Differing perceptions

Freeman JM. On learning humility: a thirty-year journey. Hastings Cent Rep. 2004 May-Jun;34(3):13-6. PMID: 15281722.

When I returned to Johns Hopkins as an associate professor in 1969, the physician's role was quite paternalistic. The concept of informed consent was just beginning to enter the patient-physician relationship, and the idea of shared decisionmaking had not begun. Parents had responsibility for the surrogate decisionmaking for their child, and the idea that disabled persons have the same rights as everyone else was still new. I had been hired to direct the pediatric neurology division at Johns Hopkins. I was also to run the March of Dimes Birth Defects Clinic which primarily cared for children with spina bifida, a congenital malformation of the spine associated with varying degrees of paralysis of the legs, bladder, and bowels, and often associated with hydrocephalus (water on the brain).

During the mid-1960s, newborns affected with spina bifida were sent home or to an institution, typically to die. Children who did not die had treatment begun when they were a year old. As surgical and anesthetic techniques improved, however, surgery for the newborn with spina bifida became increasingly feasible, and John Lorber, of Sheffield, England, showed that early closure of the back to avoid meningitis increased the child's chances of survival. 

When I began to work in the Birth Defects Clinic, early surgery was the norm but was not mandatory. As director of the clinic, it became my responsibility to elicit the parent's informed consent for the operation to repair the back. I needed to discuss the likelihood of the child's future ability to walk, with or without braces and crutches, and to explain the consequences and management of the probable incontinence of bowel and bladder and the likelihood of hydrocephalus and of mental retardation. I had been trained in the paternalistic era when the physician directed the patient's care and convinced the parents to make the correct decision, and this was typically the approach I put into practice myself.

I have recently had occasion to look back on my work and to see what happened to some of the patients I have worked with over the years. What I find leads me to think differently about much of what I have done. I had been a biology major in college and had little patience for philosophy and ethics. I found them lacking the precision that had led me to science and eventually into medicine. Through my medical school and residency training there were no courses in medical ethics, caring and compassion, or communication. We were taught "medicine" and to make good decisions for the patients. But my journey with spina bifida has led me toward humility and, I hope, greater wisdom.

About one year after I began directing the clinic, I saw a newborn with spina bifida whose story has become emblematic for me of my ever-growing uncertainty. The infant had a high spinal lesion, and I explained to her parents that she would spend most of her life in a wheelchair and never have normal control of her bowel or bladder. She was likely to develop hydrocephalus, and if we did not operate to close the back, she was likely to develop meningitis. They were a churchgoing family and asked to consult with their minister. The following day they returned and told me that, with their minister's guidance, they had decided to let God make the decision. They did not want to have a surgeon interfere with God's will. They wanted to take the baby, now named Faith, home and provide her with love and care.

I knew that if she were taken home, she would probably die of meningitis. Was death with love preferable to life with love and suffering? At that time, society's attitudes toward the child with Down Syndrome were changing; the prevailing sentiment now was that if the child had an intestinal blockage she should be operated on, with or without parental permission, and then either taken home by the family, put up for adoption, or placed in foster care. I wondered whether Faiths case was similar, and I worried about my obligations both to her and to her family. My paternalistic bent was to do everything possible to give her the best life available, to close the back and embark on the multiple medical procedures, recognizing that she faced a lifetime of medical complications. She would likely be of normal intelligence and thus aware of her condition. Yet the family was apparently making its decision out of love and compassion, not because they wanted to avoid caring for a disabled child. They wanted to give Faith their best care, and then leave the outcome to higher powers. I decided that it was not my role to interfere, even if it meant a higher probability of Faith's dying. I let them take her home and asked to see her in the clinic in a month.

When Faith returned for the four-week visit, she had been well cared for. Her back had largely healed, but she also had all of the clinical signs of meningitis. I explained to the parents that we had two choices: to hospitalize her and treat her with antibiotics, or to pretend not to recognize the infection and let them take her home to die. Again, after a long discussion, they convinced me of the validity of their choice to leave the outcome in God's hands, and Faith went home.

