Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships
Monday August 28, 2023
Retinoblastoma can have a profound impact on family relationships, during diagnosis and treatment, and throughout life. Linda Conyard MGestT delves into the factors affecting relationships, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
Childhood cancer, especially eye cancer or retinoblastoma (Rb), can have a profound impact on family relationships. When our second child was diagnosed at 6 months of age, I had no idea children got cancer (that was 35 years ago)!
I will explore the challenges faced by families dealing with childhood eye cancer, as well as the factors affecting relationships and how families experiencing this difficult journey may best be supported, while remembering that every family is different! We will delve into the insights provided by attachment theory and its relevance in understanding the dynamics within these families. I wish I had known about attachment theory before the trauma of having a child diagnosed with retinoblastoma.
Childhood Eye Cancer’s Impact on Family Relationships
Retinoblastoma is a rare, life-threatening cancer affecting young children, typically under five years of age. An Rb diagnosis is emotionally distressing for parents and can lead to significant changes in family dynamics. The treatment usually requires extensive medical care, and families are often separated due to the need for regular medical appointments, which can lead to increased stress, emotional and often financial strain on the family.
Impact on Parents and the Child
Parents face immense emotional turmoil and trauma upon receiving a diagnosis of retinoblastoma. The diagnosis forces parents to navigate the complexities of treatment decisions, financial burdens, and emotional support for the child, and other children, as well as try to care for their own emotional needs.
Prior to my child’s diagnosis, I knew something wasn’t right, and at the same time, I experienced my child as a healthy, happy baby. The fear of loss and uncertainty can lead to feelings of helplessness and frustration. Sometimes, before my child had to go to the hospital for surgery or a check-up, I would go into their bedroom and imagine if they never slept in their own bed again or played with their toys again. I was somehow trying to prepare myself for the absolute worst that could happen – that they died.
While the parent/s are going through whatever their experience is, the child is also always picking up on their parent’s feelings and having their own reaction to that parental anxiety, stress, fear or trauma response. This impacts their attachment to their parents.
Impact on Siblings
Siblings of the affected child can also experience a range of emotions. They might feel neglected as the parents’ attention is focused on the ill child. Siblings may not fully comprehend the severity of the illness, but can still sense the family’s distress.
On one family visit to my husband’s mother, she gave something to our child who had cancer and not to our other child. In the car on the way home, our first child said, “I wish I had cancer.” There are only two years between my first and second child. Young children don’t understand the complexities of a life-threatening illness, but they do notice how differently sick children are treated.
When my oldest child uttered those words, I resolved that they would never experience that again. I told my mother-in-law not to do it again and shared the impact it had, even though unintentionally, on my child.
Taking both children to preschool also impacted our first child. By this time, our child with Rb was totally blind. Parents from the preschool always spoke to our blind child by saying hello and addressing them by name, which was lovely. But they rarely engaged with our older child, who was standing right there with us. It was like our older child was invisible.
I arranged with the preschool teachers to come later, after other parents had left, so I avoided this challenge. In hindsight (which we all have a PhD in), I could also have arranged education for the parents. I must admit I did not have the capacity to even consider that as an option.
These changes in sibling dynamics can lead to feelings of guilt, hate, confusion, and disturbance of how they see themselves.
Extended Family
The extended family can also be significantly impacted by childhood eye cancer. Grandparents, aunts, uncles, and cousins may experience shock, grief and a sense of powerlessness. Some extended family members may take on caregiving roles or offer emotional support, which can bring them closer to the affected family members. Others may struggle to cope with the situation, leading to emotional distance.
As the parent of a child with cancer, you may even find yourself having to look after others who look to you for guidance, telling people what you need or even helping them with their feelings.
I believe that whatever the family dynamics already are in the extended family, at the time of stress, these dynamics will be exacerbated.
Aspects Affecting Relationships
Let’s explore several aspects of relationships that may play a crucial role in determining the impact of retinoblastoma on family relationships when living through diagnosis, treatment, and ongoing care.
The most important part of this exploration is to create understanding for yourself and your family, not to bring any kind of judgement or feelings of what should have been done. It is important to remember that you can only do your best with what you have available to you at the time.
