How can Parents Cope with a Child having Retinoblastoma?

Retinoblastoma is the most common visual cancer in children. Data says it affects around 300 children in the U.S. every year. The disease can be inherited and it can affect one eye or both eyes. The usual symptoms are altered discoloration of the pupil and strabismus that leads to medical attention. Succeeding appropriate diagnostic studies and care provided by a multidisciplinary team, including an ophthalmologist, a pediatric oncologist, a radiation oncologist, and a geneticist, among others, often result in optimal short-term and long-term care.

For children where the tumor is confined to the eye and has not spread systemically or into the orbit or brain, the cure rate is high. Other children with the genetic form of retinoblastoma, the risk is high for developing subsequent malignancies, most commonly sarcomas. While those children with the heritable form of the disease who were exposed to ionizing radiation at age less than one year this risk is greater. Genetic counseling in families with retinoblastoma is an important aspect in their care and should be coordinated with a medical geneticist or genetic counselor that is part of the retinoblastoma team.

Parents would do everything they can to try and keep kids from becoming ill or feeling pain. Though parents describe the day of their child’s cancer diagnosis as “the day their world fell apart”. When a child is diagnosed with chronic illness, it’s ordinary for parents to feel guilt and sadness. Anger is also common. You may feel angry toward your partner, the world or even, at times, toward your child. These feelings are normal.

Addressing your child’s medical condition directly is the best way to move forward. According to Norberg, A.L., Lindblad, F., and Borman, K.K. (2005), A study on parents of children with cancer, found those parents who took action and focused on the problem experienced lower levels of anxiety and depression than parents who denied or avoided the situation.

COPING WITH STRESS AND ANXIETY

There are parents who cope well with the stress and anxiety exerted by their child’s diagnosis and treatment. They usually reach within themselves to find strength and skills to traverse the experience. Parents should be aware of the effects such as trauma for the family, adjusting expectations and parenting styles according to their changeable needs. This is not one of those ordinary experience though. Most of these families undergo anxieties and short tempers, as well as periods of genuine calm. Most of them do survive the condition together and frequently emerge to make the family unit stronger and more understanding of one another.

DEALING WITH ANGER

Anger is a common reaction to retinoblastoma, but this cancer is mediocrity’s accountability. The cause of the genetic changes that spark eye cancer in children is unknown. When a child suffers, we usually result to find something or someone to blame most especially when we are not familiar on the illness the child is suffering. Parents would sometimes often unload their anger or rage on medical staff, their partners, through themselves, friends and relatives, and even their children. Unraveled rages can be especially destructive in times of crisis, especially when experienced by a child with cancer or their siblings. Be aware that you are more possible to have a short temper when you are under stress. Be upbeat in reducing or omitting stress, and know how to manage your anger or even to set aside your anger entirely, as this will lessen the risk of undesirable outbreaks.

COMMUNICATE AND VENT OUT

Communication is a great tool. If you have a difference with your child’s doctors, better to address and discuss your concerns immediately. By this, you are well composed and prepared to talk openly and deliberately compared to rush talk, tense or outburst once you bump into hallways. It is important to ask the doctor or nurse to explain things that you do not understand or things that you have discussed before to explain to you once again.

People respond more positively and calmly when you ask questions properly or discussions are not argumentative. Avoid to irritate the person, might be the doctor or nurse, when you have discussions. Talk to them early to avoid unnecessary misunderstanding and anguish. Make sure that when you talk, you take your time, especially when you’re talking to your child’s doctors or even your partner when you are both composed. The risk of discussions sinking into a slanging match is high when either of you is very anxious.

REACH OUT TO RETINOBLASTOMA COMMUNITY

Try to connect with other family. Sharing of experiences, discussions and small talks will help you feel relieved and the fact that you are not the only one experiencing this challenge is a great relief. Reaching with other families of children who have the same condition and same situation having diagnosed with retinoblastoma, and build relationships with them like read other children’s stories, talk with parents while waiting on clinics, join an online retinoblastoma community, join or start a retinoblastoma / cancer support group.

STAYING ACTIVE AND POSITIVE

Seek constructive ways to release your tension before it fall over into anger that will not only affect others but also yourself. Activities such as exercise, or dancing each day helps release tense and anxiety. Walking or running is another way to release tense. Some household chores like gardening, cleaning of clutter, home arrangement and even cooking and baking is a big help. Writing down your daily experience or video blog is also helpful working through anger and anxiety.

Releasing your feelings through voice in a safe environment like beach or climbing a mountain often eases their power over you. Try to breathe fresh air, it helps cease stress. Breathing exercises can rapidly reduce anxiety and stress. Solely taking a deep in breath and slow, regular out breath helps calm the body and focus the mind. Run-through this easy technique when you are already calm, to upkeep you in moments of crisis. Listen to soft music with a gentle rhythm is also a very powerful way to relax the body and mind.