Family turns tragedy into music for children
By Rebecca Birchler
Special to The Courier & Press
Amy Miller's story begins with a simple sweetness. Both she and her husband, Matt, grew up in Evansville, each attended the University of Evansville — though not at the same time — and they finally met at a church function. After a short courtship and a longer engagement, they got married and began to build a life. Matt commenced to build a ministry with the local diocese. Amy pursued her passion for music therapy. Just shy of their five-year anniversary, they welcomed Isaac.
"He was a happy, healthy kid," Miller says. "He got colds, but was never really sick."
Miller recounts Isaac's typical growth pattern: He grew out, then up. So, in summer 2010, the Millers were not immediately alarmed when Isaac quickly began to put on weight. He gained 25 pounds in three months, but the family expected he would grow taller quickly according to his pattern.
In September 2010, the Millers left Isaac in the care of grandparents to chaperone local Catholic youths on a trip to Italy. While the Millers were gone, Isaac spent the first week with one set of grandparents and the second week with the other. Amy recalls separate conversations with each, voicing concern that Isaac seemed to feel bad while they were away. Though his three-year well-child checkup was scheduled, Amy Miller called his doctor for an earlier appointment.
During the appointment the Millers recounted their son's grumpiness, increasing tendency to sit on the couch rather than play and the quick weight gain. The doctor's logical next step included an endocrine panel and a bone age study. Another symptom presented that was more difficult to see: Isaac's head size had grown quite rapidly. The doctor ordered an MRI to be on the safe side.
"We knew there was something wrong because they wouldn't let him eat," Amy Miller recalls of the morning of Isaac's first MRI. Though initially promised Popsicles and juice, nurses began to advise against eating or drinking. Immediately the radiologist noted nodes along Isaac's cranial nerves, something by his pituitary gland and a large spot near his cranial nerve. The next week, the Millers traveled to Riley Hopsital for Children.
Isaac's first appointment with his oncologist was on his third birthday. The Millers spent the day at Riley for various tests, but they didn't expect a cancer diagnosis. The oncologist "had not ever seen presentation like this so we were not convinced it was going to be cancer." The next day, the Millers returned to Riley for a CT scan and spinal tap. The family had barely left the parking garage when their phone rang. The oncologist found cancer cells in the spinal fluid and urged the family to return so Isaac could be admitted.
The oncologist delivered shocking news: Isaac's spinal fluid was 97 percent composed of "blasts," the type of cells that make up his cancer. Isaac's treatment team immediately began to flush him with fluid in preparation for treatment, and scheduled another MRI, as well as a bone marrow biopsy. The biopsy provided the definitive diagnosis — because his bone marrow showed less than 5 percent blasts, the doctors ruled out leukemia and diagnosed Isaac with lymphoma. Further tests revealed Isaac suffered from non-Hodgkin's Lymphoma, specifically Precursor B cell Lymphoblastic Lymphoma.
Initially, doctors offered a 60 to 75 percent cure rate for Isaac's cancer. But genetic testing revealed that Isaac had a rare genetic shift, increasing the severity. That Friday, just days after his third birthday, Isaac underwent surgery to install his port, an access point allowing easier administration of IV medications, and received his first round of chemotherapy. Weekly spinal taps injected chemotherapy drugs directly into his spine. The Millers made weekly trips to Riley's outpatient heme/onc clinic. Initial signs were good: Within three weeks, Isaac's spinal fluid, once overrun with cancer cells, tested clear. His course required vigilance and continued treatment though, and he maintained his rigorous treatment schedule until June 2011, when he began maintenance chemotherapy. Maintenance, intended to last two and a half years, allowed the family to continue treatment in Evansville, with only one trip to Riley a month for spinal taps. Soon, he had only one trip to Riley every three months.
At the end of June, when Isaac began radiation treatments. The family moved to Bloomington, so Isaac could take three weeks of proton beam radiation. He received 12 doses over three weeks.
"It didn't matter if it was a doctor, nurse, therapist or the cleaning lady who cleaned the room — they just loved him," Amy Miller says of the support the family felt.
"After radiation, things went smoothly," she recalls. "He was getting to do things like a typical little boy." Amy Miller and her son enjoyed taking music classes together. Experimenting with instruments and learning new songs, the lullabies and music of these classes provided a normal soundtrack to a family whose story was on the upswing.
In December 2011, following a routine trip to Riley for a spinal tap, the Millers got the call they had begun to hope would not come. Isaac's cancer was back.
Amy Miller remembers Isaac's doctors could not explain how Isaac's cancer could return while he was still in treatment. They had to start over with a more intense regimen.
Isaac began two spinal taps a week, receiving three kinds of chemotherapy. These treatments irritated Isaac's spine, causing intense pain and halting treatment for a week.
Not long after Isaac's spine healed, he spiked a fever. An emergency MRI revealed a bacterial infection in his hip. Isaac was scheduled for surgery the next morning. Surgeons drained the excess fluid from his hip and placed a drain. Continuing chemotherapy all the while, Isaac spent a month in Riley.
"The child life specialists were awesome," Amy Miller says, recalling all the events planned for patients and their families. Isaac's stay coincided with the Super Bowl, held not far from the hospital. In addition to meeting Colts players and coach Tony Dungee, Isaac particularly enjoyed the stuffed animals zip-lined across the Super Bowl Village to the hospital.
While Hoosiers flocked to Indianapolis to frolic in the midst of Super Bowl festivities, the oncology team at Riley approached the Millers with their best chance for a cure: a stem cell or bone marrow transplant. The Millers had banked Isaac's cord blood at birth, preparing for the day he might need those precious cells. Unfortunately, Isaac's doctors felt his cancer might well have been in his system then, so his banked blood could not help. Stem cells for transplant would come from donated cord blood, in banks all over the country. Bone marrow registries track the available bone marrow and types from individuals willing to donate.
