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Abigail was diagnosed with childhood leukemia in March 2008, three days before her second birthday. She is still in treatment. Her mom, Allison, says that at The Valerie Fund Center, Abigal, “…is treated as a person, not a number.” For instance, she remembers the child life specialist blowing bubbles to distract Abigail and keep her from crying. Allison feels that people should support The Valerie Fund, “because they care about every child.”
Now 15 years old, Alex was diagnosed with Wilms’ tumor (a malignancy of the kidney) when he was 18 months old. His treatment consisted of six months of chemotherapy. Although he does not remember being sick because he was so young, Alex says that a treatment facility other than a
Amanda was diagnosed with Retinoblastoma (a cancer that affects the eye) when she was only 11 weeks old. Initial treatment was enucleation (removal) of the right eye and treatment of the left eye.Treatment consisted of laser therapy, then cryotherapy, and ended with chemotherapy. Her total treatment lasted two and a half years. Amanda attended Camp Happy Times twice. She says, “I made lots of friends. My parents were very happy knowing that I was at a camp with other children who understood and were more accepting of my differences. My favorite memory of Camp Happy Times is when I went swimming in the lake and rock climbing, because it was so much fun.” When asked what she is doing now, Amanda answered, “I am 12 years old and in the 7th grade. It can be very challenging at times but no matter what, I try to stay strong. One of the things that helps me is keeping in touch with some of the friends that I have made at camp, and remembering the fun times.” She went on to say, “There are so many children that need Camp Happy Times. It is like a home away from home. I look forward to visiting Camp Happy Times every summer, and this is one of the things that keep me going all through the school year.”
Amber thinks “the way patients and their families experience illness and treatment at The Valerie Fund is unique because the facility is family oriented.”
Like many of our patients, Amber developed special, close relationships with many of the staff members at the Center, particularly Shari, a nurse practitioner, and Christina, the social worker. Amber’s chemotherapy was administered as an inpatient procedure, meaning that during her course of treatment she was in the hospital for three to four days every week. Because her parents could not stay with her in the hospital, Christina tried to fill the gap and visit with Amber as often as possible. “We enjoyed playing games, discussing her interests, and surfing the Internet,” says Christina. Amber appreciated Christina’s companionship, as well as the way she encouraged Amber to express her feelings. It was important to Amber to know that “it’s okay to cry and be scared.”
Brian’s mother, Jamie, feels his experiences at The Valerie Fund are “a big reason why my son doesn’t mind going to the doctor’s office. He feels at home and the staff dedicates itself to enhancing this feeling. Laura and Lynne have both made going to The Valerie Center a welcoming experience. They always have smiling faces and a warm welcome.”
Cameron, age three and a half, is well enough to attend pre-school with other children her age. However, when she was two Cameron was diagnosed with acute lymphocytic leukemia (ALL). Her mom, Nancy, said the compassion and understanding of The Valerie Fund staff helped Cameron and the family cope with her illness and treatment. She remembers that even when she was receiving chemotherapy, Cameron was able to play with toys or do arts and crafts to help her get through the long hours it takes to administer treatment. When asked why people should support The Valerie Fund.
My diagnosis was a Wilms Tumor (Stage 4). I had surgery immediately to remove my right kidney and part of my liver and diaphragm. I underwent Radiation for 2 weeks and 6 months of Chemo. I remember getting off the bus the first year at camp when I was 6 years old and everyone was cheering so loud... I knew then I was going to be just fine away from home. I have now been to camp nine years in a row....it’s my favorite place in the world! Also, I remember having fun playing in the game room at the center. It would a been much harder on my parents. They would have had to travel out of state for my treatments every week instead of only 30 minutes. The Valerie Fund became my family away from home. I would not have felt that special at another center. The
Looking back, my life during the time I was sick definitely would have been different if I had not been treated at The Valerie Fund Center. The
I was diagnosed with Hodgkin’s Lymphoma in my neck in February 2006, when I was 14 years old. I was treated with chemotherapy until October 2006 and had radiation in December 2006. At first it was scary going to have chemo but the people at The Valerie Fund made my mom, my grandma and me feel at ease. At a different treatment center, I don’t think the doctors would have cared so much about everybody. The people at The Valerie Fund made you feel as comfortable as possible. They talk to you like a person and not like you don’t mean anything. The Center was great to our family. The social workers helped my mom cope, and the life coach helped me adjust. The wonderful nurses are always helpful. The first time I went to Camp Happy Times my mom made me go. The next year I was packed and ready to go. Now I am in the 11th grade at West Side High, maintaining my grades. I come to The Valerie Fund every three months now to have my blood checked. I do keep in touch with some CHT friends. I think people should support The Valerie Fund because they treat everybody like family. They go out of their way to make sure that we are okay—not just the patients, the whole family. They are your new family.
