The following excerpt is taken from Chapter
7 of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 3rd
Edition by Nancy Keene, copyright 2002 by O'Reilly & Associates, Inc.
For book orders/information, call (800) 998-9938. Permission is granted to
print and distribute this excerpt for noncommercial use as long as the
above source is included. The information in this article is meant to
educate and should not be used as an alternative for professional
There are few things in life worse than arising from a lumpy, pullout couch
to face another day of your child's hospitalization for leukemia. Hospitals are
noisy bureaucracies that run on a time schedule all their own. For a child,
being hospitalized means being separated from parents, brothers, sisters,
friends, pets, and the comfort and familiarity of home. A child's
hospitalization can rob both parent and child of a sense of control, leaving
them feeling helpless. With a little ingenuity, however, you can make the most
of the facilities, liven up the atmosphere, and even have some fun.
Hospital rooms are often painted a nauseating shade of gray or green, and
somehow, most windows seem to look out over a power plant. Covering the walls
with big, bright posters (Disney characters, sports figures, rock groups) can
liven up the room immensely.
The first thing we put up in Meagan's room was a huge poster of The Little
Engine That Could saying, "I think I can, I think I
Display cards on the walls, hanging from strings like a mobile, or taped
around the windowsills. Put up pictures of the child engaged in her favorite
activity, and add photos of friends, too. Most hospitals don't allow flowers
(can cause fungal infections) on oncology floors, but it's fun to have bouquets
of balloons bobbing in the corners. Younger children derive great comfort from
having a favorite stuffed animal, blanket, or quilt on their bed. If it doesn't
bother your child, make the room smell good with potpourri or aromatherapy
To personalize the visit of each member of the medical staff, some parents
bring a guestbook to sign. Others put up a visitor sign-in poster, which must
be signed before examinations begin or vital signs are taken. Another variation
of the sign-in poster is to have each staff member outline her hand and write
within the print.
In my position as a parent consultant, I suggest that a journal (some titles
are Book of Hope, Book of Sharing, My Cancer Experience, Friends Indeed) be
kept in the child's room for any visitor, family member, or medical caregiver
to write in at any time. Leaving a message if the child is sleeping or out of
the room for procedures can be a nice surprise. Later, a surviving child and
her family, or the family of a child who has died, have a memory book of those
who have touched their lives.
Bringing music will help block out some of the hospital noise as well as
help everyone relax. A small cassette player, Walkman with earphones, or CD
boom box is portable and useful.
My daughter's preschool teacher sent a care package. She made a felt board with
dozens of cutout characters and designs that provided hours of quiet
entertainment. She also included games, drawings from each classmate, coloring
books, markers, get well cards, and a child's tape player with ear phones.
Because we had run out of our house with just the clothes on our backs, all of
these toys were very, very welcome.
Although many hospitals provide brightly colored smocks for the patients,
most children and teens prefer to wear their own clothing if at all possible.
This can pose a laundry problem, so check to see if the floor has washers
available for families to use.
As soon as possible after admission, ask for a "floor tour." Find
out if a microwave and refrigerator are available, learn what the approved
parent sleeping arrangements are, and ask about showers and bathtubs for both
patients and parents. Obtain a hospital handbook if one is available. These
booklets often include information on billing, parking, discounts, and other
Many children's hospitals have VCRs available. Sign up for a convenient time
and bring in or rent a favorite or funny video. Humor helps. Bring in
age-appropriate games, puzzles, and books.
A friend brought in a bag from the local dime store. He included
a water pistol (good for unwelcome visitors or unfriendly interns), play dough,
slinky, checkers, dominos, bubbles, a book of corny jokes, and
Buying meals day after day in the hospital cafeteria is expensive. In
addition, many of the food items available in the cafeteria deserve the
notorious reputation of "hospital food." Check to see if the floor
has a refrigerator for parents' food and stock it from home. Remember to put
your name in a prominent place on your containers.
Many hospitals have cooking facilities for families where they can cook or
microwave favorite meals brought from home. Ask family and friends to bring
food in when they visit, and consider ordering extra items to come up on your
child's tray. Ordering out for dinner can also be a nice change of pace for you
and your child. As long as there are no medical restrictions, there's no reason
why pizza can't be delivered to the hospital. Ask the nurses if they have menus
from local restaurants.
Just the smell of food nauseated my daughter. I'll never forget taking the tray
out in the hall and gobbling the food down myself. I always felt so guilty, and
thought that the staff viewed me as that parent who ate her kid's food. But it
saved money and prevented her meals from going to waste. I also did not want to
leave her side for the few minutes it took to go to the cafeteria, although in
hindsight, the walk would have done me some good.
