Children’s Voices: The Experience of Patients and Their Siblings

Two-year-old Jimmy had been hospitalized for six months, and had undergone many traumatic medical procedures. He was withdrawn; fearful of noises, sudden movements, and new people who entered his room; and disinterested in food or toys. Prior to his discharge home, the parents requested strategies from the psychologist to “get him back” to his pre-morbid level of functioning. Recommendations to the parents included:

• Take a gradual and consistent approach with Jimmy in all areas. The 6-month disruption in his development will not be righted overnight; he needs to re-familiarize himself with his family, room, house, and toys.

• It is fine if he wants you within sight at all times. After all the coming and goings of the hospital, he will crave your presence. The intensity will abate with time. Very gradually, once he re-engages with toys, try to move away from him as he plays (first in the same room, then out of the room). Initially, do so for only moments at a time.

• Jimmy has to re-learn how to play and have fun. Start with a few toys that he can get to know over the first few weeks, such as blocks to build up and knock down, a cloth for peek-a-boo, pull toys that encourage crawling, and cuddly stuffed animals. Keep the toys around him and do several play sessions with him each day.

• As much as possible, have him on the floor or in his playpen rather than in your arms. Put him into the playpen for as little as ten seconds and gradually increase the time. Reinforce him with hugs and verbal praise for being a “big boy.” Put toys or food slightly out of reach to tempt him to crawl and to stand to reach them.

• Jimmy should eat all his meals in his high chair, always in the same location. Put only a bite of each kind of food out at a time. Because he seemed to eat more in the hospital when he was playing, use small toys as both distraction and enjoyment.

• It is important that Jimmy begin to use his words again. When he points to an object, give him its name and develop a back-and-forth language game with him.

Matthew, 4, who was receiving palliative care for a brain tumor, told the psychologist: “I'm not sick anymore” and adamantly denied any discomfort. His response to most queries by his parents or the medical team was “I'm OK” or “I'm fine” even when it was obvious that he was not. In fact, his non- or underreporting of symptoms made it difficult for his mother to administer pain medication effectively. The psychologist introduced Matthew to a rabbit puppet that he promptly named Donald Bunny. She used the puppet to model the reporting of symptoms (e.g., Donald Bunny has a headache, his eyes hurt when it is too bright, etc.). Matthew watched and listened with some interest. The psychologist left the puppet with him. At the next session, his mother said Matthew had begun reporting symptoms attributed “through the voice” of Donald Bunny. He still would not verbally acknowledge that he had any of these problems; however, his drawing of a dark and threatening “batman tunnel” connoted distress and pain ( Fig. 3-3 ) and contrasted with his earlier bright image ( Fig. 3-4 ). By the next session, while Matthew still would not initially mention any of what had been “bad” during the week, he did allow his mother to list some of his symptoms and would nod affirmatively to them. He then added spontaneously for the first time: “I don't like when I cough.”

A 3-year-old sibling manifested intense anxiety both at home and at preschool during his sister's long hospitalization. He drew a picture of the hospital with the following commentary: “A building with only three windows because some fell out and broke on the street. People have to be careful or their toes could get cut off. Nobody is in the hospital—they were all in a meeting. But you were there and were happy to see us and then everyone else came back. I was born and I got poison ivy and I died in the car. My sister was scared” ( Fig. 3-5 ).

Through a drawing ( Fig. 3-6 ) , an 8-year-old boy captured the immediacy of his response to the diagnosis of a life-threatening illness: “When I heard that I had leukemia, I turned pale with shock. That's why I chose yellow—it's a pale color. Scared is red—for blood. I was scared of needles, of seeing all the doctors, of what was going to happen to me. I was MAD [black] about a lot of things: staying in the hospital, taking medicines, bone marrows, spinal taps, IVs, being awakened in the middle of the night. I was sad [purple] that I didn't have my toys and that I was missing out on everything. I chose blue for lonely because I was crying about not being at home and not being able to go outside. Green is for hope: getting better, going home, eating food from home, and seeing my friends.” He has articulated the shock; the fear of everything from the concrete medical procedures to the sudden possibility of an altered future (“what was going to happen to me”); the constellation of sadness, grief, and loneliness of separation; and the absence from his normal life. Accompanying all these feelings is a forthright statement of hope. ( p. 31 )