Seventeen-year-old Daniella was diagnosed with thalassemia major, an inherited blood disease prevalent among people from the
Seventeen-year-old Dayson was diagnosed with sickle cell anemia when he was two months old. He’s a high school senior, applying to colleges for next year. Dayson also helps his mom who is a single parent and works two jobs. Dayson remarks that, “One great memory I have is the Christmas party each year at The Valerie Fund. If I had gone somewhere else for my treatment, I don’t think I would have been treated as well, or get the attention I needed to get help.When I needed to have my gallbladder removed, the only doctor who does that surgery didn’t take my insurance, and the Center made a deal with him to help me. People should support The Valerie Fund because they make it a lot easier for the family and child to deal with the disease. And for me, they helped me when my parents got a divorce.”
“It has not been even three months” since her son was diagnosed, says Edward’s mom, Janine, yet “coming to the Center with the staff makes me feel all will be okay. They treat Eddie like family.” When she needs support or comforting, says Janine, “For me as his mom, Shari (a nurse practitioner) has been my shoulder to lean on. The nurses have been wonderful also.”
Janine points out that from day one she saw in action The Valerie Fund approach of treating the whole family, not just the child, and caring about everyone’s emotional—as well as physical—well-being. She says, “Upon being admitted, my son was scared and my husband and I were so shocked by the diagnosis we were numb. The staff was so warm and made us feel safe; they amused Edward in a hundred ways so he would know he was going to be okay.”
Elijah’s mom, Tracey describes The Valerie Fund Center where her son was treated as having a “family atmosphere.” At The Valerie Fund she found that, “Everyone knows everybody and we were like one big happy family. When one was hurting, we all were hurting. When everyone was there—staff and patients—it felt like a family reunion.
“Everyone at The Valerie Center played a special role during our son’s treatment. From the first day we entered those doors—December 30th 2008—until this very moment, every staff member has touched our lives in a special way. There is Dr. Rifkin who ensured us that she had a bag of tricks if something went wrong…Debi who so graciously gave us her cell number when my husband had to give Elijah his first Neupogen shot…Rahimah who squeezed us into the schedule when Elijah had to come in unexpectedly…Dr. Narang who speaks so softly as if nothing ever upsets her…Naomi who insured we would have the proper support system outside of The Valerie Center…Mr. and Mrs. Stan who volunteer their time to play games and do arts and crafts with EJ, just to see him smile…Lynne, Sharon, Kristine, and Laura who helped and comforted him when he had to go through something unpleasant such as a finger stick, blood transfusion, or dressing change, and were so patient and caring with EJ when he simply was not his happiest.
“On January 20, 2010, we came to The Valerie Center for a checkup. Everyone was high-fiving Elijah because his hair was growing back and he had his port removed! That moment brought a tear to my eye because for them it was a milestone but for me, we were getting our lives back.”
Emily, who is now 15 years old, was diagnosed at the age of eight months with stage II Rhabdomyosarcoma. Her treatment, consisting of chemotherapy, surgery, and radiation, was a compressed protocol lasting ten months. When asked about a memory she has of Camp Happy Times, Emily said, “I remember my first time going through the obstacle course. I was scared at first, but I did it anyway because it was one of those once in a lifetime opportunities. As I went across the first bridge I thought I wasn’t going to make it because my legs are shorter than other people’s. But my new friends talked me through it. When I went down the zip line it was like flying! I love it and can’t wait to do it again!” Emily is now a sophomore in high school. She’s thinking about the future: college and a career. She knows,“…for sure that I want to minor in theater. I love acting.” Emily thinks people should support The Valerie Fund because, “It gives kids a chance to do things that they may never have been able to do. Not only a chance, but encouragement—they push you to try.”
