“Geno Golfers” Champion Cause for Kids Like Piper

Categories: Orthopedics Now, Patient Families

Piper Lundin is a champion among champions.

Like other children who are battling medical conditions requiring ongoing infusion therapy, or those undergoing outpatient dialysis, Piper – the 10-year-old daughter of Sarah and Mark Lundin – is as courageous as she is resilient.

Piper and her family were among the special guests attending the 16th Annual Geno Auriemma’s “Fore the Kids” Charity Golf Tournament, where her mother shared her daughter’s incredible medical journey, inspiring additional support for the new Infusion and Dialysis Centers planned at Connecticut Children’s Medical Center.

“Your generosity will truly impact patients like Piper,” Sarah told some 200 golfers gathered at the Hartford Golf Club, where highlights of the day included a round of golf, dinner and awards, raffle gifts and several guest speakers, including 9-year-old Michael Vamvakas, who is a patient of Connecticut Children’s Orthopedics Division Chief Jeffrey Thomson, MD; Rebecca Lobo Rushin, an ESPN anchor and former University of Connecticut Women’s Basketball player; Kevin Negandhi, an ESPN sports anchor; and Geno Auriemma himself.

“Throughout this journey, I have been so moved watching Piper and so many other patients that we have come to know,” Sarah said. “They just keep going. They never stop. They just don’t ever give up. They are the true definition of perseverance. These kids are champions of battles they received but never asked for. And they just keep going. And we must keep going for them.”

A Battle Brewing

It was February 2016, when Piper – who loves music, plays guitar and clarinet, and enjoys riding her bike and playing basketball and soccer – had suddenly become very ill. “She left her gymnastics practice with stomach pain so severe she was unable to stand,” her mother recalled. “She was admitted to Connecticut Children’s, where she was diagnosed with a rare, but usually benign, blood vessel disease called HSP.” HSP – or Henoch-Schönlein purpura – is a condition in which blood vessels become inflamed.
But it didn’t end there.

“Over the course of her stay, the doctors concluded that the disease had spread to her kidneys and her situation became more serious,” Sarah explained. “Her health and kidney function continued to deteriorate.”

Piper’s doctor, Cynthia Silva, MD, Division Head of Nephrology and Medical Director of Connecticut Children’s Center for Kidney and Bladder Disorders, ordered a kidney biopsy, which showed that the disease was active but had not caused much permanent damage to her kidney filters, so Piper went on to complete a three-month course of steroid treatment.

“She seemed better and had a fairly ‘normal’ summer,” her mother recalled. “We thought everything was fine.”

But when school started, it became clear to the Lundins that everything was not as it should be. “Piper’s eyes began to swell and her body started to retain fluid,” Sarah said.

That’s when another kidney biopsy was ordered.

“When Dr. Silva called and asked if Mark and I could meet her in person – and could we come in tomorrow – we were terrified,” Sarah said. “Dr. Silva told us that the disease was not gone and that she wanted Piper to immediately begin an aggressive course of therapy, which included a high dose of daily steroids, chemotherapy and weekly infusions of steroids.”

The Biggest Battle

And that’s when Piper’s biggest battle began – her weekly visit to Connecticut Children’s current infusion suite. “The current space has two very small connected rooms with three infusion chairs in each room. It is really cramped,” Sarah said. “There is not enough room to bring along more than one person, so if a patient wants both of their parents there, or a sibling, it is not possible.”

Today, upwards of 3400 infusions are administered each year in that 363-square-foot space, which was designed more than 20 years ago with 20 percent of the patient volume. For Piper, who was 8 at the time, the need for privacy was great. “Piper’s veins were just completely fried from the numerous iv’s and medications,” Sarah explained. “It was extremely difficult for the nurses to get a vein that would work for infusions. It was a painful and scary process for her and most times, there would be several other people in the room. It was already a lot for an 8-year-old to handle, never mind having to do this in front of others.”

New Centers on the Horizon

The new Infusion Center, which will be developed on Connecticut Children’s Farmington campus at 10 Birdseye Road, will be able to accommodate the growing needs of patients and families in an open, child-friendly space with private treatment bays.

“The new Infusion Center will allow patients like Piper to have privacy while they undergo treatment,” Sarah said. “That is such a huge and important thing for them and will drastically improve their treatment experience.”

The Dialysis Center, which will be housed on the fourth floor of the Medical Center at 282 Washington in Hartford, will provide outpatient dialysis services for children, making it the first pediatric center of its kind in the state. It will eliminate the need for families to drive long distances to receive services geared toward children, some of whom require outpatient dialysis three to five times a week for up to three to four hours per session, while awaiting transplant.

“This center will provide life-saving treatments for many patients,” Sarah said. “They will be in a place where doctors and nurses truly understand their specific needs. And they will be in an environment geared for children, which is critical for the healing process.”

An Overwhelming Success

Piper’s touching story stirred emotions and inspired giving by many. By the end of the evening, the charity golf tournament, chaired by Randy Holmeen and Sal Giuliano, had raised an additional $22,000 in donations through the live appeal that were then matched by Geno and an anonymous donor, elevating

Geno Auriemma (at left) poses with one of the foursomes participating in the 16th Annual Geno Auriemma’s “Fore the Kids” Charity Golf Tournament held June 28th at the Hartford Golf Club. Pictured with Geno are (l-r) Greg Mendoza, Bruce Gasiewski, Sam Rothschild and Bob Brochu.

the event’s net proceeds to more than $200,000. Of that, $75,000 will be used to purchase a new portable, low-dose, real-time imaging system for surgeons in the Orthopedics Division, with the balance earmarked for the Infusion and Dialysis Centers fundraising campaign at Connecticut Children’s.
Helping to make the event the most successful Geno Auriemma’s “Fore the Kids” Charity Golf Tournament, to date, were Nike (the Presenting Sponsor), along with the Morris Group (Diamond Sponsor), and UBS, Morgan Stanley, Virtus, Rotha Contracting Company and Gitlin Campise Prendergast (Platinum Sponsors).

Thankful for Care

While watching Piper’s struggle has been challenging, Sarah said she and her husband are grateful for Dr. Silva and the rest of the staff at Connecticut Children’s. “Pip is doing better now,” Sarah said. “The disease has left her with permanent and progressive kidney damage, but she is feeling better and had a great year at school this year. We have the doctors and staff at Connecticut Children’s to thank. We are so thankful for the care she has received and continues to receive.”

To make a gift to the Infusion and Dialysis Centers campaign at Connecticut Children’s, please visit give.connecticutchildrens.org/InfusionDialysis, or contact the Foundation at 860.837.5700.