Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Working with the staff

There are wonderful and not-so-wonderful people employed by hospitals, but it helps to remember that working in the pediatric oncology service is extremely stressful and that most of the staff are working hard on behalf of the children. Even the tiniest effort on your part to ease their burden or empathize with their circumstances will go a very long way toward establishing a cooperative and friendly relationship. For example, if parents change soiled bedding, take out food trays, and give their child baths, it can free up overworked nurses to take care of medicines and IVs. If you are making a run to the coffee shop, ask whether you can bring them something, too. Simply remembering to thank them every day will make a big difference. Chapter 7, Forming a Partnership with the Treatment Team, contains many suggestions to enhance your relationship with the staff.

Having cancer strips children of control over their bodies. To help reverse this process, parents can take over some of the nursing care. Children may prefer to have their parents help them to the bathroom or clean up their 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 on the nurses. However, some children and teens may feel better if the nurses provide these services, and for younger children whose parents work it may be necessary for the nursing staff to provide these services.

It helps to 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 your child’s door, on the wall above the bed, or on the chart.

Parents should not have to worry about helping the staff or whether the staff is stressed. They have enough on their plate to worry about. But families often feel like they’re so helpless, and they think, “What can I do, how can I get in control of this situation?” Many parents find comfort in changing the bed; they very often feel so completely overwhelmed, because they can’t give the medicines, and they can’t make the cancer go away. So they do what they can do for their child. Look at the staff as a team. You are part of that team. But no one can be your child’s parent but you.

In addition, parents and staff can help children regain some control by encouraging choices whenever possible. Older children should be involved in discussions about their treatments, while younger children can decide when to take a bath, which arm to use for an IV, what to order for meals, what position their body will be in 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.

Our son is almost 6. He prefers to talk first with the nurse or technician about fun stuff, like his trains, before he allows any kind of IV or blood draw. Most good techs don’t mind; they try to do that anyway. He definitely prefers it when I step back, stay quiet, and let him lead.

It is often helpful to post a schedule for each day that identifies when your child will receive therapies such as chemo, recreation therapy, physical therapy, occupational therapy, or speech therapy. The medical team, social workers, and child life therapists can help you set up the schedule.

It also helps to find out whether there are support groups for parents, patients, and siblings. These groups help family members of newly diagnosed children understand the diagnosis and treatment, as well as provide much-needed support.

The endless waitingBeing an advocate for your child

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