Tuesday, September 9, 2014

All Children’s Cancer Patient Cole Eicher Lifts Spirits of Family, Friends and Even Pro Athletes

When you meet Cole Eicher, what stands out first are his eyes – bright, blue and filled with life – and the broad smile that lights up his face at any given moment.

He is a portrait of strength, even amid suffering. He is a source of inspiration to family, friends and two local pro sports franchises in the way he has faced fear and uncertainty.

And he is an uncommon 12-year-old patient at All Children’s Hospital Johns Hopkins Medicine who has weathered the storm of cancer with courage and grace, proudly displaying his bald head after his locks of blond hair were lost to chemotherapy.

Most of all, he is “Cole Strong.”

That rallying cry appears on countless rubber wrist bands, created and sold by friends and staff at Grace Lutheran School in St. Petersburg. They raised some $5,400 for Cole after he underwent surgery in February to remove a malignant brain tumor.  He was overwhelmed by the gesture, but insisted on donating it to the place that has provided his care.

Less than a year ago, Cole never would have imagined the role All Children’s and its world-class hematology-oncology and bone marrow clinical teams would play in his life. His days were packed with fun and fulfillment – as a standout midfielder on his school and club soccer teams, competing with the latter last October in Germany; in his fifth year of a rewarding modeling career, doing shoots for national companies; getting cast as an extra in the upcoming movie Dolphin Tale 2; and excelling in studies at Grace Lutheran Church and School in St. Petersburg.

But then came a bout of severe headaches and vomiting during Thanksgiving weekend of 2013. Cole and his mom, Laura, had just come straight from a morning shoot in Miami, joining his dad, Scott. Food poisoning didn’t seem likely, since nobody else became ill. “We thought that it was the flu, and it went away,” Cole recalls.

In January 2014, however, the same symptoms mysteriously returned during a local soccer tournament. “My dad came to the game and I wasn’t feeling well the whole time," Cole says. “I came off the field and said, ‘I don’t think this is the flu, Dad.’ I think this is something else’ ”

Laura and Scott immediately took Cole to the pediatrician. When blood work came back normal, the doctor suspected adolescent migraines as the cause. Soon after, though, Cole began to experience episodes of double vision. A visit to the ophthalmologist revealed a weak muscle in one of Cole’s eyes, potentially triggering the migraines.

Not wanting to take any chances, the Eichers brought their son to All Children’s for an evaluation by a specialist, who immediately ordered an MRI of the brain. “It took about two hours, and when it was over, they separated us and I was like, ‘Okay, this isn’t good,’ ” Laura recollects. “We knew right then, and your heart kind of stops. But we all just handled it.”

The diagnosis was delivered by pediatric neurosurgeon Carolyn Carey, M.D. It was a medulloblastoma, a brain tumor located at the base of the cerebellum, the area of the brain tied to motor function. It’s the second most frequent cancer in children behind leukemia.  Laura called her husband, then raced home to pack and bring back clothing and necessities for an extended stay. Brain surgery was scheduled for two days later, barely time for Cole to process what was going on. “I was more shocked than scared, because I hardly ever get sick,” he says. “I never expected  this.”

The surgery, performed by Dr. Carey and pediatric neurosurgeon Luis Rodriguez, M.D., lasted five hours and was a success. Almost the entire tumor was removed and Cole had minimal post-surgical complications. Fortunately, Cole’s prospects are excellent. He has been cared for at one of the select few hospitals in the country that treats medulloblastoma, utilizing a complex procedure involving high dose chemotherapy and autologous stem-cell rescue and transplant. 

“These patients have their own stem cells harvested before they have any treatment at all,” explained Stacie Stapleton, M.D., director of Pediatric Neuro-Oncology at All Children’s Hospital Johns Hopkins Medicine.  “After harvesting the stem cells from the blood or bone marrow, the patients receive radiation to their whole brain and spine, and then they receive four cycles of high dose chemotherapy, each cycle followed by infusing the patient’s own stem cells back to them that were collected at the beginning. The four cycles are delivered to the patient over about four months.

“The treatment has an advantage because it lowers the total dose of some of the more toxic chemotherapies in order to reduce many of the short- and long-term side effects. In addition, it’s a shorter protocol, so patients can get back into their regular lives faster, which provides an overall improved quality of life. It also has the same cure rate as other standard protocols, but these other protocols take a much longer time and typically have more side effects. 

