came away better informed
of our options.
Second opinions can also be arranged through the Childhood Cancer Ombudsman
Program, which uses volunteer specialists to provide free help to families consider-
ing the range of treatment options and engaged in the informed consent process. (See
Appendix C, Resource Organizations, for contact information.)
Design of clinical trials
There used to be four primary pediatric cancer research groups in North America:
Children’s Cancer Group (CCG), Pediatric Oncology Group (POG), National Wilms’
Tumor Study Group (NWTSG), and Intergroup Rhabdomyosarcoma Study Group
(IRSG). In July 1998, the four groups decided to form a single pediatric cancer clinical
trials organization. The groups officially merged in 2000 under the new name, Chil-
dren’s Oncology Group (COG). New trials developed for children with cancer will be
offered under the COG name. Trials begun by the previous research groups will
continue until they are completed as planned.
Children’s Oncology Group
440 East Huntington Drive #300
Arcadia, CA 91006
(626) 447-0064
(800) 458-6223 (US and Canada)
http://www.childrensoncologygroup.org
More than 230 institutions that treat children with cancer are members of COG.
Researchers from each institution contribute to the design of new clinical trials for
children with cancer. The National Cancer Institute and some individual institutions
design their own trials for children treated at those institutions.
Supervision of clinical trials
The ethical and legal codes ruling medical practice also apply to clinical trials. In
addition, most research is federally funded or regulated (all COG trials are), with
rules to protect patients. COG also has review boards that meet at prearranged dates
for the duration of a clinical trial to ensure that the risks of all parts of the trial are
acceptable relative to the benefits.
Side effects are reported by the treating institution. If concerns are raised, the study
may be temporarily halted while an independent Data Safety and Monitoring Board
(DSMB) and the study committee review the situation. If one arm of the trial is causing
unexpected or unacceptable side effects, that portion is stopped, and the children
enrolled are given the better treatment. If one of the arms appears to be less effective
than the standard, it will be terminated. Conversely, if one arm is better than the
standard, the trial will also be terminated.
When Brian first entered the CCG-1922 protocol, there were four
arms. One was to see which had the best response in treatments between
prednisone versus decadron and 6MP versus 6TG. After Brian completed
this protocol, in December 1996, we were told that the patients that were
on 6MP and prednisone were to be switched to 6MP and decadron. There
seemed to be a better outcome.
The results of the CCG-1922 study are not complete. But we were told
in the beginning of the protocol that if one arm was doing better than the
other arm, the patients would be switched to the better arm.
All institutions that conduct clinical trials also have an Institutional Review Board
(IRB) or an ethics committee that reviews and approves all research taking place
there. The purpose of such boards and committees—made up of scientists, doctors,
nurses, and citizens from the community—is to protect patients. Before a child is
enrolled on a COG trial, the trial must be reviewed and approved by the NCI and
COG. In addition, the IRB at the hospital where the child is being treated must also
approve the trial.
Children’s Cancer Group (CCG), Pediatric Oncology Group (POG), National Wilms’
Tumor Study Group (NWTSG), and Intergroup Rhabdomyosarcoma Study Group
(IRSG). In July 1998, the four groups decided to form a single pediatric cancer clinical
trials organization. The groups officially merged in 2000 under the new name, Chil-
dren’s Oncology Group (COG). New trials developed for children with cancer will be
offered under the COG name. Trials begun by the previous research groups will
continue until they are completed as planned.
Children’s Oncology Group
440 East Huntington Drive #300
Arcadia, CA 91006
(626) 447-0064
(800) 458-6223 (US and Canada)
http://www.childrensoncologygroup.org
More than 230 institutions that treat children with cancer are members of COG.
Researchers from each institution contribute to the design of new clinical trials for
children with cancer. The National Cancer Institute and some individual institutions
design their own trials for children treated at those institutions.
Supervision of clinical trials
The ethical and legal codes ruling medical practice also apply to clinical trials. In
addition, most research is federally funded or regulated (all COG trials are), with
rules to protect patients. COG also has review boards that meet at prearranged dates
for the duration of a clinical trial to ensure that the risks of all parts of the trial are
acceptable relative to the benefits.
Side effects are reported by the treating institution. If concerns are raised, the study
may be temporarily halted while an independent Data Safety and Monitoring Board
(DSMB) and the study committee review the situation. If one arm of the trial is causing
unexpected or unacceptable side effects, that portion is stopped, and the children
enrolled are given the better treatment. If one of the arms appears to be less effective
than the standard, it will be terminated. Conversely, if one arm is better than the
standard, the trial will also be terminated.
When Brian first entered the CCG-1922 protocol, there were four
arms. One was to see which had the best response in treatments between
prednisone versus decadron and 6MP versus 6TG. After Brian completed
this protocol, in December 1996, we were told that the patients that were
on 6MP and prednisone were to be switched to 6MP and decadron. There
seemed to be a better outcome.
The results of the CCG-1922 study are not complete. But we were told
in the beginning of the protocol that if one arm was doing better than the
other arm, the patients would be switched to the better arm.
All institutions that conduct clinical trials also have an Institutional Review Board
(IRB) or an ethics committee that reviews and approves all research taking place
there. The purpose of such boards and committees—made up of scientists, doctors,
nurses, and citizens from the community—is to protect patients. Before a child is
enrolled on a COG trial, the trial must be reviewed and approved by the NCI and
COG. In addition, the IRB at the hospital where the child is being treated must also
approve the trial.
Randomization
Some scientific studies require a process called randomization. This means that after
parents agree to enroll their child in a clinical trial, a computer will randomly assign
the child to one arm of the study. If there are three arms, the parents will not know
which of the three (one standard, two experimental) their child will receive until the
computer assigns one. The purpose of computer assignment is to ensure that patients
are evenly assigned to each treatment plan without bias from physicians or families.
One group of patients (the control group) always receives the standard treatment to
provide a basis for comparison to the experimental arms.
At the time the clinical trial is designed, there is no conclusive evidence to indicate
which arm is superior. It is therefore not possible to predict if your child will benefit
from participating in the study. Most arms incorporate standard therapy, and only a
small portion of the arm contains the “experimental” therapy. This may consist of new
drugs, old drugs used in a new way, duration of treatment that is shorter or longer
than standard care, the addition or deletion of certain treatments (such as radiation
therapy), or the use of new supportive care interventions, such as preventative anti-
biotics or new drugs to control nausea.
We decided not to participate in a study for several reasons. One arm
would require extra spinal taps, and our son was just so little that we
couldn’t bear the thought of any more treatments than were required in
the standard arm. Another arm contained a second induction, and since
we were on Medicaid, we just didn’t feel it was right for the taxpayers to
]pay for anything extra. We felt we were only entitled to basic
healthcare.
• • • • •
We had a hard time deciding whether to go with the standard
treatment or to participate in the study. The “B” arm of the study
seemed, on intuition, to be too harsh for her because she was so weak
at the time. We finally did opt for the study, hoping we wouldn’t be
randomized to “B.” We chose the study basically so that the computer
could choose and we wouldn’t ever have to think “we should have gone
with the study.” As it turned out, we were randomized to the standard
arm, so we got what we wanted while still participating in the study.
Researchers closely monitor ongoing studies and modify the study if one arm is
clearly identified as superior during the course of the trial.
parents agree to enroll their child in a clinical trial, a computer will randomly assign
the child to one arm of the study. If there are three arms, the parents will not know
which of the three (one standard, two experimental) their child will receive until the
computer assigns one. The purpose of computer assignment is to ensure that patients
are evenly assigned to each treatment plan without bias from physicians or families.
One group of patients (the control group) always receives the standard treatment to
provide a basis for comparison to the experimental arms.
At the time the clinical trial is designed, there is no conclusive evidence to indicate
which arm is superior. It is therefore not possible to predict if your child will benefit
from participating in the study. Most arms incorporate standard therapy, and only a
small portion of the arm contains the “experimental” therapy. This may consist of new
drugs, old drugs used in a new way, duration of treatment that is shorter or longer
than standard care, the addition or deletion of certain treatments (such as radiation
therapy), or the use of new supportive care interventions, such as preventative anti-
biotics or new drugs to control nausea.
We decided not to participate in a study for several reasons. One arm
would require extra spinal taps, and our son was just so little that we
couldn’t bear the thought of any more treatments than were required in
the standard arm. Another arm contained a second induction, and since
we were on Medicaid, we just didn’t feel it was right for the taxpayers to
]pay for anything extra. We felt we were only entitled to basic
healthcare.
• • • • •
We had a hard time deciding whether to go with the standard
treatment or to participate in the study. The “B” arm of the study
seemed, on intuition, to be too harsh for her because she was so weak
at the time. We finally did opt for the study, hoping we wouldn’t be
randomized to “B.” We chose the study basically so that the computer
could choose and we wouldn’t ever have to think “we should have gone
with the study.” As it turned out, we were randomized to the standard
arm, so we got what we wanted while still participating in the study.
Researchers closely monitor ongoing studies and modify the study if one arm is
clearly identified as superior during the course of the trial.
Types of clinical trials
There are three main types of clinical trials.
• Phase I. These clinical trials are designed to determine the maximum tolerated
doses (MTD) of a new drug and to evaluate the side effects. The dose of a new
drug is gradually increased in small groups of children until unacceptable toxic-
ity or side effects are seen. This means that one small group of children gets a
low dose. The next small group gets a slightly higher dose, and so on until an
unacceptable number of patients experience unacceptable toxicities. The highest
dose of a drug that can be safely given to children without unacceptable side
effects is then studied in a Phase II trial.
Phase I studies are done on drugs whose effectiveness against a disease is
unknown, though there is often laboratory evidence to suggest that it may be
effective. These are true experiments. Although an individual child may benefit
from participation, it is much more likely that later patients will reap the full
benefit of the information. All known effective therapies have usually been
exhausted for children asked to participate in a Phase I trial. Parents often enroll
their children in these trials in the hope that a new and untried drug will be
effective, but they need to recognize that the chances are low.
• Phase II. These trials are designed to see if a new drug is active against specific
tumors. Sometimes patients are enrolled when their tumors have relapsed after
other therapies. Occasionally, Phase II trials are designed to test an exceptionally
promising agent against a tumor for which other effective therapies exist. While
the treatments are experimental, there is usually reason to believe that patients
enrolled may benefit.
• Phase III trials. These clinical trials determine if a new treatment is better than the
usual or standard therapy. Some are designed solely to improve survival; others try
to maintain survival rates while lowering toxicity of treatment. In these studies, all
patients are given known effective therapies. Some will derive direct benefit, if a
new arm proves superior to standard therapy. Others will receive the same therapy
they would have received if not enrolled on the study (the standard arm).
The National Cancer Institute (NCI) offers parents several resources to help them
understand the clinical trial process. You can call the National Cancer Institute at
(800) 422-6237 or you can visit the NCI clinical trials web site at http://www.cancer.
gov/clinical_trials/.
The information in the rest of the chapter is about Phase III trials that are reviewed
and funded by the National Cancer Institute. Issues for enrolling in Phase I and
Phase II trials are very different, as are concerns when enrolling in trials sponsored by
private companies.
• Phase I. These clinical trials are designed to determine the maximum tolerated
doses (MTD) of a new drug and to evaluate the side effects. The dose of a new
drug is gradually increased in small groups of children until unacceptable toxic-
ity or side effects are seen. This means that one small group of children gets a
low dose. The next small group gets a slightly higher dose, and so on until an
unacceptable number of patients experience unacceptable toxicities. The highest
dose of a drug that can be safely given to children without unacceptable side
effects is then studied in a Phase II trial.
Phase I studies are done on drugs whose effectiveness against a disease is
unknown, though there is often laboratory evidence to suggest that it may be
effective. These are true experiments. Although an individual child may benefit
from participation, it is much more likely that later patients will reap the full
benefit of the information. All known effective therapies have usually been
exhausted for children asked to participate in a Phase I trial. Parents often enroll
their children in these trials in the hope that a new and untried drug will be
effective, but they need to recognize that the chances are low.
• Phase II. These trials are designed to see if a new drug is active against specific
tumors. Sometimes patients are enrolled when their tumors have relapsed after
other therapies. Occasionally, Phase II trials are designed to test an exceptionally
promising agent against a tumor for which other effective therapies exist. While
the treatments are experimental, there is usually reason to believe that patients
enrolled may benefit.
• Phase III trials. These clinical trials determine if a new treatment is better than the
usual or standard therapy. Some are designed solely to improve survival; others try
to maintain survival rates while lowering toxicity of treatment. In these studies, all
patients are given known effective therapies. Some will derive direct benefit, if a
new arm proves superior to standard therapy. Others will receive the same therapy
they would have received if not enrolled on the study (the standard arm).
The National Cancer Institute (NCI) offers parents several resources to help them
understand the clinical trial process. You can call the National Cancer Institute at
(800) 422-6237 or you can visit the NCI clinical trials web site at http://www.cancer.
gov/clinical_trials/.
The information in the rest of the chapter is about Phase III trials that are reviewed
and funded by the National Cancer Institute. Issues for enrolling in Phase I and
Phase II trials are very different, as are concerns when enrolling in trials sponsored by
private companies.
Standard treatment
Standard treatment is the best known treatment for a specific type of cancer. For
instance, in 2002, the standard treatment for intermediate-risk ALL is combination
chemotherapy for two to three years. The standard treatment for high-risk ALL
includes more drugs and may include cranial radiation and/or stem cell transplant
for very high-risk groups.
As results from ongoing and completed clinical trials are analyzed, more knowledge
is accumulated and standard treatments evolve. In the 1980s, most children with
ALL received cranial radiation as standard care. Carefully controlled clinical trials
established that the majority of children with ALL do not require cranial radiation.
The standard-of-care was changed.
Most clinical trials divide patients into two or more groups (“arms” of the trial). One
arm is the standard-of-care (best treatment known), and the other arms are the
experimental portions, which scientists hope will prove to be more effective or less
toxic than the standard treatment. The trial is designed to compare the experimental
arms to the standard arm, to determine whether patients will benefit.
