Tackling childhood cancer as a family
At the Tom Coughlin Jay Fund, we consider every family who is part of the pediatric cancer community part of our Jay Fund Family. One of the greatest privileges of the work we do is watching children who tackle cancer grow into young adults. Having long-term relationships allows us to understand the ongoing effects of childhood cancer and to BE THERE throughout the journey.
As a teenager, Samantha faced near insurmountable challenges, including the death of her mother and the incarceration of her father. Homeless and struggling to build a life on her own at such a young age, Samantha turned to a local shelter for housing and food. Soon thereafter, Samantha became pregnant and gave birth to her son, Legend.
Samantha found employment as a security guard, but the pandemic crushed all her childcare options, and she was forced to leave her job to care for her son. Shortly after his first birthday, Legend took a typical toddler fall but it resulted in significant bruising around his eyes.
This triggered an alarm that something might be wrong. A trip to urgent care led to a transfer by ambulance to New York University Langone Medical Center and a battery of tests and scans. Within hours, Legend’s doctors delivered the devastating news that he had metastatic neuroblastoma – a brain tumor that had spread to multiple sites throughout his body. He had tumors in his head, face and abdomen.
Legend immediately began six weeks of aggressive chemotherapy in the hospital and Samantha never left his bedside. Covid restrictions throughout the past two years meant Samantha was entirely alone – no one to accompany her to appointments or relieve her during long hospital stays. Weeks of chemotherapy turned to months and were followed by five weeks of radiation. The tumors in Legend’s body shrank but did not fully go away. The cancer affected Legend’s hearing, eyesight and speech and he required intensive therapy to aid in his development. In addition to chemotherapy and radiation, Legend’s treatment also involved surgery to remove a tumor in his stomach and a stem cell removal operation.
In the fall of 2021, Legend’s treatment options at NYU were exhausted and he was transferred to Memorial Sloan Kettering Cancer Center to begin a new protocol and more rounds of chemotherapy and radiation, along with antibody therapy. Legend now wears glasses and hearing aids due to damage from the tumors, but he is a fighter and his strong will and mischievous nature still shines through.
As the sole caregiver for Legend, Samantha is unable to work. With the help of the Jay Fund, Samantha and Legend were able to move out of the shelter and into their own apartment. The Jay Fund has provided financial assistance for rent, food, transportation and utilities.
Samantha is fiercely independent and protective of Legend and loves spending time with her young son. “My life is all about him beating cancer and being strong for my son. I hope one day Legend can play with other children and have fun in a park and be around family and friends. Having a sick child changes everything,” said Samantha.
The Tom Coughlin Jay Fund has been able to help Legend and other Jay Fund families located in New York City thanks in part to a grant from the Mother Cabrini Health Foundation.
(Pictured: Mila, left, and her dad, George)
Mila and her family’s arduous journey began last November when she was diagnosed with osteosarcoma at 8 years old. Weeks of chemotherapy, inpatient hospital stays, along with managing the family schedule and finances, have been all-consuming. Mila has been a champion throughout her treatment, but the whole family had to adjust to an insane schedule that left little time for family activities, friends and self-care.
“Our biggest challenge since Mila’s cancer diagnosis has been time,” said Mila’s father, George. “At the end of the day, it’s hard to find the time or energy for anything except planning for what’s next on the path of Mila’s cancer treatment. We have been introduced to a level of chaos we never knew existed and it has had an immense impact on every aspect of our lives.”
George and his wife, Jenna, have struggled to balance their jobs with managing Mila’s intensive health care needs. In addition, Mila’s younger brother, Niko, is just seven years old and is too young to understand the gravity of Mila’s diagnosis. Like many siblings of cancer patients, Niko misses spending time with his parents and sister and struggles to grasp why life has turned upside down.
Following a complicated surgery to remove the tumor in her left arm, Mila still faces months of grueling chemotherapy and the family’s difficult pediatric cancer journey continues. “Time is precious and has a remarkable way of showing us what really matters,” said George. “We hope that Mila will be cancer-free this summer and that it will be a new beginning for the whole family.”
(Pictured: Emma, right, and her mom, Katie)
The Tom Coughlin Jay Fund’s 2022 Valentine’s Day card was designed by 11-year-old artist Emma. We are so happy to report that Emma just finished treatment in January, overcoming cancer for the SECOND time in her life.
When she was just four months old, Emma was diagnosed with an extremely rare brain cancer. Emma’s second diagnosis of bone cancer came last May. Once again, she endured months of intensive therapy.
