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The Coco Foundation

Meet Our Heros

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About
Friends of Coco
Every year, about 12,000 children and teens are diagnosed with cancer. All of these children are our heroes and we are proud to celebrate their strength and perseverance. These children all have a certain fighting spirit and presence that sets them apart from the ordinary. When Coco was fighting her fight against cancer, I met so many amazing children. Every time I spoke with them, I was inspired by their love of life, strong smiles, and will to live. I never once heard any of them complain about being poked, stuck, tired, or... having cancer. They are the reason the Coco Foundation works so hard to raise funds for a cure.

Our goal, as well as many others, is to see the day children no longer have to suffer from this terrible disease. These children are truly special and they have given me a gift I will never let go of: The true understanding of Hope and Love.

 
Coco's Heros

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Sophia Pasquarella
Sophia is a fan of Justin Beiber, a fashionista, a role model to her younger siblings and a very independent girl- your typical 16 year old, right? This Sophia is a 5 year old going on 16. Not only does she amaze her family and friends with her interests and intelligence but even more so with her ability to bounce back after a tough treatment and her strength to fight this nasty disease.

Since being diagnosed with Acute Lymphoblastic Leukemia in May 2011, after her mom noticed some bruising around her spleen area, Sophia has spent more than 50 days and nights in Children's Hospital of Philadelphia. Sophia's parents would always describe her as energetic and willful- those qualities have proven to be a necessity during her treatment. Maybe some of Sophia's strength comes from her younger brother and sister who are constantly asking about their big sister and as their mom says, "fighting with her". Maybe some of Sophia's strength comes from her parents who have, without reservation, put some of their own dreams on hold to dedicate all energy to Sophia's road to recovery. Maybe some of Sophia's strength comes from the community who have rallied behind the family by helping out in various ways to show their support. Wherever that strength comes from, it is something we admire about Sophia.
Isa Gonzalez
At thirty-six weeks pregnant, baby Isa was not moving as much as mom, Alisa thought she should be. Her mother's intuition hinted that something was not right. After going through several fetal tests, Alisa was informed that Isa had an isolated tumor on her adrenal gland. However, doctors suggested that she wait until Isa was born to see what should be done. Isa was born two weeks prematurely on April 9, but two weeks after, Alisa noticed that Isa's belly was hard, veiny, and distended. At this time, doctors discovered that Isa's tumors metastasized to her liver, diagnosing her with 4S Neuroblastoma. Neuroblastoma most commonly affects young infants and develops from the tissues that form the sympathetic nervous system. In its last stages, Neuroblastoma can spread to the liver, lymph nodes, bone marrow and/or skin.

When Isa was 4 weeks old she received, emergency chemotherapy and radiation. The treatment was given to her over the course of 3 straight days. Due to respiratory distress, Isa had to be intubated for several weeks while fighting her cancer. Isa spent two months in the NICU at the Children's Hospital of Philadelphia. The intubation took a major toll on Isa. She was not only fighting cancer but it was learned afterward that she was also battling a severe airway disorder. Nonetheless, Isa's parents remained hopeful for their baby daughter. Isa was due to receive a second round of chemotherapy but, through MRI scans, doctors saw 50% improvement, and regarded the treatment as unnecessary. Alisa says, "[Isa] fought back like a champ."

It was a year and a half of unforgettable trauma, says Alisa, but things are much better now. Isa is followed by an ENT doctor for her airway disorder and may need reconstruction surgery in the future. Isa still has tumors on her liver, but they are inactive and are being watched. She is considered to be in remission, but will not be clear until she is 5 years old. Nevertheless, Isa is now almost 2 years old, and Alisa says that she is "developing perfectly fine. She blew us all away with her resilience. She is the happiest little thing. She loves music and is quite the dancer! She also adores her cartoons, her favorite is the Little Einsteins."

As a daughter of a father who passed due to lung cancer, Alisa asked herself, "Why again?" But, she learned from her fathers' experience how to advocate for her own daughter. She knew to never give up and to always have faith. "From a cancer perspective," Alisa says, "I hope others know they are not alone. I know it is very scary." "There is a reason why this happened to us and I believe God knew we could handle it and take care of our baby girl."

We are amazed by the strength of Isa and her family, as well as the positivity they all exude. We are proud to call Isa, a "Friend of Coco"!
Kylie Stewart
Everyone remembers their first day of school, right? Do you remember the excitement of new clothes, new books, new pencils and the first bus ride? Kylie had that same excitement for her first day of Pre-K but her first day of school was cut short by her trip to the hospital for her diagnosis of Acute Lymphoblasic Leukemia (ALL). Kylie's mom says her reaction to her diagnosis and her subsequent treatments sums up Kylie, "she has always kept that smile on her face even through her pain and worried more about the child crying down the hall more than herself".