In the early 1990s, my daughter’s clinical trial for high-risk ALL had
three arms. One arm was the standard treatment of four drug rotations of
chemotherapy with a delayed intensification and consolidation, and 1,800
rads of cranial radiation. The second arm was identical except radiation
was replaced with more frequent doses of intrathecal methotrexate. The
third arm was for children who had CNS disease at diagnosis or who
were slow responders to initial therapy. They received a very aggressive
chemotherapy regimen plus cranial radiation.
The purpose of the study was to compare response to treatment,
duration of disease control, and side effects. The investigators hoped to be
able to eliminate radiation from the standard care for high-risk ALL.
instance, in 2002, the standard treatment for intermediate-risk ALL is combination
chemotherapy for two to three years. The standard treatment for high-risk ALL
includes more drugs and may include cranial radiation and/or stem cell transplant
for very high-risk groups.
As results from ongoing and completed clinical trials are analyzed, more knowledge
is accumulated and standard treatments evolve. In the 1980s, most children with
ALL received cranial radiation as standard care. Carefully controlled clinical trials
established that the majority of children with ALL do not require cranial radiation.
The standard-of-care was changed.
Most clinical trials divide patients into two or more groups (“arms” of the trial). One
arm is the standard-of-care (best treatment known), and the other arms are the
experimental portions, which scientists hope will prove to be more effective or less
toxic than the standard treatment. The trial is designed to compare the experimental
arms to the standard arm, to determine whether patients will benefit.
In the early 1990s, my daughter’s clinical trial for high-risk ALL had
three arms. One arm was the standard treatment of four drug rotations of
chemotherapy with a delayed intensification and consolidation, and 1,800
rads of cranial radiation. The second arm was identical except radiation
was replaced with more frequent doses of intrathecal methotrexate. The
third arm was for children who had CNS disease at diagnosis or who
were slow responders to initial therapy. They received a very aggressive
chemotherapy regimen plus cranial radiation.
The purpose of the study was to compare response to treatment,
duration of disease control, and side effects. The investigators hoped to be
able to eliminate radiation from the standard care for high-risk ALL.
CHAPTER 4 Clinical Trials
The challenge in pediatric oncology remains clear: to strive
for the cure and health of all children through the
development of more effective yet less damaging treatment
for our young patients.
—Daniel M. Green, MD and Giulio J. D’Angio, MD
Late Effects of Treatment for Childhood Cancer
WITHIN DAYS OF ARRIVING at a major pediatric medical center with a child newly diag-
nosed with leukemia, parents are often asked to enroll their child in a clinical trial. A
clinical trial is a carefully controlled research study that uses human volunteers to
answer specific scientific questions. In order to accurately evaluate any new treat-
ment, large numbers of patients are needed in each clinical trial.
Pediatric clinical trials are all directed toward improving upon existing treatments. A
trial can involve a totally new approach that is thought to be promising, fine-tune
existing treatments, improve the results or reduce the toxicity of known treatments,
or develop new ways to assess response to treatments. More than half of all children
with cancer in North America are enrolled in clinical trials for part or all of their
treatment.
This chapter describes clinical trials and protocols and gives examples of how differ-
ent parents made decisions on this important issue. The trials discussed here are
treatment trials aimed at the leukemia itself. You may also be invited to participate in
other studies which are sponsored by pharmaceutical companies, especially those
designed to support patients through the effects of treatment. Such supportive care
trials evaluate antibiotics, antinausea drugs, and new agents to raise blood counts,
minimize pain, or control other symptoms. The oversight and control of these trials
involves an entirely different mechanism than the oncology treatment studies dis-
cussed in this chapter. Ask your doctor or nurse to discuss these studies with you if
you are invited to participate in them. Making an informed judgment on whether to
participate is crucial, because it will determine what treatment your child will receive
in the years to come.
for the cure and health of all children through the
development of more effective yet less damaging treatment
for our young patients.
—Daniel M. Green, MD and Giulio J. D’Angio, MD
Late Effects of Treatment for Childhood Cancer
WITHIN DAYS OF ARRIVING at a major pediatric medical center with a child newly diag-
nosed with leukemia, parents are often asked to enroll their child in a clinical trial. A
clinical trial is a carefully controlled research study that uses human volunteers to
answer specific scientific questions. In order to accurately evaluate any new treat-
ment, large numbers of patients are needed in each clinical trial.
Pediatric clinical trials are all directed toward improving upon existing treatments. A
trial can involve a totally new approach that is thought to be promising, fine-tune
existing treatments, improve the results or reduce the toxicity of known treatments,
or develop new ways to assess response to treatments. More than half of all children
with cancer in North America are enrolled in clinical trials for part or all of their
treatment.
This chapter describes clinical trials and protocols and gives examples of how differ-
ent parents made decisions on this important issue. The trials discussed here are
treatment trials aimed at the leukemia itself. You may also be invited to participate in
other studies which are sponsored by pharmaceutical companies, especially those
designed to support patients through the effects of treatment. Such supportive care
trials evaluate antibiotics, antinausea drugs, and new agents to raise blood counts,
minimize pain, or control other symptoms. The oversight and control of these trials
involves an entirely different mechanism than the oncology treatment studies dis-
cussed in this chapter. Ask your doctor or nurse to discuss these studies with you if
you are invited to participate in them. Making an informed judgment on whether to
participate is crucial, because it will determine what treatment your child will receive
in the years to come.
X-ray
X-rays, a type of electromagnetic radiation, provide the doctor with a quick and
simple method of viewing organs and structures inside your child’s body. Pictures are
taken and then displayed on a film or a computer screen. X-rays are performed for
many reasons during a child’s treatment for leukemia. Some of the most common
reasons for taking x-rays are:
• Needed before operations.
• Needed after your child’s central venous catheter is placed to confirm that it is in
the proper location.
• Used as part of a workup for fever to determine whether your child may have
pneumonia.
Your child is positioned by the technologist in a manner that will make it easiest to get
the images that are needed. For chest x-rays, your child may be asked to breathe in,
hold her breath, and remain perfectly still for a few seconds. The technologist leaves
the room during the time that 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 her body.
Pregnant women should not be present 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!”
simple method of viewing organs and structures inside your child’s body. Pictures are
taken and then displayed on a film or a computer screen. X-rays are performed for
many reasons during a child’s treatment for leukemia. Some of the most common
reasons for taking x-rays are:
• Needed before operations.
• Needed after your child’s central venous catheter is placed to confirm that it is in
the proper location.
• Used as part of a workup for fever to determine whether your child may have
pneumonia.
Your child is positioned by the technologist in a manner that will make it easiest to get
the images that are needed. For chest x-rays, your child may be asked to breathe in,
hold her breath, and remain perfectly still for a few seconds. The technologist leaves
the room during the time that 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 her body.
Pregnant women should not be present 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!”
Urine collections
Timed urine collections are sometimes needed at various times during your child’s
treatment. Such collections are useful in evaluating your child’s kidney function prior
to receiving chemotherapy drugs that can cause damage to the kidneys or to measure
certain substances in the urine. If your child is toilet trained, the collection is done
by saving all the urine your child produces in a defined period of hours. If your child
is not yet toilet trained, a Foley catheter (catheter that goes up the urethra into the
bladder) will need to be placed for a period of time.
Urine specimens
Chemotherapy requires frequent urine specimens. One way to help obtain a sample
is to encourage lots of drinking the hour before or ask the nurse to increase the drip
rate on the IV. 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 the
preschoolers.) Use a “hat” under the toilet seat. This is a shallow plastic bucket that
fits under the seat and catches the 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 areas 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.
If infection is suspected, then a clean catch specimen for culture will be ordered.
Your child’s perineal area will need to be gently cleansed with soap or an antiseptic
towelette, and she will need to urinate in a small sterile container. Urinary tract
infections are much more common in girls than boys, because the female urethra is
much shorter.
Occasionally, your physician will order a urinary catheterization if a clean specimen
can’t be obtained or your child is unable to urinate. This procedure can be quite
stressful because it involves placing a sterile rubber tube up the urethra and into the
bladder. It is quite appropriate to ask for a mild sedative or muscle relaxant before
the procedure if your child is anxious. It is also perfectly acceptable to request that the
most skilled person available perform the procedure. In skilled nursing hands, the
procedure takes less than five minutes to perform.
treatment. Such collections are useful in evaluating your child’s kidney function prior
to receiving chemotherapy drugs that can cause damage to the kidneys or to measure
certain substances in the urine. If your child is toilet trained, the collection is done
by saving all the urine your child produces in a defined period of hours. If your child
is not yet toilet trained, a Foley catheter (catheter that goes up the urethra into the
bladder) will need to be placed for a period of time.
Urine specimens
Chemotherapy requires frequent urine specimens. One way to help obtain a sample
is to encourage lots of drinking the hour before or ask the nurse to increase the drip
rate on the IV. 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 the
preschoolers.) Use a “hat” under the toilet seat. This is a shallow plastic bucket that
fits under the seat and catches the 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 areas 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.
If infection is suspected, then a clean catch specimen for culture will be ordered.
Your child’s perineal area will need to be gently cleansed with soap or an antiseptic
towelette, and she will need to urinate in a small sterile container. Urinary tract
infections are much more common in girls than boys, because the female urethra is
much shorter.
Occasionally, your physician will order a urinary catheterization if a clean specimen
can’t be obtained or your child is unable to urinate. This procedure can be quite
stressful because it involves placing a sterile rubber tube up the urethra and into the
bladder. It is quite appropriate to ask for a mild sedative or muscle relaxant before
the procedure if your child is anxious. It is also perfectly acceptable to request that the
most skilled person available perform the procedure. In skilled nursing hands, the
procedure takes less than five minutes to perform.
Taking a temperature
During the period in which your child is undergoing treatment, fever becomes an
enemy because it is often the first sign of infection. Parents take hundreds of temper-
atures, especially when their child is not feeling well. Temperatures can be taken
under the tongue, under the arm, 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, especially when blood counts are depressed.
• Use a glass thermometer under the tongue.
• Use a digital thermometer under the tongue or arm. Some have an alarm that
beeps when it is time to remove the thermometer.
We bought a digital thermometer that we only use under his arm. It
has worked well for us.
• Tympanic thermometers measure infrared waves and 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 (ear) thermometer. The
device cost over a hundred dollars then, but it worked beautifully. It takes
only one second to obtain a temperature. You 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 101º F (38.5º C). It is especially 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 very helpful to have a copy of your child’s most
recent blood count when you call to notify your physician about fever.
enemy because it is often the first sign of infection. Parents take hundreds of temper-
atures, especially when their child is not feeling well. Temperatures can be taken
under the tongue, under the arm, 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, especially when blood counts are depressed.
• Use a glass thermometer under the tongue.
• Use a digital thermometer under the tongue or arm. Some have an alarm that
beeps when it is time to remove the thermometer.
We bought a digital thermometer that we only use under his arm. It
has worked well for us.
• Tympanic thermometers measure infrared waves and 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 (ear) thermometer. The
device cost over a hundred dollars then, but it worked beautifully. It takes
only one second to obtain a temperature. You 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 101º F (38.5º C). It is especially 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 very helpful to have a copy of your child’s most
recent blood count when you call to notify your physician about fever.
Taking pills
Over the course of your child’s treatment, it will be necessary to administer pills and/
or liquid medications on a regular basis. When giving oral medications, it is essential
to get off to a good start and establish cooperation early.
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.
• • • • •
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
over 3,000 pills and 1,100 teaspoons of liquid medication during
treatment, I’m very glad we got off to such a good start.
Gel caps come in many sizes. Number 4s are small enough for a 3- or 4-year-old child
to swallow. Many pills can be chewed or swallowed whole without taste problems.
Steroid medications (prednisone, dexamethasone, etc.) should not be chewed, because
they have a bitter aftertaste and may cause your child to develop an aversion to all
oral medications. Just remember that different children develop different taste prefer-
ences 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 them a little control in their chaotic world.
For younger children, many parents crush the pills in a small amount of pudding,
applesauce, jam, frozen juice concentrate, or other favorite food.
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.
• • • • •
We used the liquid form of prednisone for my son, mixed it with a
chocolate drink, and followed this with M&Ms. The chocolate seemed
to mask the taste.
• • • • •
Our son was 2 1⁄
2 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 we’d 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 that 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 Garrett to take his foul tasting 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 Garrett’s 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 potion 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). This
particular mixing agent is designed to be “inert,” but you can’t be too
careful. Meds with time release or slow release agents should never be
crushed. Some meds should never be mixed with milk, for example.
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 whose immune systems are suppressed. It comes in liquid
or pill form, and is produced by several different manufacturers. Ask your pharm-
acist for a kid taste test. Letting your child choose a medicine that appeals to him
encourages compliance.
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.
Since 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 use the
Pac-man analogy, “The pills are needed to gobble up the last few bad cells.” Others
explain that the leukemia can return, so medicine is needed to prevent it from grow-
ing again. It is important that parents give children all the required medications;
there are many studies showing low compliance results in lower survival rates.
Issues for teenagers about taking pills are completely different from those for young
children. The 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 con-
flict and tends to frustrate everyone. If you need help, ask for an assessment by the
psychosocial team at the hospital to work out a plan for adherence to treatment.
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 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 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 sixteen-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 three-plus years of treatment, you are
going to have a missed dose, and it helps to know how to handle it.
or liquid medications on a regular basis. When giving oral medications, it is essential
to get off to a good start and establish cooperation early.
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.
• • • • •
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
over 3,000 pills and 1,100 teaspoons of liquid medication during
treatment, I’m very glad we got off to such a good start.
Gel caps come in many sizes. Number 4s are small enough for a 3- or 4-year-old child
to swallow. Many pills can be chewed or swallowed whole without taste problems.
Steroid medications (prednisone, dexamethasone, etc.) should not be chewed, because
they have a bitter aftertaste and may cause your child to develop an aversion to all
oral medications. Just remember that different children develop different taste prefer-
ences 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 them a little control in their chaotic world.