Three weeks later, the family returned to the clinic because Faith was vomiting and not feeding. Her meningitis seemed to have resolved on its own, but she had now developed hydrocephalus, which if left untreated would certainly kill her, although possibly not for months, even years. A minor operation to place a shunt and siphon off the fluid could control the hydrocephalus. I explained to the parents that if Faith were to survive, she should survive in the best condition possible. She should have her back repaired so it would be less disfiguring; she should begin to have orthopedic procedures on her legs so that they would be as straight as possible. She should have her bladder and kidneys evaluated and treated, if necessary, to avoid permanent damage. At this point, Faiths family agreed to treatment. From their perspective, God had shown His wisdom and had not allowed Faith to die. He would want her to be the best she could be. We performed the shunt.

As a teen she was beautiful, walking with crutches, seemingly happy, but somewhat slow mentally. I lost track of her when she outgrew pediatrics, but I have recently reviewed her medical history. Over the ensuing twenty years, she has had many hospitalizations, many shunt revisions, and many bed sores requiring plastic surgery. She has had repeated renal infections, and one kidney has been removed. In short, she has endured a grueling medical history.

In retrospect, Faiths case has been a lesson in humility several times over. It was, to some degree, a lesson in medical humility: she did well even when the family rejected some of my recommendations for treatment. Thinking about these decisions was also an early lesson in moral humility, as I found it necessary to accede to the family's views about how she ought to be treated. Thinking about the outcomes of these decisions has provided yet another lesson in moral humility. When Faith was a teen, she appeared to be doing well, even without receiving as much care as I had recommended. But at this point in her life, perhaps she feels differently, and I wonder what she and her family would say now about the quality of her life. On the basis of her medical history alone, anyway, I am not sure that the decisions we made back then were right.

Even at the time, these matters were obscure. In 1971, shortly after Faith's early surgeries, Lorber re-evaluated at the results of his recommendations for early surgery for children with spina bifida and concluded that the early treatment of all children with spina bifida was a mistake. 

Half of the children he had treated early and vigorously had died anyway, and a substantial number of those who survived would be in wheelchairs or require bracing and crutches. He believed that they would be better off dead. He published criteria that could predict a child's future impairment and recommended "selection" and nontreatment of those who would be in wheelchairs or walk only with braces and crutches. He stated that such selection, at birth, would reduce the suffering of the children and their families, and reduce the resources needed for their care.

Lorber claimed that infants "selected" would die quickly, but having recently been through the events described above with Faith, I knew that was not necessarily true and wrote a commentary for a pediatric journal titled, "Is there a Right to Die Quickly?" The commentary raised questions about the meaning of "quickly" and contended that the definition was in the eye of the beholder. Having seen children like Faith lie around the wards for weeks or months--waiting to die--I treated most children with spina bifida, but I also wrote, in another article, that "If euthanasia were legal, I might feel differently." 

Later in my career, I debated John Lorber in front of the American Academy of Pediatrics. He articulated the results of his study, stating that those not selected for treatment died quickly. What was not apparent to the audience, and initially not to me, was that in England, infants were fed on demand. If they were sedated with morphine and phenobarbital and fed on demand, they demanded less, and died more quickly. Infants in this country were fed every four hours and were patiently waiting to die without their physicians knowing the "trick."

Recently I was asked to write a review of the ethical issues involved in treating spina bifida. It had been years since I had worked with children who had that condition, and both the field and society had changed. Now, prenatal folic acid may prevent spina bifida, routine amniocentesis and ultra sound examination often detect a lesion early in pregnancy, and the abortion of an affected fetus is common. I wondered if these changes had affected perinatal decisionmaking.

I went to the spina bifida groups' annual Christmas Party and spoke with two young women in their 20s who had been poster children for what we could do. I had always believed that if the child was given the proper medical care, if complications were prevented, if adequate education and psychological support were provided, these affected children could be given a good life. If they were dissatisfied with their lot, it was our fault for not having adequately met their needs. During their childhood and early adolescence, I had considered these two to he among my treatment successes.

