College Athletes Winning Off the Field

College athletes throughout Rhode Island are learning that winning doesn’t always come on the playing field. It’s often in real- life situations, where their actions are translating into saved lives.

“It is important that young people realize how blessed they are and that not everyone is as fortunate as them,” says University of Rhode Island football coach Joe Trainer, whose football team is among 40 nationally involved in a marrow registration program. “Getting an opportunity to save a life will impact them long after their playing days are over.”

URI, Brown and Salve Regina Universities are currently hosting marrow drives regularly, and Bryant University will become the fourth Rhode Island school to join the program when it hosts a marrow drive in the spring.

Caroline Casey, a University of Rhode Island volleyball player, recruited from a Maryland High School to play for the Rams, epitomizes exactly what Coach Trainer is trying to convey.  “I have a healthy body that allows me to play volleyball,” says Caroline, who several weeks ago became the 10^th athlete or coach from URI’s football team sponsored marrow drives to donate life saving marrow.

The three football programs have accounted for nearly 2,500 marrow registrations, and 14 life saving marrow matches. URI has held five drives, registering 1,181 individuals; Brown has held four drives, registering 1,024; and Salve Regina has held two drives, registering 257. Both Brown and Salve have each had two matches that have come from their programs.

Brown coach Philip Estes believes the marrow registration programs are not only saving lives, but are a “great way to team build and create leadership roles within the program.  “Our football program has always had a strong sense of giving back,” he says. “We take a great deal of pride in having the opportunity to help our community. We have had many in our football family affected by different medical problems, and we as a team want to be proactive in helping those in need.”

“It brings the team closer together,” says Salve football coach Kevin Gilmartin. “It brings everything closer together. You realize what’s important. This is something that you are just giving of yourself. Our players are motivated because they believe in it.”

The national program started more than 20 years ago at Villanova University, after football coach Andy Talley heard a radio program that promoted the dire need for marrow donors. After hearing the radio program, he started the marrow program with his football team, and three years ago started a foundation to raise money to cover costs for marrow testing. (In Rhode Island there is no cost to those between 18 and 44 registering for the Be The Match marrow program. By law the cost is covered by health care insurance, and for those without insurance Michael’s Fund of Fall River picks up the cost).

For Caroline, like the athletes and coaches before, donating marrow was an interruption in what had been a successful season. For her recipient, a 32-year-old woman, it was life itself. A junior who is on an athletic , Caroline registered for the marrow program as a freshman, knowing that her chances of becoming a match were slim.

“When I got the call I was a match, I was excited and nervous to tell the coach,” she says.

But a visit from the athletic director and Coach Trainer encouraging her to donate, gave her the confidence to move forward. Her sacrifice was to miss a week of practice and games against Duquesne and Dayton.  For the team, number 32, the age of the recipient, became a rallying point.  “We made her our number 32,” Caroline says. “We played for her, used her to motivate the team.”

Caroline, whose major is kinesiology, won’t meet number 32 for at least a year, which is the period of time that the Be The Match program requires before arranging a meeting of donor and recipient. Donating marrow has brought things into perspective for her. “It’s helped me be more thankful.”

One of five children, her family has been committed to blood donation, at some level, for several years, and is intent on giving back.  Caroline will soon be making her second trip to an orphanage in Nicaragua for several days helping kids with mental and physical disabilities that were abandoned by their parents.

Reflecting on her donation experience, she says: “How simple it is to save someone’s life, a week of shots and a day of having your blood drawn. It’s not a big sacrifice.”

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, December 2013, Volume 12, No 4. 

A Very Special Story

We have a very special story today all in honor of Tyler Seddon, a Burrillville boy who is battling cancer for the second time. 

Local firefighters are scheduled to hold a blood drive and bone marrow registration for Tyler, today, February 25th from 2:30 to 7:30 p.m.  Tuesday at Pascoag Fire Hose #1, located at 105 Pascoag Main Street. http://bit.ly/OyGo4Z Video Via WPRI.com

Tyler is in need of a bone marrow transplant but does not have a matching donor in his family or on the registry. During his treatment, the 6-year-old has used over 200 units of blood and will continue to need more transfusions. See more of this story here http://bit.ly/1dusiqu Via WPRI.com

Tyler’s seventh birthday is just days away, and his mother’s effort to collect cards from police officers and firefighters went viral and gained nationwide attention.

