Childhood Cancer

Childhood Leukemia

Staying with Your Child

Hospitals can be frightening places for children. Fear can be prevented or lessened if parents are there to provide comfort, support, and advocacy for their child. Most pediatric hospitals are quite aware of how much better children do when a parent is allowed to sleep in the room. Some rooms contain small couches that convert into beds, or parents can use a cot provided by the hospital.

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.

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, older siblings (older than age 18), 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 preschoolers.

We were always there with her in the hospital, and one of us was always with her for 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 talking to us. He showed her complete respect as a 15 year old and also took time to meet our needs. She has always kept up with her own medical reports and concerns. 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.

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Our son was 3 years old when our 14-month-old daughter Emi was diagnosed with AML. Our daughter was in the hospital almost full time for six months. First, I tried to keep him with us at the hospital during the day, but he was pushing buttons and running around, so that was difficult. The hospital had a sibling space where they had lots of games and activities, but it isn’t for full time day care. So, we were so grateful when one of the moms at his preschool offered to watch him during the weekdays when my husband was at work. My husband would pick him up, and bring him to the hospital so he could see me and Emi for an hour or two. I stayed every week day at the hospital, and my husband and I alternated nights. We never left her alone. We had relatives who drove up to do round-the-clock weekend hospital duty so that we had time at home with our son and each other.

In contrast, other families find staying at the hospital day and night to be too stressful. 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.