Below information was posted in a blog by Boey's mom Rachel Byers. Many of you have previously read the problems we had originally getting Darrel diagnosed through the Spring. Summer and Fall of 2005. Knowing these signs back then COULD have made a difference of what Stage the neuroblastoma was originally caught at. Please read them, and hope beyond
hope you NEVER have to seriously consider if one of these applies to your child
or someone close to you.
*************************************************
CRUCIAL...ALL PARENTS PLEASE READ AND REPOST
Reach as many people as you can with this information, it could save lives. I
know all to well how critical the timing of a correct diagnosis is AND TO ALWAYS
TRUST YOUR GUT INSTINCT WHEN IT COMES TO YOUR CHILD AND NEVER BACK DOWN
NO MATTER WHAT HE DOCTOR SAYS (if you ever need any help with your doctor, I
dont' mind helping out LOL GRR)!! THANK YOU all for standing with us in this
fight against this hideous disease that's destroying the lives of our
children...together we are A FORCE TO BE RECKONED WITH AND CANCER DOESN'T STAND
A CHANCE!!! Let's do whatever it takes to protect our precious children, they are
our future!!!!
Signs of Childhood Cancer
Unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin
Childhood cancer is rare. It is unlikely that your child will develop cancer.
Still, as a parent, you need to be aware of the symptoms of childhood cancer.
Observe your child for any sudden, persistent changes in health or behavior as listed
above. Since most of the symptoms of cancer can also be attributed to benign conditions,
the diagnosis of cancer can be a long process. You must trust your own instinct and work
as a team with your doctor, using your knowledge of your child and your doctor's
knowledge of medicine to protect your child's health.
--------------------------------------------------------------------------------
Chances are that your child will not get cancer: the odds of your child developing
cancer by the age of 19 is approximately 1 in 330. But, cancer is second only
to accidents as a cause of death in children.
And, just as you put your child in a car seat or a seat belt each time you get into the car,
just as you teach your child to play safely, just as you watch your young child constantly
so that he or she does not get hurt, so you also need to watch for signs of
childhood cancer.
This web page was written by the parents of the "1 in 330". We hope that what we
learned going through the diagnoses of our children will help other parents of children
with cancer obtain prompt treatment. Childhood cancers progress rapidly. A quick
diagnosis greatly enhances the chance that the child will survive cancer to live a
long life. Treated properly, the majority of children diagnosed with cancer are cured.
As a parent, you need to be aware of the symptoms of childhood cancer. Your
pediatrician is probably a very good doctor, but pediatricians are busy, they
do not know your child as well as you do, and they may never have diagnosed
childhood cancer. You need to know to trust your own intuition when you feel
that there is really something wrong with your child, even if the doctor
initially interprets the symptoms as a common child ailment. Your doctor may be
right, but you need to make sure that certain tests are performed to rule out
cancer.
************************
Leukemia:
Leukemia is a cancer of the bone marrow, the spongy center of the bones that makes
blood cells. It accounts for approximately 35% of all childhood cancers; approximately
1 in 1000 children will be diagnosed with leukemia by the age of 19, although it is
more common in children under the age of 10. In leukemia, abnormal white blood cells
divide out of control and crowd out the normal cells in the bloodstream. The abnormal
white blood cells are not mature, and therefore cannot carry out their infection-fighting
function in the blood. These cells crowd out healthy white blood cells, as well
as the red blood cells which carry oxygen to the body and the platelets which
cause the blood to clot.
Leukemia is treated by combination chemotherapy and sometimes radiation. The five
year survival rate for children diagnosed with leukemia and subsequently
treated is approximately 70%.
Signs and Symptoms
lethargy, weakness, paleness, dizziness
back, leg, and joint pain, headache, trouble standing or walking
easy bruising, unusualbleeding, frequent nose bleeds, bleeding gums,
petechiae (red pinpoints on the skin)
repeated, frequent infections
fever that lasts for several days
loss of appetite, weight loss
swollen lymph nodes, bloated or tender stomach,
swollen liver or spleen
night sweats, irritability
A child in the early stages of leukemia may show some or all of the symptoms above.
These same ymptoms are also attributed to the common flu; this fact makes
diagnosis extremely difficult. Each parent of a child with leukemia has a
different story of how the child was diagnosed. But most parents remember that
their child was more tired than usual in the weeks before diagnosis. A child
with leukemia may seem to be struggling to keep up their typical activity level
or they may not have the energy to do even their favorite activities. Many
parents report that their leukemic child had an infection or the flu that would
not go away. Looking back, they realize that the child had some of the other
symptoms mentioned above as well. Many parents report that they had a feeling
that there was "something wrong" with their child: they knew that something was
not right but they could not pinpoint what it was.
