With the many advances in cancer treatment, today’s cancer patients have more and more reasons for hope. Portraits of Hope are the incredible stories of our patients and their journeys of hope and survival. Click on a thumbnail and scroll down to view each story.
On January 12, 2013, just seven months after beginning the adoption process, Jayson and Ashlee Quesada witnessed the birth of their daughter, Caydence.
Everything seemed normal until Caydence’s two-month check-up with McLeod Pediatrician Dr. Brian Naylor, who noticed her difficulty tracking and focusing on objects.
Dr. Naylor referred Caydence to an ophthalmologist, who diagnosed her with an eye disorder called nystagmus, or involuntary eye movements. These movements can result in reduced vision and depth perception and often affects balance and coordination. Because the nystagmus presents more prominently on some occasions than others, Caydence’s ophthalmologist prescribed glasses to help maintain control of her eye movements.
The ophthalmologist also ordered an MRI for further testing, which revealed septo optic dysplasia, a rare congenital condition characterized by the underdevelopment of the optic nerve, pituitary gland dysfunction, and the absence of the septum pellucidum (part of the brain connecting the two hemispheres).
While most individuals have only two of the three components, Caydence joins the 30 percent of people who have all three, according to the National Institutes of Health.
Because the area in which Caydence’s pituitary gland and optic nerve intersect developed incorrectly, her body does not produce enough growth hormone, an important component for bone density, cholesterol, and muscle mass.
Septo optic dysplasia causes a range of symptoms including vision problems, difficulty with coordination and balance as well as low immunity.
Facing tremendous concerns over their daughter’s unexpected diagnosis, Jayson and Ashlee relied heavily on the quality care of their McLeod physicians. They continue to visit these pediatric specialists every six months to monitor Caydence’s growth and development.
Caydence’s treatment plan consists of daily low-dose growth hormone injections to balance any hormone deficiencies she may have as well as routine blood work and cortisol stress tests. In times of stress, a person’s body naturally increases its cortisol levels, but Caydence does not have that ability. Therefore, illnesses such as the flu could cause serious complications.
“We monitor her temperature, especially during the summer, because she can overheat easily,” says Ashlee. “We keep a thermometer close by, but we have also learned to watch for physical signs such as lethargy. If Caydence develops a fever exceeding 102°F or gets overheated, she receives a cortisol injection.”
In addition to growth hormone and cortisol injections, Caydence undergoes weekly occupational, physical, and speech therapy both in school and at McLeod Pediatric Rehabilitation.
Now five years old, Caydence has made tremendous progress. Recalling one of Caydence’s most notable accomplishments in recent months, Ashlee explains that Caydence can now walk up and down steps without assistance such as holding a rail.
“Caydence’s condition affects her depth perception, making this simple action difficult before now,” explains Ashlee. “Overall, however, Caydence has excellent vision considering approximately 80 percent of children with this condition become legally blind.”
Caydence works hard and continuously strives to reach her therapy goals, and every success gives her the encouragement to keep moving forward.
Currently enrolled in pre-school, Caydence enjoys many hobbies, including reading books, playing on her tablet, completing puzzles, having dance parties at home, wrestling with her daddy, exploring the outdoors, and telling jokes. Her favorite joke goes like this: “Knock, knock, who’s there? Orange you glad I didn’t say banana?”
Caydence also takes music lessons and participates in weekly equestrian therapy to strengthen her coordination and balance while learning self-soothing techniques.
Caydence’s prognosis will likely never change; however, her vibrant personality and resilient spirit will help her achieve anything she sets her mind to accomplish.
“Witnessing Caydence’s positive attitude throughout her journey inspires us every day,” says Jayson. “Caydence approaches every obstacle determined to overcome it. She resolves to live life to the fullest, refusing to let anything hold her back.”
“Despite her amazing progress and ability to adapt, Caydence still faces many daily struggles,” explains Ashlee. “Social environments, including school, remain a challenge for her. Caydence works hard to learn certain social skills -- such as personal space, volume and interactive play -- which come naturally to most kids. In these moments, Caydence faces the greatest fight -- her personal fear of failure.