Although both of these young women have high paraplegia and are in wheelchairs, they are of good intelligence, have graduated from high school, and hold government jobs. One has had twenty-seven operations for shunt blockage and for hip, back, and kidney problems. The other had only one shunt but many other surgical procedures. Both live at home. When I asked about their lives they both complained about having few friends, no social life, little prospect for marriage, and little independence. I mentioned that I was writing an article about decisionmaking for infants with spina bifida. One said that although she was Catholic and did not believe in abortion, nevertheless, she wished she had not been born and would advise parents to terminate an affected fetus. The other agreed.

I was shocked. I was reminded of Lorber's statement, which I had disputed in 1971, that "most [of his survivors] had a quality of life inconsistent with self-respect, earning capacity, happiness, and even marriage."

I consider myself to be a moral, caring, dedicated, compassionate, paternalistic physician whose life's work has been with children and parents of children with disabilities. Over the course of my career I had became increasingly confident in the correctness of my decisions, and therefore grew even more paternalistic. My confidence may even have turned into arrogance as I found and articulated the flaws in Lorber's position. Now, with time and experience, and partly as a result of speaking to these young women, my arrogance has become doubt and ignorance, once again. I now do not know what to recommend to the family of a newborn with a severe birth defect, or how to counsel the family whose fetus has been diagnosed in utero. I no longer know what is "the right decision," or even the ethics underpinning a proper decision.

My patients and parents have taught me that families have amazing abilities to cope. I am repeatedly struck by the families who rise to meet what I would have considered terrible, ongoing adversities. I am awed by those who continue to care lovingly for the profoundly disabled child who does not interact with them or with the environment, and who has constant seizures. I remain overwhelmed by the parent who is constantly demonstrating love, care, and compassion without the immediate positive feedbacks and rewards that I as a parent have come to expect.

Predicting the future for children with major abnormalities may be fraught with hazzard; so also may be predicting the parental response to a handicapped child. I was taught this by three mothers, each referred to me for counseling late in their pregnancies. Each was carrying a fetus who, by ultrasound, had hydrocephalus. One child, when born, had hydranencephalaphy (no cortical mantle) and made almost no development. Stasia had seizures and died at three years of age. Her parents considered her "a gift" and wrote of their experience. The second at birth was found to have massive hydrocephalus with only a very thin cortical mantle. She was shunted and has become an "A" student in high school and a competitive swimmer. The third, similarly treated, made little developmental progress, had major complications, and a devastated, ultimately broken, family who came to curse me for advising them to carry the child to term. When seen in utero, I could not predict the three fetuses' medical outcomes, let alone their parents' future reactions.

Since these problems were detected only late in pregnancy, the only alternative was the currently banned "partial birth abortion." Would that have been better? For which of the children? How do you work to achieve the greatest good for the greatest number when "the good" is so unpredictable both for the children and for their families?

I realized the depths of the biases and prejudices that continue to underlie my personal ethics and my decision making. As I tried to factor my perception of quality of life into my advice, I also realized how limited is my own view of other people's quality of life--how tolerant we must become of those with a different quality of life.

In reflecting on my career, I find that I have progressed from ignorance to paternalism through arrogance to a new humility. I have become more tolerant, perhaps more compassionate, less judgmental, somewhat wiser, more confused. I am still learning how deep my own biases run, and how little I really know about the lives of those with disabilities. I no longer know the ethically correct answer to the specific questions posed by the patients' problems. I have also learned, much to my continued disappointment, that ethical theories and ethicists are rarely helpful in decisionmaking at the bedside or for the individual.

But one lesson I believe I have learned is that decisionmaking should be a process, and the process for arriving at a decision is far more important than the decision arrived at. ( This process cannot be left solely to the family, or to relatives and friends, with their biases and prejudices, any more than it can be left solely to the physician. Physicians and families together must learn to work out a plan for the handicapped or potentially handicapped newborn--and likewise for the premature infant, for the person with late-stage Alzheimer's disease, for the critically ill, for individuals at both ends of life.

Fenfluramine for the treatment of seizures associated With Lennox-Gastaut syndrome

Knupp KG, Scheffer IE, Ceulemans B, et al. Efficacy and Safety of Fenfluramine for the Treatment of Seizures Associated With Lennox-Gastaut Syndrome: A Randomized Clinical Trial. JAMA Neurol. 2022;79(6):554–564. doi:10.1001/jamaneurol.2022.0829

Key Points

Question  Is adjunctive fenfluramine effective in patients with Lennox-Gastaut syndrome (LGS)?

