Childhood Cancer

Print

Childhood Brain and Spinal Cord Tumors

Being an advocate for your child

Hospitals can be frightening places for children. Fear can be prevented or lessened if parents are there to provide comfort, protection, 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. Sometimes small couches 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.

Image

Sometimes you can create your own fun with just a little imagination. On one particular occasion, Matthew was feeling especially bored. With a little ingenuity, we soon discovered that four unused IV poles and as many blankets as we could “steal” from the linen cart made for one pretty cool tent. We then used the mattress from a roll-away cot, and spent the night “camping” in his hospital room. He had a wonderful time.

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 (over 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 the preschoolers.

Our hospital did not allow parents into the MRI suite. We worked with the head of that department, and now it is permitted for all families. This avoided the use of general anesthesia, so it was good for everyone involved. You don’t need to take “no” for an answer.

Some 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.

Whenever a family member is not present, children who are old enough should have a smartphone or be taught to use the telephone in the room. 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 (except emergencies) need to be authorized by a parent.

Everyone makes mistakes and hospital workers are no exception. Parents can help out by checking before any medications or blood transfusions are given. For instance, check that the name of the drug and the dose match what the protocol says should be given; if you weren’t given a copy of the protocol (sometimes called the “roadmap”), you can ask the hospital staff for a copy. You should feel free to ask questions or point out any deviations from prescribed treatment. Parents are the last line of defense against mistakes.

Know every drug your child takes. Write down the name of the drug and the dosage. Watch that the name on the drug matches what YOU are expecting your child to get, and ask if it isn’t something you recognize. Watch that the name on the unit of blood is your child’s name. Watch everything.

Working with the staffPlaying

Table of Contents

All Guides