Joey Richman (left) and Mike Miller have become friends. Miller agreed to donate a kidney to Richman, who suffers from Alport’s Syndrome.
Can a hashtag help find a kidney donor and save someone’s life?
Count Wesley Chapel mom Dana Richman as a believer, after a Facebook and Twitter campaign she started in January helped find her son Joey, a 22-year-old pre-med student at the University of South Florida, a living kidney donor.
Tampa’s Mike Miller, a Mixed Martial Arts (MMA) fighter known by friends as “Muffin Man,” saw a #AKidneyForJoey post on Facebook, and has stepped forward.
The surgery and selfless sacrifice, which will effectively end Miller’s MMA career, is scheduled for Wednesday.
Battling Kidney Failure
Joey suffers from Alport’s Syndrome, a genetic condition that Dana says was passed down from her side of the family, which has suffered a number of deaths from the condition. Alport’s Syndrome causes hearing loss and renal failure. Joey first suffered hearing loss in the fourth grade, but doctors could do little to help, Dana says, until he went into renal failure, which has taken root in the past year.
Joey is fortunate. According to the National Kidney Foundation, more than 100,000 people are awaiting kidney transplants. More than 3,000 new patients are added to the kidney waiting list each month, and 13 people die each day while awaiting a life-saving kidney transplant.
Joey, who lost 30 pounds in the last year, currently administers dialysis to himself every 4-6 hours, for a total of 10 hours daily. Dana says there are 75 boxes of solution in her home. It has made her son weak and tired, barely able to climb a flight of stairs. He is taking his college classes online because getting around campus is too difficult.
Dana has watched Joey deteriorate over the past year, and can’t work herself because she has been taking him to almost daily doctor appointments. She looks forward to April 20 and the months to follow. She says Joey will be isolated after surgery for 3-6 months, but hopes to be well enough to return to classes at USF in August.
“He will feel amazing, probably back to how he felt in elementary school,’’ Dana says. “He’ll be able to do everything other people his age can do. I have goosebumps already just thinking about it.”
Response Overwhelms Mother
Dana said she was stunned by the outpouring of support for her son’s plight. She says Miller is “the most humble, respectful young man you’ll ever meet.’’ She is also quick to thank the dozens of folks who called Tampa General Hospital (TGH) to volunteer for testing when the story broke.
She said TGH received up to 40 calls a day, and many are still volunteering to be Joey’s back-up if the transplant fails for any reason. A host of others, she added, asked to be matched up with others needing transplants. “Amazing,’’ she says. “That makes me happy.”
For Dana — a single mother of three boys including Wiregrass Ranch High graduate Jason, 19, and current WRH senior Jake, 17 — the amount of community support has been a blessing. The one-time military family has moved up and down the east coast, settling in Wesley Chapel three years ago from Pasadena, MD. Even then, she wasn’t sure what the future held.
“I’ll tell you what, Wesley Chapel is an amazing place,’’ Dana says. “Tampa is too, but Wesley Chapel, we couldn’t imagine any place better. It really feels like home, like we finally have a place to put our roots.”
To donate to the Richman family, visit GoFundMe.com/AKidneyForJoey. To help Mike Miller in his recovery, visit GoFundMe.com/6aunghtw. To become a kidney donor, contact Jenni Binns of Tampa General Hospital at 844-5669 or email her at jbinns@tgh.org.
Erin Heilman participated in the New Tampa Relay for Life to raise money for the American Cancer Society (ACS) for the first time in 2007. She says she continued to participate year after year, and in 2012, was shocked to receive a cancer diagnosis herself at age 37.
“Now I’ve seen both sides of this event, as both a participant and a survivor,” she says. This year, Heilman is heading up the event as its co-chair, along with her friend Buffy Atkinson. “With all the mixed emotions the event brings out, it is truly a celebration,” says Heilman.
The New Tampa Relay for Life will be held from Friday, April 8, 6 p.m., until 6 a.m. on Saturday, April 9, around the track at Freedom High in Tampa Palms.
The annual event is always fun for families and event organizers invite everyone to attend. At 9 p.m., luminarias that have been decorated in honor of cancer survivors and in memory of those loved ones lost to cancer will be lit, which is always a beautiful tribute around the track. At 11 p.m., registered attendees under the age of 18 will need to have a wristband showing they have turned in paperwork and are allowed to remain, while registered team members will continue walking the track throughout the night and into the morning.
Heilman encourages people to support the Relay, which raises money for programs that help cancer patients.
