PATIENT-CENTERED GUIDES


Arrow Catalog
Arrow Patient Centers
Home
Arrow Childhood Leukemia
Center Home
Childhood Leukemia Center
Childhood Leukemia


Younger children derive great comfort from having a favorite stuffed animal, blanket, or quilt on their bed.


As soon as possible after admission, ask for a "floor tour."


Many hospitals have cooking facilities for families....


Ask the nurses and other parents if parking passes are available or where the cheapest parking is located.


It helps to come prepared for long waits each time that you go to the hospital.


Parents need to provide comfort, protection, and advocacy for their vulnerable child.


Exercise is important, too.

Your Child's Hospitalization


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 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.

The room

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.

Food

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.

Parking

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.

The endless waiting

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.

Befriending the staff

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.

Being an advocate for your child

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.

Playing

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.


Patient Centers Home |  O'Reilly Home  |  Write for Us
How to Order  |  Contact Customer Service

© 2001 O'Reilly & Associates, Inc.