There are wonderful and not-so-wonderful people employed by hospitals. It helps to remember that working in the pediatric oncology field is extremely stressful and that most of the staff are dedicated to 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 help 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 10, Forming a Partnership with the Medical Team, contains suggestions for how to develop a positive relationship with the staff.

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 that 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 to get to know them. I thanked them for any kindnesses and told them I appreciated how hard their jobs were. 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 members to be warm, caring, dedicated people.

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We’ve spent 144 days in the hospital so far, and I don’t mince words about foolish things that make life hard in there. I’m not easily intimidated and I use common sense. My daughter wears a pull-up diaper at night, so when nurses come in to check the restroom for pee, I tell them to leave because she wears a pull up. When they turn on the overhead light in the middle of the night, I turn it off and tell them to go get a flashlight. Most of the time, they are fine with that.

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.

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 their room. Some children request a hug or a handshake after all treatments or procedures.

Our son is almost six. 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 helps to learn about the shift changes on the oncology floor. If you need to leave during the day or night, do not 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.

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