While Emma has been unable to attend school in person due to her compromised immune system, she enjoys using the art techniques her teachers have taught her at home. “I really love to draw and paint and it’s a great way for me to express my feelings,” said Emma. “If I’m mad and angry, I use red and orange. If I’m happy, I use yellow and green and other bright colors. But if I’m feeling sad and overwhelmed, I like to use a bunch of different colors.”
Emma looks forward to getting back to skateboarding and swimming and can’t wait to return to the classroom next fall and start sixth grade.
Addison and Jackie
Having a child diagnosed with cancer is heartbreaking. Having two children receive this devastating news is unfathomable. Last December, five-year-old Jackie and her family were looking forward to celebrating the holidays when doctors informed them that she had juvenile myelomonocytic leukemia (JMML), a rare form of leukemia. Their nightmare was amplified in February when Addison, Jackie’s twin sister, was also diagnosed with the same form of cancer, treatable only by bone marrow transplant.
Brian and Lauren, the twin’s parents, took a leave of absence from their teaching and real estate professions, respectively, to focus on the medical needs of their young girls. Doctors determined that Lauren could be the donor for both of her daughters, giving life twice to the girls.
Amid a pandemic, the immunocompromised twins were at constant risk of infection and complications. While Brian and Lauren remained home from work and the family isolated to protect Jackie and Addison, monthly mortgage payments loomed. “There were thousands of things on our mind: medication schedules, feeding tubes, keeping central lines sterile and all the possible complications that come with bone marrow transplants. But paying our mortgage and returning to our home was not one of them, thanks to the Jay Fund,” said Brian.
Despite being extremely cautious, the girls contracted a viral infection that resulted in transplant complications and a return to the hospital. Again, the Jay Fund provided mortgage assistance to lessen the financial burden and allow the family to focus on Jackie and Addison’s health.
“The financial support of covering our mortgage for several months while we were in the trenches fighting for Jackie and Addison’s lives cannot be understated,” said Brian. “The Tom Coughlin Jay Fund is an organization where support reaches the families and patients who need it, in a very real way. Thankfully, this year we look forward to celebrating the upcoming holidays in our own home.”
Meleah was diagnosed at the age of 10 with B-Cell Acute Lymphoblastic Leukemia (blood cancer) in September 2020. She had a very intensive treatment regimen and began monthly maintenance chemotherapy in August 2021. Due to recent complications that have arisen, including a COVID diagnosis and a procedure to remove a cyst on her pancreas, Meleah has had multiply hospital stays that have impacted her chemo treatment.
Meleah is an old soul who seems much wiser than her 11 years. Meleah has handled the ups and downs of her diagnosis and treatment with amazing positivity and an optimistic attitude. She loves school and wants to be a teacher and a singer when she grows up.
Because of supporters like you, the Jay Fund is able to provide financial and emotional support to families like Mikaela’s (pictured with her sister Vivienne)
Mikaela is an imaginative, delightful 10-year-old girl, who was barely three years old when she was diagnosed with Stage 4 Germ Cell Tumor, a very rare form of cancer for children. She has had multiple relapses, and has undergone numerous treatments, surgeries, and bone marrow transplants. Mikaela is currently splitting her time between Goryeb Children’s Hospital in Morristown and Memorial Sloan Kettering Cancer Center in NYC for a clinical trial that involves frequent hospital stays. Over the course of seven years, she has championed every stage of this journey with strength and perseverance. The Jay Fund has been by her side by helping with grocery gift cards, mortgage payments, utilities bills, phone payments, transportation/auto assistance, holiday support, as well as inviting Mikaela and her family to events.
“I am beyond grateful for the Jay Fund’s emergency fund,” says Mikaela’s mom, Yesica. “I feel like I can breathe. I feel like I have someone in my corner. Thank you for the classes you offer, the emotional support, and financial support.”
Jalayah is a kind, brave and energetic nine-year-old girl who enjoys painting, unicorns, arts and crafts, swimming, and scary movies. She was diagnosed as a baby with congenital dysplastic kidney disease and underwent a kidney transplant in 2013. In April 2017, Jalayah was diagnosed with Post-Transplant Lymphoproliferative Disease (PTLD is classified as a lymphoma, a cancer that affect the lymphatic system.) She underwent chemotherapy which was completed in August 2017. Jalayah has had two relapses of PTLD, once in 2018 and again in June 2019. She underwent a stem cell transplant in April of 2020 and completed her chemo last month at Newark Beth Israel Medical Center in Newark, NJ.
