the kids who inspire us
Monday, February 26th, 2007, started out as a day just like any other day. It wound up being the day my life, my husband's life, my daughter's life and the life of everyone who loved us and our precious son Liam would be forever changed.
That morning I took a shower, got dressed, wore the earrings Liam picked out for me to wear because they were "really pretty." I took Liam to the preschool he had just started a few weeks earlier, brought him home for lunch and took him to the pediatrician in the afternoon.
Our appointment was to discuss some nebulous symptoms that alone were nothing but grouped together amounted, in my "mommy mind", to something. My picky eater became a pickier eater. My good napper changed his nap schedule and became an even better napper. His nagging cold just didn't seem to ever fully go away.
Our trusted pediatrician examined Liam then asked me to meet him in his office. I was concerned but not alarmed. He wrote orders for a chest X ray, CBC (complete blood count) and abdominal ultrasound. I felt a sense of relief that he was taking my concerns seriously. I asked him how quickly I should have the tests done. He said soon but it wasn't something I needed to do today. It was 4 p.m.
I drove straight to the closest hospital, which happened to be the one where Liam was born. The clerk told me the blood test and X ray could be done that day, but the ultrasound would have to wait another day until an appointment was scheduled. I looked straight into the clerk's eyes and very quietly said, "I really need this to happen today. I don't care how long we have to wait. We're not leaving without these tests being done." She looked deep into my eyes and into my soul and told me she would do everything she could to make it happen. We waited hours.
The last test to be done was the ultrasound. I had been through two pregnancies and countless ultrasounds, so I was familiar with measurements being taken but I didn't like the way the technician was taking too many measurements of my son's abdomen. I knew something was wrong. The technician told me she was going to have the doctor read the ultrasound that night instead of making me wait until the next day. I thanked her and went to the waiting room.
A man came out who identified himself as a doctor and asked me to come with him. My jelly legs carried me into a room that reminded me of what an air traffic control room must look like – lots of monitors, dim lights, and quiet. He was the only person in the dark room at that time of night. I was pushing Liam who was resting in his stroller. The doctor led me to a corner room and handed me a phone. On the other end of the line was our pediatrician, the man I had come to love and trust with my children's health. He told me the ultrasound found a large mass in my son's abdomen. It couldn't be identified but Liam was being admitted for observation that night, an oncologist had already been called, and a CT scan was scheduled for the next day.
I wanted to collapse but I couldn't because I was with Liam. I wanted to cry but I couldn't because I was in too much shock. I wanted to throw up but I couldn't because I hadn't eaten all day. I wanted to take back those words. I wanted my mommy instincts to be wrong. I wanted to reverse the hands of time but I knew that was impossible.
After another very long wait in a packed emergency room, we finally arrived in what would be the first of many hospital rooms we would occupy.
That night a very scared little boy was strapped down to a table to insert a needle in his arm to run fluids in him. The next day after a CT scan, I was told my 33-month-old son had stage IV cancer and needed an immediate operation. By that night we were transported by ambulance to Memorial Sloan-Kettering Cancer Center and started the odyssey of reclaiming our sweet son from the cancer cells that were trying to overtake his body.
On this odyssey, we have learned that pediatric cancer robs families of more children than any other disease. We learned about the vast disparity between funding for pediatric cancer and other cancers. We learned of the lack of interest on the part of pharmaceutical companies to invest research and development dollars in treatments and cures. And after we learned all of these shocking facts, we decided to do something about it.
Together we can make a difference. Together we can improve children's odds, children like my son who I love more than anything.
On a bright and beautiful summer morning, my adorable daughter Anjali woke up with a limp. She smiled sweetly as she tried to steady herself by holding onto the bedroom wall. Within 30 seconds her walk was normal. I dismissed it as nothing. How could I worry about a limp that disappeared just as quickly as it came on? We were at a lake the day before, and I thought perhaps she had hurt her foot. It felt normal and I was not worried until the next day and the next day as her limp grew worse.
This began our journey with pediatric cancer. Anjali was almost 2 and a half years old. She never complained. She never told me anything hurt. We whisked her around to all the best doctors until I demanded an MRI. I will never forget that day. It is etched in my mind forever. It is a day that changed Anjali's and my family's life forever. We went from normal to frightened, devastated, and heartbroken within a couple of hours. The doctors found a mass, a VERY large mass in Anjali's abdomen. The doctor's grave face said it all. I sank to my knees sobbing hysterically. I couldn't breathe, I knew, I just knew it was cancer.
