In this powerful ASCO journal article, a mother reflects on how her family evolved from vulnerability to resilience during childhood cancer.
The childhood cancer patient is referred to as Ben, which is a pseudonym. The article explains, “Although this is the story of 4-year-old Ben, we believe that his and his family’s experiences are relevant to patients of any age who have cancer. (We preserve his anonymity to empower him to decide whether and how to tell his story of vulnerability as an adult.)”
Empowerment and resilience are the main themes in this article; and ASCO offers practical tips that could help many families who are feeling lost and vulnerable due to childhood cancer.
What does vulnerability look like
The article begins with Ben’s mother explaining what happened during Ben’s first round of chemotherapy: “We have been in the hospital for 14 days. Anxious and stressed, we are struggling to rearrange our lives.”
When Ben has any type of procedure or intervention he fights and screams to the point that three adults need to hold him still. Ben’s mother tries everything she can to calm him including play, music and art therapy, but nothing seems to work. “He knows what to expect when—the anticipation itself is toxic,” she explains. “Even hourly observations heighten his anxiety; Ben fears every passing doctor and nurse.”
Ben’s mother goes on to explain that she feels as though she is failing as a mother. She says she sees the treatment itself as the enemy. “I cannot remember the last time I slept, ate, or took a deep breath,” she continues. “I control nothing, dependent on a system and people I have lost faith in. My son and I are vulnerable beyond words.”
How to build resilience
The article goes on to explain that, “During a cancer journey, patients and their families can transition from vulnerability to resilience, or the ability to bounce back from hardship and then cope, move forward, and adapt.”
To help with Ben’s vulnerability, his parents and care team create ‘Ben’s treatment rules’, a list of his likes and dislikes. The list is then displayed on his hospital room door and includes rules such as: a) not too many people in his room at once; and b) silence during the treatment – he didn’t like it when nurses and therapists would try and distract him with conversation or games.
“Resilience depends on continuously open, respectful communication among the care team, patients, and families,” the article explains. “The care team may also need to help parents understand that they are still the same good people they were before the child’s diagnosis. This effort might include acknowledging that feelings of distress and failure are normal while celebrating moments of magnificent parenting.”
Further down the track, the nurses on Ben’s oncology ward offer kind words, praise and hugs to Ben and his family, especially after a procedure. This helps Ben’s mother rebuild her confidence so eventually she can administer Ben’s medicine to him herself.
As trust develops between Ben’s family and the care team, Ben’s mother becomes more proactive with medical decision-making and she joins forces with the medical team to increase her son’s sense of empowerment. “Ben was allowed to self-administer oral medication through his nasogastric tube and to control the rate of his own granulocyte colony-stimulating factor injections by telling the nurse when to stop and go.” This empowerment and sense of control also contributes to Ben’s resilience and lead to a decrease in resistance to treatment.
Ben’s mother says that this resilience helps Ben to transition back to school. She believes it has even made him a leader both academically and amongst his peers. On top of this, Ben is now more confident when it comes time for MRIs and other medical procedures.
“He bounces through the doors to greet his care team, excited to see his favorite nurses and play a special game that he and one of his clinicians invented together during those first weeks of diagnosis and treatment … he tells his anesthetist, ‘I have done this a 1,000 times, so I am very experienced. I will send myself off for a magic sleep. I will blow the balloon up so big this time that it will burst.’”
To end, Ben’s mother says: “The anesthetist looks to me and says, ‘I know only part of what Ben has been through, but I want to say to you that you have a very special, resilient, and brave little boy there. You should be so proud of him.’ And I am.”