“If we could take this away from her, we would; however, Caydence embodies the truth that our differences allow our unique qualities to shine through. When she enters a room, people stop to notice -- whether from her loud voice, her willingness to approach anyone and give them a hug, or her bright smile. She brings so much light, joy and laughter to everyone around her, and we would not have it any other way.”
To celebrate Caydence’s remarkable journey, McLeod named Caydence the 2018 McLeod Children’s Hospital Ambassador. In this role, Caydence participates in local and state activities to help raise awareness of the services McLeod Children’s Hospital provides children from the Midlands to the Coast.
Maurice Sanders II, known as “M.J.” to his loved ones, bolts around like any typical little boy. A bundle of energy, he smiles and laughs as he plays with balls, blocks, and books, running from one corner of a room to another seeking his next adventure. M.J. slows down usually only for a snack or drink. His parents, Kamara and Maurice, feel lucky if he pauses for a hug or a nap, but the moment quickly passes as M.J. winds himself back up to high speed.
This perpetual state of motion and joy slowed for a time in October 2017. When two-year-old M.J. appeared sluggish and showed signs of a cold, Kamara made an appointment with M.J.’s pediatrician, Dr. Karen Hill at McLeod Pediatric Associates of Florence, for evaluation and treatment. After M.J.’s symptoms worsened and his fever climbed, Kamara brought him back to the office for a Saturday clinic visit with Dr. Michael Collins, and subsequently M.J. was later admitted to the McLeod Children’s Hospital with a suspected diagnosis: Kawasaki Disease.
“A rare condition, Kawasaki Disease affects children usually before two years of age,” said Dr. Charles Trant, McLeod Pediatric Cardiologist. “While the disease does not have a well-defined cause, some researchers have found potential links to certain viruses.”
The common symptoms of Kawasaki Disease include: a high spiking fever for at least five days; a rash; conjunctivitis; bright red palms/soles; red/swollen tongue; and enlarged lymph nodes. While these signs can cause fear and alarm, especially in such young children, most recover quickly from the disease when caught early.
The treatment for Kawasaki Disease involves hospitalization and a drug therapy called intravenous gammaglobulin (IVIG), a mixture of antibodies and aspirin. Most patients need only a single dose of IVIG, but some require multiple doses of this powerful drug, according to Dr. Trant.
To the great relief of M.J.’s family, the effectiveness of the IVIG treatment manifested almost immediately.
“As soon as he received the IVIG, M.J. started to come back,” said Kamara. “For a brief moment, all I could see was Superman flying into the light of the sun, regaining his power as the weight of kryptonite vanished from his chest. My little Superman looked strong again.”
M.J. and his family recently celebrated his third birthday, and thankfully should not have to worry about Kawasaki Disease slowing him down again.
“Patients who respond well to the IVIG treatment and show improved signs of inflammation go home and continue taking aspirin for at least three weeks,” explained Dr. Trant. “After that time passes, we perform an EKG/echocardiogram, and if we see no heart damage, we stop the aspirin but follow-up again in three more months. If doing very well at the time of the follow-up, the patient can continue normal supervision by their pediatrician or family physician.”
While considered rare, Kawasaki Disease does impact the lives of children in the region, but the McLeod Children’s Hospital meets those needs.
“I see six to ten patients a year with Kawasaki Disease, which can lead to very severe complications if it impacts the coronary arteries. In rare cases, it can cause heart attacks in small children,” said Dr. Trant.
“Thankfully, having the McLeod Children’s Hospital here in Florence means that these children can receive treatment closer to home, without travelling hundreds of miles or to other states for their care.”
On May 13, 2015, Brett and Shawn Burroughs of Whiteville, North Carolina, welcomed their second daughter, Indiana, into the world. Named after the infamous character Indiana Jones, Indiana showed all signs of a healthy baby girl.
“Compared to our first child, Piper, Indiana was much calmer and slept more,” recalls Shawn.
Two weeks later, during a routine check-up, Indiana’s pediatrician Dr. Erin Smith discovered a heart murmur.
As a high school coach, I am around many students who have heart murmurs, so Shawn and I were not too concerned at first,” explains Brett.
Dr. Smith immediately referred the Burroughs to Dr. Charles Trant, McLeod Pediatric Cardiologist.
