St. Jude wants to make sure that Jamill keeps a smile on his face.
Jamill’s mom describes him as mellow and sweet. This 4-year-old loves riding his bike and going to basketball games. The first few years of his life have been difficult due to sickle cell disease, but St. Jude Children’s Research Hospital has been there every step of the way to ease his pain and keep him as healthy as possible.
When Jamill was born, tests revealed he suffered from sickle beta thalassemia disease, a subtype of sickle cell disease. Sickle cell disease is a genetic blood disorder that affects the hemoglobin within the red blood cells, causing the cells to become hard and form a sickle shape. The sickle shaped cells can cause pain, organ damage or stroke.
St. Jude has a deep and longstanding commitment to children with sickle cell disease. Scientists at the hospital have been researching the disease since the institution opened in 1962. With more than 750 patients in its sickle cell program, St. Jude remains one of the leaders in the crusade to spare children the suffering this chronic disease causes.
Little Jamill has experienced pain crises and high fevers associated with sickle cell disease, often needing to be hospitalized for days at a time. “As soon as I call and let St. Jude know we are on the way, they get Jamill’s room ready,” said his mom, Tanshika. “I know they are taking really good care of him.”
Jamill’s treatment at St. Jude includes daily penicillin and any additional care he might need to manage symptoms of the disease. He visits St. Jude every three months for routine checkups.
“Jamill’s pain crises have occurred less often as he gets older and continues treatment,” Tanshika explained. “I really like everyone at St. Jude. We’ve always been well taken care of thanks to the doctors and all of the staff.”
At St. Jude, music therapy empowers children, helping them meet developmental goals while providing an outlet for expression.
With an elfin grin, Kyle approaches the piano, eager to tickle the ivories in preparation for his first recital.
“Oh, no!” he declares, dismissing the question with a quick shake of the head and flip of the hand.
“Him?” his mother, Chasity, teases. “He loves the attention.”
Weeks before the musical event in a St. Jude auditorium—invitation only, and everybody who knows and loves Kyle is invited—he is rehearsing his selections and preparing his wardrobe.
“He has a new blue shirt and tie,” announces his mom, eyes twinkling.
“And…tell what kind,” he prompts her.
“A big-boy tie; no clip-on.”
“Yep, that’s right!” he affirms, delighted.
At 7, Kyle possesses the confidence and tolerance he needs to take on not only the keyboard, but also the cancer treatment he’s undergoing at St. Jude Children’s Research Hospital.
He arrived in February from Louisiana and, to him, it was important to continue his music. Kyle had begun piano lessons in October 2013 and had started memorizing recital pieces.
But cancer interrupted the plan.
“He was upset,” Chasity says, “because he would miss his spring recital.”
When Kyle arrived at St. Jude, he met music therapist Amy. Kyle told her of his appreciation for piano; she immediately added an electronic keyboard to her collection of instruments. The more Kyle listened and learned and practiced, the more he hoped for a recital.
Hitting the right note
“Music is therapeutic,” Love explains. “Research shows that music is the only thing that lights up all of our brain at once. For kids like Kyle, music helps build fine motor skills, improves concentration and task orientation, and assists with reading and learning a language.
And music gives Kyle something to celebrate,” Love adds.
Kyle is being treated for a rare combination of germ cell tumors: germinoma and embryonal carcinoma. As part of his treatment, Kyle has undergone brain surgery, spinal surgery, chemotherapy and radiation therapy.
“He’s had minimal sickness. Chemo hasn’t slowed him down one little bit,” his mom reports, “but he did get upset thinking he was going to have to miss a year’s worth of piano.”
“I had already picked my song, ‘Swans on the Lake,’ for my recital,” Kyle adds.
“So they came up with the idea of a recital here,” Watson says. “While we’re in Memphis, Kyle particularly looks forward to seeing Miss Amy every week.”
Rhyme, rhythm and song
Kyle is not the only patient who has fallen for Amy. She makes her rounds, guitar strapped to her back, pushcart in tow, piled with drums and ukuleles; little xylophones and jingly bells on bracelets; even a cylinder that, when shaken, sounds like a thunderstorm. Amy’s ever-present electronic tablet contains song lists.