And it was. It was neuroblastoma, stage 4, and it had spread into her bones. My precious Anjali, not yet 3, diagnosed with an aggressive pediatric cancer. How can I tell you how much that changed our lives forever? We were your average family. There was nothing different about us. We lived our lives, every day, like everyone does. Cancer is like that. It takes your normal life and rips it apart. It shatters your heart and your dreams.
Sweet Anjali fought neuroblastoma for 8 months. She gave it everything she had. She fought hard and bravely. She made the best out of everything. She smiled, she joked…and she suffered. After 8 months of treatment, her poor, little body couldn't take it anymore. Her heart and spirit were strong but her body had went through enough. On May 26, 2010, at 9:50PM, she passed from this life peacefully into the next. Anjali was only 3 years old.
I never saw anyone with a sweeter, kinder soul. She loved everyone. I never saw anyone fight as hard as she did. I really thought she would make it. She was so full of life, fun, and personality! She had a magnificent character. Cancer could never take away her sense of humor! She was so loved by so many people. She even had and still has, her very own army, Anjali's Army, who prayed, loved, and fought for her every step of the way.
Now Anjali's backpack she picked out for preschool is empty and is packed away in a cardboard box because it rips my heart out to look at it. She will never go to a sleepover, giggle with teenage friends, learn to drive a car, bake cookies, or graduate from college. She will never get married and have a daughter of her own. She was robbed. My entire family was robbed. Anjali has a brother, Krish, who is 5 years old. He misses her terribly.and says Anjali is his Angel now.
Anjali was only 3 years old. She deserved to live a long life but cancer stole her from this Earth. We NEED to do whatever we can to find a CURE! We need to buy cookies and hold bake sales so other children have a chance to grow up, strong and healthy! We need better treatment options. Our kids deserve to be kids. It is too late for my daughter but there are thousands of brave and beautiful children in this world, waiting silently and hopefully, who deserve to have a LIFE…a CHILDHOOD! Anjali deserved to live. Let us make it possible for other kids with pediatric cancer to have a long life…a life that has quality, happiness, and hope! When you buy a cookie or hold a bake sale, you are really giving a child hope.
Diagnosed with stage 4 cancer on March 27, 2007
In March 2007, I picked up Grier in the carpool line at his preschool, and he told me all about his day and how he raced his friends on the playground. A few days later, we were admitted to our local hospital for tests because Grier had a tummy ache that kept reoccurring and a limp that occurred overnight. We were later told after a lot of tests that Grier had a large tumor growing in his abdomen and our long journey began. Grier was diagnosed with stage 4 cancer on March 27, 2007. He underwent intensive treatment including 7 rounds of high dose chemotherapy, blood and platelet transfusions (too many to count), numerous surgeries—including a 10 hour surgery completed in October 2007 to remove the tumor, radiation, and a clinical trial called 3F8 at Memorial Sloan-Kettering in NYC.
We need to make sure pediatric cancer is funded so better treatments can be found as well as early detection and prevention. Cookies for Kids' Cancer is a great way to encourage people to make a difference by doing something so easy like holding a bake sale! I truly believe if it takes a village to raise a child than it will also take a village to find a CURE for pediatric cancer.
Ila Jean "Bean" is our youngest child. She is adored by her brother Howie and her sister Monica. She was our baby girl and only 18 months old when we got the devastating news that she had a mass in her abdomen. On August 29, 2006, Ila was diagnosed with Stage IV Neuroblastoma. Ila's little body was full of cancer and before we knew it she was in surgery, had a central line and was hooked up to her first round of chemotherapy. I knew in my heart she would make it, but the road would prove to be long and hard. She went through seventeen months of treatment before finally showing no evidence of disease. Ila wasn't your typical child. She had her own path that always surprised the doctors. Ila Jean went through a total of twenty three rounds of chemotherapy and six rounds of antibodies along with radiation. Her treatments ended in May of 2010 with her last round of 3f8 antibodies. She was finally finished. Cancer free. A survivor.
In late January 2011, she had reached three years cancer free. We were elated. Life was beginning to feel normal. She was excelling in Kindergarten and was doing great. She loved swimming and had become a little fish in the water. This spring she surprised us by taking off on her two-wheeler without training wheels and quickly became a little speed demon. Ila was full of life as always - quite the busy body and a little stinker at heart.