What To Do
Take your child to the doctor. The doctor should:
check for enlarged liver,
spleen, or lymph nodes
take blood for a complete blood test (CBC, with differential)
The blood test is crucial to the diagnosis. A blood test is relatively inexpensive,
and you should insist on one if you have read the above list of symptoms and
feel that your child could possibly have leukemia. If your primary care physician
will not order a blood test, go to another doctor. Do not wait: leukemia
progresses quickly and must be treated promptly.
A child with leukemia will most likely show a blood test with:
decreased red cells (low hemoglobin count)
possible blast cells (lymphoblasts, leukemia cells)
decreased platelets
a low level of normal white blood cells
increased lymphocytes
Keep in mind that about 10% of the patients with leukemia will show a normal
blood test at the time of diagnosis. To confirm that the disease is leukemia,
a bone marrow test must be done.
*************************
Neuroblastoma:
Neuroblastoma is a cancer of the sympathetic nervous system. It accounts for
5%-7% of all childhood malignancies; about 1 in 6000 children will be
diagnosed with neuroblastoma by the age of five. Neuroblastoma is a solid,
malignant tumor which manifests as a lump or mass in the abdomen or around
the spinal cord. Treatment will be determined by many factors,
including the stage of the disease at diagnosis and your child's age.
Neuroblastoma is often present at birth, but is most often diagnosed much later
when the child begins to show symptoms of the disease. The average age at
diagnosis is two. About 25% of newly diagnosed neuroblastomas are found in
children under the age of one. This age group has the best prognosis, with cure
rates as high as 90%. It is not yet known why children under the age of one do
so much better.
Signs and Symptoms
lump or mass in the abdomen, chest, neck, or pelvis
loss of appetite, nausea, weight loss, stomach pain,
onstipation, difficulty urinating
changes in the eyes: black eyes, a droopy eyelid, a pupil that doesn't constrict, vision problems
pain in the chest, difficulty breathing,
persistent cough
pain or numbness in the lower extremities,
limping, inability to stand, stumbling
bone pain, fever,
irritability, listlessness
backaches (backaches in children are not usual)
Most malignant solid tumors, such as neuroblastoma, produce swelling or
pain. The symptoms of neuroblastoma vary because the location of the tumor
determines the symptoms that are noticed by the parents. Most neuroblastomas
are found in the abdomen. Parents may feel a lump or mass while dressing or
bathing their child. A tumor in the abdomen may cause the child to feel "full",
experience stomach pain, loss of appetite, constipation and difficulty
urinating. Other primary sites can include the head/neck or chest. Tumors
located in the head and neck may present as a mass. The child may have "black
eyes", much like bruises, an eyelid that droops, or a pupil that doesn't
constrict properly. Chest tumors may cause pain, difficulty breathing, or a
persistent cough. Tumors that grow in spinal areas may cause the child to have
pain, numbness of the lower extremities, constipation and difficulty urinating.
Symptoms sometimes appear with less specific characteristics
such as weight loss, fever, or other vague feelings of ill health, and
therefore any unusual signs or symptoms for which there are no apparent causes
should be investigated.
I can tell you what happened in my daughter's case. When she was 16 months old,
she had loss of appetite, vomiting often, stumbling. Within few days she stopped
walking, standing, sitting all together. Her eyes started to move involuntarily (Opsoclonus) and she had tremors (Myoclonus). She even had tough time keeping her head straight up. (Ed. note: this comment was contributed by a parent who visited this page.)
In the majority of cases, neuroblastoma has already spread to area's outside of the
original site at the time of diagnosis. This can sometimes cause symptoms such
as bone pain, fever, irritability, sweating and high blood pressure.
What To Do
Take your child to the doctor. The doctor should:
check for an abnormal mass
do a urine test
Neuroblastoma almost always produces certain chemicals which are excreted in the urine. These chemicals are normally found in urine, but are found in higher levels in 95% of
the children diagnosed with this disease. A simple 24 hour urine collection is
done to detect these abnormal levels. if neuroblastoma is suspected, other
tests will include x-rays, abdominal ultrasound, CT scans of the head, chest
and abdomen, a complete blood count, blood tests of liver and kidney function,
MIBG scan, bone scans and bone marrow aspiration.