For younger children, many parents crush the pills in a small amount of pudding,
applesauce, jam, frozen juice concentrate, or other favorite food.
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.
• • • • •
We used the liquid form of prednisone for my son, mixed it with a
chocolate drink, and followed this with M&Ms. The chocolate seemed
to mask the taste.
• • • • •
Our son was 2 1⁄
2 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 we’d 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 that 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 Garrett to take his foul tasting 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 Garrett’s 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 potion 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). This
particular mixing agent is designed to be “inert,” but you can’t be too
careful. Meds with time release or slow release agents should never be
crushed. Some meds should never be mixed with milk, for example.
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 whose immune systems are suppressed. It comes in liquid
or pill form, and is produced by several different manufacturers. Ask your pharm-
acist for a kid taste test. Letting your child choose a medicine that appeals to him
encourages compliance.
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.
Since 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 use the
Pac-man analogy, “The pills are needed to gobble up the last few bad cells.” Others
explain that the leukemia can return, so medicine is needed to prevent it from grow-
ing again. It is important that parents give children all the required medications;
there are many studies showing low compliance results in lower survival rates.
Issues for teenagers about taking pills are completely different from those for young
children. The 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 con-
flict and tends to frustrate everyone. If you need help, ask for an assessment by the
psychosocial team at the hospital to work out a plan for adherence to treatment.
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 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 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 sixteen-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 three-plus years of treatment, you are
going to have a missed dose, and it helps to know how to handle it.
Subcutaneous injections
Some children require medications given by subcutaneous injection (shot under the
skin) during their treatment. For example, Neupogen (G-CSF), a colony-stimulating
factor that is often used to boost the white blood cell count, and methotrexate are
usually given by injection.
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 Beanie baby 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 one to two
hours before administration. Parents can also reduce pain by rubbing ice over the site
to numb the area prior to injection. Other ideas are on the Internet at http://webpages.
charter.net/drshrink/gcsftips.htm.
My two boys have ALL. Brian and Kevin both receive[d] IM
methotrexate as part of their protocols. Brian, because of his age (12),
was very macho about it, used “freezy” spray to numb the thigh, then
giggled or made funny faces while the methotrexate was pushed. He had
no aftereffects. Kevin, only 4 when they began, still doesn’t like them.
There were three or four months of overlap, when both boys got shots at
the same time every week. This made it easier for Kevin, but he still
insisted on an ice pack and freezy spray. Now, he uses the spray only.
skin) during their treatment. For example, Neupogen (G-CSF), a colony-stimulating
factor that is often used to boost the white blood cell count, and methotrexate are
usually given by injection.
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 Beanie baby 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 one to two
hours before administration. Parents can also reduce pain by rubbing ice over the site
to numb the area prior to injection. Other ideas are on the Internet at http://webpages.
charter.net/drshrink/gcsftips.htm.
My two boys have ALL. Brian and Kevin both receive[d] IM
methotrexate as part of their protocols. Brian, because of his age (12),
was very macho about it, used “freezy” spray to numb the thigh, then
giggled or made funny faces while the methotrexate was pushed. He had
no aftereffects. Kevin, only 4 when they began, still doesn’t like them.
There were three or four months of overlap, when both boys got shots at
the same time every week. This made it easier for Kevin, but he still
insisted on an ice pack and freezy spray. Now, he uses the spray only.
Starting an IV (intravenous drip)
Most pediatric hospitals have teams of technicians who specialize in starting IVs and
drawing blood. The IV technician will generally use a vein in the lower arm or hand.
First, a constricting band is put above the site to make the veins larger and easier to
see and feel. The vein is felt by the technician, the area is cleaned, and the needle is
inserted. Sometimes a needle is left in place and sometimes it is withdrawn, leaving
only a thin plastic tube in the vein. The technician will make sure that the needle (or
tube) is in the proper place, then cover the site with a clear dressing and secure it
with tape.
Some methods that help when having an IV started are:
• Stay calm. The body reacts to fear by constricting the blood vessels near the skin
surface. Small children are usually more calm with a parent present; teenagers
may or may not desire privacy. Listening to music, visualizing a tranquil scene
(mountains covered with snow, floating in a pool), or using the same technician
each time can help.
• Use EMLA cream or Numby Stuff. EMLA—a cream anesthetic—is applied to
the skin one to two hours prior to the procedure to prevent pain. In some cases,
it can constrict the veins, so experiment to see if it works for your child. Numby
Stuff—a needle-free anesthetic—delivers a cream anesthetic through the skin
using a mild, low-level electric current. EMLA cream and Numby Stuff are not
recommended when giving medications (for example, vincristine) that can burn
the skin if leakage occurs.
• Keep warm. Cold temperatures also cause the surface blood vessels to constrict.
Wrapping the child in a blanket and putting a hot water bottle on the arm can
enlarge the veins.
• Drink lots of fluids. Dehydration decreases the fluid in the veins, so encourage
lots of drinking.
• Let gravity help. If the child is lying in bed, have her hang her arm down over
the side to increase the size of the vessels in the arm and hand.
• Let your child have control as appropriate. If your child has a preference, let
him pick the arm to be stuck. If he is a veteran of many IVs, let him point out
the best vein. Good technicians know that patients are quite aware of their best
bet for a good vein.
• Stop if problems develop. The art of treating children requires 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 their needs are respected
and 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) just 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 just 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.
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 vein is felt by the technician, the area is cleaned, and the needle is
inserted. Sometimes a needle is left in place and sometimes it is withdrawn, leaving
only a thin plastic tube in the vein. The technician will make sure that the needle (or
tube) is in the proper place, then cover the site with a clear dressing and secure it
with tape.
Some methods that help when having an IV started are:
• Stay calm. The body reacts to fear by constricting the blood vessels near the skin
surface. Small children are usually more calm with a parent present; teenagers
may or may not desire privacy. Listening to music, visualizing a tranquil scene
(mountains covered with snow, floating in a pool), or using the same technician
each time can help.
• Use EMLA cream or Numby Stuff. EMLA—a cream anesthetic—is applied to
the skin one to two hours prior to the procedure to prevent pain. In some cases,
it can constrict the veins, so experiment to see if it works for your child. Numby
Stuff—a needle-free anesthetic—delivers a cream anesthetic through the skin
using a mild, low-level electric current. EMLA cream and Numby Stuff are not
recommended when giving medications (for example, vincristine) that can burn
the skin if leakage occurs.
• Keep warm. Cold temperatures also cause the surface blood vessels to constrict.
Wrapping the child in a blanket and putting a hot water bottle on the arm can
enlarge the veins.
• Drink lots of fluids. Dehydration decreases the fluid in the veins, so encourage
lots of drinking.
• Let gravity help. If the child is lying in bed, have her hang her arm down over
the side to increase the size of the vessels in the arm and hand.
• Let your child have control as appropriate. If your child has a preference, let
him pick the arm to be stuck. If he is a veteran of many IVs, let him point out
the best vein. Good technicians know that patients are quite aware of their best
bet for a good vein.
• Stop if problems develop. The art of treating children requires 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 their needs are respected
and 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) just 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 just 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.
Spinal tap (umbar puncture or LP)
Due to the blood-brain 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 to kill any blasts present and
prevent a possible central nervous system relapse. The drugs most commonly used
intrathecally are methotrexate, ARA-C, and hydrocortisone. The number of spinal
taps required varies depending on the child’s risk level, the clinical study involved,
and whether radiation is used.
Some hospitals routinely sedate children for spinal taps, and others do not. If the
child is not sedated, EMLA cream is usually prescribed. EMLA is an anesthetic cream
put on the spinal tap site one to two hours prior to the procedure. It anesthetizes
deep into the tissue, preventing some or all of the pain associated with the procedure.
To perform a spinal tap, the physician or nurse practitioner will ask the child to lie on
her side with her head tucked close to the chest and knees drawn up. A nurse usu-
ally helps hold the child in this position. The doctor will feel the designated spot in
the lower back, and will swab it with antiseptic several times. The antiseptic feels very
cold on the skin. A sterile sheet may drape the area, and the doctor will wear sterile
gloves. One or two shots of an anesthetic (usually xylocaine) may be injected into the
skin and deeper tissues. This causes a painful stinging or burning sensation that lasts
about a minute. If EMLA was used, the doctor may still inject anesthetic into the deep
tissues. A few minutes’ wait is necessary to ensure that the area is fully anesthetized.
My 4-year-old daughter had finished eighteen months of her treatment
for ALL when EMLA was first prescribed. She had been terrified of going
to the clinic. After using EMLA for her next LP, a dramatic change
occurred. She was no longer frightened to go for treatment, and her
behavior at home improved unbelievably. We use it for everything now:
finger pokes, accessing port, bone marrows, even flu shots.
It is essential that the child hold very still for the rest of the procedure. The doctor
will push a needle between two vertebrae into the space where cerebrospinal fluid
(CSF) is found. The CSF will begin to drip out of the hollow needle into a container.
After a small amount is collected, a syringe is attached to the needle in the back and
the medicine is slowly injected, causing a sensation of coldness or pressure down the
leg. The needle is then removed and the spot bandaged. The CSF is sent to the lab-
oratory to see if any cancer cells are present and to measure glucose and protein.
During spinals, Brent listens to rock and roll on his Walkman, but he
keeps the volume low enough so that he can still hear what is going on.
He likes me to lift up the earpiece and tell him when each part of the
procedure is finished and what’s coming next.
If your child or teen develops a persistent severe headache following the procedure
that lessens while he lies flat, but throbs when he sits up, notify your physician or
nurse. Keep your child lying flat, and offer high-caffeine beverages, such as Mountain
Dew. If these measures fail to give your child relief, an anesthesiologist sometimes
does a procedure called a “blood patch.” 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 it at the site of the prior spinal tap
where CSF may be slowly leaking from the canal into the tissues. If this is the cause of
the headache, the relief is immediate. This procedure is generally performed in the
recovery room, emergency room, clinic, or inpatient unit. You can stay with your
child during the procedure.
blasts in the central nervous system (brain and spinal cord). Chemotherapy drugs
must be directly injected into the cerebrospinal fluid to kill any blasts present and
prevent a possible central nervous system relapse. The drugs most commonly used
intrathecally are methotrexate, ARA-C, and hydrocortisone. The number of spinal
taps required varies depending on the child’s risk level, the clinical study involved,
and whether radiation is used.
Some hospitals routinely sedate children for spinal taps, and others do not. If the
child is not sedated, EMLA cream is usually prescribed. EMLA is an anesthetic cream
put on the spinal tap site one to two hours prior to the procedure. It anesthetizes
deep into the tissue, preventing some or all of the pain associated with the procedure.
To perform a spinal tap, the physician or nurse practitioner will ask the child to lie on
her side with her head tucked close to the chest and knees drawn up. A nurse usu-
ally helps hold the child in this position. The doctor will feel the designated spot in
the lower back, and will swab it with antiseptic several times. The antiseptic feels very
cold on the skin. A sterile sheet may drape the area, and the doctor will wear sterile
gloves. One or two shots of an anesthetic (usually xylocaine) may be injected into the
skin and deeper tissues. This causes a painful stinging or burning sensation that lasts
about a minute. If EMLA was used, the doctor may still inject anesthetic into the deep
tissues. A few minutes’ wait is necessary to ensure that the area is fully anesthetized.
My 4-year-old daughter had finished eighteen months of her treatment
for ALL when EMLA was first prescribed. She had been terrified of going
to the clinic. After using EMLA for her next LP, a dramatic change
occurred. She was no longer frightened to go for treatment, and her
behavior at home improved unbelievably. We use it for everything now:
finger pokes, accessing port, bone marrows, even flu shots.
It is essential that the child hold very still for the rest of the procedure. The doctor
will push a needle between two vertebrae into the space where cerebrospinal fluid
(CSF) is found. The CSF will begin to drip out of the hollow needle into a container.
After a small amount is collected, a syringe is attached to the needle in the back and
the medicine is slowly injected, causing a sensation of coldness or pressure down the
leg. The needle is then removed and the spot bandaged. The CSF is sent to the lab-
oratory to see if any cancer cells are present and to measure glucose and protein.
During spinals, Brent listens to rock and roll on his Walkman, but he
keeps the volume low enough so that he can still hear what is going on.
He likes me to lift up the earpiece and tell him when each part of the
procedure is finished and what’s coming next.
If your child or teen develops a persistent severe headache following the procedure
that lessens while he lies flat, but throbs when he sits up, notify your physician or
nurse. Keep your child lying flat, and offer high-caffeine beverages, such as Mountain
Dew. If these measures fail to give your child relief, an anesthesiologist sometimes
does a procedure called a “blood patch.” 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 it at the site of the prior spinal tap
where CSF may be slowly leaking from the canal into the tissues. If this is the cause of
the headache, the relief is immediate. This procedure is generally performed in the
recovery room, emergency room, clinic, or inpatient unit. You can stay with your
child during the procedure.
Platelet transfusions
Platelets are an important component of the 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 150,000/mm3 to 420,000/mm3. Chemotherapy can severely depress
the platelet count for some children. If a transfusion is not given when counts are
very low, uncontrollable bleeding can result. Many centers require a transfusion when
the child’s platelet count goes below 10,000 to 20,000/mm3, and sometimes repeat
transfusions are required every two or three days until the marrow recovers.
Platelet transfusions are a snap! Platelets are short-lived, and boosted
Matt’s counts for only a few days, just long enough to get over the danger
levels during chemo. He often needed them two to three times every cycle.
He had a reaction of hives on one occasion, cured with Bendadryl.
Ironically, that was one of the last times he needed platelets.
• • • • •
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.