In addition to cards that have been sent from officials across the country, some officers are working to make Tyler’s special day one to remember. On March 6 – his birthday –  Burrillville Police plan to pick Tyler up at his home and bring him to the station for roll call, where he will be sworn in as colonel for the day. Then Tyler will head to Wright’s Farm where over 100 officers and a Blackhawk helicopter will be there to meet him.

For more of this story click here http://bit.ly/1pp8dua Via WPRI.Com

First responders are welcome to send young Tyler a birthday card at 96 South Main Street in Pascoag, R.I. 02859.

If you would like to make a donation to support Tyler, you can visit http://www.gofundme.com/TylersTroops.

A blood drive for Tyler will be held Tuesday, February 25 from 2:30 p.m. to 7:30 p.m. at Pascoag Fire House #1. Visit ribc.org to make an appointment, Sponsor Code 0260.

Addition to this original post:

If you couldn’t make the #Blooddrive for Tyler Seddon last night we have some alternate locations and dates where you can donate for him and/or sign up for the Be The Match Registry – Rhode Island Blood Center and possibly be his match!

Please give group #0260 when donating.

IVIG Medication Saves Unborn Daughter

(Left to right) Elyse, Clara and Jennifer Henshall

It had been a normal pregnancy, but when Clara was born she was covered head to toe with what appeared to be a rash, bruises. Her platelet count was very low – 4,000. Anything under 50,000 requires a transfusion. After the platelet transfusion her count rose, and after a second transfusion she was stabilized. Since then she’s been fine.

The condition was caused by a genetic disorder – NAIT .

“With NAIT, through genetic incompatibility, my immune system sees the baby’s platelets as foreign invaders (or a virus),” explains Jennifer Henshall, Clara’s mother. “It sends antibodies through the placenta to kill off these foreign platelets. Thus, babies effected by this condition are born with little or no platelets and are at risk for internal bleeding either in-utero or shortly after birth.”

Clara was actually Jennifer Henshall’s second child, the first ending in a miscarriage. To prevent a similar situation when she became pregnant again, Jennifer received IVIG transfusions twice a week, beginning at 20 weeks of pregnancy. IVIG transfusions contain pooled products extracted from the plasma of more than 1,000 blood donors. Jennifer received 33 IVIG transfusions.

Elyse was born Feb. 24, 2012. Her platelet count was fine, but she suffered from a respiratory condition that kept her in the NICU for several days, but a condition that she would outgrow.

During her pregnancy with Elyse, Jennifer chronicled her experiences on her personal blog, deepthoughtthursdays.com. In her blogs she wrote of how challenging and difficult it was to be “carrying a high-risk pregnancy,” a risk that she had chosen to take, but knowing that the IVIG medication “would hopefully save my unborn daughter’s life.”

Today, Clara and Elyse play side by side, sisters who will share life’s experiences, filled with hope and expectations. Two healthy young children who owe their lives to platelet and plasma donors.

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, December 2013, Volume 12, No 4. 

‘Things like this don’t happen to our family’

 

At 39 Bob Van Winter was living the good life. A nice family, three young children, a wonderful wife, a beautiful home in Northern Rhode Island, working in a successful family business, playing golf, skeet shooting on weekends.

And when the doctors came in with a diagnosis of leukemia he knew they were mistaken. “Things like this don’t happen to our family,” he thought. “I had no sense of my own mortality.”

But leukemia has no specific guidelines. It doesn’t pick and choose those it afflicts based on anything. It ignores age, ethnicities, social and economic status. It doesn’t care who you are or where you’re from.

Bob Van Winter just simply had a cough that would not quit. His doctor prescribed antibiotics, and when they didn’t work he prescribed new antibiotics. It was early 1997. Bob was working hard at the family business, a plastics company, and Marybeth was home with the boys, the oldest six and the youngest not yet a year old.

The cough turned into exhaustion and night sweats, so much so that he’d sweat through the sheets. Bob was running fevers … but “things like this don’t happen to our family. He became alarmed when he drove to the office one day, arrived about 7:30, and told his brother he was tired and would shut his eyes for just a few minutes. He awakened five hours later, believing he had pneumonia.