I have been dealing with acute lymphocytic leukemia (ALL) for 13 years, since I was just a few months shy of my fourth birthday. In addition to my initial diagnosis, I’ve had two relapses. Now I am an adult working as a special education teacher. The Center helped me and my family so much. They were not just doctors treating a patient, they became our family. Not only did I receive the best medical care but Dr. Kamalakar was caring, loving and dedicated to my whole family and myself. At a different treatment facility I would not have received the personal care, compassion and attention that I did at The
When Isabella was three, she was diagnosed with ALL (leukemia) and treated with chemotherapy and steroids. Going to The Valerie Fund Center for Isabella’s treatment was warm, comforting and safe. Anywhere else her experience would have been scary and less comforting. The
My son, Jarrett, was diagnosed with ALL on June 17, 2008, shortly after his third birthday. I could not imagine Jarrett having his treatment anywhere else. We looked at many options in the tri-state area, but the moment we stepped into The Valerie Fund Center at St. Barnabas Hospital we felt comfortable with the staff. We felt even more blessed when we found out that Dr. Rifkin worked here, too. We had fallen in love with her care when Jarrett was in the ICU at Newark Beth Israel because she was very patient and understanding. You could see her beautiful aura shining when she was around. When Jarrett began treatment, he asked a lot of questions about what was going on and about the various medical implements. So I made up a story that he and our family had to fight the bad guys—the bad cells—that were making him sick. We pretended that his IV pole was his sword and that his bed was a pirate ship. We told Laura the child life therapist this story our first week at the Center. The next time we came Beth, the art therapist, had made him a pirate costume, including a “sword” to slide over the IV pole. The staff at the Center takes excellent care of Jarrett and knows just what to do to make him smile and make him more comfortable. Stan the Train Man is one of Jarrett’s favorite people here and he loves playing with him. Laura always knows what to do or say to brighten Jarrett’s day and help him stay calm and deal with everything. And the whole staff has been great with me, with finding the proper resources to help in many areas of our lives. People should support The Valerie Fund because they are an amazing group of people in a wonderful facility who love their patients. They are giving and caring and always make you feel better. They give families lots of strength and hope. We would not have been able to get through this time without their service, love, and support.
“The Valerie Center is truly a home away from home,” says Jessica’s sister Cassandra. “The doctors and staff get to know the patient as a person. Because of the welcoming and warm environment, the children look forward to coming and getting treated.”
The Valerie Fund prides itself on treating the whole patient—mind and heart as well as body. Jessica is able to cite many examples of this philosophy in action. She says, “Dr. Rifkin makes me laugh when she says, ‘Later gator, in a while crocodile,’ Lynne makes me laugh when I am sad, and Laura makes me feel important when I feel like I am nothing.”
Because of this compassion and attention to all of Jessica’s needs, not just her medical treatment, “Jessica feels like a person,” says Cassandra. “It is so easy for Jessica to get caught up in her illness when at home. When she comes to The Valerie Center, she gets treated as a whole individual and not as a ‘tumor’.”
Her experiences at The Valerie Fund are an important affirmation for Jessica. As she says, “If the doctors treat me as a ‘normal’ kid, then I must be a normal kid!”