As with other blood products, platelets are capable of transmitting infections: hepatitis,
cytomegalovirus, and HIV (the virus that causes AIDS). The chance of contracting
these infections, although small, is the reason that platelet transfusions are also given
only when absolutely necessary. Because uncontrollable bleeding can be life threaten-
ing, prevention is paramount. Platelet transfusions usually take less than an hour.
bleeding by repairing breaks in the walls of blood vessels. A normal platelet count for
a healthy child is 150,000/mm3 to 420,000/mm3. Chemotherapy can severely depress
the platelet count for some children. If a transfusion is not given when counts are
very low, uncontrollable bleeding can result. Many centers require a transfusion when
the child’s platelet count goes below 10,000 to 20,000/mm3, and sometimes repeat
transfusions are required every two or three days until the marrow recovers.
Platelet transfusions are a snap! Platelets are short-lived, and boosted
Matt’s counts for only a few days, just long enough to get over the danger
levels during chemo. He often needed them two to three times every cycle.
He had a reaction of hives on one occasion, cured with Bendadryl.
Ironically, that was one of the last times he needed platelets.
• • • • •
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.
As with other blood products, platelets are capable of transmitting infections: hepatitis,
cytomegalovirus, and HIV (the virus that causes AIDS). The chance of contracting
these infections, although small, is the reason that platelet transfusions are also given
only when absolutely necessary. Because uncontrollable bleeding can be life threaten-
ing, prevention is paramount. Platelet transfusions usually take less than an hour.
MUGA scan
A multiple-gated acquisition (MUGA) scan tests cardiac function. It is more sensitive
than an echocardiogram. Prior to having a MUGA scan, children are sometimes given
a sedative to help them relax and stay perfectly still for the fifteen- to twenty-minute
test. An injection of red cells or proteins tagged with a mildly radioactive substance
(called technetium) is given through an IV. The child lies on a table with a large
movable camera above. This special camera records sequential images of the tech-
netium as it moves through the heart. These pictures of the heart’s function allow
doctors to determine how efficiently the heart muscle is pumping and if any damage
to the heart has occurred.
My 3-year-old daughter had a MUGA scan before she started
chemotherapy. They gave her an injection, and she fell asleep. They laid
her on her back on a big table and moved a huge contraption around her
to take pictures of her heart beating. We watched on a screen, and they
printed out a copy on paper for the doctors.
If either the echocardiogram or MUGA scan shows heart damage, the oncologist may
reduce the dosage or remove the drug causing the damage from your child’s protocol.
than an echocardiogram. Prior to having a MUGA scan, children are sometimes given
a sedative to help them relax and stay perfectly still for the fifteen- to twenty-minute
test. An injection of red cells or proteins tagged with a mildly radioactive substance
(called technetium) is given through an IV. The child lies on a table with a large
movable camera above. This special camera records sequential images of the tech-
netium as it moves through the heart. These pictures of the heart’s function allow
doctors to determine how efficiently the heart muscle is pumping and if any damage
to the heart has occurred.
My 3-year-old daughter had a MUGA scan before she started
chemotherapy. They gave her an injection, and she fell asleep. They laid
her on her back on a big table and moved a huge contraption around her
to take pictures of her heart beating. We watched on a screen, and they
printed out a copy on paper for the doctors.
If either the echocardiogram or MUGA scan shows heart damage, the oncologist may
reduce the dosage or remove the drug causing the damage from your child’s protocol.
Finger pokes
Finger pokes are different from blood draws in several ways. First, EMLA can be used
successfully. Put a blob of EMLA on the tip of the middle finger. Cover the fingertip
with plastic wrap, and tape it on the finger. Another method is to buy long, thin
balloons with a diameter a bit wider than the child’s finger. Cut off the open end,
leaving only enough balloon to cover the finger up to the first knuckle. Fill the tip of
the balloon with EMLA and slide it on the fingertip. EMLA needs to be applied an
hour before a finger poke to be effective. At the laboratory, 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 the child is ready for a pain-free finger poke.
The technician will hold the finger and quickly stick it with a small sharp instrument.
Blood will be collected in narrow tubes or a small container. It is usually necessary for
the technician to squeeze the fingertip to get enough blood. If EMLA is not used, the
squeezing part is uncomfortable and the finger can ache for quite a while.
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.”
successfully. Put a blob of EMLA on the tip of the middle finger. Cover the fingertip
with plastic wrap, and tape it on the finger. Another method is to buy long, thin
balloons with a diameter a bit wider than the child’s finger. Cut off the open end,
leaving only enough balloon to cover the finger up to the first knuckle. Fill the tip of
the balloon with EMLA and slide it on the fingertip. EMLA needs to be applied an
hour before a finger poke to be effective. At the laboratory, 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 the child is ready for a pain-free finger poke.
The technician will hold the finger and quickly stick it with a small sharp instrument.
Blood will be collected in narrow tubes or a small container. It is usually necessary for
the technician to squeeze the fingertip to get enough blood. If EMLA is not used, the
squeezing part is uncomfortable and the finger can ache for quite a while.
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.”
Echocardiogram/EKG
Several drugs used to treat CNS tumors can damage the muscle of the heart, decreas-
ing its ability to contract effectively. Many protocols require a baseline echocardiogram
to measure the heart’s ability to pump before any chemotherapy drugs are given.
Echocardiograms are then given periodically during and after treatment to check for
heart muscle damage.
An echocardiogram uses ultrasound waves to measure the amount of blood that leaves
the heart each time it contracts. This percentage (blood ejected during a contraction
compared to blood in the heart when it is relaxed) is called the ejection fraction.
A technician, nurse, or doctor administers the echocardiogram. 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
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.
An EKG (electrocardiogram) measures the electrical impulses that the heart gener-
ates during the cardiac cycle. Prior to placing the electrodes, the technician will clean
the area with alcohol and will apply a cool gel under the electrodes. The test is per-
formed at the bedside, in the cardiologist’s office or in the cardiac clinic or lab. Your
child must lie quietly during the test and you may remain with him throughout the
procedure, which generally takes less than ten minutes. Your child will feel nothing
during the procedure other than the gel on the electrodes.
ing its ability to contract effectively. Many protocols require a baseline echocardiogram
to measure the heart’s ability to pump before any chemotherapy drugs are given.
Echocardiograms are then given periodically during and after treatment to check for
heart muscle damage.
An echocardiogram uses ultrasound waves to measure the amount of blood that leaves
the heart each time it contracts. This percentage (blood ejected during a contraction
compared to blood in the heart when it is relaxed) is called the ejection fraction.
A technician, nurse, or doctor administers the echocardiogram. 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
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.
An EKG (electrocardiogram) measures the electrical impulses that the heart gener-
ates during the cardiac cycle. Prior to placing the electrodes, the technician will clean
the area with alcohol and will apply a cool gel under the electrodes. The test is per-
formed at the bedside, in the cardiologist’s office or in the cardiac clinic or lab. Your
child must lie quietly during the test and you may remain with him throughout the
procedure, which generally takes less than ten minutes. Your child will feel nothing
during the procedure other than the gel on the electrodes.
Bone marrow aspiration
Protocols for children with leukemia require bone marrow aspirations, a process by
which bone marrow is sucked out with a needle. The purpose of the first, or diag-
nostic, bone marrow aspiration is to see what percentage of the cells in the marrow
are abnormal blasts. Then these cells are analyzed microscopically to determine
which type of leukemia is present. The next bone marrow aspiration occurs on day
seven or fourteen of treatment. At this time, it is important to determine how many
blasts are still present. This information helps the oncologists decide how intensive
treatment should be. For instance, if the marrow is still crowded with blasts, the
child might be described as a “slow responder,” who would require a more intensive
course of treatment.
Since the doctors knew that my daughter had leukemia from the blood
work, they did her first bone marrow while she was under anesthesia to
implant her Port-a-cath. This was a blessing as her marrow was packed
tight with blasts.
Most centers require additional bone marrow aspirations at the end of each phase of
treatment and at the end of maintenance (or postremission treatment, if your child
does not require the maintenance phase).
To obtain a sample of the bone marrow, doctors usually use 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 is placed face down on a table, sometimes on a pillow to elevate the hip.
The doctor will feel the site, then wipe it several times with an antiseptic to eliminate
any germs. Sterile paper may be placed around the site, and the doctor will wear
sterile gloves. Then an anesthetic (usually xylocaine) may be injected into the skin
and a small area of bone. This causes a burning and stinging sensation that passes
quickly. The physician usually rubs the area to allow the drug to fully anesthetize the
area. The physician then pushes a hollow needle (with a plug inside) through the skin
into the bone, withdraws the plug, and attaches a syringe. The liquid marrow is then
aspirated (sucked out) through the syringe. After a sample is obtained, the needle is
removed and a bandage is put on.
If the child or teen is not sedated, removing the marrow can be very painful. Here are
some descriptions from children and adult survivors 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. You know, it hurts so much that now they put the kids to sleep. Boy,
am I glad about that.
• • • • •
It feels like they are trying to suck thick Jell-O from inside the bone.
Brief but incredible pain.
• • • • •
I would become very anxious when they were cleaning my skin and
laying the towels down. Putting the needle in was a sharp, pressure kind
of pain. Drawing the marrow feels tingly, like they hit a nerve. I always
asked a nurse to hold my legs because I felt like my legs were going to
jump up off the table.
which bone marrow is sucked out with a needle. The purpose of the first, or diag-
nostic, bone marrow aspiration is to see what percentage of the cells in the marrow
are abnormal blasts. Then these cells are analyzed microscopically to determine
which type of leukemia is present. The next bone marrow aspiration occurs on day
seven or fourteen of treatment. At this time, it is important to determine how many
blasts are still present. This information helps the oncologists decide how intensive
treatment should be. For instance, if the marrow is still crowded with blasts, the
child might be described as a “slow responder,” who would require a more intensive
course of treatment.
Since the doctors knew that my daughter had leukemia from the blood
work, they did her first bone marrow while she was under anesthesia to
implant her Port-a-cath. This was a blessing as her marrow was packed
tight with blasts.
Most centers require additional bone marrow aspirations at the end of each phase of
treatment and at the end of maintenance (or postremission treatment, if your child
does not require the maintenance phase).
To obtain a sample of the bone marrow, doctors usually use 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 is placed face down on a table, sometimes on a pillow to elevate the hip.
The doctor will feel the site, then wipe it several times with an antiseptic to eliminate
any germs. Sterile paper may be placed around the site, and the doctor will wear
sterile gloves. Then an anesthetic (usually xylocaine) may be injected into the skin
and a small area of bone. This causes a burning and stinging sensation that passes
quickly. The physician usually rubs the area to allow the drug to fully anesthetize the
area. The physician then pushes a hollow needle (with a plug inside) through the skin
into the bone, withdraws the plug, and attaches a syringe. The liquid marrow is then
aspirated (sucked out) through the syringe. After a sample is obtained, the needle is
removed and a bandage is put on.
If the child or teen is not sedated, removing the marrow can be very painful. Here are
some descriptions from children and adult survivors 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. You know, it hurts so much that now they put the kids to sleep. Boy,
am I glad about that.
• • • • •
It feels like they are trying to suck thick Jell-O from inside the bone.
Brief but incredible pain.
• • • • •
I would become very anxious when they were cleaning my skin and
laying the towels down. Putting the needle in was a sharp, pressure kind
of pain. Drawing the marrow feels tingly, like they hit a nerve. I always
asked a nurse to hold my legs because I felt like my legs were going to
jump up off the table.
Blood transfusions
Treatment for leukemia can cause severe anemia (a low number of oxygen-carrying red
cells). The normal life of a red cell is three to four months and, as old cells die, the
diseased (or suppressed by treatment) marrow cannot replace them. Many children
require transfusions of red cells when first admitted and periodically throughout
treatment.
Whenever my son needed a transfusion, I brought along bags of
coloring books, food, and toys. The number of VCRs at the clinic was
limited, so I tried to make arrangements for one ahead of time. When
anemic (hematocrit below 20 percent), 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 approximately two to four hours to
administer and is given through an IV or catheter. If your child develops chills and/
or fever during a transfusion, the nurse should be notified so that the transfusion can
be stopped immediately.
There are some risks of infection from red cell transfusions. Since new tests have been
devised to detect the AIDS virus, the risk of exposure is minuscule, less than 1 in
450,000. Although there are excellent tests for the various types of hepatitis, exposure
to this disease is still possible (the risk is less than 1 in 4,000). Exposure to cyto-
megalovirus is also a concern. These 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 the smaller amount.
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 doctor.
cells). The normal life of a red cell is three to four months and, as old cells die, the
diseased (or suppressed by treatment) marrow cannot replace them. Many children
require transfusions of red cells when first admitted and periodically throughout
treatment.
Whenever my son needed a transfusion, I brought along bags of
coloring books, food, and toys. The number of VCRs at the clinic was
limited, so I tried to make arrangements for one ahead of time. When
anemic (hematocrit below 20 percent), 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 approximately two to four hours to
administer and is given through an IV or catheter. If your child develops chills and/
or fever during a transfusion, the nurse should be notified so that the transfusion can
be stopped immediately.
There are some risks of infection from red cell transfusions. Since new tests have been
devised to detect the AIDS virus, the risk of exposure is minuscule, less than 1 in
450,000. Although there are excellent tests for the various types of hepatitis, exposure
to this disease is still possible (the risk is less than 1 in 4,000). Exposure to cyto-
megalovirus is also a concern. These 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 the smaller amount.
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 doctor.
Blood draws
Frequent blood samples are a part of life during leukemia treatment. A complete blood
count (CBC) tells the physician how effective the drugs are and helps determine the
child’s susceptibility to infection. It is important to measure blood chemistries to
make sure that the liver and kidneys are not being damaged by treatment. (For a list
of normal blood counts, see Appendix B, Blood Counts and What They Mean.) During
induction and consolidation, transfusions are necessary when the red cell count or
platelet count gets too low.
Blood specimens are primarily used for three purposes: to obtain a 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 con-
tained in the blood plasma to determine if the liver and kidneys are functioning
properly. Blood cultures help evaluate whether the child is developing a bacterial or
fungal infection. If only a CBC is needed, a finger poke will provide enough blood.
Blood chemistries or cultures require one or more vials of blood obtained from a vein
in the arm or the right atrial catheter.