Jalayah has older twin siblings, Jamiyah and Jeremiah. They live with their mom Patrice. Their dad died a year before Jalayah’s cancer diagnosis. As a single parent and Jalayah’s caregiver, Patrice has been unable to work since Jalayah’s cancer diagnosis in 2017.
The Tom Coughlin Jay Fund has BEEN THERE for this family through their long journey, providing financial assistance for household expenses, transportation and holiday support, as well as including them in various in-person and virtual events.
Most recently, the Caldwell family’s furnace cracked, and the repair company told them it would be 3-4 days make the repair. The first night Patrice turned the oven on for warmth and stayed up all night to be sure the house didn’t catch on fire. The stress of providing safe, warm shelter for her family combined with Jalayah’s post treatment follow-up scans was tremendous. Mom reached out to ask for assistance and the Jay Fund immediately agreed to pay for a hotel for three nights.
Four days later when the Caldwell’s returned home, Patrice reached out with this message “Thanks a million again, we’re home!!! We came back to a warm house this morning. I truly appreciate the Jay Fund from the bottom of my heart. I thank you a trillion times, we love you ❤️”
In July of 2018, just before turning three, Makayla was diagnosed with Wilms Tumor, a rare kidney cancer. Makayla underwent surgery to remove the tumor and her kidney, then began 18 rounds of chemotherapy. She had follow-up scans in March of 2019, where they found a new spot resulting in a relapse. Now 5-years-old, Makayla is in her second fight of her life and tackling cancer with another 26 rounds of chemotherapy.
Despite the rollercoaster she has been put on, Makayla is always bursting with energy and she has a smile that lights up a room. She loves the color purple, watching Secret Life of Pets, and eating her mom’s homemade mac and cheese. Makayla is a gymnast at heart. Although cancer has forced her to stop gymnastics, she already has plans to join the competitive league once chemotherapy is over.
Makayla and her family have been deeply affected by childhood cancer, but one thing is for sure is that they always have a team behind them. “The best thing about the Jay Fund is I know they will always be there if I need help, and I know I can fall back on them,” says Makayla’s mom. “Their team has a heart of gold, and I cannot thank them enough.”
In July 2018, 8-year-old Megan was diagnosed with Acute Lymphoblastic Leukemia (ALL). Through this unexpected diagnosis, Megan’s mom, Maureen, says they have been overwhelmed by the financial and emotional support from the Jay Fund. From supermarket gift cards to special experiences, the Jay Fund is there for Megan’s family every step of the way. One event in particular was Jay Fund Family Fun Day where Megan and her family were able to enjoy themselves playing arcade games and bowling! For a short time, they forgot about cancer.
Mighty Miles got his nickname because his family best describes him as equal parts Minion and Energizer Bunny with a Tasmanian devil on the side. Just shy of his fifth birthday, Mighty Miles was diagnosed with Leukemia – news that made him feel anything but mighty. During his initial 8-month regimen of intense chemotherapy, Miles was unable to participate in sports, playdates, parties, or attend pre-school.
But Miles and his whole family were surrounded by a strong team of supporters — friends, doctors, nurses, even professional athletes, and the Jay Fund. He and his family attended Family Fun Day, cheered on the New Jersey Devils hockey team, and received gifts during the holiday season. Jodi, Miles’ mom, said, “Thank you for helping bring back Miles’ spark while creating lasting memories for our entire family.” Now that Miles is back to being a master LEGO builder and is cleared to go back to school, it’s safe to say Mighty Miles is back to his cheerful self with a smile that lights up a room!
Jennifer knew something was wrong from the first moment she held her newborn baby, Olivia, in her arms. “I couldn’t get her to warm up, even with the many blankets I wrapped her in,” recalls Jennifer. At only 12-days-old, Olivia was diagnosed with Craniopharyngioma, a brain tumor. Four days later, Olivia underwent an eight-hour, life-saving surgery where doctors removed her entire pituitary gland.
Today, two-year-old Olivia is vibrant and healthy. She loves to color, sing the alphabet, and make friends with everyone she meets. Olivia’s beautiful smile and infectious laughter have graced the Jay Fund’s annual holiday party and Valentine’s Day celebration. The family has been able to enjoy priceless family moments at Sesame Street and The Very Hungry Caterpillar. Additionally, the foundation has been able to help with car and mortgage payments thanks to your generosity. “The Jay Fund saved our family. Their support truly changed the trajectory of our home,” said Jennifer.
Olivia will endure follow-up appointments to monitor the side effects of the treatment for many years, but she and her family know they can always count on their Jay Fund team. No one fights childhood cancer alone. Thanks for being part of Olivia’s team!