Hi. My name is Karena Oliveri. I was born and raised in
Keeyon was diagnosed with sickle cell disease when he was born 13 years ago. Sickle cell is a chronic condition that is managed, not cured. He says he appreciates how The
Leo was diagnosed with ALL (leukemia) in April 2007 when he was three years old. He was in the hospital for ten days when diagnosed, then had to come right back for four days later that week. Then, in July 2007, he developed pancreatitis as a side effect from one of his medications and was in the PICU for two weeks. Luckily, Leo has reached the maintenance phase without major delay. When Leo was first diagnosed, the members of the Child Life team would come by his hospital room and try to cheer him up. Laura Cunius would visit Leo every day, and sometimes bring toys or games to play. I don’t think Leo did more than grunt at Laura for the entire time he was in the hospital. He wasn’t interested, and we couldn’t blame him. Still, we felt bad for Laura because she would stop by each day with a big smile, sometimes with another member of the team, ready to play or sing songs with Leo. No dice. “Maybe tomorrow,” his mom and I would say to Leo, hoping Laura wouldn’t feel badly. What we didn’t understand then was that Laura and the Child Life team didn’t really expect Leo to play with them. They were building a relationship with him that they knew he would need throughout his treatment at The Valerie Center. By the time he was being treated as an outpatient, visiting The Valerie Fund Center at St. Barnabas in Livingston each week, he and Laura were fast friends. Laura decorated the Center on his birthday, led him in the Halloween parade, and found his favorite videos to play on TV each time he came in. Now, when Leo runs up the hallway on treatment days, his first high-five is reserved for Laura. Of course Laura is representative of the entire staff at The Valerie Fund Center. Leo plays with trains, puzzles, and games with volunteer Stan Beck, and asks for him when he’s not there. Probably the best way to show how important The Valerie Fund Center is to our family, is to say that when we tell Leo the night before his treatment that he’ll be going to The Center the next day, he gets a huge smile on his face and screams, “THE CENTER! Will Stan and Laura be there?”
Lizzie was diagnosed with T cell leukemia on October 24, 2006, when she was just 9 1/2 months old. She was classified as high risk due to her age and the aggressiveness of her type of leukemia. Our world stopped spinning when Lizzie was admitted to the PICU at
When asked why he has volunteered as a counselor at Camp Happy Times for a week every summer since 2002, Mark’s response is quick and to the point: “It’s my turn. You have to give back to those who gave to you.”
Mark was a camper at CHT for five years, starting with the second year that camp was open. As a camper his favorite counselor was a young man named Jeff because, “You knew he’d do something funny.” As an adult, says Mark, “I wanted to be that crazy counselor—and I am!” Campers expect to see Mark at flagpole each morning in some outlandish getup, and he’s more than happy to oblige, appearing each day in different outfits such as pink footy pajamas or a Captain America costume. He arrives at camp each summer with his Ford Explorer and an attached trailer brimming with toys and hats. “The key is to act like you’re eight, but remember they are kids and need guidance,” says Mark. He comes on stage in a different outfit between each act of the talent show, even dressing up as a girl, because, “All that matters is to make the kids laugh. It’s all about being goofy.” Mark also holds a fundraiser every year at the bar where he works, raising thousands of dollars for CHT.
Although the physical amenities at camp have improved dramatically since Mark’s days as a camper, the essence of camp has remained the same: all the kids support one another. He remembers one camper, Justin, who had spinal meningitis as well as cancer. He could not do anything for himself and needed 24- hour supervision. True to the CHT spirit, all the kids loved Justin and would go out of their way to come over to talk to him and high-five him. “This,” says Mark, “is what camp is all about.”
My name is Meghan and I was 14 years old when I was diagnosed with T-Cell Lymphoblastic Lymphoma. At the time, I was in school and had just finished a basketball game; I had to race over to get to the school auditorium in time to perform in the winter concert. I was out of breath, but I had been having difficulty breathing for a few weeks. My pediatrician thought it was a chest cold or allergy. It was not until the next day, when my parents took me to the hospital, that we found out how serious my situation was. A massive tumor filled my chest and was putting pressure on my lungs, heart and airway. Scared? Of course I was, but little did I know how much support was actually going to be behind me every step of the way on my journey to get better. I started treatments in February 2008 at The Valerie Fund under the care of Dr. Kamalakar and his amazing team of doctors, nurses, child life specialists and staff. Immediately I found myself making new friends and memories that I will never forget. I am now nine months into my treatment that will take a total of two years to complete. The Valerie Fund has given me something that not all cancer patients are lucky enough to experience, hope for a new and healthy life. The Valerie Fund helped me not only to learn from my condition but they taught me to embrace it. I will always see the glass half full instead of half empty. I couldn’t imagine myself being treated anywhere else besides The Valerie Fund. The team is always loving and caring with all of their patients, many of whom are very small children. They make the center feel more like a second home, not just a place to be treated. I will never forget those days when it seemed that everything was against me, but then walking into The Valerie Fund Center and seeing the smiling faces of everyone there always cheered me up. People should support The Valerie Fund because it is one of very few places where a kid can be a kid, but at the same time receive excellent care and treatment for their cancer or blood disorder. It is a place where we are encouraged to smile and hope. I am currently in the maintenance phase of my treatment, which will continue for another 15 to18 months. Although I am presently being home schooled, I hope to return to school in a month—just in time for winter sports and playing basketball again. It is a wonderful feeling knowing that I will be able to pick up where I left off nine months ago. All of my test results show that the tumor that once filled my chest is gone, and I know that my life will eventually be back on track. I will always remember The Valerie Fund and how everyone there helped me to conquer my cancer and teach me how to see the bright side of things ... Thank you for always being there.