Communication
Open and honest communication is most needed in times of crisis. Families who can openly discuss their emotions, concerns, and needs are more likely to navigate the challenges together in a supportive way.
However, there will also be an established pattern of communication within the family prior to the diagnosis. Families will use their default way of communicating, which may or may not be supportive.
If communication within a family often leads to misunderstandings, frustration, and feelings of isolation, this is more than likely what will happen in this traumatic situation.
“The way we do anything is the way we do everything.” Martha Beck.
Managing Yourself
“Coping” is the word usually used here. This word brings up tension in my body because I believe it has a negative connotation, and I feel judged when this word is used.
Anyone who gets through significant adversity deserves a high five. How you survived it was the best you could do with what you knew at the time. As far as I’m concerned, there is no right or wrong way. There is only your way!
Here’s a little background for why I avoid the word coping.
When our child was in the hospital, I always stayed, and provided loving care – feeding, bathing, changing, and holding my child close. I slept in a chair every night while my other little one was at home with Dad, and I only saw the nurses when they came to do observations. One day, while sitting with my sleeping baby, I picked up their chart from the end of the bed, and I read these words; ‘Mother not coping’!
I was shocked. I started to wonder how I wasn’t coping, because I didn’t see anyone from the medical team often, so how did they know this? I can’t recall who wrote the note. It did make me sure that I never spoke a word about how I was feeling.
What’s the benchmark for coping with such a trauma? AND who set that benchmark? I just want you to know that you will do, or you have done, your very best with what you had/have while going through this incredibly challenging and traumatic life event.
Support
Supporting families at-risk of trauma as they deal with a cancer diagnosis requires a comprehensive and compassionate approach that addresses their emotional, practical, and psychological needs. Here are several strategies to help families navigate through the challenges:
Psychosocial Support
Offer access to mental health professionals experienced in working with families facing cancer trauma. Therapists can provide a safe space for family members to express their feelings, fears, and concerns.
They can also create more stress.
For example, when I asked a hospital social worker to see a picture of someone who had the operation my child was about to have, they told me they didn’t have any. It felt more like they had decided I shouldn’t have this information. This amplified my stress, and I never asked for anything else.
Clear and Honest Communication
Provide clear and accurate information about the diagnosis, treatment options, and prognosis with kindness and compassion. Encourage families to ask questions and share their concerns. Clear communication helps reduce uncertainty, and empowers families to make informed decisions.
Education
Provide resources that educate families about childhood cancer, treatment procedures, potential side effects, and coping strategies to live through the experience. Knowledge empowers families to actively participate in their child’s care and make informed choices.
Peer Support
Connect families with others who have gone through similar experiences. I have been part of these groups as I’m sure many of the readers are. I imagine you know the value of this connection.
Practical Assistance
Offer practical help to alleviate the stress of daily life. This can include providing meals, transportation to medical appointments, and assistance with household chores. Practical support allows families to focus more on their child’s well-being. Don’t forget the incredible value of just being present and not trying to fix what is.
Flexible Work Arrangements
Wherever possible, it will be helpful for working parents and their employers to consider flexible work arrangements that accommodate the demands of medical appointments and treatment schedules. This can help reduce additional stressors.
Respite
Offer respite care for parents to take breaks and recharge. While this one didn’t work for me, it is an option that may work for others.
Financial Assistance
Childhood cancer treatment can be financially burdensome. Connect families with resources for financial assistance, such as grants, foundations, and non-profit organizations that provide support. This may be for medical expenses, travel and hospital housing, household bills and other financial assistance.
Sibling Support
This is incredibly important. We were involved with Camp Quality, and accessed their Sibling camp. Siblings also experience emotional challenges and will need ongoing support.
Remember that each family’s needs are unique, and a personalized approach is crucial. By offering comprehensive support that addresses emotional, practical, and psychological aspects, healthcare professionals, support organizations, and communities can help families navigate the potentially traumatic experience of a cancer diagnosis. Some families may have a strong network of friends and family and not require much additional support.