In March, the Millers moved into the Stem Cell Transplant Unit at Riley. Doctors told them to prepare for a three-month stay, at least six to eight weeks of which would require Isaac to stay in the hospital. "We let him take whatever he wanted: boxes of Thomas trains, Matchbox cars, books, and all of his movies," Miller said. "Anything we could take to make that little tiny room feel like home."
Isaac underwent outpatient surgery the day before treatment to remove his port and get a central line to provide two access points for medication infusion and blood draws, reducing the number of unnecessary and painful needle sticks. Isaac underwent intense chemotherapy leading up to his transplant, four days of total body radiation with two treatments per day, with only the day before treatment free for rest.These treatments were meant to demolish Isaac's own cells so the transplanted cells begin to produce new, healthy cells.
Isaac received his transplant on April 2. Amy Miller describes it as "kind of anti-climatic — you do all of this stuff to prepare and the transplant takes 15 minutes." Because the transplant consisted of only a thick fluid containing the precious cells that would repopulate Isaac's body, his transplant infused right through his central line.
Bone marrow and stem cell transplants produce myriad uncomfortable symptoms including fevers, sores and illness.
Isaac initially escaped all of these. He did not spike the expected post-transplant fever for a week, when he got a bacterial infection. He soon developed a rash that would come and go. But things were OK. Blood work showed the cells were engrafting. Isaac's body was accepting the transplant and beginning to produce healthy cells again.
Then, all of the side effects came crashing down upon him. Isaac developed mouth sores, a severe case of mucusitis from his nasal cavity down to his gut and blood pressure issues. Isaac's body could not maintain essential oxygen levels in his blood.
The need for oxygen does not in itself spell disaster, but Isaac — like many children in similar situations — developed an association between masks and anesthesia. He refused to wear the oxygen mask because he was scared. Doctors and nurses experimented with different kinds of nasal cannulas to deliver the essential flow of oxygen to Isaac's body in a less scary way, but soon the need exceeded nasal cannulas could provide.
At 3 a.m. on April 25, not three weeks after his transplant, Isaac was rushed to the Pediatric Intensive Care Unit. Doctors quickly sedated and intubated Isaac with the hope that, while a machine did the hard work of breathing for Isaac, his body could do the hard work of beginning to heal. Normal ventilators didn't produce the desired effects on Isaac's oxygen levels, so doctors escalated Isaac's treatment with an oscillating ventilator. X-rays revealed fluid in Isaac's lungs. His carbon dioxide levels and bilirubin levels rose, indicating his body could not filter these waste products.
Additional tests revealed Isaac had developed Sinusoidal Obstructive Syndrome — the worst case his doctors had ever seen. A PICU attending came to speak to Miller after a team meeting to brainstorm options for Isaac's continued care. The team couldn't give Isaac the medicines necessary to heal his liver because of his failing respiratory condition. They couldn't address his failing lungs because his liver's inability to cleanse his blood was slowly poisoning his body. Understandably sympathetic to Isaac's plight, the attending PICU doctor approached Miller to discuss the dire situation facing Isaac. "Don't feel sorry for him," Amy Miller told the doctor. "Have faith in what he can do."
Isaac continued to fight until the team and the Millers recognized his body could not overcome these setbacks. Isaac stayed in the PICU for 48 hours, and at the end of those long hours, his nurses positioned him in his bed so that the Millers could crawl into his bed and hold their son. They lay with him. A friend and priest, Father Pat Beidelman, anointed and confirmed Isaac. Finally, his doctors switched him from the oscillator back to a conventional ventilator. And within minutes, Isaac's body succumbed to his illness.
Amy Miller recalls Isaac's visitation and funeral, full of supportive faces of friends who had followed Isaac's journey. The Millers had spent nearly two years single-mindedly pursuing treatment to save their son. That kind of determination and energy does not dissipate after the death of a child.
"We tried to think of ways we could honor Isaac's memory," Amy Miller says of the weeks following Isaac's funeral.
The Millers decided to pour their energy into causes that would benefit families enduring ordeals similar to theirs. Amy Miller joined the committee planning the first CureSearch Walk in Evansville, dedicated to raising money to find better treatments and cures for childhood cancer.
In addition, the Millers set out to create an endowment to "give as many children access to music as possible." From this inspiration Isaac's Day of Music was born. Set for Saturday, the event is a family festival featuring local musicians and activity stations to raise money for music education and music therapy programs.
"Music Together became such a big part of our lives," Miller recalls of their shared music classes. A hard and fast part of the daily routine, "it was that special thing that we had no matter where we were." Miller remembers Isaac's requests for lullabies.
To fund programs and provide scholarships to other families who would like to participate in Music Together classes, Miller has worked tirelessly to coordinate an event that promises to be an enjoyable as it is meaningful. With crafts, games, live entertainment by local bands, performances by Tails and Scales, and a silent auction, Isaac's Day of Music is designed to offer something for everyone interested in supporting this cause.
IF YOU GO
What: Isaac's Day of Music, family festival featuring local musicians and activity stations to raise money for music education and music therapy programs for children with cancer.
When: 1 to 5 p.m. Sunday
Where: First Christian Church, Newburgh, Ind.
Tickets: $5 per person;children 2 and younger admitted free. Available at H&H Music, Opus 1 Music, Integrative Music Therapies, First Christian Church in Newburgh, and the Newburgh and north-side locations of Lefler's Collision and Glass, or at the door.
Need Help? Call us at 1-877-304-7771.
Monday-Friday: 6am-5pm / Saturday: 6am-11am / Sunday: 7am-Noon