A Parent's Roadmap
Learning your child has cancer is shocking, and you may not know what to do first. Start by learning more about your child’s exact diagnosis and meet with a nurse navigator or patient educator at your cancer center. Feeling informed will help you be more prepared to assist and advocate for your child and may offer some clarity during this uncertain time.
If your child’s pediatrician diagnosed the condition, a priority should be to find a pediatric cancer treatment team with extensive experience treating your child’s type of cancer. Ask your pediatrician to provide a referral, or contact local and national advocacy groups.
Seeking a second opinion is extremely valuable. Different doctors bring unique perspectives based on their own expertise. Understanding all your options can help you make more confident treatment decisions. Depending on your child’s diagnosis, it may be necessary to begin treatment right away. However, you can still pursue a second opinion. Treatment may be modified as new information is introduced or as the disease changes.
It is common to meet with many health care professionals at once. Though this can be overwhelming, remember that everyone is there to help your child. You are also a valuable part of your child’s health care team. Your goal is to make sure your child has the best care possible, and you have a voice in the treatment plan. It is key to build a good relationship with the team. Trust and transparency are very important and will help you feel more comfortable.
Clinical trials are often a treatment choice for children. Ask your doctor if a trial may benefit your child.
Maintaining Life at Home
While your medical team moves forward with the treatment plan, you can focus on parenting. Continuing to parent “like normal” may seem impossible, but staying in a routine is extremely valuable for everyone in the family. These suggestions may help.
- If your child is school age, arrange for tutors and remote studies. When your child can return to school, talk with the school administration and request additional resources, including emotional and social support, to ease the transition. Be sure to address learning or classroom difficulties early.
- Encourage your child to keep up with friendships. If the risk of infection is too great to see friends in person, kids can still stay connected through video games as well as phones and video chats. That may be how they prefer to hang out anyway!
- Explaining to your other kids that their sibling has cancer can be difficult. Be there to listen to their feelings. Set aside time for each of them to be with you and to do what they enjoy.
- Teens still need to feel like teens. Let them know you are there to talk or listen, but realize that it may mean giving them their own space to work out emotions with their friends or trusted adults.
Talking to your child about their diagnosis
Being open and honest helps build trust with your child. Children who are not well-informed about cancer can use their thoughts and imagination to fill in gaps. Often, these thoughts are centered around the idea that the diagnosis was their fault. This may cause your child anxiety or fear. These age-appropriate suggestions may help you inform and soothe your child.
- May be afraid of medical staff
- Are afraid of certain medical tests
- Need reassurance that their parents won’t leave them
- May be scared of the hospital becoming their home
- Are afraid of pain
At this age, you may be able to share some details with your child. Most children are afraid of pain. Though there is no way to change this, try to be up front with your child that some treatments may hurt but that you and the doctors and nurses will do everything possible to make it not be too bad.
- Can understand many specifics of cancer
- Are more likely to basically understand how treatments work
- May be more trusting of the medical team
- Will hear outside information about the disease through media
Be upfront with your child about treatments, and try to answer questions about medical procedures and any outside information.
- Can understand medical information
- Are likely to think about how the diagnosis will affect day-to-day life
- May want to make decisions about treatment
- May be concerned about fitting in or how their physical appearance may change
Allow them to do some of their own research using trustworthy sites, and let them know they have a say in what happens on the road ahead. Remind them of the things they still can do instead of things they can’t. Seek support for your child, yourself and other family members. Your health care team can recommend advocacy groups, counselors, clergy and other forms of support.
No matter the age, let your child know you are there for questions, concerns or just a hug. You may need the help of the medical team to provide answers, and that’s okay — no one expects you to know everything.