Attachment
I really wish I understood this when my children were young. Attachment theory suggests that early relationships with caregivers can shape an individual’s attachment style and influence their adult relationships.
Children who experience secure attachments with their parents tend to have healthier relationships later in life. Childhood cancer and prolonged hospital stays can disrupt secure attachment bonds, and lead to anxious, avoidant or disorganised attachment styles.
I’m going to go a little deeper with this because when I understood attachment, it made so much sense of the dynamics that occurred in my own family.
Attachment Theory and Childhood Eye Cancer
Attachment theory is critical when examining the impact of childhood eye cancer on family relationships. This is a vast topic; I will just touch on it here.
According to attachment theory, children form emotional bonds with their primary caregivers, usually their parents, to seek safety and security. These early attachment bonds influence the child’s emotional development and behaviour in later life.
Secure Attachment
Children who have a secure attachment style with their parents may find it easier to deal with the emotional challenges of cancer treatment. They are more likely to express their feelings openly, seek support from their parents, and trust that their needs will be met.
Similarly, parents with secure attachment styles can provide a nurturing and supportive environment for their children, fostering emotional stability.
Children being screened for or diagnosed with retinoblastoma are often aged from birth to 18 months old. They have had very little time to develop a secure attachment before they are consumed by hospital environments and invasive medical procedures. The opportunity for secure attachment has been interrupted or challenged.
Anxious Attachment
It is easy to see how children who experience everything involved in retinoblastoma diagnosis could develop an anxious attachment style. When this happens, they may exhibit clingy behaviour, heightened anxiety, and difficulty calming down during medical procedures.
Parents with anxious attachment styles may become overly protective or exhibit inconsistent caregiving patterns, which can further exacerbate the child’s anxiety.
Avoidant Attachment
Children with avoidant attachment styles may withdraw emotionally in response to the stress of the cancer experience. They may try to cope manage independently and avoid seeking comfort from their parents or caregivers.
In turn, parents with avoidant attachment styles may struggle to express emotions openly or provide emotional support, unintentionally reinforcing the child’s emotional distancing.
Disorganised Attachment
Disorganised attachment refers to a unique and challenging attachment pattern observed in some children, particularly those who have experienced traumatic or unpredictable caregiving experiences.
The overwhelming stress and uncertainty surrounding the cancer experience can disrupt the child’s sense of safety and trust, leading to disorganised behaviours in seeking comfort or support. The child may exhibit contradictory reactions, showing both anxious and avoidant behaviours towards their parents, reflecting their internal conflict and confusion.
The child’s emotional response to the cancer diagnosis, treatment and surveillance care may be complex and challenging. They require sensitive and specialized support to foster a more secure and stable attachment bond.
A disorganised attachment in parents can stem from their own unresolved trauma, loss, or adverse experiences in their early life. As a result, they may struggle to provide consistent emotional support and caregiving, particularly during times of extreme stress and uncertainty.
When faced with their child’s cancer diagnosis, parents with a disorganised attachment may exhibit conflicting behaviours and emotions. They may oscillate between being emotionally available and responsive to their child’s needs, and withdrawing emotionally or responding in unpredictable ways.
The disorganised attachment style in parents may also affect their ability to communicate effectively with healthcare professionals, make treatment decisions, and advocate for their child’s needs. Unresolved emotions from their past experiences may interfere with their ability to process the emotions related to their child’s illness.
This attachment style will overflow into schooling, workplace and other environments.
Attachment disturbances have a profound impact at the time of the traumatic experience. They also continue to impact every aspect of the child’s life – unless we know about the importance of attachment and take steps to heal from the trauma.
I believe we can change our attachment style.
I have come to understand that I was my child’s safety, and I was also my child’s threat or danger because I would leave them to strangers and in strange environments. This caused confusion in the attachment.
The First 3-5 Years in a Child’s Development
Because our children are usually diagnosed in the first years of life, I would like to touch on yet another vast topic; Child Development.
The first 3-5 years of a child’s life are a period of rapid growth, laying the foundation for their physical, cognitive, social, and emotional development. During this critical time, children undergo significant milestones and acquire essential skills that shape their future growth and learning capabilities.
