Tuesday, September 30, 2014

All Children’s Teen Thriving After Leukemia Treatments, Counting Days to ACH Homecoming

Alissa VanWanzeele has her focus fixed squarely on the future these days, eager to re-embrace a life filled with possibilities and to part with a recent past of pain and uncertainty.

The St. Petersburg 13-year-old is looking forward to attending her second All Children’s Hospital Homecoming Dance on Oct. 11. But an even bigger date looms in November, when Alissa will undergo her final round of chemotherapy for treatment of acute lymphoblastic leukemia (ALL), which turned her world upside down the week before she was to start middle school in 2012.


Today, Alissa is one of the countless stories of hope and courage during September’s Cancer Awareness Month and another example of the state-of-the-art care and treatment offered by the Johns Hopkins All Children’s Cancer Institute. Her parents, Lemi and David, feel  immense pride over the way she has dealt with the discomfort and disruption in her life, and remain grateful to All Children’s and friends from church and school who have been there each step of the way since Aug. 8, 2012.

That’s when everything changed for Alissa. She had been an active, healthy 11-year-old who loved to read and excelled in her classes at St. Paul’s Catholic School in St. Petersburg.

“The weekend before she was diagnosed, she’d got gotten sick with vomiting, and we were thinking it was just some kind of a virus,” says Lemi. “But then her face started swelling up, which is something we’d never seen before.”

The parents of four children – including Alissa’s older sister, Shaina, and two young brothers, Dale and Isaiah – were perplexed and concerned. “I work in health care as a physical therapist, so I’m around illnesses, but this worried me, because Alissa has allergies and mild asthma, and I didn’t want this to cause her problems with breathing,” Lemi recalls.

A trip to the doctor’s office followed, and the diagnosis was a virus. They were briefly relieved. But the swelling remained and Alissa seemed sicker than ever. “As her mom, something didn’t add up to me, so we decided to take her to the Emergency Center at All Children’s,” Lemi recounts.

She and David, on break as a Pinellas County public school teacher at the time, brought their daughter in on a Tuesday evening. Tests were performed, and a doctor delivered the jolting news: Alissa had leukemia and needed to be admitted to the intensive care unit right away. “Her white blood cell numbers were through the roof – they were amazed she hadn’t had a stroke,” Lemi says.

The shock was softened somewhat when the All Children’s hematology-oncology team told them the type of leukemia their daughter had was one of the most common, with a high cure rate. “We were told if you’re going to get leukemia, this is the best type,” Lemi remembers. “It still hit us hard that night. Alissa didn’t even look that sick, but here we were being transported to the ICU. The good news is we caught it just in time, because her white blood cell count was so high – she was about to have real problems otherwise.”

The family’s strong religious faith helped them weather the storm ahead and not dwell on fear or anxiety. The gravity of the ordeal truly sunk in for Alissa when she became ill from the chemotherapy, and her long black hair fell out. She dealt with that by developing a signature look with an array of colorful scarves. The treatment plan also included radiation, but Alissa persevered. “The first eight months were the roughest,” says her mom. “She was in and out of the hospital.”


Lemi found her own way to handle the situation with the help of Shaina, creating and updating a Facebook page (Prayers and Wishes for Alissa). That served as a helpful and therapeutic way to keep family and friends up to date.

Alissa’s treatment proceeded with good results throughout the coming months, and she kept up with her sixth-grade curriculum through online classes and tutoring from her father. He left his teaching job to devote all his energy to helping his daughter keep up academically, driving her to appointments and help run the family business.

She returned to school at St. Paul’s by December, and has steadily gotten better thanks to her monthly treatments. In the fall of 2013, one of her highlights was attending the inaugural ACH Homecoming Dance, bringing along several friends to share in the memorable evening.

Now, Alissa is already counting the days to the next Homecoming Dance, having picked out a special purple dress from outfits donated to ACH for its Dress Shop event.

“I’m really excited,” she says. “It’s going to be so fun bringing all my friends and taking pictures.”

It wasn’t hard for Lemi to tell how much the event means to her daughter: “When she saw the flier for the event coming up, she would not stop bugging me, ‘Mom, mom, we have to RSVP!’  I think the event is just so wonderful. I saw so many smiles last year – and again when they were picking out dresses.”

Alissa, like her parents, is grateful for all the kindness showered up her during the past two years. “Everyone around me is always supporting me,” she says. “My school was really flexible when I came back, helping me with all my work. And all the doctors and nurses and everybody at All Children’s have taken great care of me. I’m really excited that I’ll be done with my chemo in November, too.”


Adds Lemi: “Everybody has been so great. We’ve had so much support from St. Paul’s – not just the staff and teachers but the families. For months, they would bring us food. Our church at St. Joseph’s is another amazing community that helped us. And we can’t say enough about All Children’s and everything they’ve done for Alissa and our family.”

One more key date awaits Alissa, stemming from a promise her parents made her to mark the end of chemotherapy as a way of boosting her spirits. “I get to pick out a puppy,” she says. But Alissa has already found a way to boost spirits herself.

“There’s a little girl I know who was just diagnosed with the same kind of cancer, and her dad came to talk to me and he said that I inspired them,” she says. “That makes me feel really good.”




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.