Findings  In this randomized clinical trial of 263 patients with LGS, use of 0.7-mg/kg/d fenfluramine resulted in a greater reduction in drop seizures than with placebo, more patients achieving a 50% or greater reduction in drop seizure frequency, and greater reduction in generalized tonic-clonic seizure frequency. Treatment-emergent adverse events included decreased appetite, but no patient developed valvular heart disease or pulmonary hypertension.

Meaning  Findings from this trial suggest that fenfluramine may be a safe and effective treatment option for patients with LGS.

Abstract

Importance  New treatment options are needed for patients with Lennox-Gastaut syndrome (LGS), a profoundly impairing, treatment-resistant, developmental and epileptic encephalopathy.

Objective  To evaluate the efficacy and safety of fenfluramine in patients with LGS.

Design, Setting, and Participants  This multicenter, double-blind, placebo-controlled, parallel-group randomized clinical trial was conducted from November 27, 2017, to October 25, 2019, and had a 20-week trial duration. Patients were enrolled at 65 study sites in North America, Europe, and Australia. Included patients were aged 2 to 35 years with confirmed diagnosis of LGS and experienced 2 or more drop seizures per week during the 4-week baseline. Using a modified intent-to-treat method, data analysis was performed from November 27, 2017, to October 25, 2019. The database lock date was January 30, 2020, and the date of final report was September 11, 2021.

Interventions  Patients were randomized to receive either a 0.7-mg/kg/d or 0.2-mg/kg/d (maximum 26 mg/d) dose of fenfluramine or placebo. After titration (2-week period), patients were taking their randomized dose for 12 additional weeks.

Main Outcomes and Measures  Primary efficacy end point was percentage change from baseline in drop seizure frequency in patients who received 0.7 mg/kg/d of fenfluramine vs placebo.

Results  A total of 263 patients (median [range] age, 13 [2-35] years; 146 male patients [56%]) were randomized to the 0.7-mg/kg/d fenfluramine group (n = 87), 0.2-mg/kg/d fenfluramine group (n = 89), or placebo group (n = 87). The median percentage reduction in frequency of drop seizures was 26.5 percentage points in the 0.7-mg/kg/d fenfluramine group, 14.2 percentage points in the 0.2-mg/kg/d fenfluramine group, and 7.6 percentage points in the placebo group. The trial met its primary efficacy end point: patients in the 0.7-mg/kg/d fenfluramine group achieved a −19.9 percentage points (95% CI, −31.0 to −8.7 percentage points; P = .001) estimated median difference in drop seizures from baseline vs placebo. More patients in the 0.7-mg/kg/d fenfluramine group achieved a 50% or greater response (22 of 87 [25%]; P = .02) vs placebo (9 of 87 [10%]). Site investigators and caregivers gave a much improved or very much improved rating on the Clinical Global Impression of Improvement scale to more patients in the 0.7-mg/kg/d fenfluramine group than patients in the placebo group (21 [26%] vs 5 [6%]; P = .001). The seizure subtype that appeared most responsive to fenfluramine was generalized tonic-clonic seizure (120 of 263 [46%]), with a decrease in frequency of 45.7% in the 0.7-mg/kg/d fenfluramine group and 58.2% in the 0.2-mg/kg/d fenfluramine group compared with an increase of 3.7% in the placebo group. Most common treatment-emergent adverse events included decreased appetite (59 [22%]), somnolence (33 [13%]), and fatigue (33 [13%]). No cases of valvular heart disease or pulmonary arterial hypertension were observed.

Conclusions and Relevance  Results of this trial showed that, in patients with LGS, fenfluramine compared with placebo provided a significantly greater reduction in drop seizures and may be a particularly advantageous choice in patients who experience generalized tonic-clonic seizures.