Kylie's mom, Kristin, helps us get to know this amazing little girl, "Kylie was born February 19, 2007. She has always had these giant, sparkling beautiful blue eyes that could melt your heart the second she looks your way. Her smile can light up the darkest room and her laugh can make the most sullen of rooms burst with joy. Not only beautiful, she is smart, adventurous, sweet-natured, and for as young as she is, she always cares more about everyone than herself. She is also a little girl who has had many struggles in her short life. At the age of 2, she was diagnosed as having autism (although at a relatively high functioning level) along with developmental delays and low tone on her left side. She was put into speech and occupational/behavioral therapies and, at every session, she put in her all always with a smile on her face."

Mom Kristin goes on to explain what impresses her about her little fighter, "I saw her as this teeny tiny person who could shatter with a strong wind. She is bigger now and i have seen and learned that she has always had amazing strength and fight inside her, enough to pull me and herself through what seemed absolutely impossible to get through. I have also learned that there is love that exists beyond any imagination, the kind that causes pain to the point where your heart could burst but at the same time make you feel so good, you think you're on top of the world!"

Although only four years old, Kylie inspires not only her mom but others around her. She represents so many kids fighting cancer, she is tough! As her mom explains, "I would want other parents going though the same of similar situations to know that children are absolutely and amazingly resilient. Don't give up on them and they will do their best not to give up on themselves. Their innocence and spirit can trump anything".

Kylie has big dreams for when she grows up--possibly a princess, a fairy or even a cancer doctor to help kids just like her. We are looking forward to seeing in which role Kylie will flourish, until then, we are proud to call Kylie a "Friend of Coco"!
Joe Degnan
Joe was born on March 20, 2002. On November 12, 2009, at 7 years old, Joe was diagnosed with AML Leukemia. Acute Myelogenous Leukemia is diagnosed when blood and bone marrow samples show a large number of leukemia cells. Joe and his family lived in The Children's Hospital of Philadelphia for almost 6 months. As they were staying at the hospital, Joe's family could not believe that this was happening to their perfect child. What impressed Maria, Joe's mother, was that kids, especially Joe, are very resilient. While he was undergoing this battle, Joe focused on his games and TV to get him through his days.

Joe is soon turning 10 years old. He practices a martial art called Aikido, which, as Maria notes, has really helped to build his strength since his bone marrow transplant. He likes video games, Legos, and likes to shoot basketball hoops. Maria says, "We haven't discussed the future. We are focusing on today." Through the experience, Maria says that "[she, and her husband,] have learned to be grateful for every day. We do not focus on the future." For other parents undergoing the same battle, Maria would like to tell parents to be very involved in their child's healthcare. Parents know their children better than the doctors. If you feel something isn't right, then it probably isn't.

We appreciate the positive lessons and the strength of Joe and his family. We are proud to call Joe a "Friend of Coco"!
Sophie Gray
On March 15th, just a month shy of Sophie's first birthday, Jennifer and Jim (Sophie's parents) took her to the doctor for the 4th time over the course of a few weeks. After being told at each visit that Sophie had a "bug", a double-ear infection or she is cranky because of her age, Jim & Jennifer fought for blood work to be done. Sophie was clearly not a thriving infant and Sophie's parent's instincts told them something was wrong. They didn't expect, however, for the diagnosis to be so devastating. Sophie was diagnosed with infant ALL - Acute Lymphoblastic Leukemia (it is unusual for a child under the age of 1 to have to fight this battle). Acute refers to the relatively short time course of the disease (being fatal in as little as a few weeks if left untreated).

The treatment plan for a female with this diagnosis is 2 years. Over this period of time, Sophie endured several rounds of intense chemotherapy. By the end of the first month, Sophie's spinal fluid showed no signs of cancer cells. She was considered to be in remission, however, she needed to continue through the treatment plan until the end. Not one cancer cell could be left or the disease would spin out of control again.

While Sophie had many, many bumps throughout her course of medicine, her strength was always apparent. It gave her parents the strength to keep a positive frame of mind. Having a child diagnosed with such a disease is never part of a parent's plan but it taught Sophie's parent's to learn to be 'present' every second of their child's life.

On March 19th, 2012, Sophie will take the last dose of her medicine. She will have completed the 2-year treatment plan. She will have to go back every month for blood tests for the first year and then every few months for the next four years. After that she will be considered in survivorship.

Sophie is a determined & strong-willed little girl. She knows what she likes & what she doesn't. She cherishes her books, her dog Cooper, her cars, her puzzles, her arts & crafts and she is a nature girl. In the Fall, Sophie will begin pre-school & learn how to socialize with children her own age (she could not be around large groups of children while she was sick because of a supressed immune system. She was only able to visit with her 3 close friends when everyone was healthy.) At the end of May, Make-a-Wish foundation will be sending Sophie & her parents to Disney World...a well-deserved gift for all. We are proud to call Sophie a "Friend of Coco"!
Justin Ortuno
Justin, the youngest of a triplet of boys, was born on March 8, 2004. A little after his 7th birthday, Justin was brought to the hospital after vomiting and having headaches. On June 16, 2011, Justin was diagnosed with brain stem glioma. Because it was so advanced, it was not operable. At the time, doctors told Justin's mother that he had 3 years to live. He was then given 6 weeks of radiation. Justin's parents then decided to bring him back home to be closer to his two other brothers.