Blood is usually drawn from the large vein on the inside of the elbow using a proce-
dure similar to starting an IV, except that the needle is removed rather than left in the
arm. The advice for starting an IV also applies to drawing blood from the arm.
Children with catheters usually have blood drawn from the catheter rather than the
arm or finger. These procedures are described in Chapter 8, Venous Catheters.
count (CBC) tells the physician how effective the drugs are and helps determine the
child’s susceptibility to infection. It is important to measure blood chemistries to
make sure that the liver and kidneys are not being damaged by treatment. (For a list
of normal blood counts, see Appendix B, Blood Counts and What They Mean.) During
induction and consolidation, transfusions are necessary when the red cell count or
platelet count gets too low.
Blood specimens are primarily used for three purposes: to obtain a 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 con-
tained in the blood plasma to determine if the liver and kidneys are functioning
properly. Blood cultures help evaluate whether the child is developing a bacterial or
fungal infection. If only a CBC is needed, a finger poke will provide enough blood.
Blood chemistries or cultures require one or more vials of blood obtained from a vein
in the arm or the right atrial catheter.
Blood is usually drawn from the large vein on the inside of the elbow using a proce-
dure similar to starting an IV, except that the needle is removed rather than left in the
arm. The advice for starting an IV also applies to drawing blood from the arm.
Children with catheters usually have blood drawn from the catheter rather than the
arm or finger. These procedures are described in Chapter 8, Venous Catheters.
Procedures
Understanding what will occur during a procedure and what other parents do to pre
pare their children will arm you with essential information. Knowing what to expec
will lower the anxiety level of both you and your child and lay the foundation fo
years of tolerable tests. The descriptions of procedures in the rest of the chapter ma
not exactly mirror your experience. Practices vary by hospital and practitioner, and
this variability should be expected. What should be the same, however, is your com
fort in asking questions and getting the support and help you need to prepare for and
cope with your child’s procedures.
Questions to ask before procedures
You need information prior to procedures in order to prepare yourself and you
child. Some suggested questions to ask the physician are:
• Why is this procedure necessary and how will it affect my child’s treatment?
• What information will it provide?
• Who will perform the procedure?
• Will it be an inpatient or outpatient procedure?
• Please explain the procedure in detail.
• Is there any literature available that describes it?
• Is there a child life specialist on staff who will help prepare my child for the
procedure?
• If not, are there nurses, social workers, or parents who can come talk to
me about how to prepare my child?
• Is the procedure painful?
• How long will the procedure take?
• What type of anesthetic or sedation is used?
• What are the risks, if any?
• What are the common and rare side effects?
• When will we get the results?
pare their children will arm you with essential information. Knowing what to expec
will lower the anxiety level of both you and your child and lay the foundation fo
years of tolerable tests. The descriptions of procedures in the rest of the chapter ma
not exactly mirror your experience. Practices vary by hospital and practitioner, and
this variability should be expected. What should be the same, however, is your com
fort in asking questions and getting the support and help you need to prepare for and
cope with your child’s procedures.
Questions to ask before procedures
You need information prior to procedures in order to prepare yourself and you
child. Some suggested questions to ask the physician are:
• Why is this procedure necessary and how will it affect my child’s treatment?
• What information will it provide?
• Who will perform the procedure?
• Will it be an inpatient or outpatient procedure?
• Please explain the procedure in detail.
• Is there any literature available that describes it?
• Is there a child life specialist on staff who will help prepare my child for the
procedure?
• If not, are there nurses, social workers, or parents who can come talk to
me about how to prepare my child?
• Is the procedure painful?
• How long will the procedure take?
• What type of anesthetic or sedation is used?
• What are the risks, if any?
• What are the common and rare side effects?
• When will we get the results?
Pain management
The goal of pediatric pain management should be to minimize discomfort while
performing the procedure. The two methods to achieve this goal are psychological
(using the mind) and pharmacological (using drugs). These two methods can be used
together to provide an integrated mind/body approach.
Psychological method
Preparation for every procedure is essential. Unexpected stress is more difficult to
cope with than anticipated stress. If parents and children understand what is going to
happen, where it will happen, who will be there, and what it will feel like, they will
be less anxious and better able to cope. Methods to prepare children are:
• Verbally explain each step in the procedure.
• If possible, meet the person who will perform the procedure.
• Tour the room where the procedure will take place.
• Small children can “play” the procedure on dolls.
• Older children can observe a demonstration on a doll.
• Adolescents may observe a videotape describing the procedure.
• Encourage discussion and answer all questions.
For my child, playing about procedures helped release many feelings.
Parents can buy medical kits at the store or simply stock their own from
clinic castoffs and the pharmacy. We had IV bottles made from empty
shampoo containers, complete with tubing and plastic needles. Several
dolls had accessed ports, and many stuffed animals in our house fell apart
after being speared by the pen during countless spinal taps. Katy’s
younger sister even ran around sometimes with her own pretend port
taped onto her chest. Some suggestions for the child’s medical kit are:
gauze pads, tape, tubing, stethoscope, reflex hammer, pretend needles,
syringes, medical chart, and toy box. Of course, lots of dolls or stuffed
animal patients are required.
• • • • •
My daughter (3 years old) took an old stuffed animal to the clinic with
her. Having the nurse and doctor perform the procedure first on “Bear”
helped her immensely.
Hypnosis is a well-documented method for reducing discomfort during painful pro-
cedures. If performed by a qualified healthcare professional (psychologist, physician,
nurse, social worker, or child life specialist), hypnosis can help your child control
painful sensations, release anxiety, and diminish pain. The professional helps guide
children or teens into an altered state of consciousness that helps to focus or narrow
attention. To locate a qualified practitioner, visit the web page for the American
Society of Clinical Hypnosis at http://www.asch.net/find.htm or call (630) 980-4740.
Imagery is a way to deliberately create a mental image of sights, sounds, tastes, smells,
and feelings. It is an active process that helps children or teens feel as if they are actu-
ally entering the imagined place. Focusing on pleasant images allows the child to shift
attention from the pain. It can also allow the child to actually alter the experience of
pain, which simultaneously gives the child control and diminishes pain. Ask if the
hospital has someone to teach your child this very effective technique.
The following description of using imagery was written by Jennifer Rohloff when she
was 17 years old, and is reprinted from the Free to Be Yourself newsletter of Cancer
Services of Allen County, Indiana.
My Special Place
Many people had a special place when they were young—a special
place that they still remember. This place could be an area that has a
special meaning for them, or a place where they used to go when they
wanted to be alone. My special place location is over the rainbow.
I discovered this place when I was 12 years old, during a relaxation
session. These sessions were designed to reduce pain and stress brought
on by chemotherapy. This was a place that I could visualize in my mind
so that I could go there anytime that I wanted to—not only for pain,
but when I was happy, mad, or sad.
It is surrounded by sand and tall, fanning palm trees everywhere.
The blue sky is always clear, and the bright sun shines every day. It is
usually quiet because I am alone, but often I can hear the sounds of
birds flying by.
Every time I come to this place I like to lie down in the sand. As I lie
there, I can feel the gritty sand beneath me. Once in a while I get up and
go looking for seashells. I usually find some different shapes and sizes.
The ones I like the best are the ones that you can hear the sound of the
ocean in. After a while I get up and start to walk around. As I walk, I can
feel the breeze going right through me, and I can smell the salt water. It
reminds me of being at a beach in Florida. Whenever I start to feel sad
or alone or if I am in pain, I usually go jump in the water because it is
a soothing place for me. I like to float around in the water because it gives
me a refreshing feeling that nobody can hurt me here. I could stay in this
place all day because I do not worry about anything while I am here.
To me this place is like a home away from home. It is like heaven
because you can do anything you want to do here. Even though this place
may seem imaginary or like a fantasy world to some people, it is not to
me. I think it is real because it is a place where I can go and be myself.
Distraction can be used successfully with all age groups, but it should never be used
as a substitute for preparation. Babies can be distracted by colorful, moving objects.
Parents can help distract preschoolers by showing picture books or videos, telling
stories, singing songs, or blowing bubbles. Many youngsters are comforted by hug-
ging a favorite stuffed animal. School-age children can watch videos or TV, or listen
to music. Several institutions use interactive videos to help distract older children or
teens.
My daughter went through her therapy prior to the days when kids
were given any pain medications for procedures. She and I would make
up a schedule of songs for me to sing during the spinal tap or bone
marrow. I would stroke her skin and sing softly to her. She visibly relaxed,
and the staff found it soothing, as well. I’ll never forget the time that the
oncologist, nurse, and I were all quietly singing “Somewhere Over the
Rainbow” during the spinal tap.
Other adjuvant therapies that are used successfully to help deal with medical treat-
ments are relaxation, biofeedback, massage, acupuncture, and accupressure. Ask the
hospital’s child life specialist, psychologist, or nurse to discuss and practice different
methods of pain management with you and your child.
Pharmacological method
Most pediatric oncology clinics offer the choice of sedation and/or anesthesia for pain-
ful procedures or non-painful procedures that require that your child lie completely
still. If you find that your child is distressed by painful procedures (bone marrow aspir-
ation and spinal taps), it is reasonable to explore all available options for pain relief.
One father, a doctor just completing his anesthesia residency, explained:
That first bone marrow was horrible. To have my little 3-year-old
look up at me with tears in her eyes and ask, “What else are you going
to let them do to me, Daddy?” was just too much. It was the worst day
of my life.
His wife, a nurse, said:
We really made waves by insisting that Meagan be sedated for her
spinal taps and bone marrows. It was mostly a logistical problem, but
we held firm, and now it has become much more routine for many
other kids as well.
The ideal pain relief drug for children should be easy to administer, be predictable in
effect, provide adequate pain relief, have a short duration, and have minimal side
effects. There are three topical anesthetics in wide use for pediatric procedures. EMLA
cream is put on the skin one to two hours prior to the painful procedure. Numby
Stuff also uses a cream anesthetic, but a mild electrical current helps it penetrate the
skin in just a few minutes. Ethyl chloride spray is used immediately before the proce-
dure to anesthetize the surface of the skin. Additionally, lidocaine may be injected
under the skin to numb the skin and tissue under it. For more information, see
Chapter 10, Chemotherapy.
Drugs for sedation and/or general anesthesia are given intravenously. Some facilities
take the child into the operating room (OR) for the procedure; others use a preoper-
ating area or clinic sedation room and allow the parent to be present the entire time.
Drugs used for pediatric anesthesia during procedures include:
• Valium or Versed plus morphine or fentanyl. Valium and Versed are sedatives
that are used with pain relievers such as morphine or fentanyl. These drugs can
be given in the clinic, but the possibility of slowed breathing requires expert
monitoring and the availability of emergency equipment. The combination of a
sedative and a pain reliever will result in your child’s being awake but sedated.
The child may move or cry, but will not remember the procedure. Often, EMLA
or lidocaine is also used to ensure that the procedure is pain-free.
Joel was treated from ages 14 to 17. During his spinal taps he would
get Versed once he was positioned on the table. I would always sit at his
head and keep his shoulders forward while his head rested on my arm
(kind of a hug). As the versed took effect, he would look up at me with
huge eyes and give me a grin a mile wide, then he would say something
off the wall. He had to spend an hour flat after the LP. He’d be groggy
the whole time, constantly asking me what time it was and how soon
we could leave. He’d forget he asked and ask me again five minutes later.
This continued for the whole hour. Later, we’d laugh about it. He never
remembered anything from the LPs.
• Propofol. A milky liquid given by IV, propofol has rapid onset with a rapid
recovery. Administration and monitoring by an anesthesiologist (doctor who
specializes in giving anesthetics) are required. Propofol, a general anesthetic, will
cause your child to lose consciousness. At low doses, propofol prevents memory
of the procedure but may not relieve all pain, so it is often used with EMLA or
lidocaine.
Patrick (12 years old) hates the lack of control involved when having
a procedure and getting propofol. He attempts to regain some control by
verbally explaining to the doctors just exactly how he wants it done each
time. He has his own little routine—tells them jokes, sings “I Want to Be
Sedated” (you know, the Ramones song), etc. Patrick’s biggest problem is
the taste from the propofol. We have tried so many different things when
he wakes up to mask the taste—Skittles, gum, Gatorade. We now have
a supply of atomic fireballs. I give him one as soon as they bring him out
and he says that really helps cover the taste.
• Ketamine. Ketamine needs expert monitoring. It has a much longer recovery
time than the drugs listed above, and upon awakening, up to 30 percent of chil-
dren may become confused and/or hallucinate. For these reasons, ketamine is no
longer in wide use for pediatric sedation for procedures.
There are many types of drugs and several methods used to administer them, from
very temporary (ten minutes) mild sedation to full general anesthesia in the operat-
ing room. Discuss with your oncologist and anesthesiologist which method will work
best for your child.
Let’s face it, kids don’t care about blasts, lab work, or protocols, they
just want to know if they are going to be hurt again. I think that one of
our most important jobs is to advocate, strongly if necessary, for adequate
pain control. If the dose doesn’t work and the doctor just shrugs her
shoulders, say you want a different dosage or drug used. If you encounter
resistance, ask that an anesthesiologist be consulted. Remember that good
pain control and/or amnesia will make a big difference in your child’s
state of mind during treatment.
Emotions may run high after a difficult procedure. Rather than engage in a lengthy
dissection of what went wrong, schedule an appointment time with your physician
well in advance of the next scheduled procedure to air your concerns and problem-
solve.
Because children with leukemia are treated for years, some children build up a
tolerance for sedatives and pain relievers. Often, over time, doses may need to be
increased or drugs changed. If your child remembers the procedure, advocate for a
change in drug and/or dosage. It is reasonable to request that an anesthesiologist be
present to ensure adequate pain relief.
My job as an oral surgery assistant required me to be very familiar
with different types of sedation. From the first day of Stephan’s diagnosis,
I quietly insisted on versed for bone marrows and spinal taps. We have
been in treatment for two years, and they still fight me every time, saying
that it’s just not necessary. When I make the appointment I tell them we
want Stephan sedated, and then I call and remind them so that all will
go smoothly.All types of sedation require that your child not eat or drink for a number of hours
prior to the procedure. After the procedure, your child may eat or drink when she is
alert and able to swallow. Sedation can result in complications, primarily to the airway.