Adverse childhood experiences, toxic stress, and trauma-informed neurology

Ortiz R, Gilgoff R, Burke Harris N. Adverse Childhood Experiences, Toxic Stress, and Trauma-Informed Neurology. JAMA Neurol. 2022;79(6):539–540. doi:10.1001/jamaneurol.2022.0769 

The COVID-19 pandemic has substantially increased stress globally. It has and is expected to continue to increase rates of stress-related disease and cognitive impairment without appropriate interventions. Much of what we know about how stress changes our biology comes from the body of work related to the Adverse Childhood Experiences (ACE) study published by the US Centers for Disease Control and Prevention and Kaiser Permanente.1 ACEs include child abuse (emotional, physical, or sexual), neglect (physical or emotional), and household challenges (household incarceration, mental illness, substance use, intimate partner violence, or parental separation or divorce) experienced by 18 years of age.1 ACEs are associated in a dose-dependent way with over 60 mental and physical health outcomes and premature death,2 including many of the leading causes of death in the US, such as heart disease, cancer, unintentional injuries, stroke, chronic lower respiratory disease, diabetes, kidney disease, and suicide.1-3 ACEs are also associated with common neurological and neuropsychiatric conditions, including dementia and memory impairment, epilepsy or seizure disorder, attention-deficit/hyperactivity disorder (ADHD), and headaches, in addition to sleep disturbances, developmental delay, learning or behavioral problems, autism spectrum disorders, mood disorders and posttraumatic stress disorder, and chronic pain. It is inevitable that clinicians and investigators across the discipline of neurology will regularly encounter individuals with ACEs and their health outcomes. In one assessment, an estimated two-thirds of US individuals have experienced at least 1 ACE, and 1 in 4 have experienced 2 or more... 

The emerging evidence for an underlying toxic stress response as a treatable physiologic association between ACEs and common neurological presentations should serve as a call to action. While potential causal mechanisms between toxic stress and neurological (and nonneurological) symptoms or conditions are still being investigated, the discipline of neurology is strategically placed to advance the clinical applications of ACEs and emerging toxic stress science to more accurately assess and treat the root neurobehavioral causes for these health conditions. A trauma-informed, toxic stress–responsive approach is one in which the clinician recognizes how early adversity or trauma may physiologically contribute to a health condition and respond with supportive, evidence-based care that avoids retraumatization.9 Understanding how to recognize and best respond to stress-related clinical impacts in neurological practice may inform treatment for conditions spanning from ADHD to COVID-19–related spikes in stress-related disease, including stroke and dementia. 

Medication management for ADHD exemplifies how accounting for the biology of toxic stress is important in clinical decision-making and highlights the need for ongoing research. ACEs and other childhood adversities are associated with greater odds of ADHD, and patients with ADHD who also have a history of ACEs often exhibit a poorer response to stimulant treatment. In classic ADHD, stimulants counteract deficits in circuits involving the neurotransmitters norepinephrine and dopamine, effectively improving attention, working memory, and executive function. However, excessive catecholamine activity is also associated with executive functioning deficits. For individuals with ACEs who may be experiencing prolonged activation of the stress response, α2-adrenergic agonists, like guanfacine, are increasingly being used in pediatric centers to help regulate catecholamine signaling, thereby improving prefrontal processes like executive function and attention. Treatment for ADHD in the setting of toxic stress should also include behavioral therapy to reduce environmental risk factors and address underlying toxic stress physiology by using stress-buffering strategies... 

Trauma-informed neurology can center patient experiences, more effectively treat toxic stress-associated health impacts, and inform future research (Figure). Neurologists stand poised to help patients understand the role that toxic stress physiology may play in the clinical presentation or severity of neurological condition(s)—and in effective treatment thereof. Such an approach can aid clinicians in more specifically managing clinical conditions associated with ACEs when toxic stress is suspected by incorporating interventions targeted at regulating stress physiology, and help reduce blame, shame, and stigmatization patients often feel in connection with early adversity and/or toxic stress symptomatology. Interventions to regulate and counter stress physiology include routine physical activity, antiinflammatory diets, supportive relationships, experiencing nature, quality sleep, mindfulness practices, and mental health treatment. 

