The Tommy Fund for Childhood Cancer | Smilow Cancer Hospital at Yale-New Haven | 20 York St. | New Haven, CT 06510 | 1.800.974.5559 | tommyfund@ynhh.org

 
NewLogo92013.jpg
 

WINTER 2015 NEWSLETTER

A Publication of the Friends of the Tommy Fund for Childhood Cancer

Nothing stops Jaelynn

Seven-year-old Jaelynn Grullon wanted to raise money for The Tommy Fund. So she decided to ask family and friends to sponsor her in The Tommy Fund Family Day Kids Fun Run.
    But unlike every other kid in the Fun Run, Jaelynn ran on a prosthetic leg, due to her own battle
with osteosarcoma.
    Jaelynn had just turned 6 in May 2013, and for her birthday wanted a scooter. She twisted her ankle riding the scooter and after a week, she was still hobbling. So her grandmother and guardian, Sandra Garcia, called the doctor.
    An X-ray revealed that Jaelynn had osteosarcoma (bone cancer) and because the cancer was in the growth plate, she would need a below-the-knee amputation, Garcia said.
    The family met Dr. Joe McNamara, a Yale pediatric
hematologist/oncologist, who placed a port into Jaelynn’s chest to deliver chemotherapy.
    “In September of 2013 she was scheduled to have her amputation and we had to get her ready,” Garcia recalled. “I wanted to be the one to tell her. So I explained that she got a boo-boo on her leg and because her boo-boo carries germs, they needed to remove part of her leg.”
    Jaelynn seemed to accept this explanation.
    “She shocked me!” Garcia said. “She was OK and she understood. She knew she had to get this done.”
    Jaelynn, who was homeschooled for a year during her treatment, also seemed to tolerate chemo well and even danced around while receiving her infusion. 
Now a second-grader at Quinnipiac Elementary School in New Haven, she will tell her whole story to kids who ask on the playground, starting with, “do you have
five minutes?”
    “She’s doing great,” Garcia said. “Nothing stops her. She’s a happy kid. She’s well-rounded, she’s getting along with her siblings, and goes to an after-school program at the Boys and Girls Club where she has a lot of friends.”
   

 

Fundraising Roundup

Tula “Uncorked” Event Features Raffle,
Fine Wines

For the third year in a row, the Uncorked Food and Wine Tasting event was hosted by Tula Restaurant in Monroe. This year, Snowden Lane Partners sponsored the cost of the event so that all the proceeds from the raffle and food and wine could go straight to The Tommy Fund.
    “This event was the most successful yet,” said Marian Kochor, who chaired the event with her sister, Christine Charles. “We would like to thank Snowden Lane Partners and all of the sponsors for their contribution and support of this event.”
    State Senator Anthony Musto was the guest speaker. The event raised $13,420.

Team Tommy Fund riders gathered on the Guilford green for a water break. Though not all are pictured here, the team included: Mike Smith, Helen Williams, Jeremy Soboleski, K. Ayme Soboleski, Gary Kupfer, MD, Kalman Watsky, MD, Bayo Afolalu, Stephen Sirico, Madeline Guth, Kevin Guth, Howard Reiter, Marc Auerbach, MD, Antonio Scotto, Sean Thomas, Caitlin Smith, David Homer, Peter Smith, Andrew Bottinick, Jamie Bruce.

Team Tommy Fund riders gathered on the Guilford green for a water break. Though not all are pictured here, the team included: Mike Smith, Helen Williams, Jeremy Soboleski, K. Ayme Soboleski, Gary Kupfer, MD, Kalman Watsky, MD, Bayo Afolalu, Stephen Sirico, Madeline Guth, Kevin Guth, Howard Reiter, Marc Auerbach, MD, Antonio Scotto, Sean Thomas, Caitlin Smith, David Homer, Peter Smith, Andrew Bottinick, Jamie Bruce.

Team Tommy Fund Shines In Smilow’s Closer To Free Ride

Cancer survivor and The Tommy Fund board member Mike Smith has a knack for bringing folks together to raise funds for a good cause.
    Despite a sweltering early September day, Smith compiled a group of 19 riders, who pedaled over 1,400 miles the day of the ride and together raised more than $19,000 to support pediatric cancer patients and their families.
    The Closer to Free Ride has become a signature event for the New Haven area in its support of Smilow Cancer Hospital at Yale-New Haven attracting more than 2,000 riders who choose to ride 25, 62.5 or a full 100 mile route.
    “This was the first year Team Tommy Fund participated in Yale’s Closer to Free Ride and it was a huge success,” Smith said. “We are looking forward to a bigger and better ride
in 2015.”
    The Tommy Fund for Childhood Cancer Clinic is located on the seventh floor of Smilow, so it’s only natural that Team Tommy Fundparticipated in
the ride. 
    “The Tommy Fund is a top-tier organization focused on providing much-needed support to families with children battling cancer,” Smith said. “As a cancer survivor myself, I know the challenges these children and these families face. I am honored to be involved with this organization which helps children and their
families worry less about the little things and focus on what matters most — fighting cancer.” 

