“Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all.” Emily Dickinson
Hope is sometimes hard to come by in the early days of a cancer diagnosis. There are so many ups and downs. Of course, you hope that your child will be treated, survive, and get back to the life he or she was living before cancer. But some moments, you worry this won’t happen. This is normal. It is normal for your child and others in your family to have these disparate feelings – sometimes feeling it will all work out and other times wondering, “what if it doesn’t?”
Children look to their parents to feel that you believe they will get better. It is important to remember that most children with cancer do get better these days. Sometimes your children will lean on you and want you to reassure them they will be OK.
Sometimes, you may feel like your hope meter is running low and you may need to lean on a spouse or partner, a friend, a doctor or nurse to get back to feeling hopeful. This is normal and is something important others can do for you. This is what is termed, “social support.” We all need social support.
The more you can keep the framework of your family life intact, the better. This especially helps small children, but everyone in a family feels better if not everything changes when a child gets sick. Having at least some expectations that family members will do as much of what they used to as possible helps everyone feel that the world hasn’t altogether changed. Of course, so much is different, so this is all relative. But if you can keep some rituals and some expectations consistent, it will help your sick child, your other children, and you.
Your presence will be a source of comfort. If your child is in the hospital, especially a hospital far from home, of course you will want to be with them. The more you can be there, the safer and better they will feel. Of course, you can’t be in two places at once, so if you are in the hospital far away, you can’t be at home with your other children and they will miss you. But these are the choices illness makes necessary. You and your spouse or partner, or whoever is helping you with your other children, will work out ways for you to perhaps rotate your presence or to stay in touch with the children at home.
Your child still needs you to set limits on what is OK. This may be very difficult. Before, when your child was sick or injured, you may have reduced these expectations. He or she may have stayed in bed, gotten pampered, and were up and about and back to regular expectations and discipline in a short period of time.
This time, it is different. Cancer treatment is long, and it is important to your child’s sense of well-being that you define new, appropriate expectations and limits for what is acceptable behavior. There can still be exceptions for days or times when your child feels physically very sick, but on a regular basis, you can convey more positive, hopeful messages by defining what you expect them to do and what limits to their behaviors you expect. If you lower your expectations, you send a message that may convey less optimism than you really feel.
- Discipline reinforces a sense of normalcy – continued predictable expectations, despite all the changes in the child’s life. For instance, if the child is playing with a sibling, he or she still must learn to share or be respectful.
- For older children, discipline emphasizes the importance of following through on commitments (homework, clubs); treating parents, siblings and friends with respect; maintaining family roles. This maintains an older child’s sense of belonging, being useful, and contributing.
You may want to be with your child all the time. With small children, they may want you there all the time. With older children, it is important to realize that they have little privacy in the hospital; they are dealing with many more people having access to their bodies than usual which can feel embarrassing. So, it may be important, when you can, to give them privacy in talking to their friends, changing their clothes, and being alone sometimes.
Older kids may also want to feel they are involved in important decisions made about their medical care. You can help make sure that happens. This doesn’t mean you can’t sometimes speak to the doctor without your child, but trying to encourage the doctors to talk directly to your child, not about them, may help make your child feel they are not invisible and that they are involved in their own care.
Help Manage the Illness, the Hospital, the Doctors/Nurses/Meds, etc.
You can be the mediator, the translator, and the protector of your child as you all learn to live in a medical world. But, just as you did when they entered a new world when they weren’t sick (ex. a new school), you can help them, but you also want to encourage them to act independently and make their own relationships within that environment. When your child runs into trouble, when they hit a wall and can’t figure out how to work something out, or when you can see that something is not right, you speak up to the right person and help to make things as smooth as possible. But, like everything else in parenting, it is a balancing act to try to find just how much to encourage and how much to step in and act.
Help Manage Difficult Days or Transitions
Some things which you might not see as the worst things may be very difficult for your ill child. For a teenager, this might be the day his or her hair falls out. Your perspective is that your child’s hair will come back and you might even see their hair loss as a sign that the chemo is having its effect. For a teenager, especially a girl, losing hair can feel like the end of the world.
- Talk to the staff about what has helped other teens get through this. In anticipation of this day, talk to your child about what might help. Do they want to cut their hair short or even have their head shaved to anticipate the hair loss? Do they want a wig or prefer scarves? If the latter, begin to gather scarves they like, and find someone to teach them to tie the scarf. Try to be sensitive to how hard this is;
- Be tolerant around this period of irritability;
- Be supportive of how upsetting big changes are and remind them how beautiful they still are; and
- Encourage them to talk to their friends, other patients, and any survivors (now with full heads of hair) who may be in the hospital or clinic.
Recognize When Your Child Needs Psychological Help
It is normal to see changes in your child as he or she adjusts to having cancer and undergoing treatment. However, some problems, like self-harm, should trigger an immediate consultation with a mental health professional. If you feel that your child is not adjusting, seems very unhappy and withdrawn, or is overly oppositional or not taking their medicine after the first month of treatment, introduce him or her to a psychologist or other mental health professional.
This can help give your child the sense that there is someone who could be there for them as they go through treatment. It may also allow the psychologist to assess your child in light of the other children with cancer. The psychologist will be able to tell you if the problems your child is having are typical or if they should, perhaps, see your child for a while to better understand and help with the stresses your child is feeling.
How Do I Get My Child the Help He or She Needs?
There should be a social worker who is (or could be) assigned to your family at the hospital or clinic. This person can help you or help you find others to treat your child – and other family members if needed.
If these services are not part of your hospital or clinic, ask your doctor to make a referral to the Psychiatry Department at the hospital. In the community, there may also be a Wellness Community group that helps cancer patients. Members of that group may be able to suggest local mental health professionals who could see your child. The school guidance counselor or psychologist may also be a source of good referrals, and a friend you trust could talk with people locally and report back to you about potential mental health professionals who could see your child.