It is imperative that sedation be carried out under the care of trained, experienced
personnel and that the child be monitored until fully recovered from the anesthesia.
performing the procedure. The two methods to achieve this goal are psychological
(using the mind) and pharmacological (using drugs). These two methods can be used
together to provide an integrated mind/body approach.
Psychological method
Preparation for every procedure is essential. Unexpected stress is more difficult to
cope with than anticipated stress. If parents and children understand what is going to
happen, where it will happen, who will be there, and what it will feel like, they will
be less anxious and better able to cope. Methods to prepare children are:
• Verbally explain each step in the procedure.
• If possible, meet the person who will perform the procedure.
• Tour the room where the procedure will take place.
• Small children can “play” the procedure on dolls.
• Older children can observe a demonstration on a doll.
• Adolescents may observe a videotape describing the procedure.
• Encourage discussion and answer all questions.
For my child, playing about procedures helped release many feelings.
Parents can buy medical kits at the store or simply stock their own from
clinic castoffs and the pharmacy. We had IV bottles made from empty
shampoo containers, complete with tubing and plastic needles. Several
dolls had accessed ports, and many stuffed animals in our house fell apart
after being speared by the pen during countless spinal taps. Katy’s
younger sister even ran around sometimes with her own pretend port
taped onto her chest. Some suggestions for the child’s medical kit are:
gauze pads, tape, tubing, stethoscope, reflex hammer, pretend needles,
syringes, medical chart, and toy box. Of course, lots of dolls or stuffed
animal patients are required.
• • • • •
My daughter (3 years old) took an old stuffed animal to the clinic with
her. Having the nurse and doctor perform the procedure first on “Bear”
helped her immensely.
Hypnosis is a well-documented method for reducing discomfort during painful pro-
cedures. If performed by a qualified healthcare professional (psychologist, physician,
nurse, social worker, or child life specialist), hypnosis can help your child control
painful sensations, release anxiety, and diminish pain. The professional helps guide
children or teens into an altered state of consciousness that helps to focus or narrow
attention. To locate a qualified practitioner, visit the web page for the American
Society of Clinical Hypnosis at http://www.asch.net/find.htm or call (630) 980-4740.
Imagery is a way to deliberately create a mental image of sights, sounds, tastes, smells,
and feelings. It is an active process that helps children or teens feel as if they are actu-
ally entering the imagined place. Focusing on pleasant images allows the child to shift
attention from the pain. It can also allow the child to actually alter the experience of
pain, which simultaneously gives the child control and diminishes pain. Ask if the
hospital has someone to teach your child this very effective technique.
The following description of using imagery was written by Jennifer Rohloff when she
was 17 years old, and is reprinted from the Free to Be Yourself newsletter of Cancer
Services of Allen County, Indiana.
My Special Place
Many people had a special place when they were young—a special
place that they still remember. This place could be an area that has a
special meaning for them, or a place where they used to go when they
wanted to be alone. My special place location is over the rainbow.
I discovered this place when I was 12 years old, during a relaxation
session. These sessions were designed to reduce pain and stress brought
on by chemotherapy. This was a place that I could visualize in my mind
so that I could go there anytime that I wanted to—not only for pain,
but when I was happy, mad, or sad.
It is surrounded by sand and tall, fanning palm trees everywhere.
The blue sky is always clear, and the bright sun shines every day. It is
usually quiet because I am alone, but often I can hear the sounds of
birds flying by.
Every time I come to this place I like to lie down in the sand. As I lie
there, I can feel the gritty sand beneath me. Once in a while I get up and
go looking for seashells. I usually find some different shapes and sizes.
The ones I like the best are the ones that you can hear the sound of the
ocean in. After a while I get up and start to walk around. As I walk, I can
feel the breeze going right through me, and I can smell the salt water. It
reminds me of being at a beach in Florida. Whenever I start to feel sad
or alone or if I am in pain, I usually go jump in the water because it is
a soothing place for me. I like to float around in the water because it gives
me a refreshing feeling that nobody can hurt me here. I could stay in this
place all day because I do not worry about anything while I am here.
To me this place is like a home away from home. It is like heaven
because you can do anything you want to do here. Even though this place
may seem imaginary or like a fantasy world to some people, it is not to
me. I think it is real because it is a place where I can go and be myself.
Distraction can be used successfully with all age groups, but it should never be used
as a substitute for preparation. Babies can be distracted by colorful, moving objects.
Parents can help distract preschoolers by showing picture books or videos, telling
stories, singing songs, or blowing bubbles. Many youngsters are comforted by hug-
ging a favorite stuffed animal. School-age children can watch videos or TV, or listen
to music. Several institutions use interactive videos to help distract older children or
teens.
My daughter went through her therapy prior to the days when kids
were given any pain medications for procedures. She and I would make
up a schedule of songs for me to sing during the spinal tap or bone
marrow. I would stroke her skin and sing softly to her. She visibly relaxed,
and the staff found it soothing, as well. I’ll never forget the time that the
oncologist, nurse, and I were all quietly singing “Somewhere Over the
Rainbow” during the spinal tap.
Other adjuvant therapies that are used successfully to help deal with medical treat-
ments are relaxation, biofeedback, massage, acupuncture, and accupressure. Ask the
hospital’s child life specialist, psychologist, or nurse to discuss and practice different
methods of pain management with you and your child.
Pharmacological method
Most pediatric oncology clinics offer the choice of sedation and/or anesthesia for pain-
ful procedures or non-painful procedures that require that your child lie completely
still. If you find that your child is distressed by painful procedures (bone marrow aspir-
ation and spinal taps), it is reasonable to explore all available options for pain relief.
One father, a doctor just completing his anesthesia residency, explained:
That first bone marrow was horrible. To have my little 3-year-old
look up at me with tears in her eyes and ask, “What else are you going
to let them do to me, Daddy?” was just too much. It was the worst day
of my life.
His wife, a nurse, said:
We really made waves by insisting that Meagan be sedated for her
spinal taps and bone marrows. It was mostly a logistical problem, but
we held firm, and now it has become much more routine for many
other kids as well.
The ideal pain relief drug for children should be easy to administer, be predictable in
effect, provide adequate pain relief, have a short duration, and have minimal side
effects. There are three topical anesthetics in wide use for pediatric procedures. EMLA
cream is put on the skin one to two hours prior to the painful procedure. Numby
Stuff also uses a cream anesthetic, but a mild electrical current helps it penetrate the
skin in just a few minutes. Ethyl chloride spray is used immediately before the proce-
dure to anesthetize the surface of the skin. Additionally, lidocaine may be injected
under the skin to numb the skin and tissue under it. For more information, see
Chapter 10, Chemotherapy.
Drugs for sedation and/or general anesthesia are given intravenously. Some facilities
take the child into the operating room (OR) for the procedure; others use a preoper-
ating area or clinic sedation room and allow the parent to be present the entire time.
Drugs used for pediatric anesthesia during procedures include:
• Valium or Versed plus morphine or fentanyl. Valium and Versed are sedatives
that are used with pain relievers such as morphine or fentanyl. These drugs can
be given in the clinic, but the possibility of slowed breathing requires expert
monitoring and the availability of emergency equipment. The combination of a
sedative and a pain reliever will result in your child’s being awake but sedated.
The child may move or cry, but will not remember the procedure. Often, EMLA
or lidocaine is also used to ensure that the procedure is pain-free.
Joel was treated from ages 14 to 17. During his spinal taps he would
get Versed once he was positioned on the table. I would always sit at his
head and keep his shoulders forward while his head rested on my arm
(kind of a hug). As the versed took effect, he would look up at me with
huge eyes and give me a grin a mile wide, then he would say something
off the wall. He had to spend an hour flat after the LP. He’d be groggy
the whole time, constantly asking me what time it was and how soon
we could leave. He’d forget he asked and ask me again five minutes later.
This continued for the whole hour. Later, we’d laugh about it. He never
remembered anything from the LPs.
• Propofol. A milky liquid given by IV, propofol has rapid onset with a rapid
recovery. Administration and monitoring by an anesthesiologist (doctor who
specializes in giving anesthetics) are required. Propofol, a general anesthetic, will
cause your child to lose consciousness. At low doses, propofol prevents memory
of the procedure but may not relieve all pain, so it is often used with EMLA or
lidocaine.
Patrick (12 years old) hates the lack of control involved when having
a procedure and getting propofol. He attempts to regain some control by
verbally explaining to the doctors just exactly how he wants it done each
time. He has his own little routine—tells them jokes, sings “I Want to Be
Sedated” (you know, the Ramones song), etc. Patrick’s biggest problem is
the taste from the propofol. We have tried so many different things when
he wakes up to mask the taste—Skittles, gum, Gatorade. We now have
a supply of atomic fireballs. I give him one as soon as they bring him out
and he says that really helps cover the taste.
• Ketamine. Ketamine needs expert monitoring. It has a much longer recovery
time than the drugs listed above, and upon awakening, up to 30 percent of chil-
dren may become confused and/or hallucinate. For these reasons, ketamine is no
longer in wide use for pediatric sedation for procedures.
There are many types of drugs and several methods used to administer them, from
very temporary (ten minutes) mild sedation to full general anesthesia in the operat-
ing room. Discuss with your oncologist and anesthesiologist which method will work
best for your child.
Let’s face it, kids don’t care about blasts, lab work, or protocols, they
just want to know if they are going to be hurt again. I think that one of
our most important jobs is to advocate, strongly if necessary, for adequate
pain control. If the dose doesn’t work and the doctor just shrugs her
shoulders, say you want a different dosage or drug used. If you encounter
resistance, ask that an anesthesiologist be consulted. Remember that good
pain control and/or amnesia will make a big difference in your child’s
state of mind during treatment.
Emotions may run high after a difficult procedure. Rather than engage in a lengthy
dissection of what went wrong, schedule an appointment time with your physician
well in advance of the next scheduled procedure to air your concerns and problem-
solve.
Because children with leukemia are treated for years, some children build up a
tolerance for sedatives and pain relievers. Often, over time, doses may need to be
increased or drugs changed. If your child remembers the procedure, advocate for a
change in drug and/or dosage. It is reasonable to request that an anesthesiologist be
present to ensure adequate pain relief.
My job as an oral surgery assistant required me to be very familiar
with different types of sedation. From the first day of Stephan’s diagnosis,
I quietly insisted on versed for bone marrows and spinal taps. We have
been in treatment for two years, and they still fight me every time, saying
that it’s just not necessary. When I make the appointment I tell them we
want Stephan sedated, and then I call and remind them so that all will
go smoothly.All types of sedation require that your child not eat or drink for a number of hours
prior to the procedure. After the procedure, your child may eat or drink when she is
alert and able to swallow. Sedation can result in complications, primarily to the airway.
It is imperative that sedation be carried out under the care of trained, experienced
personnel and that the child be monitored until fully recovered from the anesthesia.
CHAPTER 3 Coping with Procedures
Mommy, I didn’t cry but my eyes got bright.
—Four-year-old with ALL
THE PURPOSE OF THIS CHAPTER IS TO PREPARE both child and parent for several common
procedures by providing detailed descriptions of each. Since almost all procedures are
repeated frequently during the long treatment for childhood leukemia, it is important
to establish a routine that is comfortable for you and your child. The procedure itself
may cause discomfort, but a well-prepared, calm child fares far better than a fright-
ened one.
Planning for procedures
Procedures are needed to make diagnoses, check for spread of disease, give treat-
ment, and monitor response to treatment. Interventions range from figuring out the
best way for your child to take numerous pills to having multiple spinal taps. Some
procedures are pain-free, and the family merely needs clear explanations about what
to expect. Other procedures can cause both physical and psychological distress. These
reactions can be avoided or minimized by preparation, appropriate medications, and
good coping skills.
A family-centered approach works best when planning and implementing proce-
dures. The procedures are often as frightening, or more frightening, for parents as for
children. Memories of them can be long lasting. For this reason, children, parents,
and staff should work together to plan for and cope with procedures.
As soon as possible after your child’s diagnosis, find out if the hospital has a child life
program or other team (nurses, psychologists, social workers) that helps prepare
families for procedures. The American Academy of Pediatrics issued a policy state-
ment calling child life programs the standard of care for hospitalized children. You
can find the policy at http://www.aap.org/policy/re9922.html.
The purpose of these programs is to minimize psychological trauma, promote optimal
development, and to maintain, as much as possible, normal living patterns during
hospitalizations. They attempt to minimize the child’s stress by giving him develop-
mentally appropriate explanations of the reasons for procedures and hospital routines.
Matthew was in sixth grade when he was diagnosed, and he was
worried about the surgery for implanting the port. He didn’t know
what the scar would look like and he was concerned about AIDS,
because it had been in the news a lot that year. The child life worker
came in and really helped. She showed him what a port looked like;
then they explored the pre-op area, the actual surgery room, and post-
op. She showed him on a cloth doll exactly where the incision would be
and how the scar would look. Then she introduced him to “Fred,” the
IV pump. She said that Fred would be going places with him, and that
Fred would keep him from getting so many pokes. She told Matthew
that he could bring something from home to hang on Fred. Of course,
he brought in a really ugly stuffed animal. Throughout treatment, she
really helped his fears and my feelings about losing control over my
child’s daily life.
Child life specialists or other team members accompany children to and provide
support during procedures. They establish relationships with children based on
warmth, respect, empathy, and understanding of developmental stages. They also
communicate with the other members of the healthcare team about the psychosocial
needs of children and their families.
Your response as well as your child’s depends on temperament, age, previous medical
or dental experiences, and other factors. Discuss with the child life professional or
social worker when and how to prepare for upcoming procedures. Usually, parents
need to experiment with how much advance notice to give younger children about
procedures. Some children do better with several days to prepare, while others worry
themselves sick. Sometimes, needs change over the years of treatment, so good com-
munication and flexibility are essential.