Most parents of children with cancer have unpleasant memories of driving
around in endless loops looking for a parking space while their child is
throwing up in a bucket in the back seat (or even worse when the bucket was
left at home). Learn about both long- and short-term parking arrangements. Ask
the nurses and other parents if parking passes are available or where the
cheapest parking is located.
I had no idea that the hospital gave out free parking passes to their frequent
customers. Now I tell every new parent to check as soon as possible to see if
they can get a parking pass. It will save them lots of money that they would
have spent on meters and parking tickets, and time they would have spent
running out to move the car out of the emergency parking spot.
Parents need to become experts in learning how to wait without losing their
minds. They need to expect long waits for everything from blood draws to
procedures. Many parents find themselves getting nervous or angry while waiting
for the doctors to appear during "rounds" each morning (when the
attendings, residents, and interns move from room to room in a large group),
then feel let down when the visit lasts only a few moments. If you have
questions to ask the doctors, write them down and tell the doctors when they
come in that you would like a few moments to discuss concerns or ask
It helps to come prepared for long waits each time that you go to the
hospital. Some progressive (and well-funded) institutions have VCRs and games
available, but usually you need to bring your own things. Have your child pick
out favorite card games, board games, computer games, drawing materials, and
books. Remember to bring food and drinks.
Hospitals are staffed by many wonderful and some not-so-wonderful people.
Many parents find that their heightened stress makes them less tolerant of
inefficiency or confusion. Working together, rather than becoming adversaries,
will provide your child with a sense of security. Doing things like helping
change soiled bedding, taking out food trays, and giving baths frees up
overworked nurses to take care of medicines and IVs. Nurses really appreciate
the help, and usually reciprocate by answering questions or negotiating with
the doctors for you.
As soon as possible, learn about the shift changes on the oncology floor. If
you need to leave during the day or night, don't leave a request with one nurse
if another will be coming on duty soon. If you have a request or reminder, you
can post it on the child's door, on the wall above the bed, or on the
I always made a point of introducing myself to my daughter's nurse and resident
for each shift. I told them my child's name and which room we were in. I told
them that I would be there the whole time and I would help as much as I could.
I tried to talk to them about non-hospital matters to give them a break from
their routine, as well as get to know them. I thanked them for any kindnesses
and told them I appreciated how hard their job was. Although I wasn't angling
for favors, I found that they soon came to like me and helped me out whenever
any difficulty arose. Although there were a few that I didn't care for, on the
whole I found the staff to be warm, caring, dedicated people.
Hospitals can be frightening places for children. Parents need to provide
comfort, protection, and advocacy for their vulnerable child. To fulfill these
roles, parents need to be present.
Most pediatric hospitals are quite aware of how much better children do if a
parent is allowed to sleep in the room. Sometimes small couches convert into
beds, or parents can use a cot provided by the hospital. If hospital policy
requires the parent to leave, insist on staying. Geralyn Gaes tells a story in
You Don't Have to Die about a confrontation at her local community
One night a nurse came into Jason's room and curtly informed me that I would
have to leave, since it was past visiting hours. With my son pale and retching
from chemotherapy, I was not about to go anywhere. Looking her in the eye, I
said, "You can send security after me if you like, but I'm not leaving
here." No one disturbed me again.
Of course, sometimes it isn't possible to stay with your child if you are a
single parent or if both parents work full time. Many families have
grandparents or close friends who stay with the hospitalized child when the
parents cannot be present. Older children and teenagers may not want a parent
in the room at night, but they may need an advocate there during the day just
as much as the preschoolers.
Whenever my husband couldn't be at the hospital at bedtime, he would bring in
homemade tapes of him reading bedtime stories. Our son would drift off to sleep
hearing his daddy's voice.
We were always there with her in the hospital and one of us was always with her
with treatments. However, she did not want us going back with her into the
examining room, so we respected those wishes. Her doctor was very kind in
always coming out and making comments to us also after he had allowed her to
come in privately with him and the chemotherapy nurse. He showed her complete
respect as a fifteen-year-old and also took time to meet our needs too. She has
always been the one keeping up with her own medical reports, concerns, etc.,
and although her father and I have always been there with her and for her in
the background, she has been much more knowledgeable about the whole cancer
experience than we have in her treatments, medications, etc. She loves being in
charge of her medical needs.
Brian was twelve and could have stayed alone, but we never left him more than
five minutes to run down the hall for coffee, bathroom, etc. Someone--my
husband, me, grandparents, aunts, uncles--was always there. If we had needed
them, church members and friends had also volunteered, as Kevin was only two at
the time. With my husband rotating days at work and the hospital, and me
rotating home and hospital, somehow we managed. The shift usually changed
mid-day, so we each got a half day at both. A caring employer is essential.