Adys Mendizabal, Cody L. Nathan, Pouya Khankhanian, Marissa Anto, Cynthia Clyburn, Alexandra Acaba-Berrocal, Louise Breen, Nabila Dahodwala. Adverse Childhood Experiences in Patients With Neurologic Disease. Neurol Clin Pract Feb 2022, 12 (1) 60-67; DOI: 10.1212/CPJ.0000000000001134 

Abstract 

Background and Objectives To describe the prevalence of high adverse childhood experiences (ACEs) among neurology outpatients and determine their association with health care utilization rates and comorbid medical and psychiatric disease. 

Methods This was a cross-sectional study of adults seen for outpatient neurology follow-up at the University of Pennsylvania. Participants completed the ACE questionnaire and depression/anxiety screenings. Health care utilization metrics (emergency department [ED] visits, hospitalizations, and outpatient calls) were obtained for all participants. High ACE scores were defined as a score of ≥4. The prevalence of high ACE scores in our cohort was compared with US historical controls. Statistical associations were adjusted for age, sex, and race/ethnicity. 

Results One hundred ninety-eight patients were enrolled in the study. Neurology patients were more likely to have elevated ACE scores compared with US population estimates (23.7% vs 12.6%, p < 0.01). High ACE scores were associated with increased ED utilization (odds ratio [OR] = 21, 95% CI [5.8–76.0], p < 0.01), hospitalizations (OR = 5.2, 95% CI [1.7–15.0], p < 0.01), and telephone encounters (OR 3, 95% CI [1.1–8.2], p < 0.05). High ACEs were also associated with medical and psychiatric comorbidities (OR 5.8, 95% CI [2.0–17.0], p < 0.01 and OR 4.5, 95% CI [2.1–9.6], p < 0.01) and high depression and anxiety scores (OR = 6.9, 95% CI [2.8–17.0], p < 0.01, and OR = 4.3, [95% CI 1.7–11.0], p < 0.01). 

Discussion Patients with neurologic conditions are more likely to have high ACEs than the US population, which was associated with higher rates of health care utilization, increased number of medical and psychiatric comorbidities, and higher anxiety and depression scores. Addressing ACEs may be a way to improve the health outcomes of patients with neurologic conditions. _________________________________________________________________________

https://journals.lww.com/neurotodayonline/Fulltext/2022/06020/Adverse_Childhood_Experiences_May_Underlie.6.aspx 

Trauma-informed care can be distilled to four main principles—the “Four Rs” defined by the Substance Abuse and Mental Health Services Administration, Dr. Ortiz explained. 

“The first R is realizing that trauma and toxic stress exists, and is pervasive, and that many people have experienced it across all socioeconomic characterizations, races and ethnicities,” she said. “The next is recognizing that trauma may manifest in some of the signs and symptoms or diagnoses a neurologist may see, like changes in behavior or attention. The third R is responding with care and compassion at the patient level, in collaboration with other specialists. And the final R is resist retraumatization. Offer an inclusive and responsive environment in which, for example, the provider asks permission of the patient before conducting a physical exam or taking a certain approach to the encounter.” 

Next, consider this in your differential diagnosis. “If you have a patient who is not responding to treatment the way that you would expect or is utilizing health care more often than the typical patient—with lots of ED visits, hospitalizations, phone calls—that should trigger a question as to whether this patient could have a history of childhood trauma or toxic stress,” said Dr. Mendizabal. 

But one should be cautious in approaching these questions, as a well-meaning clinician who asks about a patient's ACEs history without a plan as to what to do when the patient answers yes to those questions may cause more harm than good. 

“If you have a clinic with social workers and/or a mental health provider who works closely with you so that you can quickly and safely refer the patient for services, then ideally you should be asking all patients questions about ACEs and trauma,” Dr. Mendizabal said. “But in reality, there are so many barriers to mental health services access, and so many neurology practices don't have a social worker or anyone trained to address this. The concern is retraumatizing someone if you don't have the appropriate resources to help. You need to have a good referral system.” 

Trauma-informed care does not necessarily mean the clinician needs to know the details of someone's trauma experience, Dr. Ortiz noted. “Our approach emphasizes a ‘universal precautions’ methodology. We know that as many as 70 percent of the population may have had ACEs as traditionally defined, and many more have experienced other forms of adversity associated with a toxic stress response, such as racism. All practicing providers should consider taking a trauma-informed care approach with all patients, whether or not something is specifically identified. This can only serve to create a more inclusive, safe, and trustworthy environment.” 