*************************
Wilms Tumor:
Wilms tumor is a cancerous tumor on the kidney, although it is totally unrelated to
adult kidney cancer. It accounts for 6-7% of childhood cancer cases. It occurs
in about 8 in 1 million children under age 14; it is more common in children
under age 7. Wilms is best treated when it is found early, before it has spread
to other areas of the body. Treatment for Wilms includes surgery, chemotherapy,
and possibly radiation, depending on how far the cancer has spread. The 5 year
survival rate for children treated for Wilms tumor is approximately 90%.
Signs and Symptoms
abdominal swelling and/or pain
nausea
vomiting, constipation
loss of appetite
fever of unknown origin
night sweats
abnormal urine color or blood in the urine
malaise
Your child may show some or all of the above symptoms. The symptoms are the
result of the tumor on the kidney. The lump of the tumor itself can sometimes
be felt, but it may not always be detectable. The kidneys are located toward
the back of the abdomen and the lump may be growing on the back of the kidneys
or toward the inside and it may not be as easily detected. Sometimes these
symptoms are attributed to a common kind of stomach flu, and are therefore left
untreated by a doctor. One parent reports that her child also had pain in her
leg, at the top of her thigh. As a general rule, any time symptoms of nausea,
fever, stomach pain, vomiting last longer than several days, it is a cause for
concern and you should contact your doctor. Remember that you are the best
judge of what is normal for your child. If your child is behaving in a manner
that is inconsistent with their normal behavior, showing symptoms that you
cannot explain, a fever that will not break with fever medication, or has any
persistent symptoms, contact your physician.
What To Do
Take your child to the doctor. The doctor should:
do an abdominal exam
Additional tests may include: blood test (CBC), urine test, x-ray,
ultrasound, intravenous pyelogram, and/or CT scan. The blood test, urine test,
and x-ray are relatively inexpensive and in most cases are effective at
properly diagnosing a Wilms tumor. As is true of many cancers, Wilms tumor is a
fast growing cancer. Early diagnosis is your child's best defense. The cost of
these tests is worth the time saved.
*************************
Brain Cancers:
Brain cancers account for 15% of pediatric cancers. The symptoms depend on the
location of the tumor. Since the brain controls learning, memory, senses
(hearing, visual, smell, taste, touch), emotions, muscles, organs, and blood
vessels, the presentation of symptoms varies accordingly. Since young children
often do not complain of the symptoms, parents must rely on their own
observations of their child to be aware of signs and symptoms.
Brain tumors are treated with surgery, radiation, and chemotherapy. Depending on the
type of tumor and the promptness of diagnosis, the 5 year survival rate is 40-80%.
Signs and Symptoms
a seizure not related to high fever
staring, repetitive automatic movements
persistent vomiting without any known cause (projectile vomiting),
nausea
progressive weakness or clumsiness,
neck tilt, squint
walking, balance problems
precocious
puberty; growth retardation
sleep apnea
vision problems
headaches, especially that wakes the child up at night or is early in the morning
pain, especially back pain, which should be taken seriously in a child
changes in personality, irritability, listlessness
excessive thirst
excessive urination (rare, if the tumor is pressing against the pituitary)
As with most childhood cancers, the symptoms of brain tumors are diffuse
and confusing, and are often initially attributed to viruses, neurological
problems, or even emotional problems. Most parents of children diagnosed with
brain tumors report variations of the symptoms listed above, symptoms that had
no apparent cause and may have lasted for several months before the
pediatricians ordered the tests which diagnosed a brain tumor.
Parents of children with brain tumors advise other parents to rely on own "gut
feelings". When you feel that your child is not what he used to be, do take the
child to the doctor. Persistency of symptoms is also important. While it is
appropriate to wait to take your child to the doctor if you observe the above
symptoms, if those symptoms persist, go to the doctor. If necessary, insist on
the tests listed below, even if the doctor disagrees. On occasion, a child's
teacher may notice a change in behavior pattern or performance; take your
child's teacher seriously. Opthamologists are sometimes the specialists who
correctly diagnose brain tumors, so an eye exam is appropriate when vision
problems are apparent.
*If your child is a baby, the only symptom may be a head that is growing too fast.
Because an infant skull can grow to accommodate the extra volume (tumor),
a baby may present with an enlarged head.
