5 Things Parents Should Do if Their Child is Diagnosed with Cancer
Kristin Stegenga, PhD, Nurse Researcher in Hematology, Oncology and Patient Care Services
There are four words you never want to hear as a parent, “Your child has cancer.” As soon as those words are said, your world is immediately turned upside down. Life becomes a blur and it’s normal to feel a wide-range of emotion, which includes being shocked, scared, angry and sad.
Cancer can feel like a death sentence, but it’s not. Eighty percent of kids with cancer will survive. While the journey certainly isn’t easy, there are ways to help you and your family better cope with the diagnosis.
Speak with Your Children
The best advice is to be upfront and honest about the diagnosis and prognosis with your child. Let them know they’ll have good days and bad days.
How your child will react really depends on their age. It’s hard for toddlers and elementary-school aged children to really grasp the meaning of “cancer,” so they’re usually afraid of procedures and needles more than anything else.
Teenagers are usually scared in the beginning, because of the unknown. However, most teens tell me they get used to it, and it gets easier when they understand what to expect next.
Parents often think they’re protecting their child if they hold back certain information, but the truth is, kids are very wise. Make sure to have an open dialogue with your child.
The same goes for siblings. Many times other children in the family are unintentionally left out of discussions because they’re staying with relatives and not included in the day-to-day updates. Siblings can be just as scared, so it’s important they know what’s going on as well.
If your child is really sick, you need to have the tough discussions, such as death. Not talking about it can be detrimental. Speak with a chaplain, Child Life specialists, doctors and nurses for ideas on how to have age-appropriate conversations. Children are very smart and will ask us if they’re going to die. You shouldn’t avoid the topic, because many times they know anyway. Siblings need to be prepared too, because think about what it would be like if all of a sudden a brother or sister didn’t come home.
The worst situation is when nobody wants to talk about it.
Write Things Down
A lot of childhood cancers come on quickly and need to be addressed immediately. Parents should expect to receive a lot of information at once, which can be overwhelming. Write things down.
Write down information you’re given about the diagnosis and write down questions you have for the doctor.
If you have someone you trust, like a family member or close friend, ask them to be point person and write things down for you so you can just listen. Parents have told me it helps to have someone listen to the information with them to clarify anything they didn’t understand.
There’s a lot of misleading or outdated information on the internet, so I recommend speaking with your child’s provider before you Google the diagnosis. Ask your healthcare providers which websites have reputable information. If you see something contrary to what you’ve been told, bring it up with your care team. Don’t let it fester, and don’t worry. Most likely, it’s just old/inaccurate data.
Treat Your Child the Same
Do not spoil your child. People will naturally bring your child gifts, but keep it to a minimum. It’ll be better in the long run.
You need to have the same routines and expectations you’ve always had for your child. If all of a sudden the rules no longer apply, your child may think they were thrown out the window because they’re going to die, which statistically is not the case. It’s also not unheard of for siblings to wish they had cancer too, so they’ll be showered in presents.
Kids need to know that although they have cancer, their family is still going to expect them to behave appropriately. This also helps normalize their disease experience.
Take Care of Yourself
We all know the last thing on your mind when you have a sick child is yourself. But, if you don’t take care of yourself, you can’t take care of your child.
Most parents don’t want to leave their child’s side in the hospital, even when the child is sleeping, because they’re worried their child could wake up when they’re gone. It’s important to step out of the room, even for a few minutes, to get food, coffee or to take a walk. Find volunteers or nurses on the floor that could sit with your child while you do this. I know it’s hard, but it’s necessary to give yourself time to regroup or connect with other parents who are faced with similar circumstances. When you have a supportive system, outside your normal environment, you and your child will also adapt more quickly.
In the end, take a deep breath and know you’re not alone. The first couple months are the hardest, but it gets better.
Learn more about coping tips for families.
Learn more about the Pediactric Oncology Program at Children's Mercy.