by Cheryl Johnston
More than a century ago Abraham Lincoln called love the chain which binds a child to his parents. This invisible chain is a force which parents and children instinctively recognize from the first days of a youngster's infancy.
When tested, the individual links may break, shattering the chain. When this chain is love between parent and child and the links hold fast, the child and parent remain safely connected. It is the testing of this chain of love through challenges and hardships which determines the true strength and sometimes even reinforces the metal.
The chain of love which binds parents Michael and Karen Lentin to their five-year-old son Joshua has been tested through a series of adversities. Through the most difficult of times, the links have held firmly together, demonstrating a strength greater than alloys of titanium or cobalt.
But the Lentins are not in awe or amazement of the strength of the bond; to them, their love for Joshua is an unshakable reality that will never weaken.
Joshua, who lives with his parents and sister Samantha, known as Sami to those closest to her, is a heart transplant recipient. While his transplant makes him "special," Joshua has an array of activities and hobbies which are as "regular" as cookies and milk.
Josh usually starts his day with a mandatory focus on the "special" part of his life. After Karen wakes him up by 8 AM in their Merrick, Long Island home, he takes his morning regimen of medications which includes cyclosporine, prednisone, Imuran and Persantine, along with his two "chewies," Tums and vitamins. If it's Friday, Karen gives him an infusion of gancyclovir, which lasts about two-and-a-half hours. Josh never makes a fuss about his medications, she comments. "It's always been part of his life. You wake up, go to the bathroom. You wake up, take your medications." Sometimes Karen has to draw blood for blood work or change a dressing, but, like the medications, the details of these special needs are taken in stride.
With the medical necessities momentarily addressed, Josh slips easily into the "regular" part of his life, including kindergarten during the week and playtime on the weekends. With a sweet tooth to match any kid next door, he likes to munch on Hostess cupcakes and chocolate bars. Like most mothers, Karen tries to balance his diet with healthy, nourishing food. And action rules the agenda each day.
Joshua says his favorite is "every sport" -- street hockey, baseball, soccer, golf, football, basketball and lacrosse. "Yes," his mother says, "He plays all of them. And he has equipment for all of them, too."
He likes Power Ranger figures, books and board games. Then there are a myriad of computer and Nintendo games, as well as Nickelodeon on television. Josh also spends a lot of time playing doctor, with a doll that has a broviac, a lot of stethoscopes and yards of gauze. His star playmate for doctor, house or dress up is little Sami. "They're very close," Karen notes. "They miss each other a lot whenever he has to go to the hospital. She's the one he cried for before he was put under general anesthesia. He yelled, 'I want to go home to my sister. I want to see my Sami!'"
Joshua has a host of friends at Kindergarten and on his sports teams, "especially Eric," he notes. He has a particularly close relationship with his 11-year-old cousin Adam, whom he plays with at least several times each week. "Those two live and breathe for each other," says his mother. And then there's Uncle David, who is like a second father to Joshua. "Joshua," Karen continues, "is a child of David's heart."
"Joshua is gorgeous, inside and out, He has given a great deal of hope and cheer to many people. He's brought out a lot of pain, too. He's had some difficult struggles," says his father. After seeing Joshua go through those struggles, Michael takes great delight in seeing Joshua enjoy special pleasures, like meeting most of the New York Islanders and the New York Mets, and even going into the locker rooms of the pro sports teams.
But, at the same time, Michael knows its important for Joshua to be treated like a normal five-year-old. He says that only occasionally have they had to remind Josh that he isn't above everyone else. "Once he thought he should bat first at Little League because he's special," Michael remembers. "He's not too special to get a kick in the butt," he adds with a chuckle.
He is special enough to know that it's important to take his medications faithfully. After his initial 8 AM dose of medications, he follows a regular routine of medication dosing at 4 PM, 8 PM and 12 Midnight. "Because of his medication regimen, he is never been able to sleep more than eight hours at a time," his mother comments.
Both Karen and Michael know that taking medication is a small price to pay for their son's life. "And Stadtlanders pharmacy really makes things easier for patients and families," Karen notes. "Everyone there is so professional and thorough. LifeTIMES is so helpful, to learn that others go through the same things. And Stadtlanders does a great job of promoting the needs of the transplant community . . . the U.S. Transplant Games were a great boost for us."
While the routine of Joshua's ongoing medication treatment, constant monitoring and regular blood work is now commonplace for the Lentins, this world of transplantation was unimaginable to them five years ago. That's when little Joshua was born, a healthy and rosy strapping baby boy. When he was 10 days old he started to suffer spells of cyanosis, or bluish coloration of the skin. The Lentins found out that Joshua had a congenital heart defect known as Tetralogy of Fallot, which is a condition including four specific abnormalities in the heart.
Joshua's doctors performed open-heart surgery and implanted a pacemaker for Joshua's tiny heart into his stomach. Because the pacemaker technology is based on adult metabolisms instead of a baby's fast-beating heart, the battery lasted only 15 months instead of the anticipated three years. Joshua received a new battery, and then went back to the hospital for his second open-heart surgery when a leaking valve had to be repaired. Then came another pacemaker, the third.
