Coping With Childhood Cancer

For a parent, there is nothing quite as unnerving as receiving the news that your child has been diagnosed with Cancer. Not only the parents are affected, but also the siblings and other family members. Life for the family instantly changes. Parents must be away from work. Siblings might need to be cared for by relatives or friends. The child (patient) becomes the major focus of family time and attention. All other concerns are put on hold. This all happens in a very short period of time. Families that have been and are going through this feel like they're on an emotional roller-coaster. These families all feel varying levels of shock, fear, guilt, sadness, anxiety, and anger. They are unprepared to handle the fact that the child has a life threatening illness. This is probably because the previous experience with someone they know who had or has a similar diagnosis is usually an older person, not someone as young or close to home as this diagnosis is. When a child or teen is diagnosed with cancer, families and parents will need to learn as much about the disease as possible. Most importantly, they will need to learn how to cope and move forward after the diagnosis, about dealing with the early and late effects of treatment, and about preparing for what may be down the road. It is very important to understand the effect this diagnosis can take on different members of the family. This would help the child (patient) as well. Mothers are usually the primary caregiver. If a woman is a stay-at-home mother, it makes sense that she be the one to take on these duties. It is also much more common for employers to accommodate a mother’s child care needs than a father’s. When work conflicts with caring for an ill child, some mothers take extended leave or quit their jobs. Mothers express the desire for a sharing in these duties, often believing that their husbands do not care about their feelings or are not involved. For them, support means the husband participates in the care of the child. In many cases, society expects that fathers should be strong and in control. They should make the well thought out decisions, no matter how stressed out by the situation they are. The pressure fathers put on themselves makes coping and resolving of issues more difficult for them, and sometimes their families. They feel like a failure. Traditionally, the father is the breadwinner and protects the family. When his child is diagnosed with Cancer, there is nothing he can do. A lot of men hide behind their job as a way of avoiding dealing with the disease, or their responsibility to the family at this time. It’s easier to work than let the emotions out. It’s bad enough dealing with the fact that your child has Cancer, but to see your family in such a state is terrible for fathers. To keep functioning, many fathers have to shut down emotionally. Instead, they talk about the plain facts about the disease or what the doctors have said. They sound very matter-of-fact. They tend to avoid showing their own feelings or emotions. Unfortunately, by not expressing their feelings and needs, these men cut themselves off from support they need. Being able to push your feelings aside temporarily can be a good thing, It allows both men and women to gain some distance and to avoid being overwhelmed. Interestingly enough, while mothers are jealous of what they perceive as the father having free time or a refuge from medical responsibilities, at the same time, many fathers report feeling jealous of the time the mother has with the child, in addition to the support and connections she has. As far as the diagnosis and actual medical treatment is concerned, it is best for the child to be treated by someone who specializes in the diagnosis and treatment of children's cancers - a pediatric oncologist. One of the first steps and most important steps a family can take toward coping with the diagnosis, is to ask questions. They need to remember that the doctors, nurses and the entire team of medical professionals are there for the child and for all of you. If someone doesn’t understand something about the disease or its’ treatment, ask questions. It’s a good idea to write both the questions and the answers down in a notebook or journal of some type. Going through all this can make it difficult to focus and trying to remember everything can be a difficult task at best. Doing this keeps all the information organized and easier for all those involved to refer back to. What type of questions to ask is up to the family, as there are many that may come to mind. For example, there will most likely be questions as the child goes through each phase. This would probable start with questions to clarify diagnosis and then move on to treatment options. It’s important the family makes sure all questions and concerns and addressed by the child’s medical team. As far as the kinds of questions to ask, they are varied and all are important. Parents would need to know the answer to these questions to properly proceed medically and to give them something concrete to help them as they learn to cope. Obviously the parents and family want to find out as much as possible about the type of Cancer that has been diagnosed, but they would also need to find out if any more tests would be needed, and if they would be painful. Once the tests are complete, it’s usually time to make a determination on what treatment regimen will be followed. They may be several different treatment options available. Depending on the age or maturity of the child in question, you would also want to keep the child involved as much as possible. After all, it’s their diagnosis and treatment being discussed. If a child sees that his family handling the situation, then the child can more easily cope as well. If the child has questions, it is important that their questions be answered as well, making it as easy as possible for them to understand. Children and teenagers often respond to the cancer diagnosis with a range of emotions that may reflect those of their parents. Some may become ill very quickly, have a lot of pain, or need to go through many tests. Some may need to travel far from home to see the doctors. Others may have to wait days or weeks to learn what is actually wrong with them. Some may miss school for a long time, or have to give up sports or other activities. Brothers and sisters may face sudden long separations from parents and each other. The family’s usual life and daily routines are changed. The child’s age, development, and personality also affect their responses. For example, a toddler with cancer may be afraid of tests and the treatments, which may be compounded because they are away from parents during these. Elementary school-age children may understand what’s going on, but feel angry and sad over