A useful tool to begin education in trauma-informed medicine is a June 2021 report from the California Surgeon General, The Science of ACEs and Toxic Stress. It notes that toxic stress is amenable to treatment, citing studies that have found new opportunities to more precisely interrupt the toxic stress response, break the intergenerational cycle of ACEs and toxic stress, and promote an intergenerational cycle of health. It also posits that early intervention can improve brain, immune, hormonal, and genetic regulatory control of development; and that treatment of toxic stress in adults may prevent transmission of neuro-endocrine-immune-metabolic and genetic regulatory disruptions in offspring.

 

 

 

Spinal cord tumor

Sam Short of Columbus, Ohio, is just 16, but he’s already proven himself to be a warrior.  

Back in 2018, he was diagnosed with spinal cancer. Yet this April, the teenager made a wish with the U.S. nonprofit organization Make-A-Wish, which helps fulfill the wishes of children who are fighting critical illness.  

Sam Short's wish? To go to Parris Island, South Carolina, to endure two days of training at the Marine Corps boot camp.  

"Even though they were just two-and-a-half days — it really was a life-changing experience for Sam," Tori Short, Sam's mom, told Fox News Digital.  

Here's Sam Short's inspiring story.  

Sam Short is a lot like other teenagers. He's a sophomore in high school and recently obtained his driver’s license. He loves sports, especially basketball and baseball, and he has three younger siblings, a brother, 14, and two sisters, 11 and 8.  

When he’s not in school, the teenager works at a hardware store.  

 

Sam Short, 16, of Columbus, Ohio, was diagnosed with spinal cancer in 2018. Through the Make-A-Wish Foundation, he did a two-day boot camp at Marine Corps Recruit Depot Parris Island, South Carolina. (U.S. Marine Corps photo by CWO2 Bobby J. Yarbrough) 

 

Sam (at right, wearing hat) arrived at Parris Island in S.C. on April 27. He was joined by seven Marines who went through Sam's boot camp with him as other "recruits." (U.S. Marine Corps photo by CWO2 Bobby J. Yarbrough) 

Four years ago, the active, then-12-year-old started struggling to walk and keep his balance, said his dad, Mike Short, in a video interview with the Marine Corps. 

After Christmas in 2018, doctors found a tumor on Sam’s spine and neck.  

The tumor was removed in surgery, but within a year the cancer aggressively returned, Sam Short himself told Fox News Digital. 

Doctors weren’t able to fully remove the cancer during a second surgery, so Sam underwent radiation and chemotherapy, which he said makes him feel miserable.  

"[The cancer has] basically taken a lot of the things that I loved to do away," Sam told Fox News Digital. "I can’t play sports, which is really hard. But it was definitely hard balancing school and treatment." 

Tori Short, Sam's mother, told Fox News Digital that her eldest son’s diagnosis has been challenging for the whole family. 

 

"We try to not get ahead of ourselves," she said. "We also try not to get stuck." 

"We live scan to scan," she said, "and try not to live in the anxiety of what might happen. [We’re] trying to really continue to hope and push forward and also live in the reality [that] things can change at a moment’s notice." 

Tori Short said she and her husband try to balance the challenges with trying to maintain a normal life for their kids.  

"Despite Sam's diagnosis, he still has to do laundry and mow the lawn and do normal chores," said the mom. "We try to keep things as normal as possible because on the other side of this is real life."  She added, "We can't wait for bad things to happen — so we're going to continue to live in the present." 

Sam has always wanted to be a Marine.  

He told Fox News Digital that his uncle served in the Marine Corps, which inspired him to choose Parris Island for his Make-A-Wish. 

 

"[Sam] really wanted to come out and prove himself," Mike Short said in a Marine Corps video. "He was really adamant that this is where he wanted to go and what he wanted to do." 

Make-A-Wish America spokesperson Jono Smith said in a statement that Sam’s wish to become a Marine — like many other children who have patriotic wishes to be in the military or law enforcement — follows in the footsteps of the original inspiration for Make-A-Wish, Chris Greicius. He was a 7-year-old with leukemia who wanted to be a police officer in 1980.   