Michael and Karen hoped little Joshua's medical procedures were over, but the testing of their chains of love to their little boy continued.. His heart started to swell and the diagnosis was cardiomyopathy, or damaged heart muscle. Joshua's heart was taking up a massive 80% of his chest cavity. His lungs didn't have the space to expand and contract to capacity. Every time he had a cough, he would need a nebulizer and there were times when a cold developed into pneumonia. At the tender age of two and a half, he'd know when it was time to go to the hospital for his lungs to be treated.
In December of 1992 Joshua was listed for a heart transplant. Dr. Linda Addonizio, his pediatric transplant cardiologist at Columbia Presbyterian, now called Baby and Children's Hospital in New York City, explained that it was now a waiting game.
Only 10 weeks later, the call came in that there was a possible donor. "Those were the most endless 10 weeks -- and yet the fastest 10 weeks I've experienced," Karen remembers. "I got the call when I was out and I ended up crying the whole way home."
Josh became the fortunate recipient of a heart given by the selfless, generous donor family of a five-and-a-half-year-old boy who was killed in an accident. After less than seven hours of surgery, the Lentins saw an instantaneous change in Joshua's coloring. He was no longer gray, but a bright, warm pink; his new heart was working well.
Joshua was in the intensive care unit for three to four days before he was going up and down the halls hooked up to an IV pole and holding a hockey stick. "Yes, he's a tough little cookie," Karen notes.
Their concerns aren't completely over yet. After a very good 16-17 months, Joshua recently developed complications because of infection with cytomegaloviris virus, also called CMV. His platelet count, red and white blood cell counts were all affected, and some coronary artery disease was detected. He was treated with "heavy-duty medications," but the CMV had caused his coronary arteries to narrow considerably.
After several heart catheterizations, Joshua's doctors have determined he has coronary artery disease. The problem is so serious that he will need another heart transplant. In November, 1994 Joshua was again listed for a new heart and the Lentins are hoping there will be a matching donor before any of Joshua's other organs are compromised. Joshua's day-to-day activities continue and, other than a chronic cough, he's not showing visible signs of the sickness within his heart. But for the Lentins the reality is there, they are once again playing an agonizing waiting game.
Michael and Karen are not people to sit while they wait. As a matter of fact, supporting organ donation, financing research and helping other families going through the trials of cardiac defects or organ transplantation has become an active crusade for Michael and Karen, who formed a non-profit organization called A Gift From The Heart. They rely on friends and family for labor, and operate out of the offices of Michael Lentin's business, CitiSilence, which installs noise-reduction windows.
In 1992, its first year, A Gift From The Heart raised $5,000.00; in 1993 it raised $32,000.00; in 1994 it more than doubled its success, raising about $75,000. The money has been distributed to organ donor awareness efforts, research, working capital and operational costs. Michael has been able to get support from sponsors such as K-Mart, the New York Islanders and the New York Mets. "It's getting easier every day," he remarks. "We're using our successes to open more doors. I go to these corporations as a dad who is working to save his son and other youngsters. And the people I've met have opened their arms to me."
The Lentins also talk to groups about the importance of organ donation. They talk one on one to parents who are traveling the road of their children's organ failure and chronic condition, as the Lentins themselves are still traveling in that road. "I think sometimes it helps them if you just listen. Sometimes it helps to remind them that they're doing the only thing they can do. There really are no options when a child is sick enough to be listed for a transplant."
While Karen will gladly talk to anyone, she says that her support during the darkest hours with Joshua doesn't really come from other transplant parents. She credits her family and Michael's family, both close emotionally and geographically, and their friends, for giving support. "Joshua is my constant focus - and they are right there with me, with him as their focus, too."
Michael says that the way he deals with Joshua's life-and-death situation is to place his attention on others, guide them and be strong for them. "In order for Josh to get the best care, I feel that it is important to be on top of things, to be able to work with the professionals. So that's where I focus my energies."
But that doesn't mean he doesn't feel pain. "I'll admit that I go and cry. I get so angry that I'd like to kill somebody. I'm not superman." But, through the struggles he and his family have had, and still face, Michael is working to ease the path for those who will walk down it next. A Gift From the Heart is in its fledgling years, but it has the potential to make a great contribution in the lives of many people for years to come.
In the meantime, the Lentins experience the slow, painful days of waiting which all transplant recipients and their loved ones remember. Their hope and their joy are tied to the decisions of people they don't know. If the right strangers decide, in their own time of grief, to make the donation of a precious heart, Joshua will have another chance at life. This decision is out of the hands of the Lentins, but it is very much in their hearts and their minds.
While it was more than a century ago that Abraham Lincoln called love the chain which binds a child to his parents, we can witness the truth of this statement today when we look at families such as the Lentins. This precious chain, which holds parents' lives close to their children is created with links that are invisible yet strong and resilient. When parents face their children's life-and-death struggles, it is love than binds them together as their world can seem to shake and break apart. It is the strongest support a child could hope for.
Note: A Gift From The Heart is one organization which is utilizing Stadtlanders Wellness Center to raise funds to promote organ donation. In its initial three months of involvement, A Gift From The Heart has received $1,400 in profit through the Stadtlanders "Gifts that Give Back" program. For information on A Gift From The Heart, contact: Michael Lentin, P.O. Box 153, Wantagh, NY 11793-0153.
Courtesy of Stadtlanders pharmacy, this article has been reprinted on TransWeb as it originally appeared in LifeTIMES magazine.
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Last modified:
11 May 2000