As she passes through the corridors, children grin, parents nod and, by the dozens, she calls them by name.
Entering a patient’s room, she greets a dour little face and gently announces, “I’m glad to be with you today, and I’m really glad for all the music we will play.”
A silent boy reaches out a slim arm for the drum she holds, the mallets and noisemakers she offers.
“Which song would you like today?”
Voices and choices
Amy says she enjoys offering choices to children who may not feel that they have control over other aspects of their life.
“Music is a way of releasing a lot of tension in your body. People sing at weddings, funerals, graduations, on the radio, so why not in the hospital? You should have access to ways to express yourself—a music voice,” Amy says.
The boy in the bed chooses the drum, the song, and, as it turns out, the meter.
“Kids aren’t always feeling well, but sometimes they have a lot of energy they have to get out of their bodies,” Amy says.
As she sings, the boy beats out the rhythm—moderate, then slow; fast, then ridiculously fast; ridiculously slow, and back and forth. The patient grins at his own mischief with music. And the two musicians laugh together.
Heart, mind, spirit
“Sometimes we use music therapy to promote physical goals,” Amy explains. “You can use a steady pulse of music as a rhythmic cue for walking a specific pace or for learning a certain phrase with intonation, because the neuro-pathway for music is different than the one for speech.
“I may go into a patient’s room and the child is anxious,” Amy continues. “I match the tempo of my guitar picking to the child’s heart rate. As I slow the tempo, the child’s oxygen saturation may increase and the blood pressure may decrease.”
Music, she says, also has a place in legacy building.
“We’re rolling out heartbeat therapy,” Amy says. “We can put a microphone in a stethoscope, record the child’s heartbeat and create and perform a song over it, making that heartbeat into a beautiful memory.”
At regular sing- and play-a-longs in the Kay Kafe lobby for kids and adults who happen by, Amy is prepared when a little girl begins to cry: Another child has the instrument she wants. Amy pulls out jingly bell bracelets, and harmony is restored.
Harmony of spirit. Harmony of sound. Budding pianist Kyle understands.
“I love all the harmonies,” Kyle says. “When I watch a movie or listen to music, I notice the harmonies. I notice when the singing starts. I can pick out the instruments, especially the piano.
“You know, I’m having a recital in the auditorium. Would you like to come? I’m playing three songs: ‘Swans on the Lake,’ ‘Jesus Loves Me’ and ‘Let It Go.’ I can’t wait.”
What is music therapy?A clinical and evidence-based practice, music therapy can be used to achieve both musical and non-musical goals. One musical goal for a patient such as Kyle might be learning to play piano. A non-musical goal might be using drums to improve motor skills. Music therapist Amy also helps patients attain emotional goals, such as learning to express themselves by writing and performing songs and discussing song lyrics. Creativity also helps patients cope with disease and its treatment.
When St. Jude opened its doors in 1962, the medical community saw many childhood cancers as incurable.
We didn’t listen.
And today, thanks to the research of St. Jude scientists and the care of St. Jude doctors, there are thousands of families that are very glad we didn’t listen.
Our work at St. Jude has helped push the survival rates for childhood cancer from 20% to 80%. And that’s really good news.
But we want great news. And great news will be when we cure all kids.
In the next decade our goal is to increase the survival rate of childhood cancers to 90%, and we will keep pushing until we get to that incredible day when cancer doesn’t claim the life of any child.
You can help us get there. Make a gift today and you’ll be helping provide us with the needed tools to conquer childhood cancer.
St. Jude surgeons are world renowned for innovative approaches that save the lives of children with cancer and other diseases.
Mick’el was 15 months old when his grandmother noticed that he had blood in his diaper and a firm, bloated belly. After examining the toddler, doctors discovered that Mick’el had advanced bilateral Wilms tumor, a cancer of both kidneys.
“I was shocked. Scared,” says Mick’el’s father, Tommie.
When chemotherapy and radiation failed to shrink the tumors, doctors at their local hospital announced there was nothing more they could do.