The doctor ordered x-rays and blood work and sent Bob to Rhode Island Hospital, where an emergency room nurse greeted him and unexpectedly asked about his oncology consult. At about 6 that night a doctor who he would not see again came in and said if it were him he’d want to know. Bob had leukemia. He didn’t believe the diagnosis. “I didn’t think it was a big deal, I thought it was pneumonia,” Bob said. Marybeth said he was and remained in complete denial. Marybeth was determined to confront what was now being diagnosed as the highest risk, stage four.

“Only a few days later an oncologist went to Marybeth and said to prepare for the worst,” Bob says. She said she would, but challenged them to do all they could to help Bob recover.  “Marybeth, with three young children, didn’t have time to wallow in disbelief or despair,” Bob says. 

“My goal,” she says, “is to make sure everything is getting done.” She carried a notebook with her, taking notes every day so she would be able to answer any of the doctors’ question, and in turn not forget any questions she had.

Their community responded, with all forms of help. And blood donors – throughout Bob’s treatment he used gallons of red cells and platelets … and needed a bone marrow transplant. His younger brother was a perfect match.

“If it wasn’t for blood donors, Bob wouldn’t be here,” Marybeth says.

That was in 1997 and 1998, and Bob started to become active in the Leukemia and Lymphoma Society, a group he now chairs.

But cancer would strike again. In 2005, Bob was diagnosed with a cancer in his left tonsil. It was confined, but treatment, he says, was brutal – 35 rounds of radiation, seven rounds of chemotherapy and surgery. He received red blood cells and platelets during his treatment.

Eight years removed from any cancers, Bob and Marybeth are intent on giving back, helping others facing similar challenges. They had met in college, the University of Hartford, with dreams of a storybook life, one they had captured, but one that has been altered and strengthened by confronting one of life’s biggest challenges.

Their boys and Marybeth are blood donors, and Bob had received his first gallon mug shortly before his leukemia diagnosis. The boys are grown. Robert, 24, recently graduated from the Naval Academy; Nicholas, 20, is a student at Duquesne; and Andrew, 17, a student at Mount St. Charles Academy. They live in a beautiful neighborhood in Cumberland. Bob still works in the family business, the only family member still involved; Marybeth works in human resources at LSI Industries in Woonsocket. Marybeth ran her first half marathon shortly before her 50^th birthday with the Leukemia & Lymphoma Society’s Team In Training, raising funds for life saving blood cancer research.

As chair of the Rhode Island chapter of the Leukemia and Lymphoma Society, Bob is now helping others confront their own denials and, along with their families, develop the resolve that will ultimately lead to recovery.

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, December 2013, Volume 12, No 4. 

 

 

 

A Mother’s Story

For Jennifer Miner, hours have turned into days, days into weeks and weeks into months. Her daughter struggles for survival, something that doctors didn’t believe was possible when Grace was born at only 23 weeks, weighing less than a pound and a half.

The prognosis was grim. She might live a day, maybe a week. Now despair has turned to hope as doctors believe Grace could live a normal life. If it weren’t for blood donors, Grace wouldn’t have had a chance at survival.

And so it is with two other mothers, both of whom had complications in childbirth, and both of whom survived because of blood donors.  Here are their stories.

HEATHER BRYANT

Heather was expecting her first child. It wasn’t a difficult pregnancy, but she was a week overdue when they brought her into Women & Infants Hospital.

It was a difficult labor – 30 hours, she recalls, “from start to finish.” Logan was a big baby, bigger than anticipated, eight pounds, 11 ounces. About an hour after giving birth, Heather was preparing for visitors when she started to bleed. Instead of greeting visitors, she was rushed into surgery,

During childbirth, Heather had suffered an internal laceration, losing considerable blood. During surgery she received two units of blood products.

“It was such an unexpected event,” Heather said. “I’m very fortunate they had the blood available.”

Michael Gianfrancesco, Heather’s husband, is a teacher at North Providence High School, where the Rhode Island Blood Center holds blood drives. He hasn’t donated at those drives, but will now. “Maybe it takes an experience like this to realize how important it (blood donation) is,” he said.

For Heather, a grant writer and editor, is has also had an enormous impact. She was aware of the importance of blood donation, listening as her mother, an emergency room nurse in Canada, related stories of patients whole lives were saved becasue of blood donation. Now it has even greater personal significance.

AMANDA MORIN

For Amanda Morin, 25, the pregnancy seemed to be going fine. On Labor Day 2010, the delivery was perfect. She could only be reminded of the times that she had assisted others in her work as a Doula, providing support during labor and delivery, and assimilation back home.