Seven-year-old Rey was diagnosed this year with Hodgkins lymphoma. His first symptom was a lump on his neck. Rey’s family, took him to three doctors before ending up at The Valerie Fund, based on a recommendation from an otolaryngologist (also known as an ENT doctor). After visiting The Valerie Fund Center at The Children’s Hospital at Monmouth Medical Center, Rey’s parents decided this was where they wanted their son to be treated. What impressed them was how cautious the staff was before making a diagnosis, as well as how comfortable they felt with the staff and the general atmosphere at the Center. Rey’s initial treatment was a four-month regimen of chemotherapy. Once each month he would receive treatment for three days as an inpatient. Now, however, Rey only has to come for monthly outpatient checkups at The Valerie Fund Center. When asked if there was someone special who meant a lot to him during his illness and recovery, Rey responded, “Tilly the dog, because I love animals and Tilly helped me when I needed my port (for administering chemotherapy) accessed.” Rey and the staff would “access” the pretend port on Tilly—who is a stuffed animal, not a real dog—before accessing Rey’s, who says, “It made me feel better.” For Rey and his family,The Valerie Fund Center is a safe haven and a safe place where they feel welcome and loved by the staff. In addition, the staff was always available when the family needed them.
Sebastian was diagnosed with acute lymphocytic leukemia (ALL) on March 15, 2007, at the age of five. He had a low platelet count, so we went to The Valerie Fund Center at
In March 2007, at the age of ten,
On June 1, 2005, Stephen was diagnosed with ALL(leukemia). He was four and a half years old. His treatment involved daily chemotherapy from June 2005 through August 12, 2008. The staff at The Valerie Fund Center helped Stephen and our family because they were all so friendly and happy. Nothing even hurt! Everyone was confident that Stephen would do well. Stephen says that if he had to go someplace other than the
Being treated at The Valerie Fund is different than being treated at other facilities, says Tiara “because it’s like a big family. The people are nice and my family and I feel comfortable.” When asked to name some people who were especially supportive or comforting, Tiara said, “Christina gave me support throughout my pregnancy; Dr. Kam has been so good to me and my whole family since I was a baby; and Kathy makes me feel really good whenever I come to the Center.” Tiara says she has seen many instances that illustrate The Valerie Fund’s philosophy that medical treatment is most effective when you treat the whole patient and the whole family. “Throughout everything,” says Tiara, “The Valerie Fund has been there.”
Asked what is unique about The Valerie Fund, Veda’s grandmother, Shellie, replies that it’s our “genuine sincerity, compassion, and going far beyond the call of duty, 24 hours a day, every day. Most important, they keep the smiles coming. Joy and happiness have been just as key as chemotherapy.”
“As head of the family, having Veda treated at The Valerie Fund has been invaluable in helping me handle the fear, doubt, and anxiety,” continues Shellie. “I can remember losing my composure and needing the support of The Valerie Fund staff and other families who were dealing with the same pressures and worries—and they were there.”
While Veda was undergoing treatment, Shellie was diagnosed with heart disease. That was when TVF staff kicked into high gear, intensifying their focus on the entire family and providing Veda’s dad with support so he could carry on in Shellie’s role until she recovered. “Thank God for The Valerie Fund, “says Shellie. “I don’t believe we as a family would have survived without you.”
On November 21, 2006, Zachary was diagnosed with Non-Hodgkin’s Lymphoma Stage IV. He was on intensive chemotherapy for the next six months. By February 2007, Zach was cancer free. Zachary is thankful that he was treated at a
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