“I’ve actually used these programs myself,” she says, explaining one resource that was especially meaningful to her was the 24-hour support line she called when she received her diagnosis and was struggling with how to tell her then-seven-year-old son. Other programs include rides to and from doctor appointments for patients who need them, and funding for the Hope Lodge at the Moffitt Cancer Center, which provides a beautiful home for patients who have to travel long distances for treatments.
The New Tampa relay will be filled with booths that sport the event’s fairy tale theme, “Once Upon A Time,” including Sleeping Beauty, Peter Pan, Alice in Wonderland and many others. Heilman says her favorite theme was chosen by the team at Harold H. Clark Elementary, the movie “Brave,” to reflect that characteristic of cancer patients. There will be food, games, raffles, a giant inflatable, a scavenger hunt, three-legged race, frisbee, Zumba, a talent show and even a dance competition. All money raised that evening goes to the New Tampa Relay.
Last year, the event had 42 teams and raised more than $76,000. This year, there are 30 teams signed up to participate so far – and still time for new teams to join. Event organizers are hoping to raise $82,250.
If you are a cancer survivor, be sure to register at the event website and come out to participate. The event kicks off with a “survivor lap,” where all cancer survivors and their caregivers walk the first lap around the track. Each survivor receives a t-shirt and medal (new this year) and registered caregivers receive a pin. Dinner also is provided for all survivors and caregivers.
“We want survivors there because we are there to celebrate them,” says Erin.
To learn more about the ACS New Tampa Relay, or to sign up a team, make a donation, or register as a survivor, visit RelayForLife.org/NewTampaFL.
Bailey Rhodes (right) and best friend Jessica Korver.
To whoever has been parking their car in Bailey Rhodes’ senior spot this year at Paul R. Wharton High, she’s got news for you:
Starting Monday, April 4, she’ll be needing it back.
Bailey, a 17-year-old senior at Wharton, will be returning to school for the first time since Sept. 2014, after winning battles against bone cancer and leukemia the last four years that left her immune system battered and susceptible and left her unable to wander far from her hospital rooms at Tampa General (TGH) and All Children’s hospitals, as well as her New Tampa home.
She took on all of her treatments with verve, foregoing any wallowing and telling anyone who would listen, ‘Let’s get this going, I have stuff to do and places to go.’”
She will finally get to park her car in one of those spaces in a couple of weeks.
“I can’t wait,’’ she says excitedly, her big brown eyes and even bigger spirit clearly joyful. “I’ve been waiting such a long time.”
Nearly two years, to be exact. September of 2014 was the last time that Bailey attended school, after her first fight with bone cancer and before her second against leukemia.
She has worked hard for this moment. While cancer ravaged her body, Bailey kept her mind focused on school. Although she couldn’t attend full classes, she took her courses through TGH’s Homebound programs, spending hours on the phone with teachers like Gary Lundgren, “Who I couldn’t have done this without,” she says, and others from Wharton.
Bailey has volunteered any way she could, as a mentor, talking to other families touched by cancer, working fashion shows with cancer patients and even working with special needs students when healthy enough.
She took both the SAT and ACT exams from a hospital room.
Now, she will be able to attend the final two months of her senior year, and graduate with her class.
“Everything she had to go through, it’s been kind of hard to watch,’’ says Bailey’s best friend, Jessica Korver. “It’s been hard to go to school and have her not be there. She was always the, ‘Let’s go to all the pep rallies’ person, and I’ve always been the stay home type of person. So, that’s been kind of hard. But she is soooo strong. That’s the one thing I really learned through this whole thing.”
A Tough Time
Bailey was first diagnosed in 2012 with osteosarcoma, a rare type of bone cancer with fewer than 20,000 cases nationwide per year.
The summer before her freshman year at Wharton, she had been experiencing pain in her left knee. Her mother Beth says that Bailey’s grandmother noticed a small rise in her knee, and a visit to the doctor and an MRI confirmed that she had a tumor.
“When I heard tumor, I was like, ‘Wait a minute…back it up,’’’ said Beth, a second-grade teacher at New Tampa’s Dr. Richard F. Pride Elementary.
The diagnosis came just two weeks after Bailey was told she no longer had to wear a back brace to bed to help with scoliosis while she was in middle school.
“I said, ‘I can’t catch a break’ in one breath, and then in the other, I said, ‘I guess this is God’s plan for me,’” Bailey says.
Although there were tears as family members showed up at the doctor’s office, Bailey was resolved to fight. She received six months of chemotherapy treatments, a full knee replacement and limb salvage of her tibia, and another seven months of chemo. Her weight at one point was down to 68 pounds, and she needed a feeding tube to help get her back to a healthier weight.