I started giving my 4-year-old daughter two days’ notice before
procedures. But she began to wake up every day worried that
“something bad was going to happen soon.” So we talked it over and
decided to look at the calendar together every Sunday to review what
would happen that week. She was a much happier child after that.
Although it may not always be possible, try to schedule procedures so that the same
person does the same procedure each time. Call ahead to check for unexpected
changes to prevent any surprises. Repetition can provide comfort and reassurance to
children.
Parents can ask for the medical professional with the most experience to perform pro-
cedures, such as spinal taps. In the hospital hierarchy, attending physicians are above
fellows and residents. However, at some large teaching facilities, attending physicians
may not do these procedures very often. Many times, the fellow (and in some states
where it is allowed, the nurse practioner) is more skilled, because they do the vast
majority of these procedures.
Katy and I wrote down her requests for each procedure that first week
in the hospital. For example, during spinal taps she wanted me (not a
nurse) to hold her in position; she wanted xylocaine to be given with
a needle, not with the pneumatic gun; and she had a rigid sequence of
songs that I sang.
Parents should have a choice whether to be present or not during a medical proce-
dure. If your child does better if you are not in the room, ask the child life specialist
or another member of the healthcare team to be present solely to comfort your child.
Your job as a parent during the procedure should be one of support and positive
distraction—not of restraint or inflicting discomfort. The best place to position your-
self is at your child’s head, at eye level and out of the field of the procedure. Speak
calmly and supportively to your child. You can tell stories or read a favorite book. It
helps to praise your child for good behavior, but don’t reprimand or demean your
child if problems occur.
We decided from the very beginning that, even though it’s no fun
to have a bone marrow or a spinal, we were going to make something
positive out of it. So we made it a party. We’d bring pizza, popcorn,
or ice cream to the hospital. We helped Kristin think of the nurses as
her friends. We’d celebrate after a procedure by going out to eat at
one of the neat little restaurants near the hospital.
Oncology clinics usually have a special box full of toys for children who have had a
procedure. It sometimes helps for the child to have a treat to look forward to after-
ward. Some parents occasionally bring a special gift to sneak into the box for their
child to find.
If given the chance, children have definite opinions about how they like things to go
at the clinic. For instance, Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My
First Choice describes a list of rules for clinical personnel written by then 7-year-old
Catherine Krumme in the car on the way to the hospital:
1. Must have a good sense of humor.
2. Must always do a good lumbar puncture (LP) and bone marrow.
3. Must always remember the toy box.
4. Must tell the truth.
5. Must like people.
6. Must like junk food.
7. Must know a lot about chemotherapy.
8. Must not mind the sight of blood.
9. Must like bald heads.
10. Must never be grumpy.
—Four-year-old with ALL
THE PURPOSE OF THIS CHAPTER IS TO PREPARE both child and parent for several common
procedures by providing detailed descriptions of each. Since almost all procedures are
repeated frequently during the long treatment for childhood leukemia, it is important
to establish a routine that is comfortable for you and your child. The procedure itself
may cause discomfort, but a well-prepared, calm child fares far better than a fright-
ened one.
Planning for procedures
Procedures are needed to make diagnoses, check for spread of disease, give treat-
ment, and monitor response to treatment. Interventions range from figuring out the
best way for your child to take numerous pills to having multiple spinal taps. Some
procedures are pain-free, and the family merely needs clear explanations about what
to expect. Other procedures can cause both physical and psychological distress. These
reactions can be avoided or minimized by preparation, appropriate medications, and
good coping skills.
A family-centered approach works best when planning and implementing proce-
dures. The procedures are often as frightening, or more frightening, for parents as for
children. Memories of them can be long lasting. For this reason, children, parents,
and staff should work together to plan for and cope with procedures.
As soon as possible after your child’s diagnosis, find out if the hospital has a child life
program or other team (nurses, psychologists, social workers) that helps prepare
families for procedures. The American Academy of Pediatrics issued a policy state-
ment calling child life programs the standard of care for hospitalized children. You
can find the policy at http://www.aap.org/policy/re9922.html.
The purpose of these programs is to minimize psychological trauma, promote optimal
development, and to maintain, as much as possible, normal living patterns during
hospitalizations. They attempt to minimize the child’s stress by giving him develop-
mentally appropriate explanations of the reasons for procedures and hospital routines.
Matthew was in sixth grade when he was diagnosed, and he was
worried about the surgery for implanting the port. He didn’t know
what the scar would look like and he was concerned about AIDS,
because it had been in the news a lot that year. The child life worker
came in and really helped. She showed him what a port looked like;
then they explored the pre-op area, the actual surgery room, and post-
op. She showed him on a cloth doll exactly where the incision would be
and how the scar would look. Then she introduced him to “Fred,” the
IV pump. She said that Fred would be going places with him, and that
Fred would keep him from getting so many pokes. She told Matthew
that he could bring something from home to hang on Fred. Of course,
he brought in a really ugly stuffed animal. Throughout treatment, she
really helped his fears and my feelings about losing control over my
child’s daily life.
Child life specialists or other team members accompany children to and provide
support during procedures. They establish relationships with children based on
warmth, respect, empathy, and understanding of developmental stages. They also
communicate with the other members of the healthcare team about the psychosocial
needs of children and their families.
Your response as well as your child’s depends on temperament, age, previous medical
or dental experiences, and other factors. Discuss with the child life professional or
social worker when and how to prepare for upcoming procedures. Usually, parents
need to experiment with how much advance notice to give younger children about
procedures. Some children do better with several days to prepare, while others worry
themselves sick. Sometimes, needs change over the years of treatment, so good com-
munication and flexibility are essential.
I started giving my 4-year-old daughter two days’ notice before
procedures. But she began to wake up every day worried that
“something bad was going to happen soon.” So we talked it over and
decided to look at the calendar together every Sunday to review what
would happen that week. She was a much happier child after that.
Although it may not always be possible, try to schedule procedures so that the same
person does the same procedure each time. Call ahead to check for unexpected
changes to prevent any surprises. Repetition can provide comfort and reassurance to
children.
Parents can ask for the medical professional with the most experience to perform pro-
cedures, such as spinal taps. In the hospital hierarchy, attending physicians are above
fellows and residents. However, at some large teaching facilities, attending physicians
may not do these procedures very often. Many times, the fellow (and in some states
where it is allowed, the nurse practioner) is more skilled, because they do the vast
majority of these procedures.
Katy and I wrote down her requests for each procedure that first week
in the hospital. For example, during spinal taps she wanted me (not a
nurse) to hold her in position; she wanted xylocaine to be given with
a needle, not with the pneumatic gun; and she had a rigid sequence of
songs that I sang.
Parents should have a choice whether to be present or not during a medical proce-
dure. If your child does better if you are not in the room, ask the child life specialist
or another member of the healthcare team to be present solely to comfort your child.
Your job as a parent during the procedure should be one of support and positive
distraction—not of restraint or inflicting discomfort. The best place to position your-
self is at your child’s head, at eye level and out of the field of the procedure. Speak
calmly and supportively to your child. You can tell stories or read a favorite book. It
helps to praise your child for good behavior, but don’t reprimand or demean your
child if problems occur.
We decided from the very beginning that, even though it’s no fun
to have a bone marrow or a spinal, we were going to make something
positive out of it. So we made it a party. We’d bring pizza, popcorn,
or ice cream to the hospital. We helped Kristin think of the nurses as
her friends. We’d celebrate after a procedure by going out to eat at
one of the neat little restaurants near the hospital.
Oncology clinics usually have a special box full of toys for children who have had a
procedure. It sometimes helps for the child to have a treat to look forward to after-
ward. Some parents occasionally bring a special gift to sneak into the box for their
child to find.
If given the chance, children have definite opinions about how they like things to go
at the clinic. For instance, Having Leukemia Isn’t So Bad. Of Course It Wouldn’t Be My
First Choice describes a list of rules for clinical personnel written by then 7-year-old
Catherine Krumme in the car on the way to the hospital:
1. Must have a good sense of humor.
2. Must always do a good lumbar puncture (LP) and bone marrow.
3. Must always remember the toy box.
4. Must tell the truth.
5. Must like people.
6. Must like junk food.
7. Must know a lot about chemotherapy.
8. Must not mind the sight of blood.
9. Must like bald heads.
10. Must never be grumpy.
What to tell your child
Children need to be told that they are seriously ill, that they will be spending some
time in the hospital, that the treatment will last for a long time and is sometimes
painful, that the treatments are usually successful, and that the doctors and nurses
are experts and will provide the very best care available. Depending on the child’s
age, this could vary from saying, “Part of your blood is sick and we need to go to the
hospital for medicine to make it better,” to reading books together and answering
hundreds of questions. The name of the disease should be used. Even if children do
not hear this from their parents or the treatment team, they will probably hear it from
another child.
My daughter Kathleen Rea knew she had cancer when she was 3.
She knew that her motor oil wasn’t running her engine right—but she
called it cancer.
Young children need to be reassured that they did nothing to cause the disease. It is
important that they understand the disease is not contagious and they cannot give it
to their siblings or friends. They need to have procedures described realistically, so
that they can trust their parents and medical team.
My 4-year-old daughter told me very sadly one day, “I wish that I
hadn’t fallen down and broken inside. That’s how the leukemia started.”
We had explained many times that nothing she did, or we did, caused the
leukemia, but she persisted in thinking that falling down did it. She also
worried that if she went to her friend Krista’s house to play that Krista
would catch leukemia.
Children should understand that it is expected they will have many questions
throughout their treatment, and they should be assured that their questions will
receive honest answers. Parents need to let their children know that being frightened
or upset is normal, indeed is felt by parents and children alike. Gentle and honest
communication is essential for the child to feel loved, supported, and encouraged.
When I told Christine (3 years old) that she had a disease in her blood,
her first concern was that I might leave. Over the years, I have repeated
many times that I would always be with her, and that I would make sure
that there were never any surprises. (This is difficult sometimes in the
hospital setting, but it can be done.) She is very artistic and wanted me to
draw a picture of the cells that were a problem. We drew lots of pictures of
white cells being carried off by chemo drugs to be “fixed.” Although many
of the other parents successfully used images of good cells killing off bad
cells, I thought that would upset my extremely gentle daughter. So we
imagined, drew pictures, and talked about chemo turning problem cells
into helpful cells.
Barbara Sourkes, PhD, explains the importance of first understanding the child’s
question prior to responding:
Coping with the trauma of illness can be facilitated by a cognitive
understanding of the disease and its treatment. For this reason, the
presentation of accurate information in developmentally meaningful
terms is crucial. A general guideline is to follow the child’s lead: he or she
questions facts or implications only when ready, and that readiness must
be respected. It is the adult’s responsibility to clarify the precise intent of
any question and then to proceed with a step-by-step response, thereby
granting the child options at each juncture. He or she may choose to
continue listening, to ask for clarification, or to terminate the discussion.
Offering less information with the explicit invitation to ask for more
affords a safety gauge of control for the child. When these guidelines are
not followed, serious miscommunications may ensue. For example, an
adult who hears “What is going to happen to me?” and does not clarify
the intent of the query may launch into a long statement of plans or
elaborate reassurances. The child may respond with irritation, “I only
wanted to know what tests I am going to have tomorrow.”
time in the hospital, that the treatment will last for a long time and is sometimes
painful, that the treatments are usually successful, and that the doctors and nurses
are experts and will provide the very best care available. Depending on the child’s
age, this could vary from saying, “Part of your blood is sick and we need to go to the
hospital for medicine to make it better,” to reading books together and answering
hundreds of questions. The name of the disease should be used. Even if children do
not hear this from their parents or the treatment team, they will probably hear it from
another child.
My daughter Kathleen Rea knew she had cancer when she was 3.
She knew that her motor oil wasn’t running her engine right—but she
called it cancer.
Young children need to be reassured that they did nothing to cause the disease. It is
important that they understand the disease is not contagious and they cannot give it
to their siblings or friends. They need to have procedures described realistically, so
that they can trust their parents and medical team.
My 4-year-old daughter told me very sadly one day, “I wish that I
hadn’t fallen down and broken inside. That’s how the leukemia started.”
We had explained many times that nothing she did, or we did, caused the
leukemia, but she persisted in thinking that falling down did it. She also
worried that if she went to her friend Krista’s house to play that Krista
would catch leukemia.
Children should understand that it is expected they will have many questions
throughout their treatment, and they should be assured that their questions will
receive honest answers. Parents need to let their children know that being frightened
or upset is normal, indeed is felt by parents and children alike. Gentle and honest
communication is essential for the child to feel loved, supported, and encouraged.
When I told Christine (3 years old) that she had a disease in her blood,
her first concern was that I might leave. Over the years, I have repeated
many times that I would always be with her, and that I would make sure
that there were never any surprises. (This is difficult sometimes in the
hospital setting, but it can be done.) She is very artistic and wanted me to
draw a picture of the cells that were a problem. We drew lots of pictures of
white cells being carried off by chemo drugs to be “fixed.” Although many
of the other parents successfully used images of good cells killing off bad
cells, I thought that would upset my extremely gentle daughter. So we
imagined, drew pictures, and talked about chemo turning problem cells
into helpful cells.
Barbara Sourkes, PhD, explains the importance of first understanding the child’s
question prior to responding:
Coping with the trauma of illness can be facilitated by a cognitive
understanding of the disease and its treatment. For this reason, the
presentation of accurate information in developmentally meaningful
terms is crucial. A general guideline is to follow the child’s lead: he or she
questions facts or implications only when ready, and that readiness must
be respected. It is the adult’s responsibility to clarify the precise intent of
any question and then to proceed with a step-by-step response, thereby
granting the child options at each juncture. He or she may choose to
continue listening, to ask for clarification, or to terminate the discussion.