“I didn’t want to sit on the front row at a funeral,” recalls Mick’el’s mom, Tameka.
The family requested a second opinion, and within days Mick’el was under the skilled care of Andrew Davidoff, MD, Surgery chair at St. Jude Children’s Research Hospital. The renowned surgeon is an expert in bilateral Wilms tumor.
Davidoff and his colleagues perform about 1,600 operations each year to diagnose and treat cancer and other life-threatening diseases. They partner with St. Jude oncologists, radiation therapists, pathologists, anesthesiologists, nurses and basic scientists to plan and deliver the best treatment for children with solid tumors. Their specific expertise includes complex surgical procedures to treat kidney, neuroendocrine, eye and bone cancers.
“In addition to the technical aspects of these procedures, understanding what is appropriate for each patient is even more important in children with cancer,” Davidoff says. “It means knowing when surgery is appropriate and when it is not. If surgery is appropriate, is the best timing before or after chemotherapy? How aggressive or conservative should we be with the surgery, and is surgery the only way to cure the cancer?”
Preserving kidney function
Bilateral Wilms tumor occurs in only 30 U.S. children each year. Nearly 20 percent of those children have their surgery performed at St. Jude.
“Because of our extensive experience surgically managing children with cancer, I feel we have a more aggressive willingness to perform complex surgical procedures rather than saying they can’t be done,” Davidoff says. “While most other surgeons would remove one or even both kidneys, our approach is to save as much normal kidney on both sides when possible. That’s where experience counts.”
Not only does this approach, called nephron-sparing surgery, maintain excellent survival rates, but it also helps children with this rare cancer avoid kidney failure, dialysis and transplantation. The No. 1 goal is always cure, but improving quality of life is a priority as well.
Davidoff surgically removed a softball-sized mass from Mick’el’s left kidney and another the size of a tennis ball from his right kidney. Today, the active 9-year-old is five years cancer-free with normal kidney function.
Davidoff has performed more than 50 such surgeries and publishes the results so the medical community can learn from the St. Jude model. Early results from cases like Mick’el’s show promise not only for cures but for avoiding complications after surgery.
Experience and expertise
Neuroblastoma is the most common solid tumor in children next to brain tumors and accounts for 7 to 10 percent of all childhood cancers in the U.S. By the time neuroblastoma is diagnosed, the cancer has usually spread to other parts of the body. Outcomes for the disease vary widely.
“In some children, the disease can be very non-aggressive,” Davidoff says. “We remove the tumor with surgery, and the children are cured. Others with advanced disease may require surgery, chemotherapy, radiation and bone marrow transplantation and still the survival rate is only 30 percent.”
When venturing into this complex territory, St. Jude surgeons meticulously separate the tumor from delicate blood vessels that nourish the kidneys, liver, intestines and other structures. The surgery requires precision and skilled hands to prevent damage to vital organs.
“It’s a challenging and tedious surgery in which we have a lot of experience and expertise,” Davidoff says.
St. Jude surgeons also team with oncologists to incorporate new surgical techniques and approaches into clinical trials for neuroblastoma.
Improving care for children with eye cancer
The St. Jude retinoblastoma treatment team is one of the most recognized in the country and is a textbook example of how research in St. Jude laboratories improves outcomes for patients in the clinic.
“Our basic scientists are able to develop preclinical models and identify pathways we can exploit with novel targeted therapies that we hope will reduce the toxicity of treatment, preserve vision and make patients’ lives better,” says Matthew Wilson, MD, ocular oncologist. He and Rachel Brennan, MD, a pediatric oncologist and retinoblastoma expert, are part of the team that treats children with retinoblastoma.
“The ability to examine and observe the eye and understand the size and number of tumors in the eye is just as important as treatment,” Wilson says. “With aggressive surveillance and careful examination of the eye, we’re able to judiciously apply the laser and cryotherapy to treat tumors, save the eye and preserve as much vision as possible.”
In addition to the retinoblastoma group, patients receive support from an an eye clinic and many other services both during and after therapy. Because of this teamwork, the hospital’s investigators recently achieved a 100 percent five-year survival rate for children with retinoblastoma in one or both eyes at diagnosis.