During the summer of 2017, eight-year-old Austin was diagnosed with Osteosarcoma. The news was devastating and his youthful dreams of competitive swimming were replaced with life-saving surgery and chemotherapy treatments. Your generous support to the Jay Fund allowed Austin’s parents to be there with him during his treatments and provided opportunities for the family to enjoy being a family. Austin’s mom, Grace offered her gratitude in an email, saying, “Thank you for putting children like Austin first and helping them feel like kids during these rough times. Your support truly helps make the children and their families’ lives a bit brighter. For this, we will be eternally grateful.” Today, Austin is back in the water, chasing his Michael Phelps-like dreams with his family and Jay Fund team cheering him on. Thanks for being a part of Austin’s team!
Liam was 5-years-old when his parents were told he has Acute Lymphoblastic Leukemia in December 2014. After going through months of chemotherapy, Liam is now 2 years cancer free, and is the happiest he could possibly be. Liam’s family is still on the Jay Fund team today. His mother attended a mothers retreat, his family joined us at the annual holiday party, and Dawaun, his father, participated in the 2018 Jay Fund Radiothon. “When Liam was diagnosed, we wanted two things, one, for our son to be healthy and okay; and two, we wanted normalcy for him. That is what the Jay Fund did, they gave us those two things.” – Dawaun Smith
Jose is a 9-year-old boy who was diagnosed with leukemia in July of 2017. Jose immediately began treatment. Jose’s infectious smile and loving personality warms the hearts of the Jay Fund and the hospital staff. He has a way of making people smile even when he is having a tough time. The Jay Fund has helped Jose and his family with emergency household expenses this past year. Karen, Jose’s mom said “There are no words to describe what the Jay Fund means to Jose and our family. In his hardest moments, the Jay Fund was there to cheer him up. They have provided Jose with activities, which brings excitement to his life. The Jay Fund is always so helpful and we are extremely appreciative for their support. The Jay Fund should be proud of what they do because they do a great job.”
In November 2009, Elizabeth began to limp, which was thought to be a cause of a disease her twin brother had. After visiting the pediatrician, monitoring it was the best decision. Time began to pass and Elizabeth’s limp continued. The pediatrician did numerous tests including labs, x-rays and more over a span of six months before finally coming to the conclusion of what was causing the limp. On May 13, 2010, Elizabeth was diagnosed with Acute Lymphoblastic Leukemia (ALL). The news was shocking to everyone because of all the previous tests being negative. Elizabeth was very healthy and she did not have symptoms that are typical of a child with leukemia. She endured 2 ½ years of treatment which included things like daily oral chemotherapy and steroid pulses, IV chemotherapy treatments, and more. Elizabeth is now five years off of treatment and doing excellent. The Jay Fund was there throughout Elizabeth’s treatment, and continues to be there for them today. “We were able to gain financial and emotional support during this time from the Jay Fund team. From paying bills to invites to parties for our whole family, the Jay Fund was there and is still there today. They are what kept us together as a family. They provided us hope, support, light, smiles, all things that were desperately needed when a family is facing the unthinkable. We found a support system in an unexpected place and we cannot thank the Jay Fund enough.”
Gavin is a 9-year-old boy who was diagnosed on January 25, 2017 with Acute Lymphoblastic Leukemia (ALL), a form of cancer that is often found in children. Helping him fight is his father, Paul, mother, Cassandra and twin brother, Blaine. When Gavin was first diagnosed, Paul and Cassandra, like lots of families in similar situations, were shocked, devastated and were questioning what life was going to bring. The other question was what the cost and financial burden would be between doctors’ appointments, treatment, travel expenses and more. Both Paul and Cassandra were attending school at the time of Gavin’s diagnosis. Expenses for the household, college and now cancer treatment can add up quickly, and that worry came immediately after Gavin’s diagnosis. With the Jay Fund’s help, both Paul and Cassandra were able to continue their schooling. Paul finished shortly after Gavin’s diagnosis, and is now an Occupational Therapist. Cassandra is finishing school and will pursue her career as a high school math teacher. Financial and emotional help from the Jay Fund has made a huge impact on this family’s life and it’s because they were able to continue some normalcy, and Paul and Cassandra were able to focus solely on their two boys.