what they’ve lost. As for teenagers, beyond the anger or sadness, there may be some rebellious behavior due to the feeling they’ve lost control, which in a way they have. Each child is different. Each child needs help to cope in a different way. This help is there for them with the doctors and psychologists that are part of their medical team. Be sure you get the help your family needs. Remember, everyone in the family reacts in their own way to the diagnosis of Cancer, especially when it concerns a child in that family. Everyone wonders how they will handle it. The parents worry about the child (patient), they worry about the other children and their reactions, and the patient even worries about their family….whether or not they will be okay while they are being treated. This being the case, it is important that everyone from the parents to the siblings, and especially the patient need to learn to cope. They all have their own way to do so. For adults, there are 2 types of strategies for coping that may be used. Action strategies focus on a concrete problem and are used to change a situation. Meanwhile, reaction strategies are used in situations that cannot be changed and focus on emotions (Woznick – pg 57). For example, as an action strategy for the parent, they might better organize all the accumulating records, contact information, and schedules that are now a part of your life. It puts something constructive in your control. As for a reactive strategy, while the child is in the hospital and is basically just waiting around for time to pass during treatment or tests and just waiting for the time to pass, you might bring in something for the child to do that they enjoy. If they enjoy reading comic books or watching Disney movies, bring them in and give them something to look forward to doing each day. This helps to keep them occupied with something pleasant during this time. Another major resource for coping for the family, is something that might not be too obvious, connecting with other families going through what their family is going through can be an excellent coping strategy. Because they know what the “newly diagnosed family is going through, it shows them that what is happening is perfectly normal for the situation. They mirror your own feelings, and on the most basic level, can help you through different situations that may emerge during treatment or during just the day to day living. They help to show the new family that they are not alone. They see how others are dealing with similar circumstances. Another coping strategy is to seek out official support groups. They can be located by contacting the social worker in the hospital that is assigned to your child’s case. An important thing to remember is that the siblings may be feeling left out at times. This is because all the attention has now been placed on the sick child. They understand this, but it doesn’t stop them from feeling left out, ignored or the like. The cure for this is to remember to keep them involved. Have the siblings help whenever they can with the care for the sick child, not just sit back and watch. It’s also very important to keep the siblings on a routine as close to normal as possible. For instance, have them stay involved in school, sports and the like. Be there for them. Take them to the movies and meals out. Make sure they have as close to normal family outings as possible. This way, they continue to feel that they are a major contributing part of the family. Some people cannot imagine leaving the entire experience behind them without using their knowledge or “giving something back” in some way. Many find satisfaction in donating time or money, or perhaps volunteering at hospitals and participating in events like “Relay For Life”. This can also be an important and very constructive way for all who were involved to get back to a ‘normal’ life that is now far from normal. The final thing to discuss is what happens after treatment is over. When the child is recovering from treatment and getting ready to resume some normalcy, encourage your child to stay in touch with friends. You should also stay in touch with their teachers and peers. After chemotherapy or radiation therapy, your child may be very tired and, therefore, need more rest Children who have cancer need and like to be with others their age, and keeping up with schoolwork makes them feel good about themselves. Children often worry about how their friends and classmates will act toward them, especially if they have missed a lot of school or return with obvious physical changes, such as hair loss or a missing limb. Other students are usually accepting, but they may have questions. Help your child to think of ways to answer their questions and to tell friends and classmates that they cannot "catch" the disease. Once the child returns home, it’s important to have your child to make their own choices as long as they do not cause problems with recovery. Treat the child the same or as close to it as possible as before their illness. Have them continue doing chores around the house, when able, and getting back as much as possible into their prior routine. Getting this sense of normalcy will go a long way towards coping with what has happened and anything that might come. As far as the future is concerned, keeping the lines of communication open is the most important thing I can stress. There will be follow-up exams and there will be the need to be aware for any side-effects that may happen due to the chemotherapy or radiation therapy the child has gone through. Being open and honest with yourselves and the family will help everyone in the family cope with what has happened. Discussing their fears for the future and what it may hold is much easier then dealing with the unknown. Staying in touch with the medical team and social workers even after treatment has ended, can be an important support system in itself, especially for the child. In this instance, knowledge really is power.

References

Bjork, M., Nordstrom, B., Wiebe, T., and Hallstrom, I. (2011). Returning to a changed ordinary life-families’ lived experience after completing a child’s cancer treatment. European Journal of Cancer Care, 20 (2), 163-169. Retrieved from DOI: 10.1111/j.1365-2354.2009.01159.x
National Institutes of Health, National cancer Institute. (2003). Young People with Cancer: A Handbook for Parents. Retrieved from http://www.cancer.gov/cancertopics/coping/youngpeople

Norberg, A., and Steneby, S. (2009). Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning. European Journal of Cancer Care, 18 (4), 371-380. Retrieved from DOI: 10.1111/j.1365-2354.2008.00976.x

Woznick, Leigh A. and Goodheart, Carol D (2002). Living with Childhood Cancer: A Practical Guide to Help Parents Cope.
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