 

Family Day 2014

More than 600 people attended Family Day this year at the Yale Bowl including 485 runners or walkers in the 5K, Kids Fun Run or two-mile walk. We had distinguished speakers, an ice cream truck, a moon bounce, hot dogs, and face painting and scores
of volunteers who made sure every detail was attended to.
    “What a wonderful speech that Detective Mark DeCarvalho gave,” said Tommy Fund President Peter Parente. “He really gave everyone a picture of
what it’s like to have a child with cancer and how The TomFund can help families pay the bills so they can focus on what is really important: spending time with
their child. That was the most moving part of Family Day for me.”
    Ted Kennedy, Jr. stopped by to meeids surviving and fighting cancer and to talk with their parents and caregivers. Each survivor wore a special orange t-shirt and was recognized in the annual survivors’ ceremony.
    

Probationary firefighters from New Haven ran the 5K carrying a heavy hose inscribed with names of firefighters who have died in the line of duty. Pictured back row: Ernie Ouellette, Daniel Del Prete, Yaniris Cardona, Kevin Reilly. Front row: Ryan Jayne, Chris Joyce, bulldogs Nellie and Buddy. 

Probationary firefighters from New Haven ran the 5K carrying a heavy hose inscribed with names of firefighters who have died in the line of duty. Pictured back row: Ernie Ouellette, Daniel Del Prete, Yaniris Cardona, Kevin Reilly. Front row: Ryan Jayne, Chris Joyce, bulldogs Nellie and Buddy. 

Let’s Luau: A Celebration
of Survivorship

Every June across the country, there are numerous celebrations for cancer survivors. New Haven was no exception this year, and Smilow Cancer Hospital at Yale-New Haven hosted an event that included food trucks, dancing, Zumba, music, special guests and even doctors in thedunking tank. And The Tommy Fund stepped up to sponsor the event.
    Children are considered cancer survivors from day one of diagnosis. The luau was a day off from treatment when children got to hang out with physicians, nurses, child life specialists, parents and friends in Edgerton Park, away from the hospital.
    U.S. Rep. Rosa DeLauro, anovarian cancer survivor of more than 25 years, stopped by to offer her best wishes for the day. 
    “It’s so powerful to see our kids grow up and thrive based, in part, on the treatment we have given them,” said Dr. Nina Kadan-Lottick, a pediatric oncologist and director of the HEROS Survivorship Clinic. 
    Cancer care organizations including the Kacey Rose Foundation, Camp Rising Sun, the Circle of Care, the Leukemia and Lymphoma Society as well as the HEROS Clinic set up tables with activities for healthy living and information about how they help
cancer survivors.

 

 

Meet Our New Sponsors

Tariq Farid Foundation Gives Back to
The Tommy Fund 

The Tariq Farid Foundation has made a multi-year financial commitment to support our work with an initial donation of $20,000 in 2014.
    The Tariq Farid Foundation is the private
charitable foundation of the founder and CEO of Edible Arrangements.
    “Nothing is more devastating than learning that a loved one has cancer, especially a child,” said Farid.
When Farid was a young teenager, his 4-year-old sibling was diagnosed with leukemia. At the time, Farid’s family had only lived in the United States for a few years and were struggling financially.
    “The shock of the news and fear of what the future holds is bad enough. But if a family lacks financial resources, the burden and hardship are exponentially increased. There are transportation difficulties, parents have to choose between taking time off from work to comfort the sick child at the hospital or risk not being able to pay rent or mortgage,” said Farid. “When my family experienced this firsthand, people and organizations like The Tommy Fund stepped up to help us. I am honored to be able to now return the favor.”
    Farid’s sibling successfully finished treatment and is now doing well, more than 30 years later.
    The Tommy Fund is thrilled to welcome this
new sponsor.

 

 

 

 

 


SUMMER 2013 NEWSLETTER

A Publication of the Friends of the Tommy Fund for Childhood Cancer

The Mayor of 7-3

When Casey Ridgway slid into home plate during a softball game in spring of 2011, something didn’t feel quite right.

“My knee swelled up and was painful and I thought I just slid wrong,” said Casey, now 13, who lives in West Haven and attends Bailey Middle School.  

An X-ray revealed a mass on Casey’s right knee and her doctor sent her to Yale-New Haven Children’s Hospital for further tests.

“They did all these tests – a CT scan, an MRI, and the next day I had a biopsy, I was asleep for it. Then they told me it was osteosarcoma, bone cancer,” Casey said matter-of-factly. “I was supposed to go on vacation for two weeks, but the doctor said I had to start chemo, but they let me go away for one week.”

After more than six months of chemotherapy to shrink the tumor, surgeons removed more than half of Casey’s right femur bone and replaced it with a titanium rod that grows with her. The knee has also been replaced, but she retained her
own kneecap.

Casey continued with chemotherapy for an entire year, often staying in the hospital for a week
at time.

During all that time, Casey made quite an impression on the unit, 7-3. After decorating her hospital room with curtains and drawings, she kept busy making videos, watching television, playing with her iPad, and visits from the Hole in the Wall Gang child life specialists. She even convinced her doctors to do the Harlem Shake.
 
