Nick Gonzalez is a Child Life Specialist. He talks and plays with kids who have cancer every day.
These infants, toddlers, kids, adolescents and young adults come to the Dell Children’s Medical Center in Austin, Texas to be treated - mostly for leukemia, or for brain tumors or soft tissue cancers.
Nick helps kids, their parents and sisters and brothers understand what’s happening after cancer enters their world. He teaches them about the disease, what they can expect from the treatment and what lies ahead.
He’s there to bring comfort to the little ones – to ease their fears and worries through activities that are designed to heal.
Then, Nick is there when the unthinkable happens – when a child dies from this horrible disease. He helps the family deal with the loss.
dailyRx News spoke with Nick about his work as a Child Life Specialist, and what he told us was as amazing as his patients are.
Specially for children
Nick works in Specially For Children - an area that serves anywhere from 25-65 youngsters a day.
The place is designed for kids and what they like to do.
He says each room in the clinic has an Xbox 360. The activity room has a “wall full of craft materials” and some special activity every day. Kids can choose whatever they want to do.
There’s a pre-school play area and a teen room for watching movies, gaming or napping.
“I can tell you that we have a good time here, the mood is light, and we make the experience fun,” Nick says.
How cancer appears
Nick’s patients range in age from newborns to 21 years old. He sees them after something happened and they needed to visit a doctor.
“Cancer doesn’t really tend to give too much apparent warning. Usually, our kids find out they have cancer through routine lab work, a broken bone, or because they were having chronic headaches. Doctors really don’t screen for cancer because it is rare in children,” according to Nick.
How are the kids?
Nick can’t describe a typical patient. No two are alike.
“Some patients arrive terrified, and others prance through the hallway,” he says.
One of the first things he has to do is assess how much the children understand and where they are emotionally. This guides how he helps and supports them and their families.
Really, Nick should be called a Family Life Specialist – because he works with the parents and siblings along with the child who has cancer.
“This type of care considers the family as one group, not just the patient. Parents are usually experts of their children; thus a great resource in predicting how their child will cope,” he says.
“Our goal is to meet the family where they are emotionally and assist them to find, use, and strengthen their coping techniques,” Nick explains.
And that includes the brothers and sisters. “We encourage the patient’s siblings to learn about their brother/sisters care."
Talking to kids about cancer
Communicating with youngsters about a complicated disease requires some background work. Nick says several questions need to be answered before effective conversations can take place.
“Are they a child who likes details, or do they just like the general idea of things? Have they had any traumatic experiences in healthcare? Do they have any family members diagnosed with cancer? Has the family experienced a death of a family member or friend as a result of cancer? What does their support system look like? What is the cultural background of the family? “
Once he knows the child better, Nick talks to the parents and asks if they want to do the explaining or if they would like a child life specialist take care of this. Other things also need to be considered – if the teaching should be broken up or completed in one visit, for instance.
When talking to a child, Nick sits at eye level. He determines the best approach to use – a verbal explanation or tactile.
“Children often have misconceptions of procedures and words with double meaning. We use play with teaching dolls, pictures of body structures and real medical equipment to help children to understand diagnosis and treatment.”
It’s really important, Nick says, to be honest and to build trust.
The questions kids ask
We asked about the common questions youngsters ask. Here’s what they ask Nick and how he responds.
Am I going to die? This depends on how advanced the cancer is, and Nick is honest with his answers.
How will it go away? Again, it depends on the cancer and how much the child can understand. He might say - “You will get a medicine called chemotherapy to help the cancer go away.”
Do I have to have surgery? “Yes, you have to have surgery so the doctor can take out the cancer. When you have surgery, the doctor will give you medicine, so you will be asleep. When you are sleeping you will not remember or feel anything. The doctor has to stop giving you the medicine for you to wake up,” Nick will tell them.
Can I catch cancer? “No, cancer is not something you can catch."
Why did this happen to me? “I want you to know that you did not do anything wrong. This is just something that happens. It is not your fault.”
Is my hair going to grow back? “Yes. You will lose your hair when you get chemotherapy, but it will begin to grow back when you stop chemotherapy.”
Kids with cancer just want to be kids
Sick children just want to be treated normally, Nick says.
“They are a child with cancer, not a cancer patient. They want to play, have fun, and do the same things they were doing before they were diagnosed with cancer. They want to see friends and family. They want to go to school, when medically able."
Supporting the parents
Nick suggests that parents keep as normal a routine as possible, provide opportunities for the kids to be with their friends and maintain behavioral boundaries.
“Parents usually have the tools to talk to their children, but are unable to access them because of stress.”
So he counsels parents to – again – be honest and talk at the child’s level using simple words. Nick says it’s also a good idea to get the children ready for new experiences, whether that be a doctor visit, test or surgery.
The kids’ friends
Nick says it’s really helpful for the children to be with their friends.
“One of the most difficult things for young children is his/her inability to attend school while in treatment. Children seek out interaction with peers and should be provided safe opportunities to do so. Children exert energy, stress, and express themselves through play. Let them play; we must remember that they are children,” Nick says.
The Center has a special teen support group. Nick says, “The purpose is to provide friendship-building opportunities for teens with similar experiences.” So the adolescents have fun together going bowling, playing laser tag, going to theme parks, camps and the prom.
Being with kids with cancer
“I think that it is important to remember that your child will pick up on your emotions and demeanor, so be honest. Don’t be afraid to seek help in coping with your own emotions," Nick says.
"Tell the truth. The truth may hurt in the beginning; however it will build that trust needed to get your family through the toughest times”
He continues, “Don’t be afraid of those difficult conversations, if you are not confident in having them, please seek out support from your Child Life Specialist or Social Worker.
When possible, Nick urges parents to let their children make some decisions.
Finally, Nick suggests, “Ask yourself the question, ‘Do they understand what I just said?’ Make sure to pay attention to your child’s feelings, validate them, and reassure them of your consistent support and love.
dailyRx News would like to thank Nicolas E. Gonzalez, MS, CCLS, CEIM for taking time away from caring for the kids to talk with us about talking to kids about cancer.