On May 5, 2011, Ila went for her regularly scheduled scan, and as I watched the MIBG scan, I saw it. Ila had a new tumor. After 3 years of being cancer free, it had returned. Fortunately it was a localized tumor in her abdomen and bone marrows were negative. Ila had surgery at Sloan Kettering by the wonderful Dr. Laquaglia to remove the tumor and as it turned out, the tumor proved to be a very aggressive one. We were lucky to find it when we did. Ila has since had her first round of chemotherpy here and is recovering. She will be in treatment for months to come now. Our lives once again have been turned upside down. As a family, we will stay united. This time the kids are older and understand more. Our challenges will be different, but our goal remains the same. Her life is what we will live for each and every day.
November 13, 2009 was a day that our lives changed forever. Our beautiful son, Kyle had been feeling a little off for a few months. Low grade fever, poor appetite, difficulty breathing were things bugging him a bit. It never slowed him down as he continued to run, play and do the things any "normal" 5 year old boy would do.
On Thursday November 12, Kyle had his kick-off party for hockey season. He was going in to his second year, a mite. He was so excited. He had been skating for a couple of years already and doing really well. I remember being so proud. At his party he complained of pain in his back. He wanted to go home. So not like Kyle who loved being the center of attention. We took him home early and that night he woke up in what we thought was a night terror. His body was seizing up, he was in pain. Again, we thought it was a nightmare and Leslie pet him back to sleep. It was then we decided to take him to another doctor to see if we could figure out what was wrong. The next day we took him in, he didn't look well; they did a blood test, sending us to Children's Hospital in Minneapolis. It was that night that we first heard, "we think your son has cancer, we believe its A.L.L. leukemia, and we are 99% sure". Immediately I Googled it, saw it had over a 90% cure rate. We were devastated but felt like our Kyle would be one of the 90% who would beat this! We went through the weekend continuing this thinking. On Saturday we met Dr Richards who told us "Kyle has cancer, it's metastasized but we don't think its Leukemia". It was right then for the first time that we heard the word, Neuroblastoma. I Googled that and saw his odds, we knew we were in for a long battle and his chances for survival were slim.
Kyle fought so hard for 16 months. We moved to NY from our home in Minnesota to have him treated at Sloan Kettering Cancer Center in NYC. He went through multiple surgeries, blood transfusions too many to count, 15 rounds of chemo, radiation and almost died, twice. He went through numerous clinical trials including MIBG therapy at Children's Hospital in Philadelphia. His disease load was shrinking but never fully went away. His doctors felt like he was on his way to NED, we were excited for his next scans, expecting it would clear him as the first MIBG treatment had a positive impact. It was not to be. His disease was exploding. Tumor on his knee and back began to cause him significant pain. We brought him to Children's in Minneapolis for his radiation treatment on Friday, April 29th. It was that day that Dr Richards told us our only baby was "actively dying". We were stunned. We were planning on giving him the "kitchen sink" chemo regimen that Sloan recommends, we never got that far. Kyle never came home; he took his last breath at 11:53pm on Tuesday, May 3rd, 2011. We miss him more than words can say, he was our life, our baby and now he's gone. Our family of three is no more……
Kyle was an astonishing boy, an angel on earth. After he passed his doctors and nurses shared how he would help newly diagnosed children through their first steps in fighting cancer. He would comfort them; explaining how their central lines and ports would work, that the medicine wasn't that bad and that they would be OK.
We now pledge to help other families fight cancer in Kyle's honor. Through Cookies you can make a difference as this disease not only ravages children but their entire families. Hold a bake sale, make a difference, be a Good Cookie……
One morning (November 21, 2008 to be exact) while Daddy was getting Dorothy ready for daycare, he was tickling her and they were both laughing joyfully. As he was tickling her belly he felt a lump on her right side and immediately became concerned. In fact he became light-headed because "cancer" popped into his head. However, he dismissed the idea because "our little 17-month old couldn't get cancer."
That was Friday morning. I (mommy) was already on my way to work and when I picked Dorothy up from her daycare, I learned of the concern. Apparently, my husband had asked the ladies their opinion earlier that morning. Well, as the weekend progressed we sprawled, stretched and maneuvered Dorothy in all directions in order to see this protrusion on her side. Monday we took her to our pediatrician. She was asymptomatic and perfectly healthy but something was not right. Our pediatrician took one look and ordered us to have CT scans done immediately. Dorothy had already eaten and she could not be sedated, so we went home and returned the next day. That day was the beginning of our journey.