 “The staff love when Casey comes in, she always makes the best of things,” said Barbara Ridgway, Casey’s mom. “They call her Mayor Casey.”
 
When she lost her hair, she chose not to wear a wig, but to become a member of the Bald is Beautiful club and sport a bandana instead. When a little girl despaired about hair loss, it was Casey the staff asked to talk to her.

 

Jaelynn Grullon is excited to meet State Rep.Ted Kennedy, Jr., because they are both survivors of pediatric bone cancer. Jaelynn enjoyed Family Day 2014 with her grandmother, Sandra Garcia and her grandfather, Jerome Williamson.

Jaelynn Grullon is excited to meet State Rep.Ted Kennedy, Jr., because they are both survivors of pediatric bone cancer. Jaelynn enjoyed Family Day 2014 with her grandmother, Sandra Garcia and her grandfather, Jerome Williamson.

  Six months before the cancer ordeal, Garcia assumed guardianship of Jaelynn, her 9-year-old brother, Jaysaul and 4-year-old sister, Lyric. Around the same time, she lost her job of 12 years as a housekeeper for a New Haven area non-profit. Paying the bills became a challenge. That’s when The Tommy Fund stepped in to provide financial assistance for the family’s mortgage, electric, phone and other household bills. When Jaelynn balked at hospital food, The Tommy Fund provided gift cards to area restaurants.
    “It’s overwhelming, the amount of support we received from The Tommy Fund,” Garcia said. I appreciate them very much.”
    After completing successful treatment, Jaelynn and her family traveled to Disney World courtesy of the Make-A-Wish Foundation and stayed at Kids Village, a non-profit resort.
    “We were out by the pool at the hotel, and a man there offered Jaelynn a wheelchair. She looked at him like ‘are you talking to me?’ shook her head no, took off her leg, and hopped into the pool.”
    In October, Jaelynn was especially delighted to meet Ted Kennedy, Jr., also a survivor of pediatric bone cancer, at The Tommy Fund Family Day
5K event.

    “You know I met a very important man,” Jaelynn said of Kennedy. “He said we have something in common. Yes, he has a leg just like I do.”

 

Eli Whitney students after their buzzcuts for cancer.

Eli Whitney students after their buzzcuts for cancer.

Eli Whitney Students Get Buzzed For
A Good Cause

4th Annual Buzzcuts for Cancer supports
The Tommy Fund

Sixteen students, one dad, and a brave teacher at Eli Whitney School in Stratford had their heads shaved to help kids suffering from cancer. The students raised more than $3,000 dollars to help The Tommy Fund for Childhood Cancer.     
    The theme of this year’s event was “Hair Today. Better Tomorrow,” which the event participants wore
on a wristband. The participants included a father/son team, a team of brothers and a noble PE teacher,
Mr. Terwilliger, who allowed the children to “buzz” his head as part of their reward for their hard work.
    And while it’s primarily boys and men who take the buzzcut challenge, girls raise funds for The Tommy Fund, as well. They get a double dose of a good deed, by donating eight inches of their ponytails to Pantene’s Beautiful Lengths, which uses donated hair to make wigs for cancer survivors. Buzzcuts for Cancer at Eli Whitney is also supported by PJ and Company Salon of Shelton, who graciously donated their time and services.
    “Next year, we plan to reach out to other local elementary schools and challenge them to participate,” said Sherri Dzienis, PTO president at Eli Whitney School.
    Thank you to the following students for their participation, kindness and amazing fundraising skills:

Amaya Barrios
Jesse Brennan
August Bryk
Garrett Bryk
Cameron Cariarelli
Sam Dina
Jacob Dzienis
Scott Ezarik
Jacob Greenberger
Michael Guasp
Molly Kenny
Kyle Lewis
Martin Miller
Anthony Murray
Landon Poitras 
Frank Ramos

 

 

 

 

 

 

 

 

 

Cancer survivor Angelina Martin attends Family Day with her daughter.

Cancer survivor Angelina Martin attends Family Day with
her daughter.

Ted Kennedy, Jr. is living proof of life after cancer,” Parente said. Kennedy will begin serving as a state representative serving the shoreline in January, 2015. 
     Special groups including young alums
from Fordham University, probationary firefighters, Yale-New Haven Hospital employees and Eastern Connecticut State University students signed up to run or walk and raise money for The Tommy Fund.
     The AAA of Southern New England provided dozens of volunteers to man the various food and activity tables. AAA has been a vital source of support over the years, selling the holiday cards and providing both manpower and money to The Tommy Fund. 

 

 

 

 

 

 

Heather Stabinsky, with her parents, shows off her washable tattoo.

Heather Stabinsky, with her parents, shows off her
washable tattoo.

 

 

 

Tariq Farid’s younger brother battled leukemia years ago and received support from The Tommy Fund.    

Tariq Farid’s younger brother battled
leukemia years ago and received support from The Tommy Fund.

 

 

 

 

 


Casey Ridgway relaxes in the healing garden at Smilow with then-second year Yale medical student Aditi Balakrishna.

Casey Ridgway relaxes in the healing garden at Smilow with then-second year Yale medical student Aditi Balakrishna.