Physical Development
In their first years, children rapidly go from being completely dependent on caregivers to gaining mobility, learning to roll over, sit up, crawl, and eventually walk independently. Fine motor skills improve as they learn to grasp objects, hold utensils, and engage in basic self-care activities, such as copying how to use a face cloth in the bath, and wiping their own face after they have eaten.
Cognitive Development
Cognitive development in early childhood is characterized by rapid brain development and the acquisition of fundamental cognitive abilities. Children develop object permanence, which means they understand that objects continue to exist even when out of sight. Their language skills blossom, and they start using words and simple sentences to communicate. They explore cause-and-effect relationships, and begin to problem-solve.
Social and Emotional Development
The first 3-5 years are crucial for social and emotional development. Children develop attachments to their primary caregivers, forming strong emotional bonds that provide a sense of security. They learn to identify and express emotions, and start to recognize emotions in others. Early social interactions with family members, peers, and caregivers influence their ability to form relationships and develop empathy.
Still Faces Experiment
Dr Edward Tronick’s Still Face Experiment is a well-established study on infant development and attachment. His work has had a significant influence on the field of developmental psychology. The video below shows how quickly young children can become disturbed if they feel they don’t have security.
The key part, I believe, is when the mother re-engages with the child, and the child feels that connection again. Problems occur when the child doesn’t get the opportunity to feel the reconnection. They then creatively adjust themselves to survive their experience.
The Link Between Family Systems and Illness
I’d love to introduce you to Stephan Hausner’s work. I heard about him while studying Family Constellation Work. I met Stephen a few times over the years at the Australasian Constellation Intensives, and he facilitated a constellation around my child’s illness, which was amazing and would take far too long to share here.
Stephan explores the link between family dynamics and illness. He emphasizes the importance of systemic constellations in understanding how unresolved family issues can manifest in physical and emotional health challenges.
Systemic constellations, as discussed by Hausner, are a therapeutic method that helps uncover hidden family dynamics and intergenerational patterns. It involves setting up a representative model of the family to reveal underlying conflicts, loyalties, and unresolved issues that may contribute to illness.
Stephan Hausner’s work on family systems and illness, as seen in his book “Even if it costs me my life”, offers valuable insights into the connection between family dynamics and disease.
One last thing…
I am currently writing my first book called UNnecessary Trauma, The Silent Assassin Infiltrating our Health, Education, Justice, and Government Systems. It highlights how our systems can, and do, cause UNnecessary Trauma. I use my own lived experience to show this. My intention is to create awareness of the potential to cause harm while in the service of others.
References
Bowlby, J. (1982). Attachment and loss: Vol. 1. Attachment. Basic Books.
Bowlby, J. (1973). Attachment and loss: Vol. 2. Separation: Anxiety and anger. Basic Books.
Bowlby, J. (1980). Attachment and loss: Vol. 3. Loss: Sadness and depression. Basic Books.
Hausner, S. (2011). Even If It Costs Me My Life. Gestalt Press.
Santrock, J. W. (2014). Child development (14th ed.). McGraw-Hill Education.
Berk, L. E., & Meyers, A. B. (2016). Infants, children, and adolescents (8th ed.). Pearson.
UNnecessary Trauma: https://lindaconyard.clickfunnels.com/unnecessary-trauma-silent-assassin-page
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About the Author
Linda Conyard educates women, female entrepreneurs and leaders on the importance and transformational potential of recognising and healing UNnecessary Trauma.
Linda’s mission is to help 10,000 women sustainably change their lives. And be a catalyst to eliminate UNnecessary Trauma from the world through Trauma Sensitivity education and training.
Linda’s daughter survived bilateral retinoblastoma. She is increasingly interested in the systemic aspect of such conditions, and continues to explore her own family system for a deeper understanding.
Linda has a Master of Gestalt Psychotherapy. She is a Family Constellations Facilitator and specialises in Trauma Recovery and Transgenerational Issues. She is passionate about Trauma Sensitive Practices and Care becoming part of all major systems, including health, education, legal and government. Linda is an Amici (friend of the dying) and has studied Contemplative End-of-life care and Midwifing Death.
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