Tim, an 11-year-old boy, had struggled with recurrent cancer since the age of 4. He was troubled by insomnia and anxiety during an inpatient stay in isolation for intensive treatment. Upon discharge, he continued to have significant anxiety, avoiding school and playing with friends. His medical team had cleared him for all activity, and he did not report pain or side effects of his medication. Tim had been using escalating doses of benzodiazepines at bedtime, as well as when needed during the day. When interviewed alone by the psychiatrist, he reported feeling “nervous and worried.”

Psychiatrist: About what?

Tim: About dying.

Psychiatrist: Which part?

Tim: Just being dead.

When questioned further, Tim articulated specific worries about many issues: dying suddenly while away from his parents; wondering what dying will feel like and what the afterlife holds; not being able to “come back as a ghost” to visit his family if they were to move away from their current house. He denied worry about pain: “I have been sick so long and had lots of pain.” The discussion continued on a spectrum from the current stable status of his illness to his feelings about God and spirituality. Following this session, Tim engaged in the most direct conversation with his medical team than ever before: about his illness, the stability of his scan results, and the fact that death was not imminent. The team reassured him that there would be time to talk more when death is closer at hand. Over the next few months, Tim returned to active play with peers, engaged in video games and early romantic interests, prepared for the next school year, and articulated future plans to go to college and get a job.

Bobby, 10, reported his version of the sequence of events that led to his sister's diagnosis of osteosarcoma and amputation: “She hurt her leg on the chain of her bike. She didn't even notice it until I pointed it out to her. I don't even ride my bike anymore. One night I went out and broke the chain so I couldn't ride it. I told my mother it broke by itself, but I broke it.” ( p. 55 ) He wrote a story: “This is my sister (drew a one-legged stick figure) and this is me (drew a two-legged stick figure). There is a difference. But I still think that this is the same Cindy and I know that she is not the same to you and I think that she is beautiful.” He then drew a picture of Cindy, stressing her very short hair and her stump. He expressed much concern about how the stump would look. ( p. 57 ) ( Fig. 3-7 ) In a subsequent session, Bobby admitted to nightmares of “the same thing” happening to him ( Fig. 3-8 ).

A ten-year-old sibling spoke about her brother's diagnosis of a brain tumor: ( Fig. 3-9 ) “I feel scared (green)—I feel as if I don't really know what is happening. Sad is blue—at first my parents just told me that my brother needed an operation. They didn't say it was cancer. Confused is yellow—just all mixed feelings—I don't know what to think. Hopeful is purple—bright—I don't really have a lot of hope, but maybe just a little. Angry is red because that is a mad color. Why him? What did it have to happen to him? My drawing is called ‘Mixed Messages’ because I have all of these different feelings and everyone is telling me different things. Like they say mostly that he is going to be okay, but they—and I—don't really believe it….”

Younger children are not developed in themselves yet, in their own persons, in their own individualism. They can still be with their mother. Older people are away from their mother; they're detached, more adult. When you're in the middle, parents don't want to let you go. You want to be set free a little bit, but you want to be able to come back. I just felt that I was denied any sort of chance.… Instead, it was decided for me:

“You are going to mature very fast right now. You have to make life and death decisions. You have to accept things that children who are young adults between the ages of thirteen and nineteen don't normally have to face.” It's like: “Grow up right now and become what you have to become to deal with this.” I never had the chance to be sweet sixteen. I never had the chance to be gay old seventeen. I had to automatically be an adult, and it was very hard.”

(Katherine, age 18) ( p. 101 )

Joanne fell on the stairs at school and split her lip open on the day before Cindy's amputation. Her explanation: “I was walking in flat heels on the stairs. I thought of Cindy's operation. That's why I fell.” ( p. 63 )

In response to the question: “What has been especially hard for you during your brother's illness?” an adolescent sibling responded: “Waiting while he is in the OR and worrying about what they are finding.”