When a child’s brain tumor is diagnosed, parents are left reeling with shock and trying desperately to get a handle on the situation and their emotions. In addition to facing their own fears, parents must also work hard to keep the child feeling safe as testing and treatment begin. Meanwhile, treatment options, insurance issues, and family communications all require extra attention, even as daily life rolls on.
It’s extremely important to talk openly about the diagnosis with your child and his/her siblings. Communications should be age-appropriate – tell the child as much as he or she needs to understand, but don’t over-explain. Your tone of voice should be matter-of-fact, and your emotions should be in check.
- Make it clear that it is not the child’s fault that he/she has a brain tumor. It is not uncommon for a diagnosed child to feel guilty about it, especially when he/she sees how upset the parents are.
- The ill child often takes emotional cues from the parents, so stay positive and hopeful when talking with your child. If you are sobbing and fearful, it will amplify the uncertainty the child is feeling, making him or her feel frightened and unsafe.
While the ill child will turn to you for strength and love, he or she may have fears and feelings that you do not. Missing the Valentine’s Day party at school may seem unimportant to you, but it can feel devastating to a child. Children of all ages may have reactions to the situation that parents find perplexing.
- Very young children often cannot fully understand what’s happening to them. They are often afraid of being separated from their parents, and afraid of being hurt by the tests or treatment. They can’t understand why their usual activities may have to be restricted. They may act out by throwing tantrums, or being excessively clingy.
- School-age children are better able to understand what’s happening. Used to a world that centers on school, friends and activities, they will have a hard time accepting the disruption of illness, and will mourn everything they are missing. They may express a lot of anger and resentment of the situation, and rely on family and friends for support and amusement.
- Teens with brain tumors often chafe at the loss of independence that a serious illness brings. They miss their social world and rely heavily on the support of friends to maintain their sense of identity. Their emotional reactions are often very intense, and their situation can lead them to ask some big questions about spiritual matters.
When a child is diagnosed with a brain tumor, the whole family takes on the fight. The ill child’s siblings are equally affected, though in different ways.
- Naturally your primary focus is going to be on your ill child. However, it’s important to ensure that your other children’s emotional needs are not neglected. If they are used to you cheering them on at sports events or volunteering at their school, they will feel your absence keenly. Carve out special time with each of them, even if it’s just going for a walk, so you can listen to what they’re thinking about. If you can’t attend their events arrange for a grandparent or other important adult to go, so the child doesn’t feel abandoned.
- Siblings are also worried about the ill child. They deserve to know what’s happening, explained in an age-appropriate manner. Try to involve them as much as possible in their sibling’s life in ways beyond making them sit and wait in hospital rooms and doctors offices. Reading a good book aloud to the family can become an enjoyable ritual that all children, sick and well, can enjoy together.
- It is natural for siblings to resent the situation and the ill child. After all, their lives have been turned upside down too, and it may seem to them that they will never be as important as their ill sibling. Just as you advocate for your ill child, so too should you advocate for your well ones. Remind grandparents, friends and even the medical team to acknowledge the siblings and reach out to them. Create a support network of friends and family for them that will offer some normalcy as well as some opportunities for fun.
Dealing with a pediatric brain tumor requires swift, decisive action. It also requires a level of organization and management that you may never have had to achieve before.
- If there isn’t a pediatric oncology center in your town, you may have to travel to get treatment. Therefore, your treatment plan not only includes protocols, it also must include transportation, lodging for you, supervision of the family at home, insurance issues and a host of other factors that you never had to think of before, but must nail down quickly. Your doctor’s office or hospital social worker should be able to help you navigate the details to get you to your destination. For the home front, a family member or close friend should be on call to step in and help with the day-to-day running of the household in your absence.
- Keep thorough records of your child’s treatment for the future. Your adult child’s doctor will need to know about the tumor and how it was treated, in order to keep an eye out for any late effects that can surface in adulthood. While medical records can be easily shared and transferred among doctors and hospitals, it is in your child’s best interest to keep your own records, in case quick access to information is needed.
As you support your child through this journey, you will be the one to take charge of his/her education, both during and after treatment. Since the child’s regular routine – especially school – is sidelined by the disease, it will be up to you to help establish an environment that ensures the learning process continues even when conventional schooling isn’t possible.
- While the child is being treated, create a daily routine that engages his/her mind and offers learning opportunities within the parameters set by the medical team. Cognitive therapy sessions may be a big part of this routine, and can help the child relearn some functions that were affected by the tumor. Outside of therapy, your child will benefit by reading with you, playing math games and exploring topics of interest. With the internet, it’s possible to create a course of study on almost any topic, including “field trips” to places of interest, even while confined to home or bed.
- Depending on the placement of the tumor, some of your child’s cognitive abilities may be affected. Even after treatment and therapy are completed, it’s possible that your child’s mental abilities will be altered in some way; perhaps information will be processed differently, or behavioral changes will occur. It’s important to accept any changes and support the child as he/she adjusts to the “new normal.” It’s equally important to let go of any preconceived ideas about your child’s future – perhaps your child used to show every sign of becoming a brilliant engineer, but now has difficulty with analytical skills. Instead of dwelling on the past, help the child find new interests and talents.
- Your child’s return to school will require a lot of careful attention from you, and frequent communication with the teachers, social workers and administration at the school. It is your job to make sure they understand any difficulties or limitations your child may experience – fatigue, physical weakness, difficulty focusing – and to educate them about how to help your child. Talk with your school about creating an individual education plan (IEP), in which you are part of a school-based team focused on your child’s needs. Explore different options offered by your school district – many have special programs involving therapy within the school setting.
It bears repeating that as a caregiver you really need to take care of yourself. It’s easy to neglect your own needs when faced with such a frightening situation as an ill child, but you won’t do your child any favors that way.
- If you have a regular routine, such as a daily jog or exercise class, try not to skip it. Not only is it good for you, it can also reassure your child that routines aren’t being disrupted and that everyday life is still normal. It also sets a good example for the ill child- you are demonstrating that it’s important to take care of yourself.
- If you need to cry – and you will – go ahead and cry. Just don’t do it in front of your ill child, who is already carrying a big enough emotional burden. Crying can be extremely therapeutic. However, if you feel that you can’t control your weeping, it would be best to consult a counselor, therapist or other health care professional to help you manage your feelings.