She was able to return to Wharton for the second nine-week period of her sophomore year in 2013. For a year, she was back to being a normal teenager, making the homecoming court, hanging out with friends, and even taking a family trip to Hawaii.
But, in August of 2014, she started noticing bruises in places where she had not bumped into anything or fallen down. After being in remission for a year, a routine lab test revealed bad news — secondary leukemia, which was the result of her previous chemotherapy, requiring that she receive a bone marrow transplant.
Bailey was shaken up. This fight would be more difficult, and require more resolve. She gritted her teeth through more chemo treatments as doctors searched for a bone marrow match.
“When I was re-diagnosed, I said, ‘This is going to suck, it’s going to be hard, but it’s only going to make you stronger,’’’ Bailey recalls. “We’re going to get through this. And then at the end, we are going to say, ‘What can we do with this now? What can we take from this, and make better?’”
After testing her family at Shands Hospital in Gainesville, doctors ended up finding a perfect match from a donor in Germany.
“A 10 out of 10 match,’’ said Bailey. “I thought that was the coolest thing ever, that somewhere out there, I don’t even know this person, and we’re not related, and they have the exact same bone marrow as me. That’s pretty cool.”
Bailey spent 80 more days in the hospital. Because her immune system was so fragile, she wasn’t allowed to leave her room. Immediate family was allowed in, but only in full hospital gowns and masks.
She was finally discharged Easter weekend of 2015,. For nine more months, she wasn’t allowed to leave her house. “I’ve been on house arrest,’’ she jokes.
She actually had to eat processed foods, like macaroni and cheese and ramen noodles, because there is less bacteria in them than say, unwashed lettuce and fruit. “You could have washed it really good, but I’m wasn’t taking that risk,’’ Beth says.
And, because her bone marrow donor had a peanut allergy, Bailey now also has a peanut allergy, so great discretion had to be used in her daily food choices.
The Big Announcement
On March 15, doctors told her she was once again all clear, and that she could return to school.
“I’m nervous, but I’m really excited,’’ Bailey says, and after noting that the last day of school is May 20, smiles as she reaches across the table to high-five Jessica.
Bailey also has a new cause: Code Gray, an informational service she wants to start for new cancer patients and their families, which she hopes to launch soon.
While at Tampa General Hospital the first time, Bailey had a port put in instead of an IV, and it was difficult to access. Located in her chest and at an angle, it was beneath the skin and reached by a needle. “Very painful,’’ she says. “The first time they tried to access it, it took 10 times.”
She was told to make sure the nurses used 1-inch needles, and one night a nurse was having difficulty accessing the port. Bailey asked her if she was using the right needle, and the nurse insisted she was.
“I only asked because it wasn’t working,’’ Bailey says.
As it turned out, it wasn’t the right needle, just as Bailey thought. On her chart that night, the nurse listed her as “Code Gray,” a designation for “unruly” patients.
The seed for Bailey’s Code Gray organization had been planted. As part of a project for her nursing assistant classes she was taking (since she was not allowed to go to clinicals), she researched mistakes made at hospitals, many she thinks could have been prevented had the patient and their family spoken up. But, most people, said Beth, are just content to let the doctors and nurses handle things.
In Bailey’s case, the family kept extensive journals and recorded every dose of medicine every time something was administered. “Highly recommended,’’ Beth said. “For me, it was therapeutic.”
Bailey spent a recent weekend designing pamphlets, which will contain information for new cancer patients and their families, including tips about dealing with your cancer treatment and talking to doctors and nurses without stepping on toes, as well as how to continue your schoolwork against great odds. She’d also like to create a website, hold some fund raisers and get the word out.
“I’m so passionate about it,’’ she says. “People don’t speak up because they don’t think they are knowledgeable enough to say anything to their doctor. But, if they have questions or doubts, they can — and should — say something.”
Bailey says she hopes Code Gray can help cancer patients. And, maybe one day, she will as well. She has been accepted into her dream school, the University of Florida in Gainesville, and wants to be a pediatrician. While she never thought about treating cancer patients before her own struggles with the disease, she wonders if she hasn’t been sent a sign.
“I always wanted to be a pediatrician, and they always asked me, ‘Do you want to go into oncology?,’’’ Bailey says. “I thought, there’s no way I could relive that every day. But then, this second time, it was like this is proving that I can relive it. Maybe that’s what it’s supposed to do.”
Engineers are looking at previous plans to close the gap at Kinnan and Mansfield.
A new study to determine the feasibility of connecting Kinnan St. in New Tampa and Mansfield Blvd. in Meadow Pointe could be on the horizon, after both Pasco and Hillsborough counties met recently in hopes of settling the long-simmering disagreement between the sides.