“At All Children’s, we have all the specialists available for the neurosurgery, the specialized neuro-oncology protocols, all the supportive care that may be required with these complicated  procedures and protocols – and world-class doctors and support staff who can handle everything.”

As for Cole, Dr. Stapleton adds: “I think he’s doing great. He’s persevered through a lot and is getting back to doing what he loves.”

Still, it has been a rough ride the past seven months. For a time after the operation, his left hand was not fully responsive. When he walked, he felt unsteady – a strange sensation for a youngster accustomed to sprinting up and down soccer fields. He endured the stem cell harvesting, 30 rounds of radiation (performed at a hospital within ACH’s affiliate network), and chemotherapy that made him feel nauseous and weak. And Cole still has double vision that may correct itself naturally or may require surgery in the future.

“My faith has really helped me,” he says. His mom concurs. “When he was going through some really tough times initially, he would think, ‘Okay, I’m not alone,’ ” she explains. “If he didn’t have a strong faith, it would have been very hard on him. He’d have been, ‘Why me?’ ‘Why was this so random?’ “

Cole admits to having some of those thoughts early on, but he didn’t dwell on it. “The other thing that’s helped,” says Laura, “is that he just thinks about what’s happening in the present. He’s like, ‘What are we doing today? Oh, a shot’ or ‘oh, I’m having a blood test.’ Every night, he just asks, ‘What’s the plan for tomorrow?’ He just stays in the moment.”

Some of those moments have been made especially nice, courtesy of the Tampa Bay Rowdies of the North American Soccer League and the Tampa Bay Storm of the Arena Football League.

With the help of friends and neighbors, Cole’s story reached the Rowdies front office. And in April, club general manager Perry Van Der Beck showed up with players Shane Hill and Georgi Hristov at Cole’s club soccer field. The Rowdies had offered to come to the Eicher’s house, but Cole wanted his many teammates to be part of the visit. And what a visit it was: Van Der Beck surprised the youngster by pulling out a contract and signing him on as an honorary member of the Rowdies, and presenting him with official team gear. (Watch the video). Sitting at a picnic table, Cole grinned ear to ear.

The Storm also stepped up big when word of Cole’s ordeal was brought to their attention. They invited him to a practice, gave him his own locker and presented him with team gear and his own jersey. Unable to practice due to his unsteadiness, Cole still got V.I.P. treatment, especially from star wide receiver Amarri Jackson. When Cole showed up on the field a few minutes late, Jackson greeted him playfully, “You’re gonna get fined $2!” Later, the two stood together on the field prior to Tampa Bay’s 35-34 victory over the rival Orlando Predators.

Jackson was by his side once again in the hospital when Cole went for his first round of chemo. And during the World Cup this past July, Rowdies star Keith Savage came to the Eicher’s house and watched a game with Cole. Last month, a huge sign was held high at a Rowdies game with the message, “Cole Makes Us Stronger.”

Meanwhile, Dolphin Tale 2 co-stars Nathan Gamble and Austin Highsmith were seen wearing the special wrist bands at the Los Angeles premiere, and plan to give ones to other members of the star-studded cast at the local premiere of the movie Wednesday, Sept. 10 at Ruth Eckerd Hall in Clearwater.

His final round of chemo begins the day after the premiere, followed two weeks later by his 13th birthday. Easing back into a regular school schedule could happen in October, with soccer not far off. His family and friends marvel at the way he has handled so much, so well. Two words explain it.

Tuesday, June 24, 2014

A Moment Worth Catching: Rays’ Kiermaier and a Little Fan at All Children’s Hospital

Kevin Kiermaier has made quite a splash in his short tenure this season with the Tampa Bay Rays, not just with his bat but with an array of memorable catches. Yet the rookie outfielder could have a tough time topping the grab he made Tuesday morning at All Children’s Hospital.

Kiermaier had just stepped into the room of a 2-year-old patient named Steven, amid making the rounds with reliever Jake McGee to offer some smiles, words of support and autographed baseball cards.