Board certified in pediatric cardiology, Dr. Trant treats children with congenital and acquired heart disease. He conducts evaluations of heart murmurs, chest pain, syncope, palpitations, and arrhythmias. He also performs and interprets pediatric echocardiograms, electrocardiograms, tilt table tests and stress tests.
At the appointment, Dr. Trant performed an EKG and echocardiogram in his office.
The diagnostic testing indicated that Indiana had a Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD), and Patent Ductus Arteriosis (PDA).
“Dr. Trant brought us in and explained that there were a few problems,” recalls Brett. “Shawn and I became very fearful at that point.”
Dr. Trant explained that the heart has two upper chambers (atria) and two lower chambers (ventricles). The right side of the heart -- the right atrium and right ventricle -- pumps blood to the lungs, and the left side of the heart -- the left atrium and left ventricle -- pumps blood to the rest of the body
Atrial Septal Defect is a heart defect where there is a hole in the upper chamber of the heart. As a result, the heart pumps extra blood to the lungs. Similarly, Ventricular Septal Defect is a heart defect where there is a hole in the lower chamber of the heart, which also results in extra blood being pumped to the lungs.
Patent Ductus Arteriosis is a congenital heart defect where the blood vessel that connects the heart’s two major arteries does not close after birth and allows blood to flow into the lungs. This adds stress to the heart and if left untreated, can lead to congestive heart failure.
“Children born with heart defects have either Ventricular Septal Defect or Atrial Septal Defect coupled with the Patent Ductus Arteriosis, but having all three is much less common,” says Dr. Trant. “What hurt Indiana most was that these conditions could cause problems individually, yet all three were contributing to congestive heart failure (CHF).
“At the initial visit, Indiana looked good, but infants with heart defects frequently do at such an early stage. Most infants do not show signs of CHF until approximately six to eight weeks after birth.”
Brett and Shawn continued to monitor Indiana over the next two months and remained diligent with feedings every two hours and frequent weighing.
Indiana gained approximately three pounds in that time, but then her growth stalled for a couple of weeks. Shawn also noticed Indiana grunting during her feedings.
Concerned over these symptoms, Brett and Shawn called Dr. Trant, and he recommended they bring her in for another evaluation, as these were the initial symptoms of CHF.
“Feeding problems are typically the first place we see issues in children with heart problems,” says Dr. Trant. “Drinking a bottle is about the most vigorous exercise for a baby. If the heart is not working well, feedings become more difficult.”
Dr. Trant put Indiana on two medications to treat the CHF, and her condition improved for a short time. When Indiana’s weight stalled again, he slightly adjusted her formula and medications to “buy more time” before considering surgery.
“I try to be appropriately aggressive and medically manage my patients for as long as possible,” explains Dr. Trant. “The benefits of surgery do not always outweigh the risks, so we must ensure a high benefit and low risk to justify open-heart surgery.”
On September 16, 2015, Indiana met what is called “maximum medical benefit,” meaning Dr. Trant did everything he could from a medical standpoint to keep her going, but this was now a surgical problem.
“From the beginning, Shawn and I prepared ourselves for the possibility of surgery, but we were still crushed,” recalls Brett. “Yet, in the midst of what felt like defeat, we understood that this was the best option for Indiana.”
Indiana was transferred for the repair of her Atrial Septal Defect, Ventricular Septal Defect, and Patent Ductus Arteriosis to a facility where these types of specialized surgeries are performed. She tolerated the surgery extr emely well and no longer suffers from heart failure.
“She has recovered like a champ,” says Dr. Trant.
Today, Indiana has a clean bill of health and enjoys the same activities as most one-year-olds -- crawling, playing with balls and anything Minnie Mouse, eating yogurt melts, and playing with her big sister, Piper.
“Thank you cannot adequately describe our appreciation for Dr. Trant,” says Brett. “His compassion and concern for Indiana meant a great deal to us. We had complete trust in him, and he will always be a part of our life. We also find comfort in having these quality services available to us so close to home.”
Indiana will require long-term followup with Dr. Trant, even into adulthood, since adult cardiologists in general do not have training in congenital heart disease.
“Shawn and I consider this entire journey a blessing, and we know this is part of God’s plan for Indiana’s life,” recalls Brett.
Today, the family looks forward to all the adventures in store for Indiana.