Pasco County District 2 commissioner Mike Moore and Hillsborough County District 7 City Council member Lisa Montelione, accompanied by lawyers, city administrators and engineers from each side, met in Dade City on March 9, as negotiations to connect their two counties heated up.
The result: a decision to send the engineers back to work, looking at old plans from 2007-12 to determine if any are applicable today in light of the new developments in the area.
“Our staff, the engineers who do the technical stuff, are going to look at prior studies to see if we need to do a new study,’’ said Moore. “Things have obviously changed in that area, with more homes, schools and daycares.”
Kinnan St., which is on the Hillsborough side, and Mansfield Blvd., which is on the Pasco side, are separated by a 100-foot patch of grass (photo) that is more a dumping ground than the commuter convenience it should be, argue some.
The last traffic study in the area was done roughly two years ago, says Montelione, by ICON Engineering, Inc., as part of the process for M/I Homes during the re-negotiation of the development agreement for K-Bar Ranch.
She said similar studies go back to 1996, and that both staffs plan on taking inventory of those to determine the next step forward.
Kinnan St. was paved north to the Pasco County line in 2007 by the developer of Live Oak Preserve, but never completed. Barricades mark the end of Mansfield and block the road heading south, while steel poles with red diamond-shaped signs on them prevent any traffic further north on Kinnan St.
Last publicly discussed in 2012, when the two sides failed to come to an agreement, Montelione raised the issue again of connecting the roads in January, writing a letter to Moore. The two officials first met later that month to discuss it, before agreeing on the latest meeting with government staff, namely the engineers. “We’ll see what was discussed in the past,’’ Moore said. “There’s no guarantee either way. But, I think what we all agree on is we need an end result.”
If both sides decide a new study needs to be done, Moore and Montelione said public meetings will be held so that residents and business owners of both sides of the debate can be heard.
Montelione attended the meeting with Tampa city attorney Julia Mandell.
Mandell, who was the senior assistant attorney for the City of Tampa during the last round of negotiations with Pasco County in 2013, is now the City Attorney, having been appointed in March as only the second female City Attorney ever by Tampa Mayor Bob Buckhorn.
Susan Johnson, the subdivision/DRI coordinator for the City of Tampa, and Melanie Calloway, the senior transportation planning engineer, also attended the meeting.
Pasco was represented by county administrator Michelle Baker, assistant county attorney David Goldstein and Ali Atefi, Pasco’s transportation engineer.
The meeting also included discussions on other possible extensions to help alleviate traffic issues affecting both counties, like one linking Beardsley Dr. in Meadow Pointe southeast east to Morris Bridge Rd. in K-Bar Ranch, Moore said.
Tampa Palms resident Craig DiCecco is the New Tampa Family YMCA’s Volunteer of the Year.
Thanks to the efforts of volunteers like Tampa Palms resident Craig DiCecco, the New Tampa Family YMCA continues to help people in need in and around our community.
DiCecco was named the facility’s “Volunteer of the Year” at the annual Tampa Metropolitan Area YMCA’s annual Community Impact Awards dinner on Feb. 25.
DiCecco, whose three kids have all participated in sports at the New Tampa YMCA over the past 10 years or so, is a real estate appraiser who is also a member of the New Tampa Rotary Club. He first became involved with the YMCA through the Wiregrass Wobble Turkey Trot, which is an event put on jointly each year by both organizations.
“Craig has really stepped up in many ways, especially with the Turkey Trot, ” says Tony Kimbrough, New Tampa Family YMCA executive director. “The event helps us raise funds to provide programs that impact our members and the community.”
Some of these programs include drowning prevention, teen leadership, the YMCA’s partnership with LIVESTRONG, adaptive programs for people with special needs, and providing financial assistance to kids who need it to attend summer camp.
“There are a lot of families in need,” says Kimbrough, “and we serve them. Summer camp can really help kids close the achievement gap. We see that there’s a lot less of a ‘summer learning loss’ for kids who come to our summer camps, versus those who don’t get that opportunity.”
Honored To Be Recognized
DiCecco says he is honored to have received the award. “The Y is a great organization with a lot of fantastic volunteers,” he says. “It’s tough for me to understand why I deserve this more than others whose faces I see at the Y every day.”
But, Kimbrough says DiCecco absolutely deserves to be recognized for his efforts.
“Craig also serves as vice chair of the New Tampa Family YMCA advisory board, and he’s been instrumental in helping us to raise both money and awareness,” says Kimbrough. “He’s always the first to raise his hand to volunteer when something needs to be done.”