At that very instant, Steven’s 6-year-old big brother, Carson, looked up from the TV show he was watching across the room. He's a quiet child so what happened next took everyone by surprise. He leaped off the couch and shouted,  “KEVIN KIERMAIER!!” 

Without missing a beat, Carson ran across the room and lunged into the 24-year-old  ballplayer’s arms. Ever the defensive standout, Kiermaier caught hold of him and they hugged for several seconds – one more highlights-reel moment for the Rays newcomer.

Veteran athletes don’t often get that kind of reaction in their room-to-room visits. But Carson loves the Rays and he’s been paying close attention, it seems, to the play-making Kiermaier while watching the team’s games on the TV in his little brother’s hospital room.

All of sudden, there he was – the real-life baseball player, and Carson couldn't believe his eyes. 

"He is never like that with anybody," said his mother, Tracy Knott. "He tends to be a little shy, especially with people he doesn't know."

“I was shocked to see him do that,” added his grandmother, Phyllis Knott, chuckling at the recollection. “He absolutely loves the Rays and watches them all the time, and he loves playing baseball.” Mostly he plays in the yard of his parents’ home in Clearwater, with grandma tossing him tennis balls and Carson giving them a whack.

But despite Carson’s interest in baseball and the Rays, she had no idea that he knew who Kevin Kiermaier was – or that he’d be so thrilled to see him. “And Kevin was so nice,” she added. “He embraced that moment for Carson, and that was really sweet of him to do.”

For Kiermaier, making his first visit to All Children’s, it was just as special.

“That’s very, very rare for a little kid to do that,“ he said. “For him to yell, ‘Kevin Kiermaier’ right when I walked in and then give me a hug, that was pretty wild. It was just really cool that he was so happy. That’s what it’s all about. That’s why we come here, for times like that. It’s hard to put into words.”

No need. This time, a little boy said it all.

Kevin Kiermaier! Rays rookie captures a memory with Tracey, Carson and Phyllis.
See more photos from the visit by Rays' Kiermaier and McGee.

Monday, June 23, 2014

Special Care for Special Kids at Johns Hopkins All Children's Heart Institute's Williams Syndrome Clinic

They came from as far away as South Florida and Alabama, parents and young children buoyed by a day filled with specialized medical treatment, helpful information and hope.

The event that drew them to St. Petersburg was the bi-annual Williams Syndrome Clinic held by the Johns Hopkins All Children’s Heart Institute this past May. The families that attended shared a powerful bond in the unique spectrum of traits that link their young ones – and in the knowledge they are not alone in their journey.

Back home, those defining characteristics make Williams syndrome children stand out for their differences; yet what mattered here were their similarities and a reassuring sense of community that connected the families and staff.
Camila traveled with her mom from Miami for the WS Clinic.

Parents not only had their children examined by a range of expert All Children’s Hospital physicians but had a chance to talk to other families and learn more about Williams syndrome: a rare genetic disorder that occurs in roughly one of 10,000 births. It is marked commonly by heart, gastro-intestinal and kidney problems, a pixie-like facial appearance, mental ability from low average to mildly retarded, excellent verbal skills, a highly social demeanor and, very often, a passion for music.

The clinic is one of only 12 in the United States and has been an enormous help – both for new WS parents desperately seeking guidance and those with experience raising a Williams child. And it’s an example of how All Children’s is helping lead the way nationally with clinics that offer highly specialized, one-stop care, designed to help children with multiple needs.

Offered in the fall and spring, the clinic attracts families from around Florida and beyond – on this day from Miami, Jacksonville and Ashford, Ala.  – to be seen by All Children’s specialists in cardiology, nephrology, GI, neurology, genetics, endocrine, ophthalmology, audiology and developmental delays. And as it grows, the clinic hopes to add specialists to help in other areas of need for Williams syndrome patients, such as physical therapy, occupational therapy, speech/language and psychology. Growth is already on the horizon: The one-day clinic will be held over two days this fall for the first time, Oct. 9-10.

Hudson greets baby Liv, held by volunteer Alicia Klingensmith
“You have at least six or seven specialists that these families see on a regular basis, and for any one family, that can mean taking as much as six or seven days off,” said JHAC Heart Institute cardiologist and clinic organizer Gul Dadlani, M.D.  “And since their kids are probably seen twice a year, you’re really looking at 12-14 days off a year to get to all those appointments. So having disease-specific clinics like this basically allows these families to take one day off and see as many specialists as possible. They still get the same quality of care, and probably better quality of care – because on that day everything is focused toward this specific condition.”