"The spirit of Semper Fidelis provides a powerful emotional inspiration for these Make-A-Wish kids who see their wish as a turning point in their often successful battles to overcome critical illness," Smith said.  

"When you help grant a wish, you restore hope for a child and help them reclaim their childhood, which is what the U.S. Marines have done for Sam and so many other Make-A-Wish kids," Smith added.

 

On April 27, Sam and his family went to Marine Corps Recruit Depot Parris Island, South Carolina, where the U.S. Marine Corps has trained recruits since 1915.  

While there, Sam went through a shortened, two-day version of boot camp, which usually lasts 13 weeks.  

 

Sam also did the obstacle courses on Parris Island, with the help of the other "recruits" who were with him. (U.S. Marine Corps photo by CWO2 Bobby J. Yarbrough) 

Sam trained on obstacle courses, participated in swim qualifications, went through the gas chamber, did rifle training and even completed what’s known as the Crucible. It's the final challenge that all Marine recruits go through before they graduate from boot camp.  

"It was physically pretty hard," Sam said. "There was a lot of different stuff we had to do that I sometimes couldn’t do. But it was still fun." 

Like all recruits, Sam even endured yelling from his drill instructors, he said. 

"It was like, ‘Are you allowed to yell at a Make-A-Wish kid?’" Sam joked. Yet it didn’t put a damper on his experience. 

"He just had a smile on his face the entire time, likely when he shouldn't be smiling," Tori Short said. "He just couldn't take the smile off his face." 

"It was hard to come home because he was so happy there," she added. 

 

"It was physically pretty hard," Sam said of boot camp. "There was a lot of different stuff we had to do that I sometimes couldn’t do. But it was still fun." (U.S. Marine Corps photo by CWO2 Bobby J. Yarbrough) 

One of the best parts of boot camp for Sam was the companionship of other "recruits."  

Seven Marines on Parris Island left their ranks for two days to join him during the training.  

"I was with them the whole time," Sam said. "They were really cool. And they were encouraging and helpful. It was really fun." 

Tori Short said there were times when Sam wasn’t able to complete a challenge; the other Marines kindly helped him fill in the gaps.  

"If there was a time where he couldn’t do it, they did it as a team," Tori Short said, adding that the best part of the experience was watching Sam during boot camp.  

"We got a front-row seat to see his dream come true," she said. 

After two days of boot camp, Sam enjoyed a special ceremony from the Marines.  

He received his Eagle, Globe and Anchor — the emblem of the U.S. Marine Corps, which all graduating recruits receive. In front of 750 people from the Parris Island base who attended the ceremony, Sam was named an honorary Marine.  

"We were blown away," said Tori Short.  

"We were just treated with such amazing hospitality and care," she added. "Everyone was so gracious and supportive and encouraging … We’ve never been so impressed by a group of individuals in this process." 

Major Philip Kulczewski, the director of communications, strategy and operations for Parris Island, said in an email, "It was an honor for us to work with this amazing young man. He represents the tremendous fighting spirit and commitment that we look for in each aspiring Marine." 

Today, Sam said he’s doing OK. He's undergoing a second round of chemotherapy after finishing radiation treatment back in March.  

"His treatment plan is a little bit like whack-a-mole," Tori Short explained. "When something pops up, we figure out what the next best treatment plan is for the spot that pops up." 

Tori Short said that Sam’s experience on Parris Island "represented his continual endurance and grit" as he’s battled cancer. 

"The captain who put the whole thing together spoke at Sam's Eagle, Globe and Anchor ceremony and talked about Sam being a warrior," Tori Short said.  

 

She said she and her entire family are grateful to Captain Seth Sotelo, as well as the seven Marines who served as "recruits" alongside Sam.  

At the end of his training, Sam was given the honorary title of Marine.  

"It was crazy because I didn’t expect any of that," said the young man. "I was really honored. It was really, really cool." 

Added his mom, "Everyone has a battle to fight. The Marines are protecting the United States and Sam's battle is with his health." 

https://www.foxnews.com/lifestyle/ohio-teen-spinal-cancer-honorary-marine