What To Do
Take your child to the doctor. The doctor should listen carefully to your
description of your child's behavior and ask you pertinent questions. If
symptoms warrant, vision and other tests should be performed. The tumor
probably will not be felt. The doctor should order tests such as MRI and
CT Scans. Both of these tests are expensive, and therefore doctors will likely
not order them until they rule out all other possibilities. As a parent, you may
need to be quite insistent that they be performed. Any brain tumor will show up
on an MRI; the CT scan misses some tumors.
*************************
Rhabdomyosarcoma:
Rhabdomyosarcoma is a fast-growing, highly malignant soft-tissue sarcoma
which arises in undifferentiated striated muscle cells. This type of cancer can
occur in a variety of places in the body: the head, neck, and around the eyes;
the extremities (shoulders, arms, and legs); in the pelvic region and genitourinary
tract; and in the chest and lungs.
Rhabdomyosarcoma accounts for 5-8% of childhood cancers and
usually affects children the ages of 2 to 6 and 15 to 19.
A noticeable lump or swelling is present in many cases of rhabdomyosarcoma. Other symptoms depend on the location of the tumor.
Signs and Symptoms
lump or swelling, firm and painless to touch, in the extremities, the groin area, or
the vaginal area
drooping eyelids, swelling of the eye, protruding eyeball,
rapid vision changes
hoarseness, difficulty in swallowing
abdominal pain that persists for more than a week
Keep a close eye on your child for small lumps which do not disappear in a
week or so, but instead keep growing larger. Especially watch the pelvic region
and the arms and legs. Also watch for any changes in the eyes. Rhabdomyosarcoma
is a rapidly growing tumor and the sooner treatment begins, the more favorable
is the prognosis
What To Do
Take your child to the doctor. If the doctor finds symptoms of a
rhabdomyosarcoma, the following tests should be ordered:
biopsy of the tissue
complete blood count (CBC)
X-rays
CT scan
MRI
A biopsy is a test in which a small piece of the tissue will be removed and
studied under a microscope to see if there are any cancer cells. The X-rays, CT
scans, and MRI detect internal tumors.
Treatment for rhabdomyosarcoma usually includes surgery to remove the tumor,
radiation, and/or chemotherapy. Survival rates depend upon the site and stage of the cancer; current statistics state a 5 year survival rate of 60% overall for this type of cancer.
*************************
Lymphomas:
Lymphomas are malignant cell infiltrations of the lymphatic system. The lymph
system includes the nodes with which many parents are familiar, located in the neck,
armpit, and groin. These nodes are only part of the lymph system, as they are
connected to each other and to the spleen, thymus, and parts of the tonsils,
stomach, and small intestine. Once a malignancy begins in one part of the
lymph system, it often spreads throughout the rest of the system before it is detected.
Lymphomas are broadly classified as Hodgkin's and non-Hodgkin's. The two are
distinguished by cell type. They share similar symptoms such as painless swelling
of the lymph nodes, fever and fatigue. Non-Hodgkin's lymphomas are more common with at least 15 different types. Hodgkin's generally occurs in individuals between 15-40 years
of age, while non-Hodgkin's generally occurs in individuals between 30-70 years of age.
Today, Hodgkin's lymphoma is more curable than non-Hodgkin's. The cure rate
varies according to the type of disease.
Signs and Symptoms
swollen lymph node, especially in the neck, armpit or groin
swelling of the face
weakness, tiredness
sweating, especially at night
unexplained fever
unexplained weight loss
abdominal pain or swelling
pain
breathing difficulties, occasional cough, sometimes
difficulty in swallowing
In most cases of non-Hodgkin's lymphoma, a painless, firm swelling in the neck,
the armpit, or the groin lymph nodes is present. Since extranodal sites are
often involved, other less specific signs may occur. Gastrointestional tract
involvement leads to abdominal pain, jaundice, diarrhea, gastrointestional
bleeding, and constipation. If the spleen or liver are involved, they are
enlarged. If the bone marrow is involved, neutropenia, fatigue, bleeding or bruising occurs.
What To Do
Take your child to the doctor, who will do a careful examination of your child and
order the following tests:
complete blood count (CBC)
chest X-ray
At this point, many children will be found to have some other benign condition.
In the majority of cases, the doctors take time to rule out a lot of
other things, especially lung diseases and leukemia. If initial tests
confirm that your child may have a lymphoma, the doctor may refer you to a
pediatric hematologist/oncologist, who may do a biopsy of any lumps or tumor to
confirm what type of lymphoma it is. Also, a bone marrow aspiration may be
ordered and CT scans, and possibly other tests as needed in your child's
individual situation.