Williams syndrome has received widespread attention over the past three decades from scientists and geneticists and increasingly been in the national spotlight – from a segment on 60 Minutes some 15 years ago to a music camp at Nashville’s Vanderbilt University involving various country music stars to a highly active and helpful parental organization in the Williams Syndrome Association.

Debby and Mikey Johnson with Dr. Dadlani 
But parents of newly diagnosed WS babies and children still frequently find themselves searching for answers and specialized medical care. And that is why many have flocked to All Children’s for the clinic started last year by Dr. Dadlani with a helping hand from a WS parent from St. Petersburg, Debby Johnson, whose 20-year-old son, Mikey, was a frequent patient at ACH during his childhood. She proposed the idea of an ACH clinic over the years and it was Dr. Dadlani who recognized the merits and brought it to life.

“I had the idea when Mikey was little,” Debby said. “We lived close to All Children’s and had fine doctors there, so we didn’t really need a clinic ourselves. But if you live a fair distance from your institution, it made a lot of sense to go a hospital and see several doctors in one day. The idea for this was to help families who might live in rural Florida or far from a big hospital.”

“I think just knowing that the specialists they’re seeing have experience with Williams syndrome is a huge relief,” added ACH nurse Heather Wilson, an RN practitioner and the WS Clinic Coordinator.

For Beth Jones, the six-hour drive from Ashford to have her 4-year-old son, Hudson, seen by Dr. Dadlani and others was completely worthwhile. Hudson was diagnosed with WS by his pediatrician at 22 months, after Beth became concerned that he wasn’t meeting developmental milestones. They were sent to a geneticist four hours north at the Children’s Hospital of Alabama in Birmingham and the doctor immediately recognized that Hudson had Williams syndrome..

“We were like, ‘What’s that?’ – we were very upset, because we’d been suspecting something was wrong for months,” Beth recalled. “We got him appointments with a cardiologist and had his eyes and ears checked. But many doctors where we’re from don’t know what Williams syndrome is. I always have to explain what it is every time we go in.”

She learned about the All Children’s WS clinic while perusing the Williams Syndrome Association web site for help, and knew St. Petersburg is where she and Hudson had to come. “I’m glad we found out about this because now I feel we’re getting a thorough check,” she said. “And I feel better, knowing what to do.”

Camila and Dr. Dadlani during lunch break.
Beth, Hudson and other family members savored the chance to mingle with the other parents during a lunch hour in the Children’s Auditorium. In the middle of the room, 7-year-old Camila, who traveled from Miami with mom Iris Linares, playfully checked Dr. Dadlani’s heartbeat with a stethoscope. Another Miami resident, Carmen Jury, expressed her enthusiasm about the help her 9-year-old daughter, Sophia, was receiving.

“It has been a very enlightening because of the education and information that has come from this,” Carmen said. “At each appointment, we’ve been able to learn something new.”

Not far away, Kylie Romero of Jacksonville talked about her difficult initial experience with her baby daughter, Liv. She was diagnosed at birth with a heart murmur and a looseness in her hips, so her doctor ordered a chromosomal test. At the follow-up appointment a month later, the cardiologist came into the room and informed Kylie that Liv had Williams syndrome.

“She was extremely ‘gloom and doom’ about it, and I just said, ‘Well, okay, what is Williams syndrome?’ “ Kylie recounted. “She immediately ticked off things like mental retardation, ‘cocktail personality,’ will never leave home or have to be in assisted living as an adult. We don’t have that cardiologist anymore.”

ACH RN Heather Wilson with baby Liv.
Shaken, she went on the computer to do research and the first one to reach out was Debby Johnson, who told her about how well her son is doing – and about the All Children’s WS clinic. Liv has gotten excellent care at All Children’s since then, and her mother is grateful.

“She’s hit every milestone – all her heart conditions have gone from moderate to mild and the problem with her hips has cleared up,” she said.  “Liv is perfectly healthy right now. She goes to a special needs day care and is thriving. She’s s a superstar.”

And one more WS patient shining with the help of All Children’s.