When thinking about childhood cancer it is not hard to imagine the pain experienced by the entire family. From diagnosis parents, patients and their siblings live in fear of what lie ahead. Invasive procedures, sudden unexpected changes in the families schedule and isolation can lead to feelings of trauma. On March 20, 2019 Zlatina Kostova, PhD, from the Child Trauma Training Center at UMass Medical School joined the Parent to Parent support group for an important discussion on medical trauma for families of childhood cancer.
Parents, new and seasoned packed the room to better understand medical trauma and gain insight on how to help their families through it. Trauma, Kostova explained, is a real or perceived threat to yourself or a loved one, in this case one’s child. This threat causes an emotional and physiological response resulting in feelings of terror, helplessness and fear. During times of stress the brain releases hormones to help the body respond, fight or flight, when the threat is removed things go back to normal. Cancer treatment, however, is a prolonged process that causes the patient and their families to live in an extended state of fear. Living in a prolonged state of trauma can cause changes to the brain, hormones and behavior. Many people report loss of memory, difficulty with attachment, mood disorders and cognitive disturbances after a prolonged traumatic event. People often feel that they are always waiting for the next bad thing to happen.
Many families in the room opened up about their own feeling of fear as well as worrying about the state of their children. Parents raised concern for the child with cancer and their siblings, about separation anxiety, obsessive compulsive behaviors and depression and anxiety even long after the child has been in remission. Many parents themselves could identify trauma triggers, such as beeping sounds, smells, even certain times of the year, which can instantly send them into a state a panic. Some parents recall ‘falling apart’ at diagnosis while others felt they ‘held it together’ until the illness stabilized and then ‘fell apart’.
Other signs of traumatic stress discussed by Kostova include irritability, difficulty concentrating, hypervigilance, sleep disturbances, and dissociation. If you or your child are experiencing any of these symptoms it can be helpful to know that it is an expected response from the trauma your family is going and has gone through. It can be helpful for you to talk with your child about these feelings however depending on their state they may not be ready to open up. This is ok says Kostova, “You cannot force a child to talk.” You can help them recognize the associations and feelings.
Self-care is an important part of recovering from trauma, both for the parent and child. Reducing stress and anxiety through mindfulness and coping strategies is something anyone can learn to do for themselves. Kostova suggests that parents can help their children by encouraging them to talk when they are ready. Answer children’s questions honestly in an age appropriate way, listening for hidden worries and fears. Continue to participate in normal activities (such as school, friends) as much as possible. If trauma symptoms linger it is important to reach out for help. When looking for medical providers seek those who are specifically trained in trauma when you can. Trauma informed treatment will have a deeper awareness of your child’s condition. You can contact The Child Trauma Training Center for a referral to a trauma based therapist.
It has been shown that a strong social support network is the most important predictor of resilience for all members of the family. Kostova pointed out that all the parents in attendance were utilizing the social support of Why Me/Sherry’s House, and just by attending this group they are being proactive in addressing their family’s needs. Why Me offers many opportunities for social support in addition to the parent groups including, family fun activities, drop-in play dates, family dinners, or just a friendly place to chat with other parents going through a similar situation. We recognize the importance of social support, which is why family support services at Why Me continue to evolve and grow to meet the needs of each family member.
Once a Why Me family, always a Why Me family, because we know that while the end of treatment is met with celebration and some relief, the journey is far from over. Many parents in the room expressed even higher levels of stress and anxiety AFTER treatment had ended or at time when things felt more stable. Kostova explained that this reaction is typical. Many people who are dropped into a life threatening situation find ways to cope in the moment out of necessity of what needs to be done (again fight or flight) but when the dust settles your mind has time to process the events in a new way. New fears of relapse, long term effects and shifts in family dynamics become more prominent, prolonging the trauma that a family can experience. One mom, Tricia Campero explains,
“Many people feel that after our child has finished treatment all of the worries we have will have gone away. However, it is a hard transition not having the security of the hospital. The fear of relapse never goes away and it doesn’t take much to bring a child or parent back to that time when our stress levels were very high during treatment.”
While the effects of medical trauma on a family are long lasting, some parents also expressed a new appreciation for life and gratitude for the support they have received during this time. “Finding resilience in trauma can lead to growth,” Kostova shared. Post Traumatic Growth can work alongside trauma, not by eliminating the trauma but to make meaning of all that has happened.
If you or a member of your family are struggling with overwhelming feelings please know that you are not alone and that there is support that can help. Stop by the house for a visit, talk to your social worker and utilize the following resources to find the support you need for your family.
The Child Trauma Training Center at UMass
To learn more about Medical Trauma Dr. Kostova recommended the book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma