Abstract
More Than You Can Handle is a memoir written by television news producer Miguel Sancho, who chronicles his family's journey into the world of “parents with a sick kid” that begins on a day like any other. His son, Sebastian, is diagnosed with a rare disease of the immune system, chronic granulomatous disease (CGD) that takes the entire family on a rollercoaster ride filled with uncertainty, adversity, and hope as they fight to save his life.
“There are two kinds of parents in this world—those who've taken a child to the emergency room, and those who haven't”: Sancho provides unfiltered insight into the experience of the parents with a sick kid (“PWASK” as it is referred to). The narration guides the reader through the events as they happen. In contrast to the fairytale-like stories he tells for a living, Sancho's frank and honest tone captures the journey authentically.
The three-part story opens with a scene from any parent's nightmare—a very sick child on a plane. The book follows the Sancho family as they travel down the eastern seaboard in search of a cure, at a medical center far away from home. The first section describes the struggle to find a diagnosis for the mysterious illness that appears to have befallen their toddler. They are thrust into the world of genetics as it becomes clear that his illness is heritable.
As part of the Sanchos' journey, genetic testing is done to evaluate for transmission of the mutation from mother to child. After receiving the official notice that the mother had been a carrier for CGD and passed the “bad” gene to her son, the readers get a vivid picture of a mother living with overwhelming guilt. She shares, “I've always felt that somehow I was not good enough…It was a deep, hidden send of doom. Now I have proof”
Once the diagnosis is confirmed, the Sanchos head to the National Institutes of Health (NIH) to learn what if anything could be done to save their son. The NIH team provides insight into the three management options. The first involves continuing the current medications—a bandage solution that temporarily may keep their son from getting very sick. The second option involves waiting for advancements in gene modification—technology that would allow for a permanent solution but could be years or decades away from approval.
Finally, the third option is pursuing a bone marrow transplant—a brutal process. The readers learn how this third option requires first finding a match, then undergoing an immune system destroying chemotherapy regimen followed by infusion of donor stem cells with hopeful growth of a new immune system that would no longer bear the burden of CGD.
If successful it could, however, be a permanent solution. The doctors at the NIH lay these options out clearly. They discuss the pros and cons of each and answer the family's questions. They make it clear, however, that only the parents themselves can make the final decision. Treatment options unfold in front of them with a weight of decision making all their own. “To make it, we'd need to find within ourselves what it takes to be a true adult: the strength to make decisions with profound and irreversible consequences under conditions of imperfect information.”
In Section 2 the suspenseful experience of entering the hospital world for a pediatric bone marrow transplant in 2016 is shared. “We'd planned to visit for five days. Sebastian wouldn't go home for eight months.” Sancho invites the reader along on this raw exploration as he and his wife cede all control to a medical team offering hope for salvation of their son. “Neither of us could be called a control freak, but everyone needs a modicum of order and predictability in their lives just to function.” In each section of the book, Sancho struggles and learns to cope with a lack of control. This highlights a crucial aspect in pediatric palliative care and patient care in general: parents can be as much the patients as their kids. With minimal control and a great deal of uncertainty, Miguel and his wife constantly experience anger and stress.
Any marital disagreements are intensified as every aspect of life is shifted to a life-or-death mentality. Their perceptions of risk are altered, leaving them to believe that odds were, are, and may always be against them. Furthermore, they are burdened by a “do anything culture,” causing tunnel vision in the goals of care. “The point of our existence, our solitary and overmasting goal, was always front and center, blinking in boldface the Terminator's mission objective on its retinal image display: MUST KEEP BOY ALIVE.”
Section 3 brings the reader home with Sancho and his family. They struggle to find their fit in their previous world as their view of life and death and the threat of infection changed them. No longer are they the carefree parents who brought Sebastian home from the nursery after his birth. They have worked hard to remain married, find common ground, seek out supports, and cannot unsee the dangers of the world. “Our stay in Hospital-world had remodeled our mindset and our perspective, throwing us out of sync with Healthy-world culture.” There will be no fitting in as they are forever changed as a family by the experience of parenting a sick child.
Palliative care is notably missing in this memoir in part because in 2016 it was a nascent field with few pediatricians dedicated to the practice of pediatric palliative care. There were many points in this memoir where a palliative care team could have benefitted this family had they existed. A pediatric palliative care team would have met with them around diagnosis, listened as they worked through elucidating their values that would shape which treatment option fits their son and their family. During admission they would have provided advanced pain and symptom management extending that support through the entire family. As the family transitioned back to home, they would have been a part of that transition.
As a medical student, I have recently been studying for the Steps 1 and 2 board examinations. I have dedicated a significant amount of time to learning the key “buzzwords” associated with CGD and many other immunodeficiency syndromes. However, it was not until reading this book that I took the time to stop and reflect on the devastating impact a diagnosis like this can have for an entire family. The buzzwords I read on a page are not as indelibly burned into my mind as the individuals and the associations I have formed with CGD, bone marrow transplant, and care of the whole family because of reading this memoir.
As an aspiring pediatrician, I am grateful for this unfiltered insight into the experience of the Sancho family. Sancho provides simplistic yet thorough explanations of complex medical concepts. He invites the reader to feel his emotional pain and hear his struggles. This emotional honesty will resonate with parents of sick children and loved ones supporting a family on a medical odyssey. He reminds the readers that having a sick child is not normal; it is in fact lonely and isolating. Decision making is complex and living with decisions is even harder.
Placing trust in strangers is hard and holding together a marriage and a family is even harder. Spending time with Sancho and his family through his writing provides a perspective that health care teams may lose track of in the course of their work. As palliative care professionals taking the time to be with the Sancho family may allow you to listen more openly to the next family in front of you. This story serves as a reminder to health care teams that innovation and even healing come at a cost that is often unseen.