Casey is tall and graceful and before her illness played softball, basketball and cheerleading. After cancer treatment, she joined the swim team to build her strength. Her favorite subject in school is reading and she loves the book “The Giving Tree.”

In addition to the physicians, nurses, child life specialists and social workers looking out for her, Casey has formed a bond with Yale then-second year medical student Aditi Balakrishna. The two met in a buddy program designed by the medical school to give extra support to kids going through cancer treatment. “She’s the best,” Balakrishna said. “For someone her age, she’s funny and well-adjusted. It’s easy to spend hours with her and an amazing break from looking at pathology slides. I feel like I hit the jackpot getting paired up with her; I totally love her.”

After a year in remission, the cancer returned in March of 2013 showing up in Casey’s lungs. Casey is once again receiving chemotherapy and underwent surgery that successfully removed the tumors from her lungs. Still she remains upbeat and positive. Casey’s mom Barbara said the family is grateful to the Tommy Fund for paying all the household bills in March 2013.

“My husband had to take some time off because of Casey’s illness and he doesn’t get paid unless he works,” Ridgway said. “We were blessed that the Tommy Fund was there to help.” 

 

A LETTER FROM THE PRESIDENT

Dear Friends, 
 
have the privilege of meeting many of the families that we help during their child’s treatment at The Tommy Fund Clinic on the seventh floor at Smilow Cancer Hospital at Yale-New Haven. Although pediatric cancer is one of the worst things that can happen to a family, I’m always amazed at the strength and hope these parents continue to have. 
     Often, these same parents will volunteer for us, serving on our board or helping out at events. They just want to give back. 
     Megan and Mark DeCarvalho are two of those special parents. This time, I’d like to turn the space for my letter over to Megan so that she can tell you firsthand about her family.

Detective Mark DeCarvalho speaks at Family Day about how his family is affected by pediatric cancer. Megan DeCarvalho holds their daughter, Riley.

Detective Mark DeCarvalho speaks at Family Day about how his family is affected by pediatric cancer. Megan DeCarvalho holds their daughter, Riley.

My name is Megan DeCarvalho and I am a proud parent of a beautiful 22-month-old girl named Riley. Last year, when my daughter was two months old, she was diagnosed with stage four neuroblastoma, a cancerous tumor that started in her adrenal gland and spread to her liver. The initial shock of her diagnosis, the threat of losing her, and the whirlwind of emotions that followed throughout her treatment made for
a very heart-wrenching and traumatic time for
my family. 
    Our financial responsibilities became more pressing as my husband and I took extended absences from work to care for our infant daughter and 4-year-old son. Then, The Tommy Fund stepped in and helped ease some of the financial hardships we were experiencing and allowed us to spend as much time
as we could with our children during our
daughter’s treatment. 
    Having a child with cancer is a club that no one would choose to join. While our stories may be unique, and we may be in different places in our treatment, I have learned firsthand that many of us can identify with one another’s plight. The emotional support we received from fellow families, coupled with the financial support provided by The Tommy Fund can truly make a dark time that much more bearable.
    I am asking for your support to help this amazing non-profit continue its mission. Please help families like mine by donating online at www.tommyfund.org or by using the enclosed envelope.     

    Approximately 95 percent of monies raised serves pediatric cancer families.

Thank you so much for your help,
Megan DeCarvalho

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

T-Shirt Artist Brings Smiles to Family Day 

    Zaire Hall had big plans for his future. The 15-year-old math whiz wanted to attend Brown University and become a hedge fund manager one day. 
    A sophomore at Kolbe Cathedral High School in Bridgeport, he was known as a good student, basketball player and a kind and caring person. 
   In January, 2014, Zaire woke up with a headache and his parents brought him to Yale-New Haven Hospital where an MRI scan revealed a brain tumor. 
    While undergoing treatment for brain cancer, Zaire passed the time by drawing, said Marisol Lassalle, LCSW, his social worker. Zaire’s charming picture of a teddy bear with a heart on its chest was chosen as the artwork for the Family Day 2014 t-shirt. Zaire attended Family Day with his parents and three siblings, including a twin brother. 
    Zaire passed away on November 4, 2014. 
    “He was a wonderful kid,” said Henry Rondon, Kolbe Cathedral principal. “Very well-liked. Very polite.”

Zaire Hall chats with Peter Parente  

Zaire Hall chats with Peter Parente

 

Tommy Fund president Peter Parente visits with U.S. Rep. Rosa DeLauro, oncology nurse Denise Carr, RN and social worker Marisol Lassalle, LCSW at the Let’s Luau Survivor Day event.

Tommy Fund president Peter Parente visits with U.S. Rep. Rosa DeLauro, oncology nurse Denise Carr, RN and social worker Marisol Lassalle, LCSW at the Let’s Luau Survivor Day event.

Children learn to Zumba at Let’s Luau.  

Children learn to Zumba at Let’s Luau.