Researchers continue to create new treatment options for patients whose cancer has spread beyond the eye, as well as develop new routes for delivering drugs while avoiding radiation and minimizing long-term effects of therapy.
Saving lives and limbs
When Bhaskar Rao, MD, joined St. Jude in the 1980s, amputation was inevitable for children facing surgery for osteosarcoma and Ewing sarcoma, the most common bone cancers in children. St. Jude was one of the few centers that offered an alternative—saving their limbs as well as their lives.
Today, the offer still stands as St. Jude surgeons help children maintain function of their arms and legs.
“Approximately 90 to 95 percent of our patients with bone tumors will have some sort of limb salvage,” says Rao, a pioneer in limb-sparing procedures. “Our approach is chemotherapy to shrink the tumor to an operable size; then we perform the limb-sparing surgery.”
Rao and orthopedist Michael Neel, MD, remove the diseased bone and replace it with a custom-made, expandable prosthesis. Because bone cancer primarily affects adolescents, growing patients return to St. Jude for outpatient procedures to lengthen the prosthesis and to maintain the same limb length on either side. After surgery, children undergo extensive rehabilitation and support care to help them maintain normal function.
The local recurrence rate for St. Jude patients who have undergone surgery for Ewing sarcoma is below the 10 percent national average. Rao attributes the outcome to experience, supportive care and unmatched follow-up care.
“At some centers, the surgeon operates on patients and sends them back to the oncologist and then the surgeon never sees the patient again until they encounter complications,” Rao says. “Here, we provide continuity of care for patients until they are 18 years old or until 10 years after diagnosis, whichever comes later.”
Patients treated at St. Jude are eligible to receive comprehensive screenings and health assessments related to their cancer—for a lifetime. “This level of follow-up care is not available in many places,” adds Rao, who also serves as Surgery director for the St. Jude International Outreach Program. Looking ahead, surgeons are evaluating and exploring new limb-sparing techniques to improve survival and help children live normal lives after treatment.
Minimally invasive techniques
Minimally invasive surgery is an alternative approach to diagnose and treat solid tumors, depending on the size and location of the tumors. John Sandoval, MD, uses the tools of the trade to view and investigate tumors in the chest and abdomen. He makes small incisions to perform biopsies, sample lymph nodes and remove abdominal tumors and lung lesions.
“We are staying mainstream and contemporary and attempting to push the envelope in laparoscopic surgery in children with solid tumors,” Sandoval says.
There are advantages for patients who qualify for the technique: less pain, quicker recovery, a speedy return to therapy and fewer long-term functional complications.
In 93 percent of procedures performed between 1994 and 2004, patients were able to receive an accurate diagnosis relying solely on the minimally invasive techniques performed at St. Jude. A follow-up study will be published this year to identify improvements and trends from the past decade. Sandoval anticipates the success rate to rise to nearly 100 percent.
Minimally invasive surgery is relatively new to pediatric oncology when compared to traditional surgery. Sandoval and his colleagues are helping to establish consensus guidelines for the appropriate use of these techniques in children with cancer. This provides the ideal opportunity for St. Jude to help shape the future of minimally invasive surgery in pediatric oncology.
Because of you...St. Jude will soon have a new operating room and surgery complex that will double the size of the current space. The new facility is designed to provide optimal care to patients and families who look to St. Jude for treatment and to further the hospital’s commitment to education and training.
The facility will include:
“Our family owes everything to St. Jude. There is no doubt that if it weren’t for St. Jude, we would have buried our kids by now. No doubt.”
By Clay MeredithIn 1996, my wife, Suzan, and I received a phone call that took our breath away.
“We’ve reviewed your children’s medical records,” the doctor told us, “and there’s really nothing more that we can do. Just enjoy the time you have left with your kids.”
How could this be happening? We were an average family, living paycheck to paycheck in middle-class America. But our infant son, Mitchell, had life-threatening breathing problems; our 6-year-old daughter, Alee, had partial paralysis as a result of a stroke.