But shortly after giving birth, as she got up to use the rest room, “I felt like I was going to pass out. I remember blacking out and waking up with doctors and nurses everywhere,” she said. In the hours and days after, she used 13 units of red cells, 18 units of  platelets and six units of plasma. She spent her initial hours in the hospital’s intensive care unit.

“While I always knew in the abstract that it was a good idea to donate blood, what happened made it real,” said Eleanor Morin, Amanda’s mother. “I never imagined there were situations where a person needed a dozen or more units. I couldn’t imagine what would happen if blood wasn’t on hand.”

Today, not only is Amanda healthy, but Killian, her newborn, is also doing well.

I can’t thank blood donors enough,” Eleanor said. “I’ve told all my friends who donate blood how thankful I am.”

To make an appointment to donate blood, call Rhode Island Blood Center at (800)283-8385 or visit our website http://bit.ly/1GYFRh and set up your next appointment to donate.

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, September 2011, Volume 10, No 3. 

Ten Year Old Alive Today Because of Blood Donors

Alex Raleigh is a pretty smart kid for a 10-year-old, tuned in to current events, not shy about giving his take on the last election. he’s poised, personable and alive today because when he was just four days old he received a complete blood transfusion that saved his life, giving him, as he says, a chace to grow up.

Healthy since the transfusion, Alex is thoughtful about what he wants to do when he grows up, suggesting that life will “take me on the right path”.

And he’s grateful for the doctors, nurses and especially for the individuals who donated blood that saved his life, and allowed him to dream of what he will become when he’s an adult.

Alex spoke before his church congregation at Woodbury Union Church in Cranston, and more recently at the Rhode Island Blood Center’s awards ceremony for the annual High School Hero program. Here’s what Alex has to share:

“As you know I had a “miracle birth” by the grace of God. But what you don’t know is there were many times following my birth that needed intervention, divine and otherwise, for me to survive. The most critical was getting blood.

“You see I was born a premie, and like most babies, I developed ‘yellow jaundiced.’ But since the hospital was so overcrowded some mothers sleeping in the hallways even no one though to check me for it or do anything about it as we were there only a day and a half. So my mom and dad took me home, not even knowing. They became concerned when I didn’t wake up for 24 hours-even to eat. They tried to wake me but couldn’t. After calling the doctor and going to the emergency room, they found out I was in a coma because of the high level of jaundice and had a ‘slim chance’ of surviving. God was looking out for me because a world-renowned specialist was at the hospital next door and came to treat me. he said that by now my blood was poisoned and for me to live, it would need to be completely replaced. So they took out all of my poisoned blood slowly and put ins someone else’s good blood so I could live. Then in about a month my body made its own good blood to replace what was given to me.

“I thank God for the smart doctors and nurses that saved my life, but especially for the unselfish people who donated their blood so I could live. So please donate. You may get to save some other baby’s life today. Thank you”

You can watch Alex speaking in his own words here.

To make an appointment to donate blood, call Rhode Island Blood Center at (800)283-8385 or visit our website http://bit.ly/1GYFRh and set up your next appointment to donate.

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, December 2010, Volume 9, No 3. 

609 Donations – Heading for 800

When Joe Pailthorpe was 21 and a member of the National Guard, when he responded to a request to donate blood, going to the Roger Williams Medical Center in Providence for the first of what would become hundreds of blood donations.

Now, some 49 years later, Joe recently donated for the 609th time since 1979 when the Rhode Island Blood Center was founded and began keeping records. He says it’s actually 648 if you count the donations made before the Blood Center actually opened.

In those pre-Rhode Island Blood Center days, each individual hospital has its own blood donor rooms.

Describing himself as a “dedicated blood donor,” Joe hopes to reach 800 donations. as a platelet donor, Joe, who turns 70 in May, can and does donate every two weeks.

He worked ay Fram in East Providence for 34 years, retiring in 1999 and since then has dedicated much of his time to a number of volunteer causes. Besides donating blood, he has coordinated some 40 to 50 blood drives and has been volunteering with the Blood Center’s Marrow Donor Program since its founding in 1991.

He is also quick to respond whenever the Rhode Island Blood Center needs help.