At this time, Justin's doctors saw that he had 6 months to live. At first, Justin's parents were scared, but Justin was not. Justin's mother recalls him as a strong, young boy. He was always smiling, "no matter what." Though he was the youngest of her triplets, Justin was the leader. At the hospital, Justin always helped and played with other kids. At home, Justin's mother said he was very dependable and kind. Even during his stay at the hospital, Justin begged to go to school.

At 7 years old, Justin passed away on September 24, 2011. "We miss him a lot," says Justin's mother. "Thanks to him, we have more friends in Pennsylvania, after our move from New York. He taught us how to be positive and strong." "We still remember him smiling."

We admire the strength of Justin and his family. We, too, will always remember Justin as a "Friend of Coco."

We appreciate the positive lessons and the strength of Justin and his family. We are proud to call Justin a "Friend of Coco"!
Justin Pallozzi
Meet Justin, a very active and happy three-year-old boy. At Justin's nine-month visit his pediatrician noted that his abdomen was enlarged. Justin's mother Amy, thought it was just a baby potbelly. However, after the doctor felt his stomach he saw that Justin's liver was very large. Justin went for blood work, which showed that his hemoglobin was very low and his platelets were sky high. Justin's family was then referred to The Children's Hospital of Philadelphia where his hepatablastoma was discovered by ultrasound. Hepatablastoma is a tumor in the liver. He was immediately admitted, had a biopsy and port installed and began his chemotherapy protocol. He underwent 6 cycles of chemo over the course of 6 months - 4 prior to surgery and 2 after. Justin had a liver resection to remove the tumor. He lost 75% of his liver (the entire right lobe) and his gallbladder. Transplant surgeons from The University of Pennsylvania were called in to do his surgery because his tumor was right up against his vena cava, so the surgery was very tricky. Thankfully, the liver is the one organ in the body that can basically regenerate - his right lobe will never grow back, but his left has grown larger to take over for the missing lobe. Justin has a small amount of high frequency hearing loss from his chemo, but so far there have not been any other side effects to his chemotherapy treatments.

When Justin was only 8 months into remission, Amy, Justin's mom, found out she had desmoid tumors, which led them to find out that he (and his sister) had inherited FAP, which is what caused his hepatablastoma. FAP is a genetic disease that causes 100s to 1000s of polyps to form in the larger intestine (colon). People with FAP have an almost 100% risk of developing colon cancer - and their cancer is diagnosed at much younger ages than the general population. It also has some less common risks, one of which is hepatablastoma in children under 5. There is currently no cure for FAP and no real treatment options except complete removal of the colon. Even then, the risk of developing polyps/cancer elsewhere in the body or desmoid tumors is still very high.

Today you would never know Justin had cancer unless he lifted his shirt to show you his scar. He faces a lot of uncertainties in his future, but he has a lot of people praying for him and we are proud to call him a friend of Coco!
Naomi Chan
What happens when you have four girls from age ten to sixteen living in one house? Probably lots of talking, lots of sharing of clothing and lots of laughing. Just ask Naomi, she is one of four girls in her house and her mom tells us her three sisters REALLY miss her when she has to stay over in the hospital for her treatments. Her sisters wish they could be with her every day but they have to go to school. Naomi is bravely facing her treatments and proudly wearing her middle school ID badge in the hospital in order to stay in touch with her friends and family at home.

Naomi loves school. When she gets older she plans on being a music teacher so that she can share her love of music with kids. She is already getting a head start on teaching music. Naomi has taught herself how to play the piano. She went on YouTube to find videos of piano lessons and followed along. While in the hospital for her treatments she brought along her trusty keyboard to practice and foster her love of music. Her love and music combined with her desire to always make people happy, even if she doesn’t know you, will make her a fantastic and respected teacher.

While not playing music, Naomi loves to be outside with her sister and friends riding her bike or fishing. Her sisters and friends are missing her while she is undergoing her treatments and are looking forward to the day when she will join them again, making them smile, laugh and of course bringing along the music!

Naomi was diagnosed with leukemia in October 2011 while in the 7th grade. Her positive spirit and attitude are contagious among her family and something that her mom admires about her. When faced with the news that she was going to lose her hair Naomi decided to be proud of her new look. In one conversation with Naomi’s family you can feel the pride and admiration they all have for her. Naomi, we look forward to celebrating your accomplishments with you and we are proud to call you a "Friend of Coco"!