Where should your child receive treatment?

After a tentative diagnosis of leukemia, most physicians refer the family for further
tests and treatment to the closest major medical center with expertise in treating
children with cancer. It is very important that the child with leukemia be treated at a
facility that uses a team approach, including pediatric oncologists, oncology nurses,
specialized surgeons and pathologists, pediatric nurse practitioners, child life special-
ists, pediatric radiologists, rehabilitation specialists, education specialists, and social
workers. State-of-the-art treatment is provided at these institutions, offering your
child the best chance for remission (disappearance of the disease in response to treat-
ment) and ultimately, cure.
When we were told that Katy had leukemia, for some reason I was
worried that she would miss supper during the long road trip to Children’s
Hospital. Why I was worried about this when she wasn’t eating anyway is
a mystery. The doctor told us not to stop, just to go to a drive-through
restaurant. I was so upset that I only packed Katy’s clothes; my husband,
baby, and I had only the clothes on our backs for that first horrible week.
Usually the child is admitted through the emergency room or the oncology clinic,
where a physical exam is performed. An intravenous line (IV) is started, more blood
is drawn, and a chest x-ray is obtained. Early in your child’s hospitalization, the
oncologist will perform a spinal tap to determine if any leukemia cells are present in
the cerebrospinal fluid and a bone marrow aspiration to identify the type of leuke-
mia. Details of these procedures are described in Chapter 3, Coping with Procedures.
Physical responses
Many parents become physically ill in the weeks following diagnosis. This is not
surprising, given that most parents stop eating or grab only fast food, normal sleep
patterns are a thing of the past, and staying in the hospital may expose them to
illnesses. Every waking moment is filled with excruciating emotional stress, which
makes the physical stress so much more potent.
The second week in the hospital I developed a ferocious sore throat,
runny nose, and bad cough. Her counts were on the way down, and they
ordered me out of the hospital until I was well. It was agony.
• • • • •
That first week, every time my son threw up, so did I. I also had almost
uncontrollable diarrhea. Every new stressful event in the hospital just
dissolved my gut; I could feel it happening. Thank God this faded away
after a few weeks.
Parental illness is a very common event. To prevent this, it is helpful to try to eat nutri-
tious meals, get a break from your child’s bedside to take a walk outdoors, and find
time to sleep. Take care not to overuse drugs, tobacco, or alcohol in an attempt to
control anxiety or cope with grief. Whereas physical illnesses usually end or improve
after a period of adjustment, emotional effects continue throughout treatment.
Emotional responses
The shock of diagnosis results in an overwhelming number of intense emotions. The
length of time people experience each of these feelings greatly differs, depending on
preexisting emotional issues and coping strategies. These preexisting states vary from
person to person. Those whose worlds are relatively stable tend to be better able to
move quickly through powerful emotions than those who are also dealing with other
crises. Many of these emotions reappear at different times during the child’s treat-
ment. Some of the feelings that parents experience are described in the next sections.
All of the emotions described are normal responses to a diagnosis of cancer in a child.
Confusion and numbness
In their anguish, most parents remember only bits and pieces from the doctor’s early
explanations about their child’s disease. This dreamlike state is an almost universal
response to shock. The brain provides protective layers of numbness and confusion
to prevent emotional overload. This allows parents to examine information in smaller,
less threatening pieces. Pediatric oncologists understand this phenomenon and are
usually quite willing to repeat information as often as necessary. Many centers have
nurse practitioners who translate medical information into understandable language
and answer questions.
It is sometimes helpful to write down instructions, record them on a small tape
recorder, or ask a friend to help keep track of all the new and complex information.
The doctor ordered a CBC from the lab. All the while I’m still convinced
my son’s bleeding gums were caused by his six-year molars. The rest
happened so fast it’s hard to recount. We ended up at the hospital getting
a bone marrow test. My husband and I tried to tell the doctor that we
would go home and let Stephen rest and that when we came back in the
morning they could do another CBC. We were positive that his cell counts
would go up in the morning. He said that we didn’t have until morning.
He said Stephen was very, very sick. After the bone marrow test, the
doctor called us in a room and said that Stephen had leukemia. After that
word I couldn’t hear a thing. My ears were ringing, and my body was
numb. There were tears in my eyes. It was actually a physical reaction.
I asked him to stop explaining because I couldn’t hear him. I asked for
a book and went back to the hospital room to read and to cry.
• • • • •
For the longest time (in fact still, three years later) I can hear the
doctor’s voice on the phone telling me that Brent had leukemia. I
remember every tiny detail of that whole day, until we got to the hospital,
and then the days blur.
• • • • •
I felt like I was standing on a rug that was suddenly yanked out from
under me. I found myself sitting there on the floor, and I just didn’t know
how to get up.