Also, Brian became very familiar with all his drugs, allergies, reactions,
doses. Several times he corrected the staff even before I could. We also had
errors and near-errors, as I'm sure everyone does, but many fewer, I'm sure,
because of the constant presence and watchful eye. When Kevin was diagnosed, we
supervised everything even more. Operating room doctors and nurses accessed his
line without first swabbing with alcohol. Someone wanted to give ibuprofen for
fever. Non-oncology nurses were working the pediatric oncology floor and knew
less than we did. Our hospital is now greatly improved, but things like this
For some families, it is less stressful for all if they do not hover at the
bedside. An oncologist made the following suggestion:
When people are subject to stress, some people cope by focusing on all the
details. For these people, being there all the time reduces their stress level.
In other words, they would be more stressed if they were at home or work
because they would be worrying all the time. Other people cope with stress by
blocking out the details and trying to make life normal. I think that you need
to think about how your family can best cope with this process and make your
decisions based on that. Have a family meeting to sort out these issues, and
don't feel bad if you decide what is best for your family is different from
what other people say you should do.
Whenever a family member cannot be present, children who are old enough
should be taught to use the telephone. Tape a phone number nearby where a
parent can be reached and have the child call if anyone tries to do procedures
that are unexpected. The hospital staff should be informed that any changes in
treatment need to be authorized by a parent.
Having cancer strips children of control over their bodies. To help reverse
this process, parents can take over most nursing care. Children may prefer
parents to help them to the bathroom or to clean up diarrhea or vomit. Making
the bed, keeping the room tidy, changing dressings, and giving back rubs helps
your child feel more comfortable and lightens the burden of the overworked
nurses. However, some children and teens may feel better if the nurses provide
these services. Parents should allow the child to express his needs, even if it
feels like rejection.
I was embarrassed to have the nurse change the sheets when I had an accident in
the bed. I couldn't help it when I was taking the cytoxan, but I was still
Parents can help their child regain some control by encouraging choices
whenever possible. Older children should be actively involved in discussions
about their treatment, while younger children can decide when to take a bath,
which arm to use for an IV, what to order for meals, what position for
procedures, what clothes to wear, and how to decorate the room. Some children
request a hug or a handshake after all treatments or procedures.
Children need to play, especially when hospitalized. Ask whether the
hospital has a recreation therapy department. Often, a large room is devoted to
toys, books, dolls, and crafts, and is staffed by specialists who really know
how to play with children. These rooms provide many therapeutic activities such
as medical play with dolls, which help children to express fears or concerns
about what is happening to them. By encouraging contact with other children in
similar circumstances, recreation therapy helps children feel less alone, less
different from other children. The rooms are a cheerful change from lying in a
hospital bed and are full of fun-filled activities and smiling staff people. If
the child is too ill or her counts are too low to go to the play area,
arrangements can be made for a recreational therapist to bring a bundle of
toys, games, and books to the room. This can give the parent time to go out to
eat or take a walk.
When I wanted to have a conference with the oncologist about Katy's protocol, I
called recreation therapy and they sent two wonderful ladies to the clinic. The
doctor and I were able to talk privately for an hour, and Katy had a great time
making herself a gold crown and decorating her wheelchair with streamers and
Exercise is important, too. For kids strong enough to walk, exploring the
hospital can be fun. Plan a daily excursion to the gift shop or the cafeteria.
Go outside and walk the entire perimeter of the hospital if weather and the
neighborhood permit. Don't feel limited by an IV pole; it can be pushed or
pulled and will feel normal after a while. Many children have been seen
standing on the base of the IV pole with a parent pushing them down the hall at
breakneck speed. Check to see if the hospital has a swimming pool (for you to
swim in, your child probably can't use it).
In our hospital photos, I have several of a grinning four-year-old, hooked up
to an IV, in a hospital bed, with the head raised waaaaaaayyyy up, as she'd
slide down to the bottom. Of course I was doing guard duty at the door, to
alert the happy child when a nurse was coming and she needed to "cease
this unsafe behavior immediately!" Sometimes you have to make memories
while you can, wherever you are.
At Egleston, there was a large metal tricycle with a huge metal basket on the
back. I would heplock Kenny, toss him in the back, then we would pedal all over
the hospital. There is one part of the hospital called "the tunnel"
which connects the children's hospital with Emory Hospital. It is about a
mile-long tunnel -- all downhill. Man, we would fly--laughing and screaming. Of
course, coming back up was pure hell.
Children or teens with low white counts may feel refreshed by going up on
the roof just to feel the wind on their faces and the warm sun on their skin.
Some hospitals even grant passes to young patients whose white counts are high
Preston left the hospital several times on passes. His IV was capped off
and his arm was taped to a board resembling a cast. He attended a birthday
party and went Christmas shopping on a pass.
Any action that parents, family members, and friends take to support and
advocate for the youngster with cancer buoys up the spirit. Courage is