TABLE 2

The Infrastructure of Hope

ThemeExample
Hope as an action“Hope is a choice, it is a decision to not give up. Hope is not about outcome, it is about the fight.”
“Hope gives you the opportunity to dream and wonder about the possibility of your child beating the odds.”
Hope as a survival mechanism“Hope means I can be here even though here is an unthinkable place.”
“It was my way to cope in the moment and get through the next stage of whatever was happening.”
“Without hope and faith, I don’t know how any parent can handle a child being diagnosed with cancer.”
“Hope served as a bit of a survival mechanism for me in the darkest places of worry, sadness, and fear, there was the tiniest bit of light I would call hope…I can still remember how it feels in my heart. It is such a gift.”
Hope as validation of the “good parent” role“Being human parents, who could not fathom living in a world without our child in it, we continued to pray for a miracle, and continued to believe that God could deliver one.”
“I knew and completely understood what we were facing, but in hope, I was not giving up on [my child]. I could never give up on him.”
“From a clinician’s standpoint, they are often wanting parents to see the reality of which way they see the dancer spinning: perhaps counterclockwise (ie, that a child is likely to die). A parent on the other hand wants to see the more natural path of clockwise (ie, the child will continue to live) because it is so ‘counter’ to think otherwise of our children.”
Hope as an evolving experience“In regard to [my child]’s illness, especially toward the end of her life, our hope shifted. It shifted from cure, to quality.”
“[The hope that my child would be healed] was like a big umbrella over the whole journey. But there were also more ‘realistic’ hopes under that big one. Hope that it wouldn’t come back. When it came back, we hoped for a chemo to kill it. When it continued to grow, we hoped for a chemo that would slow it down.”
“Hope was a real rollercoaster during [my child]’s treatment.… Towards the end, though, my hopes became more focused on short-term things.… Once [my child] went on hospice care, my hopes mainly focused on [my child] finding peace before the end.… At the very end, my hopes all changed to healing for [my child] and seeing [my child] again at the end.”
“I remember one day very clearly when it hit me that we actually needed a miracle for [my child] to survive. So, of course I changed my prayers to specifically ask for that miracle.”
Persistence of hope for a miracle“In fact, about a week before he died…we still hoped that God would intervene and do a miracle in [my child]’s body.”
“I never stopped hoping for a complete and lifelong cure, even when the odds went from 85% to 5%.”
“Until the very end of [my child]’s life, I remained hopeful that he would be one of the few patients that survives despite the odds and grim prognosis the doctors gave us.”
“The knowledge was ‘[my child] was probably going to die,’ the ‘hope’ was he just might be the exception.”
Existence of hope at death and beyond“Hope was present until [my child] took her last breath, and maybe even a few minutes longer—that perhaps, she would draw one more.… The hope at the end of life was no different than the hope we had throughout [my child]’s journey; all that changed were the percentages of that hope being realized.”
“It was in the course of her suffering…in the middle of her limitations…that we hoped for her to be freed from it all.… From healing on earth to healing in heaven.”
“I knew that his healing would not be physical but was still hoping that his spiritual healing would be complete.”
“Since his death, I have great hope in that wonderful day when I will see my son again.”