Jasie as she is known to her friends is an 8 year old little girl from New Jersey who has a smile that lights up the room. We first met Jasie at our annual Valentine’s Day Party with Zak DeOssie at Newark Beth Israel Medical Center. Jasie is a huge Giants fan and loved meeting Zak and posing for pictures with his Super Bowl ring. Later in May, Jasie and her mom attended the Giants Tour and Sundae Blitz at Met Life stadium where she met former Giants Super Bowl Champs Chris Snee and Shaun O’Hara. Jasie never stopped smiling as she toured Met Life Stadium and tried on Giants player’s size 18 sneakers. Because of chemotherapy side effects and high susceptibility to infection, Jasie is not able to attend school. She requires full time care and must be supervised by her caretaker at all times to monitor for treatment side effects and administer medications as needed. The family faced possible eviction if not for the Jay Fund’s support.
Hannah and MacKennah
Kasey and her family joined the Jay Fund in March when she was diagnosed at age three with Acute Lymphoblastic Leukemia. She has three siblings: Hannah (11), MacKennah (9), and Finn (18 months). Since Kasey’s diagnosis, life has changed for the her family, especially for Hannah and MacKennah. Both girls have provided lots of help and love to Kasey and Finn since childhood cancer became a part of their lives. They have also been a big help for their mother and father as they all help Kasey tackle childhood cancer. Kasey’s family is grateful to be part of the Jay Fund family. They are especially excited to have Hannah and MacKennah join J.A.Y.S. Team, the new sibling support program, so they can meet other siblings and share their own story on how they help their sister tackle childhood cancer.
At just two years old, Donte was diagnosed with Atypical Teratoid/Rhabdoid Tumor (ATRT), a very rare, fast-growing brain tumor. Mar’Keisha, Donte’s mom, was in shock of the diagnosis, and even more so when the doctors told her Donte only had a thirteen percent chance of survival. The Jay Fund has been very involved in Donte’s family by helping them overcome the unthinkable and BE THERE by paying for several mortgage payments for Mar’Keisha, and providing gas/grocery gift cards so she could tend to her family’s needs and focus on Donte’s well-being. Donte also has two sisters. When he was diagnosed with cancer, his mom was afraid that any sense of normalcy would be gone from her children’s lives. The Jay Fund made sure that was not the case. “The Jay Fund gave us opportunities, not only for Donte, but for his sisters too, so they could enjoy being kids during this time of our lives. I cannot thank the Jay Fund enough,” said Mar’Keisha. From circus tickets to support to make their holiday season feel normal, the Jay Fund choses to BE THERE every step of the way.
“The Jay Fund has been there since the day I was diagnosed with cancer. They provided me with an opportunity to smile when the days were hard and they provided me with the capability of seeing the future. Because of the Jay Fund, I am the person I am today and I can proudly say I tackled cancer. To this day, the Jay Fund is still impacting my life in every way and I could not be more thankful.”
Kacey’s mother, Krista, participated in the 2016 Jay Fund Momcology event. “I was blessed to go on a women’s wellness retreat. It was scary for me to go because I had not left Kacey since she she was diagnosed with cancer. I had neglected myself during Kacey’s treatment. This momcology retreat was instrumental in helping me focus on myself which I had not done in a long time. It helped me grow so I could take care of myself and in return take care of my family. I am thankful for the Jay Fund and the emotional support they provided myself and my family throughout Kacey’s journey of tackling cancer.”
“We were very fortunate to be able to take advantage of the things that the Tom Coughlin Jay Fund offers. Even after the horrible diagnosis with my son, we were still able to achieve things that we didn’t imagine we would be able to. Without the assistance and guidance from the Jay Fund Financial Coach, the process of being able to purchase a home would have been much more difficult. We are very grateful for the opportunity of the many services the Tom Coughlin Jay Fund has to offer.”
“Food was difficult in the hospital because all we did was eat out. When you’ve been in the hospital for over a month and you’re eating out every day, it gets expensive. The food vouchers that were provided by the Tom Coughlin Jay Fund allowed us to eat better and helped us save money which was a huge relief. The Jay Fund’s help also removed any potential financial long-term effects that could have happened because of cancer. We have a home because the Jay Fund chose to BE THERE and pay our house payments. The financial helped we received from the Jay Fund kept us on our feet and decreased our financial burden that cancer inflicted on us.”
“The Tom Coughlin Jay Fund supported us emotionally and financially when we were in the hospital with Mateo. It was such a shock to our family, we were so scared. But the Jay Fund was always there for us, paying our rent, our car insurance, and our electricity. We are so grateful, there will never be enough words to describe how we feel knowing they are there, and they will continue to be there, for our family and other families dealing with pediatric cancer.” – Cecilia, Mateo’s mom