 

Snowden Key Sponsor of 2014

Snowden Lane Partners is an independent financial advisory firm based in New Haven that has stepped up to sponsor The Tommy Fund in many ways.
      Not only does Snowden contribute money, but partner Jeremy Soboleski sits on The Tommy Fund board, participates in the Family Day 5K and Closer to Free bike ride, and attends events with Snowden partners Kevin Guth and Stephen Fordyce.
     "We started out helping to manage the assets of The Tommy Fund, but over the years the relationship has grown to be much more,” Soboleski said. “Each member of our team, like most people, has seen all the bad that comes along with cancer, and it is a sincere pleasure to be a part of the good that can come from a few generous people working together for a common cause.”

The Soboleski family takes a water break on the Guilford green during the Closer to Free bike ride. Pictured, left to right, Holden, Amye, Jeremy, Mason and Marek.  

The Soboleski family takes a water break on the Guilford green during the Closer to Free bike ride. Pictured, left to right, Holden, Amye, Jeremy, Mason and Marek.

 


A LETTER FROM THE PRESIDENT

Dear Friends, 
 
I’ve just come back from visiting with families while their children undergo treatment for cancer on the seventh floor of Smilow Cancer Hospital at Yale-New Haven. Board members Tom Brunnock, Joe Bowman and I have decided to visit once a month. We’re trying to gather as much information as we can about what people need to get their family through the worst time in their lives. 

Everyone I met with had heard about us. People thanked me for paying for parking, providing refreshments, sponsoring the support group and supplying the toys that keep children occupied while they receive their chemotherapy.

But many people don’t realize, the Tommy Fund is flexible and specific and moves quickly. We can provide financial support to pay the mortgage, utility bills, insurance, cell phone, whatever the need may be. We can help families time and time again as their children receive treatment.

Some of our families are working and barely making ends meet when one of the parents must take a leave from work. We want parents to concentrate on their kids at this difficult time and not worry about finances.

One of the new requests we received was for lodging at the medical hotel New Haven Suites for a child undergoing a bone marrow transplant. This patient needed to be in a quiet, relatively germ-free environment with a private bathroom to avoid infection. We were happy to help.

Just ask us. That’s why we’re here.

Pres.Signature.jpg

Fundraising Roundup

The Tommy Fund is fortunate to have partners in the community who help raise funds to support our mission.
Here are some highlights about the volunteers and their events. 

Wine and Food Tasting a Huge Success

Soiree into Spring at Tula Restaurant in Monroe raised $13,460 with a wine tasting and buffet dinner attended by 75 people on March 25. Event chairs Christine Charles and her sister Marian Kocher organized Soiree into Spring for the second year and look forward to hosting it again. Guests enjoyed a raffle with prizes including gift certificates for restaurants, spa services, and even a dog-grooming salon. Connecticut Distributors Inc. donated all the wine spirits for the event. This group also donates 450 teddy bears to the children served by the Tommy Fund. 

“I met Tom Brunnock 20 years ago when he asked me to organize a golf tournament,” Charles said. “I’m lucky to have two healthy children who were babies when I first learned about the Tommy Fund and I love helping the Tommy Fund in honor of my kids and step-kids.” 

Kids Step Up to Support The Tommy Fund

Some 23 kids at Eli Whitney Elementary School in Stratford agreed to cut their hair in a fundraiser called “Buzz Cuts for Cancer” that raised a whopping $4,089 for the Tommy Fund on Nov. 5, 2012.

Boys sat still while volunteers from a local hair salon took a clipper to their hair, while girls donated a minimum of eight inches of their pigtails through the Pantene Beautiful Lengths program. The hair will be used to make wigs for children who have lost their hair in chemotherapy.

The child who raised the most money won a $50 Toys R Us gift card provided by the parent teacher association. Eli Whitney PTSA president Jennifer Falotico organized the event for the second year in row. “I went to the school social worker to ask her to recommend a cause that we could raise money for and I also had a friend who shaved his head to raise money for cancer care,” Falotico explained. “This year was a huge success; we doubled what we earned last year. The symbolism of hair loss is profound, and I’m so proud of the kids who weren’t afraid to cut their hair for this worthy cause.”

Smith Family Takes the CT Challenge for the Tommy Fund

For the past several years, cancer survivor and Tommy Fund board member Michael Smith, his dad Peter and sister Caitlyn have participated in the CT Challenge, a summer bike ride through Fairfield County that celebrates cancer survivorship and raises money to fund the Center for Survivorship.

Founded by Jeff Keith, who was diagnosed with osteosarcoma at age 12 and underwent 18 months of chemotherapy as well as the amputation of his leg, the CT Challenge allows participants to designate up to 60 percent of the money they raise to another cancer charity. In this case, the Smith family has designated the Tommy Fund.

“When my son, Mike, was undergoing treatment at Yale for Burkitt’s lymphoma, he saw a pamphlet for the CT Challenge and decided he would do the 100 mile bike ride when he recovered,” said Peter Smith.

Tommy Fund board member Tom Brunnock reached out during Mike Smith’s treatment, visited the family and listened to their story. Following Mike Smith’s successful treatment, the whole family began supporting the Tommy Fund, with Peter Smith’s government relations firm Rome, Smith & Lutz sponsoring the annual Tommy Fund Holiday Party.

