The following excerpt is
taken from Chapter 7 of Childhood Leukemia: A Guide for Families, Friends,
and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 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 medical care.
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 can."
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 oils.
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 helpful
items.
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 puzzles.
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 questions.
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 chart.
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 hospital:
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 happen
everywhere.
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 embarrassed.
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 jewels.
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 enough.
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 contagious.