During 911, for instance, Joe immediately recognized that many people would respond by wanting to donate blood. He arrived at the Blood Center’s Providence facility to find lines well out the door. he volunteered his services, and for the next few days helped with crowd control, including asking some donor to hold off on their donations and return when they were actually needed.

As a result of his dedication to blood donation, this grandfather of three, has personally helped save perhaps well over a thousand lives.

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, June 2011, Volume 10, No 2. 

Art Provides Inspiration for Marrow Recipient

At the Artful Phoenix, a gallery shared by several artists on North Attleboro‘s Washington Street, Vartus Varadian shows her beautiful Chinese brush paintings, expressing a sense of calm and peacefulness, a celebration of life.

Once a senior brand manager at IBM, Varadian, 55, has now turned to her own painting for inspiration. “I put on music,” she says, “and I paint. It’s so relaxing, inspirational, like meditation.”

It’s the complete opposite of a life filled with deadlines, long hours, and constant pressure that came to a sudden end when Varadian was first diagnosed with a very rare form of cancer in 2009, Neuroendocrine that had spread to her liver.

Treatments were intense and apparently successful, but within six months of completing chemotherapy, she awoke with hr teeth aching and black and blue marks on her body.

She immediately went to the hospital and was diagnosed with leukemia, brought on by the use of a drug she had been taking during her treatment for Neuroendocrine cancer.

“It cured one cancer and gave me another,” she says.

Her only hope for survival this time was a bone marrow transplant. Finding no marrow matches within her family, she began her search through the Be The Match program for an unrelated donor. It was made even more difficult, because of the lack of Armenians in the data base, and yet, in two months she found a donor. That was last August.

Varadian was lucky. Of the three Armenians searching for a match at the same time, she was the one who was successful.

“Someone was looking over me,” says Varadian, married for 33 years to Paul, an entrepreneur involved in social media and epublishing. They have two grown daughters.

And it’s the support of family, friends, and the Armeniancommunity that helped Varadian maintain her tenacity in battling cancer successfully – twice.

At the gallery, the first in which she has displayed her works, paintings are on the wall, along with note cards. Other artists display nearby, and collectively they are marketing their works to the community.

Varadian, who has supported marrow registration drives, is also involved with a group of eight artists, all cancer survivors, who are “fighting cancer together.”

Article written by Frank Prosnitz; Community Manager, Rhode Island Blood Center. Frank is also the Editor of The Community Lifeline. This article first appeared in the Community Lifeline, June 2011, Volume 10, No 2.  To learn more about the Be The Match program, or to register for the program, visit our website.

Born A Hero

Meet Nate. Nate was born a hero when he donated his umbilical cord blood!

His mother, Jessica wanted to share their story.

“When I found out I was pregnant I was instantly bombarded with literature regarding private cord banking. I didn’t really feel that was a good option for our family since it was really expensive and I wasn’t sure if we’d ever need to use the cord blood.

During a child-birth preparation class, I found information about Rhode Island Blood Center’s Cord Blood Donation Program.  Not only was it free, but I knew if we couldn’t use out baby’s cord blood another family could benefit from it. I was sent an information packet to fill out and I scheduled an appointment to meet with someone at the center.

After it was determined I would be a good candidate for donation, I was given a box to bring with me to the hospital when I went into labor. The box contained everything the center needed to donate our baby’s cord blood.

In January, I went into labor and made sure to grab the special box along with my hospital bag. All that was needed was a simple painless blood test at the hospital to make sure everything was normal for the cord blood donation.

Also a really nice representative from the center came during my delivery to assist with the donation during the birth of my son. She was completely non-intrusive and she was only there for a short while to collect the cord blood.

Before she left she gave me an adorable shirt for my son that read ‘Born a Hero’. It made me tear up to think my beautiful newborn son was already a hero and I felt so good inside knowing that something that is normally discarded can be preserved and used to save a life.

I highly recommend donating your baby’s cord blood. It’s free and incredibly easy to do. You have nothing to lose and everything to gain.”

Jessica Beatty

If you are interested in donating your baby’s umbilical cord blood, or for more information on the Umbilical Cord Blood Program, you can visit the Rhode Island Blood Center’s web site at  http://www.ribc.org/full/inner/cordblood.shtml or call us at (401)248-5768.  

Cord blood will be collected by the Rhode Island Blood Center staff who will be at Women & Infants Hospital during the day, Monday through Friday. Some obstetricians may also participate in the collection program.