The family formed a team for the CT Challenge and raised $6,538 for the Tommy Fund. “It’s an emotional event,” said Peter Smith. “There are 1,200 riders and they do a survivors’ lap. There’s an incredible camaraderie between the riders and survivors. It brings people together and makes you feel you’re aren’t alone.”

Jockey Hollow Middle School Dance Association in Monroe donated all the proceeds from a spring 2012 school dance, raising $5,000.

Back Row from Left: John Gach, Phil Digennaro, Christine Charles, Dave Charles, Kevin Gallagher, Steve Dineley, Umberto Morale Front Row from Left: Lisa Gach, Maureen Digennaro, Peter Parente, Marian Kochor, Trish Trefz, Lisa Morale Missing from Photo: Chris Trefz, Ross and Susan Bacarella, Nick Montanaro, Craig and Lisa Massaro  

Back Row from Left: John Gach, Phil Digennaro, Christine Charles, Dave Charles, Kevin Gallagher, Steve Dineley, Umberto Morale Front Row from Left: Lisa Gach, Maureen Digennaro, Peter Parente, Marian Kochor, Trish Trefz, Lisa Morale Missing from Photo: Chris Trefz, Ross and Susan Bacarella, Nick Montanaro, Craig and Lisa Massaro

 

Michael Guasp cuts hair for a good cause — with a smile. Below: Schoolmate Leila Mellen offers up her pigtails as well.

Michael Guasp cuts hair for a good cause — with a smile. Below: Schoolmate Leila Mellen offers up her pigtails as well.

Leila-Mellen.jpg
The Smith family and their Team Tommy Fund after they rode the CT Challenge in 2012.  

The Smith family and their Team Tommy Fund after they rode the CT Challenge in 2012.

 

Smilow Social Workers Link the Tommy Fund to Patients and Their Families

 

Social workers are an integral part of the hematology/oncology team that cares for children diagnosed with cancer — a team that includes doctors, nurses, a psychologist, a child life specialist, and medical technicians.

The social worker can help children and family members by providing emotional support and emotional interventions. The social worker also helps families navigate through the medical system and identifies emotional, supportive and financial resources for patients and their families. The social worker can assist children with re-entry into school and with school tutoring.

Based on the patient’s individual needs, social workers can provide a wide range of services from compassionate listening to community advocacy.

The Tommy Fund for Childhood Cancer Clinic at Smilow Cancer Hospital at Yale-New Haven is fortunate to have three social workers who help children and families cope with the diagnosis of cancer from the initial visit through the end of treatment, whether the goal of treatment is survivorship or palliative care.

Bernadette Bimonte-Hackett, LCSW, is a Reiki Level 2 practitioner, in addition to her role as a social worker. “I have utilized The Tommy Fund in many ways, especially when a child is newly diagnosed. Since many families are dependent on two incomes, the loss of one income can have a devastating effect, in addition to the complex emotional issues in dealing with a life-threatening illness,” Bimonte-Hackett said. “The Tommy Fund can alleviate some of the financial stress for families.”

Marisol Lassalle, LCSW, is a seasoned clinician, fluent in Spanish, who joined the oncology team at Smilow two years ago.

“There are many challenges for parents — first and foremost is to be able to care for their child, adolescent or young adult who has a life-threatening illness,” Lassalle said. “And then there are the practical considerations, from figuring out where to park at the hospital, to how to care for other children in the family, pay bills and keep up with work and many other responsibilities.

“The Tommy Fund is a wonderful resource that has been very helpful for many of our families. The Tommy Fund has helped with paying the rent or the mortgage and any other household bills for at least a month. In addition, The Tommy Fund pays for parking for the parents of all of our patients.”

Since Smilow began offering pediatric bone marrow and stem cell transplants, Jennifer Cohen, LCSW, has specialized in that area offering compassion, support, and understanding to patients and their families. “For our transplantation program, referrals come from within the section of pediatric hematology/oncology, but children have been coming here from all over the state and out of the country,” Cohen said. “Our program is the only place in Connecticut that offers pediatric bone marrow and stem cell transplants. This program has been active for twoyears and is growing each day. The transplants save lives and thechildren go on to do really well.”

Families often must take time off from work to care for their sick child. That’s when the Tommy Fund can help, providing financial support to the family so they can focus on their child at the most difficult time in their lives. The social workers educate the families about all that the Tommy Fund can do for them including providing financial support, meal vouchers, hair prosthetics, special funding for reflexologist services, as well as toys, games, coffee and snacks for families and patients.

 

 


Marisol Lassalle provides counseling and support to patients and their families. She’s also fluent in Spanish.

Marisol Lassalle provides counseling and support to patients and their families. She’s also fluent in Spanish.

Jennifer Cohen assists families whose children are undergoing bone marrow or stem cell transplants.  

Jennifer Cohen assists families whose children are undergoing bone marrow or stem cell transplants.

 
Bernadette Bimonte-Hackett is a Reiki Level 2 practitioner in addition to her duties as a hematology/oncology social worker.    

Bernadette Bimonte-Hackett is a Reiki Level 2 practitioner in addition to her duties as a hematology/oncology social worker.