Offering less information with the explicit invitation to ask for more
affords a safety gauge of control for the child. When these guidelines are
not followed, serious miscommunications may ensue. For example, an
adult who hears “What is going to happen to me?” and does not clarify
the intent of the query may launch into a long statement of plans or
elaborate reassurances. The child may respond with irritation, “I only
wanted to know what tests I am going to have tomorrow.”
Telling your child
In the first harrowing days after a diagnosis of leukemia, parents must decide when
and what to tell their children. Because parents are coping with a bewildering array
of emotions themselves, sharing information and providing reassurance and hope
may be difficult. In the past, shielding children from the painful reality was the norm.
Most experts now agree that children feel less anxiety and cope with treatments
better if they have a clear understanding of the disease. It is important to provide
age-appropriate information soon after diagnosis and to create a supportive climate
so that children feel comfortable asking questions of both parents and the medical
team. Sharing strengthens the family, allowing all members to face the crisis together.
When to tell your child
You should tell your child as soon as possible after diagnosis. It is impossible to
prevent a child from knowing that he is seriously ill. The child has been whisked to an
unfamiliar hospital by frightened parents, endured painful tests, and received drugs
and transfusions. Cards and presents begin to arrive, and friends and siblings are
absent or behave in a strange manner. The child may meet other children with a
variety of physical problems at the hospital.
Delay in providing age-appropriate information escalates the child’s fears. Well-
meaning parents may cause great anguish by isolating their child in a conspiracy of
silence. Parents may delude themselves into thinking that the diagnosis is a secret,
but children are extraordinarily perceptive. They frequently keep their thoughts and
feelings to themselves in order to protect their parents from more pain. In this case,
not only must the child deal with having cancer, but he must do it on his own with
no one to console him. Lacking accurate information, children can imagine scenarios
far more frightening than the reality.
We feel that you have to be very honest or the child will not be able to
trust you. Meagan (5 years old) has always known that she has cancer
and thinks of her treatments and medications as the warriors to help the
good cells fight the bad cells.
Who should tell your child
This is purely a personal decision, influenced by ease of communication within the
family, age and temperament of the child, religious beliefs, and sometimes physician
recommendation. Young children (ages 1 to 3) primarily fear separation from parents.
The presence of strangers in an already unfamiliar situation may cause additional fear.
Many parents tell their small child in private, while others prefer to have a family
physician, oncologist, social worker, clergy, or other family members present.
Older children (4 to 12) sometimes benefit from having the treatment team (oncolo-
gist, nurse, social worker, or psychologist) present. This may create a feeling that all
present will unite to help the child get well. Staff members can answer the child’s
questions and provide comfort for the entire family. Children in this age group
frequently feel guilty and responsible for their illness. They may harbor fears that the
cancer is a punishment for something that they did wrong. Social workers and nurses
can help explore unspoken questions, provide reassurance, and identify the needs of
parents, the sick child, and siblings.
My 6-year-old son Brent was sitting next to me when the doctor called
to tell me that he had leukemia. I whispered into the phone, “What should
I tell him?” The doctor said to tell him that he had a disease in his blood
and needed to go to a special children’s hospital for help. As we were
getting ready to go to the hospital, Brent asked if he had AIDS (it was
right after Magic Johnson’s announcement), if he was going to die, what
were they going to do to him. We didn’t know how to answer all the
questions, but told him that we would find out at the hospital. My
husband told him that he was a strong boy and we would all fight this
thing together. I was at a loss for words.
At the hospital, they were wonderful. What impressed me the most was
that they always talked to Brent first, and answered all his questions
before talking to us. When Zac (Brent’s 8-year-old brother) came to the
hospital two days later, the doctors took him in the hall and talked to him
for a long time, explaining and answering his questions.
I was glad that we were all so honest, because Brent later confided to
me that he had first thought he got leukemia because he hadn’t been
drinking enough milk.
Adolescents’ need for control and autonomy should be respected. Teenagers some-
times feel more comfortable discussing the diagnosis with their physician in private.
At a time when teens’ developmental tasks include becoming independent from their
families, they are suddenly totally dependent on medical personnel to save their lives
and on parents to provide emotional support. In some families, a diagnosis of cancer
can create an unwelcome dependence on parents and can add new stress to the
already turbulent teen years. Other families report that leukemia helped to forge
closer bonds between teenagers and their parents.
When my daughter went into the hospital to get the mediastinal mass
diagnosis done, I told her doctor if she got a bad report that I wanted
him to tell her father and me and not give her any such news. Her
doctor, who I really didn’t know before this encounter, informed me that
she was 15 years old and would be the one dealing with cancer and
it was very necessary that she be told everything and that nothing be
kept from her. I thought that was so mean of him, but I liked him and
had never shown any disrespect for a doctor before, so I decided since
he had dealt with kids with cancer before and I hadn’t that he must know
something I didn’t know. He did! There have been so many times I have
been so thankful that he had the wisdom to tell me that right off the bat.
My daughter has continually told me over the years if the doctor had
not always talked with her in our presence, she would have felt like she
was dying.
Children and teens react to the diagnosis of cancer with a wide range of emotions, as
do their parents. They may lapse into denial, feel tremendous anger or rage, or be
extremely optimistic. As treatment progresses, children and parents will experience a
variety of emotions..
We’ve really marveled as we watch Joseph go through the stages of
coping with all of this just as an adult might. First of all, when he was
diagnosed in April, he was terrified. Then in May and June he was
alternately angry and depressed. When we talked to him seriously during
that time about the need to work with the doctors and nurses against the
cancer no matter how scary the things were that they asked him to do, he
looked us right in the eye and screamed, “I’m on the cancer’s side!” Then
over the course of a few weeks he seemed to calm down and made the
decision to fight it, to cooperate with all the caregivers as well as he
possibly could and to live as normal a life as he could. It’s hard to believe
that someone could do that at 4 years old, but he did it. By his fifth
birthday on July 26th, he’d made the transition to where he is now:
hopeful and committed to “killing the cancer.”
and what to tell their children. Because parents are coping with a bewildering array
of emotions themselves, sharing information and providing reassurance and hope
may be difficult. In the past, shielding children from the painful reality was the norm.
Most experts now agree that children feel less anxiety and cope with treatments
better if they have a clear understanding of the disease. It is important to provide
age-appropriate information soon after diagnosis and to create a supportive climate
so that children feel comfortable asking questions of both parents and the medical
team. Sharing strengthens the family, allowing all members to face the crisis together.
When to tell your child
You should tell your child as soon as possible after diagnosis. It is impossible to
prevent a child from knowing that he is seriously ill. The child has been whisked to an
unfamiliar hospital by frightened parents, endured painful tests, and received drugs
and transfusions. Cards and presents begin to arrive, and friends and siblings are
absent or behave in a strange manner. The child may meet other children with a
variety of physical problems at the hospital.
Delay in providing age-appropriate information escalates the child’s fears. Well-
meaning parents may cause great anguish by isolating their child in a conspiracy of
silence. Parents may delude themselves into thinking that the diagnosis is a secret,
but children are extraordinarily perceptive. They frequently keep their thoughts and
feelings to themselves in order to protect their parents from more pain. In this case,
not only must the child deal with having cancer, but he must do it on his own with
no one to console him. Lacking accurate information, children can imagine scenarios
far more frightening than the reality.
We feel that you have to be very honest or the child will not be able to
trust you. Meagan (5 years old) has always known that she has cancer
and thinks of her treatments and medications as the warriors to help the
good cells fight the bad cells.
Who should tell your child
This is purely a personal decision, influenced by ease of communication within the
family, age and temperament of the child, religious beliefs, and sometimes physician
recommendation. Young children (ages 1 to 3) primarily fear separation from parents.
The presence of strangers in an already unfamiliar situation may cause additional fear.
Many parents tell their small child in private, while others prefer to have a family
physician, oncologist, social worker, clergy, or other family members present.
Older children (4 to 12) sometimes benefit from having the treatment team (oncolo-
gist, nurse, social worker, or psychologist) present. This may create a feeling that all
present will unite to help the child get well. Staff members can answer the child’s
questions and provide comfort for the entire family. Children in this age group
frequently feel guilty and responsible for their illness. They may harbor fears that the
cancer is a punishment for something that they did wrong. Social workers and nurses
can help explore unspoken questions, provide reassurance, and identify the needs of
parents, the sick child, and siblings.
My 6-year-old son Brent was sitting next to me when the doctor called
to tell me that he had leukemia. I whispered into the phone, “What should
I tell him?” The doctor said to tell him that he had a disease in his blood
and needed to go to a special children’s hospital for help. As we were
getting ready to go to the hospital, Brent asked if he had AIDS (it was
right after Magic Johnson’s announcement), if he was going to die, what
were they going to do to him. We didn’t know how to answer all the
questions, but told him that we would find out at the hospital. My
husband told him that he was a strong boy and we would all fight this
thing together. I was at a loss for words.
At the hospital, they were wonderful. What impressed me the most was
that they always talked to Brent first, and answered all his questions
before talking to us. When Zac (Brent’s 8-year-old brother) came to the
hospital two days later, the doctors took him in the hall and talked to him
for a long time, explaining and answering his questions.
I was glad that we were all so honest, because Brent later confided to
me that he had first thought he got leukemia because he hadn’t been
drinking enough milk.
Adolescents’ need for control and autonomy should be respected. Teenagers some-
times feel more comfortable discussing the diagnosis with their physician in private.
At a time when teens’ developmental tasks include becoming independent from their
families, they are suddenly totally dependent on medical personnel to save their lives
and on parents to provide emotional support. In some families, a diagnosis of cancer
can create an unwelcome dependence on parents and can add new stress to the
already turbulent teen years. Other families report that leukemia helped to forge
closer bonds between teenagers and their parents.
When my daughter went into the hospital to get the mediastinal mass
diagnosis done, I told her doctor if she got a bad report that I wanted
him to tell her father and me and not give her any such news. Her
doctor, who I really didn’t know before this encounter, informed me that
she was 15 years old and would be the one dealing with cancer and
it was very necessary that she be told everything and that nothing be
kept from her. I thought that was so mean of him, but I liked him and
had never shown any disrespect for a doctor before, so I decided since
he had dealt with kids with cancer before and I hadn’t that he must know
something I didn’t know. He did! There have been so many times I have
been so thankful that he had the wisdom to tell me that right off the bat.
My daughter has continually told me over the years if the doctor had
not always talked with her in our presence, she would have felt like she
was dying.
Children and teens react to the diagnosis of cancer with a wide range of emotions, as
do their parents. They may lapse into denial, feel tremendous anger or rage, or be
extremely optimistic. As treatment progresses, children and parents will experience a
variety of emotions..
We’ve really marveled as we watch Joseph go through the stages of
coping with all of this just as an adult might. First of all, when he was
diagnosed in April, he was terrified. Then in May and June he was
alternately angry and depressed. When we talked to him seriously during
that time about the need to work with the doctors and nurses against the
cancer no matter how scary the things were that they asked him to do, he
looked us right in the eye and screamed, “I’m on the cancer’s side!” Then
over the course of a few weeks he seemed to calm down and made the
decision to fight it, to cooperate with all the caregivers as well as he
possibly could and to live as normal a life as he could. It’s hard to believe
that someone could do that at 4 years old, but he did it. By his fifth
birthday on July 26th, he’d made the transition to where he is now:
hopeful and committed to “killing the cancer.”
Juvenile myelomonocytic leukemia (JMML)
Juvenile myelomonocytic leukemia (JMML) accounts for less than one percent of
childhood leukemias. It is usually diagnosed in children under two years of age and
is more common in boys than in girls. Children with neurofibromatosis 1 (NF 1) are
at increased risk of developing JMML.
The symptoms of JMML are similar to those of the acute leukemias: pale skin, fever,
headaches, sweating, and recurrent infection. Also usually present are enlarged lymph
nodes, enlarged spleen and liver, and a low platelet count. The course of JMML is
unpredictable. Once diagnosed, progressive deterioration usually occurs. However,
infants can survive for several years, but children older than one usually have rapidly
progressive disease.
Because chemotherapy is not generally a successful treatment for JMML, bone marrow
or peripheral blood stem cell transplantation is the best hope for cure. However,
chemotherapy is sometimes used to get the disease under control while preparing for
transplant. Cis retinoic acid may also help to achieve remission in these children.
My daughter was diagnosed with JMML in 1993 at the age of 27
months. Although it is a chronic leukemia, it is particularly fast moving,
and there is no treatment besides BMT. It is also vastly different from the
adult CML. My daughter had a mismatched (5/6) related (my husband’s
sister as donor) BMT four months after she was diagnosed. Today, she is
eight years post-transplant, is in the fourth grade, and is the absolute joy
of my life.
Once parents understand the basics about the type of leukemia their child has, it is
time to begin to decide how and when to tell their child the news.
childhood leukemias. It is usually diagnosed in children under two years of age and
is more common in boys than in girls. Children with neurofibromatosis 1 (NF 1) are
at increased risk of developing JMML.
The symptoms of JMML are similar to those of the acute leukemias: pale skin, fever,
headaches, sweating, and recurrent infection. Also usually present are enlarged lymph
nodes, enlarged spleen and liver, and a low platelet count. The course of JMML is
unpredictable. Once diagnosed, progressive deterioration usually occurs. However,
infants can survive for several years, but children older than one usually have rapidly
progressive disease.
Because chemotherapy is not generally a successful treatment for JMML, bone marrow
or peripheral blood stem cell transplantation is the best hope for cure. However,
chemotherapy is sometimes used to get the disease under control while preparing for
transplant. Cis retinoic acid may also help to achieve remission in these children.
My daughter was diagnosed with JMML in 1993 at the age of 27
months. Although it is a chronic leukemia, it is particularly fast moving,
and there is no treatment besides BMT. It is also vastly different from the
adult CML. My daughter had a mismatched (5/6) related (my husband’s
sister as donor) BMT four months after she was diagnosed. Today, she is
eight years post-transplant, is in the fourth grade, and is the absolute joy
of my life.
Once parents understand the basics about the type of leukemia their child has, it is
time to begin to decide how and when to tell their child the news.
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