Dear Parent,
While adjusting to the news, you want to ensure that your child is making wise decisions. Here's the challenge: You aren't in charge anymore. This handout offers insights and tips for helping your child (1) do what needs to be done medically and (2) connect with designated school officials trained to assist students facing a health crisis and, at the same time, helping you (1) keep the lines of communication open with your child and (2) take care of your own needs.
What if you feel overwhelmed?
Focus on learning about the many challenges your child is facing. Access online or in-person resources devoted to so-called AYAs-adolescents and young adults with cancer-where you'll find expert advice from professionals and tips from families who successfully walked this path.
What does your child need to do right away?
Encourage your child to obtain timely, expert cancer care. With your child's permission, participate in discussions about medical-care options with the doctors who made the diagnosis (via phone, telemedicine, or in-person) and/or with your child's primary care doctor.
Your child needs to find out:
* "What are my immediate medical needs, if any?"
* "How quickly do I need to begin cancer treatment?"
* "Do I need to do anything now to preserve my future fertility?"
* "Is it safe for me to travel and take time obtaining second opinions or considering clinical trials?"
What should your child do about coursework?
Addressing your child's cancer is the top priority. That said, your child's college career matters, too. Laws protect your child's privacy even if your child wants to share everything with you. Faculty and staff are generally not permitted to talk with parents without proper legal releases.
Encourage your child to take a few steps immediately:
* Notify the Dean of Students, who can then notify faculty. Or your child can then notify faculty directly.
* Contact the Office of Accommodations (other names: Office of Accessibility or Office of Disability).
* Find out about students' rights and academic options.
* Contact the office of financial affairs to learn about options for part-time study, medical leave, tuition reimbursement, and maintaining or obtaining scholarships.
Explain to your child that getting the ball rolling now will decrease stress when making the cancer-treatment plan. Your child will be prepared to weigh realistic options about school and make the best decision.
What if your child is too ill to think about school?
Your child's oncologist can provide documentation that enables you to work directly with school officials if your child is too ill to manage forms and decisions.
What about your own emotions?
Take comfort in knowing you won't always feel like this. To help you sound calm and confident with your child, find safe places away from your child to say aloud what's in your mind and heart, preferably with people who listen without falling apart or shutting down your painful emotions like fear and grief.
If too distraught right now to help your child, that's okay. Assign a trusted adult in your child's life to provide guidance and support until you feel ready. Meanwhile, to help you think and act more like your usual self as you adjust, consult your primary care physician about short-term medication and/or crisis counseling.
What if your child is not coping well?
Steel yourself to listen calmly and without judgment to your child's reactions and concerns. Validate fear, anger, anxiety, confusion, and other emotions as normal, expected, and temporary. Express your ...
* Confidence in your child's ability to get through.
* Encouragement of counseling as helpful in times of stress.
* Readiness to listen to, guide, and support your child in whichever ways help.
Despite the dramatic ways this diagnosis changed your life, it helps to acknowledge that the illness is happening to your child, and not to you. Each child's needs are unique, so listen closely: Does your child want to control as much as possible-or to have you take over and make all decisions? Either way, support your child's ownership of the illness. Ownership helps maintain a sense of self, which facilitates continuing the path to full adulthood despite the potential setback.
What if your child seems unconcerned?
Ask yourself: Is my child receiving timely and expert medical attention? If yes, don't suggest something is wrong if your child is not upset or afraid. Many reasons can explain calmness after a cancer diagnosis. It's fine if years from now your adult child tells you, "Back then, I didn't realize the significance of my diagnosis."
What about siblings?
Patients' siblings often become innocent bystanders in the cancer drama. Research shows that siblings (even very young ones) (1) know something serious is going on and (2) have increased needs. As a parent, you can help minimize the negative impact of cancer on siblings by...
* Informing them about what's happening in truthful-yet-hopeful language.
* Reassuring them that their needs matter and will be tended to.
You may not have time, opportunity, or emotional reserves to address siblings' needs right now. Delegate those tasks to an adult they trust who can do it the way you want. Your job is to ensure their needs are tended to-not to fulfill them all yourself.
What now?
Assemble a team of people able to provide practical support (e.g., help with housework, meals, childcare, eldercare, doing research about cancer treatments, filing scholarships applications for students with cancer). Find people able to provide you with emotional support. Keep in mind that cancer is an illness, not a death sentence. Every day, nourish hope that your child will be one of the many college students who undergoes cancer treatment and graduates to a full and happy life.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.