 

 


 

FALL 2012 NEWSLETTER

A Publication of the Friends & Staff of the Tommy Fund for Childhood Cancer

 

The Tommy Fund supports Kevin and his family 

When Kevin Queiroz was just eight months old, his doctor felt a mass near his hip during a routine visit for a suspected ear infection.

“He had a tumor on his liver; it was the size of a baseball,” recalls Kevin’s dad, Sergio Queiroz. 

The pediatrician referred the family to Yale-New Haven Children’s Hospital where doctors diagnosed Kevin with hepatoblastoma, a cancer originating in the liver. 

To battle Kevin’s cancer, his mother, Cristiane, moved into the hospital with her son for several weeks. That left sisters Jessica, 10, and Stephanie, 9, home with their dad and a group of family and friends looking after them when dad traveled to the hospital to visit. 

“It took about a week to get the diagnosis,” Cristiane recalled. “Kevin had imaging studies, a CT and MRI scans, and a biopsy. The waiting was very hard.” 

After the diagnosis, doctors began the induction phase of the chemotherapy in order to shrink the tumor. Then surgeons removed the tumor, followed by more chemotherapy. When the chemo made Kevin’s hair fall out, Sergio shaved his own head in solidarity. 

Cancer takes an emotional toll on any family but it also wears them down financially as well. There are many unexpected costs associated with cancer that are not covered by insurance: parking, gasoline, meals. 

Shortly after Kevin’s diagnosis, social worker Marisol Lassalle, LCSW, told Cristiane and Sergio about the Tommy Fund and its mission to support families while their child undergoes cancer treatment. Sergio is a 

Kevin and his father, Sergio.

Kevin and his father, Sergio.

roofer in Danbury and when he needed to take time off from work to stay at the hospital with Kevin, the Tommy Fund paid the family’s mortgage. The fund also helped pay for gas for the car when Sergio made the hour-long trip from Danbury to visit Kevin and his mom. 

“When your child is diagnosed with cancer, it’s like a tsunami,” Lassalle said. “I tell parents that treatment is like a journey that they did not ask for, nevertheless, the team and I will go along on this journey with them.” The clinical social workers provide psychosocial and emotional support, counseling to the child, siblings and parents. They also act as a liaison with the school, provide advocacy (for health insurance, housing, Social Security Disability, community resources and to facilitate communication with the team) and help with financial needs. 

Once he was released from the hospital, Kevin still needed chemotherapy treatments several times a week, six cycles in all. A couple of months later, doctors discovered the cancer had spread to Kevin’s lung. Again, surgeons removed the lesion and Kevin began chemo again. 

In the meantime, Kevin is a typical toddler who loves bubbles, playing soccer with his older sisters, and is fascinated by the family’s pet turtles. Now 20 months old, Kevin is nearing the end of his treatment.

“He is a happy baby. He is a miracle boy,” Cristiane said. 

 

A LETTER FROM THE PRESIDENT

Dear Friends, 

It’s been a while since we’ve talked. I thought I’d take this opportunity to bring you up to date on all that the Tommy Fund board, friends, supporters and volunteers have accomplished recently. 
In a leap of faith, we made the decision to raise $1 million dollars over 10 years for the Smilow Cancer Hospital at Yale-New Haven. With that pledge, we now have a home: The Tommy Fund for Childhood Cancer Clinic located on the seventh floor of the new Smilow Cancer Hospital at Yale-New Haven. And what better home? It’s the place where our children and families are cared for. 

The beauty of the Tommy Fund is its flexibility. We have always stayed true to our mission of providing financial support to families going through cancer – paying the bills, covering parking at the hospital or the gas to get there. I’d like to say a special thank you to the Yvette and Arthur Eder Foundation for their very generous support of the Tommy Fund families. 

Over the years, we have also funded physician fellowships, the HEROS clinic — whatever the need may be. This time, we chose to invest in bricks and mortar because Smilow is a special place. Built with the idea that beautiful, clean, art-filled surroundings promote healing, Smilow is a state-of-the-art building befitting the level of care provided by the physicians, nurses and all the staff. 

And the Tommy Fund Clinic is a bright, cheerful place. It is a place of healing and a place of hope. Cancer treatment is a long and sometimes bumpy process. We thank you for helping us to help families navigate this difficult time in their lives.

TomFundPresSigTransBack.jpg

Firefighters Race through the Night to Raise $5,000 for the Tommy Fund

When the New Britain firefighters ran into the Connecticut Tennis Center on Family Day, it was as if the story of the Tommy Fund had come full circle.

The fund started back in 1953, when a little boy named Tommy Mozdzierz was one of the first children diagnosed with leukemia in Connecticut and later passed away from the disease because there was no real treatment at that time.

“The postman asked Tommy’s mother if there was anything he could do,” said Tom Brunnock, board member and an organizer for the firefighters’ relay. “She told him that Tommy, who was 4 years old at the time, would really like to receive some cards in the mail. Well, people sent cards from all across the country when they heard about Tommy.”

The New Britain Fire Department also heard about Tommy through a family connection. After making him an honorary firefighter, the men of the department raised funds for the family, who had fallen on hard times. And the Tommy Fund was born.