Lymphomas are usually treated by a combination of chemotherapy, radiation,
and/or bone marrow transplants. The cure rate varies greatly depending on the
type of lymphoma and the progression of the disease.
*************************
Retinoblastoma:
Retinoblastoma is a malignancy of the retinal cell layer of the eye and is the
most common eye tumor in children. It usually occurs before the age of five
and can occur in one or in both eyes and is hereditary in some cases.
Retinoblastoma accounts for 3-4% of all childhood cancers; about 1 in every
15,000 children will be diagnosed with this cancer.
Signs and Symptoms
whitish color behind the pupil
problems with eye movements (crossed eyes)
a red irritation that persists
The most common symptom is a whitish color behind the pupil,
instead of the usual dark color. At well-baby check-ups, the pediatrician
routinely checks your child's eyes for this and other symptoms. As a parent,
you should watch for the above symptoms between check-ups as well.
If you suspect that the abnormalities listed above are present and not adequately
explained by your pediatrician, you should seek an eye examination by an
ophthalmologist specializing in pediatric eye disease. If the ophthalmologist
detects abnormalities, an examination under anesthesia may be required to
further evaluate your child.
Retinoblastoma is treated by surgery, chemotherapy, and radiation. Current statistics state a 80-90% 5 year survival rate.
*************************
Bone Cancers:
Osteosarcoma and Ewing's sarcoma are the most common malignancies of bone
tissues in children. Osteosarcoma, the more common of the two types, usually
presents in bones around the knee; Ewing's sarcoma may affect bones of the pelvis,
thigh, upper arm, or ribs. Bone cancers are most common in ages 10-20 and they account for about 6% of all childhood cancers.
Signs and Symptoms
pain in a bone
swelling or tenderness around a bone or joint
interference with normal movements
weak bones, leading to fractures
fatigue, fever, weight loss, anemia
Bone pain is the most common symptom. Sometimes a lump can be felt on the bone, or the tumor will interfere with normal movements. What often happens is that a child
injures themselves while playing, and the pain persists long after the injury
should have healed. So, assuming that a bone is broken, the parents take the
child to the doctor for evaluation, at which time X-rays reveal a bone tumor.
What to Do
Take your child to the doctor. The doctor should do
a complete examination and order the following tests:
blood tests
X-rays
The blood is tested for alkaline phosphatase. A large amount of
alkaline phosphatase can be found in the blood when the cells that form bone
tissue are very active, as in growing children and adolescents, or when a
broken bone is mending, or when bone cancer is present. While this test is not
a completely reliable indicator of bone cancer, a positive test indicates
further tests are warranted. If the doctor feels that the examination, blood
tests, and X-rays indicate bone cancer, he will refer you to an orthopedic
oncologist. The oncologist will do a biopsy to look at the cells under a
microscopy and may order a CT scan or an MRI. About 25% of bone cancers have
spread at diagnosis, usually to the lungs.
Bone cancer is treated by surgery to remove the tumor combined with chemotherapy.
The prognosis depends on the location of the tumor and whether or not it has
spread; generally a five year survival rate of 70% is given for childhood bone cancers.
*************************
Note to Parents
This Web page was written by a group of parents of children with cancer. These
parents are now reaching out to other parents to give them the
knowledge that they wish they had; the knowledge that would have helped their
child. We all once were in the position of: not my child, my child won't get
cancer. But it does happen. Many of us went through weeks of trips to the
doctor not knowing what was wrong before the diagnosis of cancer was made. In
hindsight, we felt we knew all along that something was wrong. Pay attention to
your heart. It can happen. If it does, we are there to help you. Always take
your children to their scheduled well baby check-ups. Ask your doctor to
explain each step of the examination. During these check-ups you should make
sure that a complete abdominal examination, with particular attention to the
adrenal glands (near the kidneys) is performed. The doctor should check your
child's eyes. He should ask you if you have noticed any usual tiredness,
vomiting, bleeding, bruising, or behavior changes. Between medical check-ups
any unusual signs or symptoms (nausea, swelling, double vision, stumbling,
nosebleeds, drowsiness, listlessness, difficulty in breathing, etc.) for which
there are no apparent causes should be investigated.
Patty Feist
7/2005
(Orignally Posted Mar 3/08)