There was no doubt in my mind that we were going to bury these two kids, and in short order. I don’t think “panic” can even hold a candle to where we were in our thought process. We were living a nightmare.
I sat down at the desk of a family member who is a funeral director.
“I don’t have the money right now,” I told him, “But if you will allow me to bury these kids with dignity, I’ll pay you every nickel I owe you.”
Shortly after my wife had given birth to our second child, things had begun to go terribly wrong. Almost overnight, we went from being a normal family to watching both of our children almost die. We had been in and out of hospitals for many months, and the children had been given a long list of diagnoses—from asthma to lactose intolerance to a rare genetic disorder. But no one, not even the best specialists, could tell us what was making our kids so sick.
We had two sick babies and really didn’t have an answer about what was going on.
When Mitchell was 6 months old, we finally got that answer: Our children had been born with the human immunodeficiency virus, or HIV. We were devastated. In 1996, my wife and I knew nothing about HIV—only that it was a death sentence.
Like most people who contract HIV, my wife had carried the virus for many years without knowing it. Ten years before, her fiancé had died. We now realized that he most likely had AIDS.
Alee and Mitchell were put on a regimen of medicines. Two weeks later, our daughter had a stroke. Mitchell had the worst case of HIV that our local medical community had ever encountered.
The doctors offered us no hope.
“You’re telling us to watch these kids die?” I asked them. I was determined that we would not let that happen without first exploring every avenue.
So that started my quest. I got on the phone and started calling HIV clinics from Washington, D.C., to San Francisco. I don’t know the exact number of phone calls I made, but it was in the hundreds. Time after time, people suggested that we take our children to an institution in Tennessee, called St. Jude Children’s Research Hospital.
“That’s where I would go if I were in your shoes,” said a doctor from Houston, Texas. “That’s where I’d take my kids.”
“We put our two little broken babies in the back seat of our ratty old Escort, and with a prayer and a few dollars in our pocket, we headed to Memphis. That was the beginning of new life, new hope.”
As soon as we got the referral to St. Jude, we put our two little broken babies in the back seat of our ratty old Escort, and with a prayer and a few dollars in our pocket, we headed to Memphis.
That was the beginning of new life, new hope.
From the moment we pulled into the gate, the staff at St. Jude started taking care of us. They answered our questions. They knew instantly what the course of action should be for our children. Dr. Patricia Flynn and her staff got the kids started on their treatments, and then we loaded up our babies and headed back home.
I didn’t know it then, but the miracle was in place and was starting to happen. All of the treatment we had received before coming to St. Jude had been a failure, so we didn’t really know what to expect. But within a week or two, our kids’ eyes were bright, their appetite had picked up, and things had begun to change.
Those changes began to instill hope, because we started seeing our children returning to us. A month later, a St. Jude checkup revealed that the treatment was working very well. At the following checkup, the news was even better.
As time went by, we felt blessed and wanted to give back by sponsoring a child who was HIV positive. One day, Suzan found the website of an orphanage for HIV-positive children. On that site was a video of a 3-year-old Ethiopian boy singing “If You’re Happy and You Know It.” Watching that video, we both began bawling like babies. Instead of sponsoring the little boy, we initiated the adoption process.
Thirteen months later, we brought Yonas home.
Through the years, the St. Jude medical team has kept our family on the right track medically. And our social worker, Chris Sinnock, has helped guide Alee and Mitchell through issues of disclosure they faced as they entered their teen years.
Thanks to St. Jude, all three of our children are thriving. Alee recently graduated from college and will soon be teaching English and working on her master’s degree. Mitchell is a high school senior who plans to become a pharmacist. Yonas is now in the sixth grade. Who knows what he will do?
Our family owes everything to St. Jude. There is no doubt that if it weren’t for St. Jude, we would have buried our kids by now. No doubt.
If I could meet the people who donate to the hospital, I would say, “Thank you.” And if those donors would form a line, I would hug each and every one of them. People who support St. Jude give hope to families who have no hope; they give a chance to children who have no chance. And due to that overwhelming generosity, parents like us get our kids back.
Abridged from St. Jude Promise magazine, 2014
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