Nearly 50 years later, the fund and the dedication of New Britain’s firefighters is still going strong. Kevin Klett, an eight-year veteran of the department and an avid marathon runner suggested running an all-night relay to carry the $5,000 check that the department had raised through a beer-tasting event and an online donation page.

Race coordinator John Bysiewicz of JB Sports in Branford helped organize the logistics of the race that was similar to an Olympic torch run and a Ragnar relay, which is typically run at night with teams of people running various legs of the race and resting in a van that follows the runners through the course.

The race began in New Britain at 1 a.m. with a team of 10 runners, two vans, and a fire engine providing light and a safety escort. With a total of 45 miles to cover, the runners made their way through the adjoining towns of Berlin, Middletown, Middlefield, Durham, North Branford, North Haven, Hamden, and New Haven. In each town, the New Britain group picked up firefighters and a truck from that town. Some 50 firefighters and significant others participated, Klett said. 

“The firefighter brotherhood and sisterhood all came together that night,” Klett said. “We are here to help each other out, fighting fires and raising money for charity.”

About a dozen New Haven firefighters participated in honor of 13-year-old Aniello Cappetta of New Haven, a relative of a New Haven firefighter, who died of cancer earlier this year.

“The event affected us a little more to actually have someone close to us pass,” said Lt. Jim Kottage of the New Haven Fire Department. “If the Tommy Fund needs us in the future, we’ll be there.”

Race coordinator Bysiewicz said he was pleased with the relay and, now that the logistics have been worked out, looks forward to an even more successful event next year. 

“There are always small acts that can change the course of your whole life,” Brunnock said. “In this case, it was the postman asking ‘what can I do to help?’ We’ve gone from 1953 to 2012. People long ago planted the seed and it grew. Look at all the money we’ve raised. It all started in New Britain with people helping one family. Seeing those firemen run in the middle of the night, it was really something.”

 

FiremenRun.jpg

Uncork a Cure” raises childhood cancer awareness and funds to help families

In the glorious setting of Shakespeare’s Garden plant nursery in Brookfield, more than 200 people turned out for the 4th annual “Uncork a Cure” wine and beer tasting and silent auction to support the Tommy Fund.

“We want to raise awareness that childhood cancer is out there, and the Tommy Fund is out there to help,” said Justine Frisbie, an organizer of the event, whose son Nolan completed his last treatment four years ago. During that time, Justine met Lisa Pollock whose son, Zach, was undergoing treatment at the same time. 

“Finding Lisa and Zach was a real bright spot,” Frisbie recalls.

Nolan and Zach lent a hand as waiters passing out hors d’oeuvres at the event. Nolan is now a 7th grader who plays football and basketball at Rumsey Hall and Zach is a junior at Newtown High School, takes drum lessons and is an avid video gamer.

Pollock and Frisbie and their husbands George Pollock and Gordon Frisbie created the event to give back to the Tommy Fund for the support they had received during their sons' treatment.

A third family, Angela and Rick Ribas, joined the effort along the way. Their son, Riccardo, now 15, was also treated successfully at Yale-New Haven Children’s Hospital.

The committee is thrilled that Premier Wines and Spirits of Southbury donated all the beer and wine, Christine Bonomo gave inscribed wine glasses for the event and Mark and Steve Fancher of Shakespeare’s Garden donated the venue and a gorgeous planter for the auction. Inkwell Blues, the duo of George Pollock and Mark Douglas provided the musical backdrop.

“This year we raised about $15,000 to add to the more than $55,000 we have raised over the previous three years,” Frisbie said. 

 

Chair Lisa Pollock and son Zach, who was a waiter at the wine tasting event.

Chair Lisa Pollock and son Zach, who was a waiter at the wine tasting event.

Family Day: October 7, 2012

About 60 children took part in the 3/10th mile fun run, up the hill leading to the Connecticut Tennis Center and back around with a police motorcycle escort. Wearing orange t-shirts, 60 children who were successfully treated for cancer at the Tommy Fund Clinic at Yale-New Haven Children’s Hospital participated in the fun run.

Next came 213 runners and 140 walkers who completed a 5K road race on a mostly flat course through the tree-lined Westville area of New Haven. Many of the runners and walkers set up online donation pages to raise money for the Tommy Fund. All told, the event raised more than $75,000 and awareness for the cause of childhood cancer support. 

The funds go to families to help pay for rent, food, utilities and other daily living costs while their child is undergoing treatment. The Tommy Fund also supports patients by paying for parking, snacks in the clinic, games, toys, holiday parties, reflexology treatment and many more ancillary services.

Before the race began, a team of firefighters jogged into the Connecticut Tennis Center, bringing with them a check for $5,000 they raised for the Tommy Fund. (see related story)

“The best part of the day for me was being able to see the kids, families, doctors, nurses, social workers all come together in a setting outside the hospital,” said Peter Parente, Tommy Fund president. “It’s a privilege to be involved. I get back way more than I give. When I see these patients and families make it through treatment and then have enough strength left to give back to the newly-diagnosed patients, it makes all the effort worthwhile.”

 

 
 


Clown.jpg