After her scans, we needed to go to the grocery store. I will never forget standing in the front waiting for my husband and my phone rang. Dorothy's pediatrician simply asked, "Where would you like to go, Houston or Austin?" Many tears were shed at that moment. The next day we were at Texas Children's speaking to an oncologist and a pediatric surgeon.
Dorothy was diagnosed with a stage II Wilms' tumor of favorable condition and immediately had surgery to remove her right kidney. We were told that she would need to have 6 months of chemo just to kill any little cell that may have escaped and there was an 85% chance that she would be cancer free for the rest of life. We thought, "6 months? It will be tough but we can handle it." So after 6 months of outpatient chemo once a week, we were thrilled for the 3 week post-chemo scan. We looked forward to her corn silk hair growing back and just a week without going to the hospital. Unfortunately, that day is another day I will never forget. Not only had Dorothy's cancer returned but it had metastasized to her lungs. Not in one lung, but both and not just in a spot or two, but "too many tumors to count." Now another voyage began. Dorothy underwent radiation, inpatient chemo, outpatient chemo, blood transfusions and many other tests to make sure her heart, kidney and liver were functioning properly.
Just recently, December 30th, 2009 scans still show numerous spots showing up in Dorothy's lungs. But the good news is these spots are exactly the same as the spots showing up in her November scans. She has been off chemo since late November of 09, and we are certain these "spots" are just dead tumor and scar tissue. Our 2 year old June bug now has white fuzz all over her head is full of spirit.
The past 14 months of our lives has enlightened us to so much it is hard to put into words. The families you meet, the children you meet fighting for their lives, the joys and the sadness. You question everything and just pray for life.
Cookies for Kids' Cancer is a wonderful way to help improve the chances of our cancer warriors and we encourage you to help!
This is Andrew. He is four years old, and preparing to graduate from preschool. He has a mom and dad, two sisters, grandparents, aunts, uncles, cousins, and friends - all whom love him dearly. He enjoys swimming, camping, and going to the beach. He has an infectious laugh and a smile that can light up a room. Yet behind that smile, Andrew harbors an awful secret. He has one of the deadliest forms of pediatric cancer - neuroblastoma.
But Andrew didn't always have cancer. For the first two years and seventeen days of his life, not only was he healthy, but he seemed bigger, stronger, and tougher than most little boys his age. In those days, Andrew's dad often referred to his little guy as a "future linebacker". Outwardly, Andrew was the picture of health, but on the inside, a storm was brewing. Quietly and insidiously, a malignant tumor was developing inside his body. It grew so large that it split his left kidney in two, and consequently caused blood to mix with his urine. Hence, the storm hit. The day after returning home from a family vacation at the beach, Andrew's mom discovered blood in his diaper. What could this mean? A bladder infection, UTI, or kidney stone? She didn't know, but as she drove to the pediatrician's office that morning, worried and anxious, she was soon to find out that sometimes, your very worst nightmares do come true. Within a few hours, Andrew's parents would learn that their two-year-old son had cancer. Cancer? How could this be? When the radiologist came to deliver the news, Andrew and his mom watched from the playroom as the diagnosis brought Andrew's dad to his knees. And then, at that very moment, Andrew's mom remembers a feeling of numbness flooding her body, as she braced herself for what was to come. The rest of that day was a whirlwind of raw, gut-wrenching emotion, while Andrew's parents were inundated with information, statistics, and survival rates. Andrew's mom doesn't recall many of the specifics of that horrible afternoon, but looking back now, it wouldn't have mattered what was said, nothing could have prepared her for the pain and suffering she was about to witness. She was now an unwilling member of a depressingly dark, horrific society...the world of pediatric cancer.
Sometimes, Andrew's mom allows her mind to wander back to that day at the beach, when her son was still "healthy", her family was happy, and she'd never even heard of this wicked disease called neuroblastoma. But most of the time, she tries to focus on the present. Today, Andrew is defying the odds, and once again, looks bigger, stronger, and tougher than most little boys his age. After five rounds of chemotherapy, two major surgeries, fourteen doses of radiation, and eight rounds of extremely painful monoclonal antibodies, Andrew is considered NED (no evidence of disease) and living the life of a rambunctious four-year-old little boy. But since neuroblastoma is known for being an extremely aggressive cancer with a high incidence of relapse, he will undergo scans every three months in an attempt to make sure the beast stays at bay. Andrew will never truly be free of this disease, but his mom has decided that if your very worst nightmares can come true, then so can your sweetest of dreams. And therefore, he will be a survivor.
Cookies for Kids' Cancer, a foundation inspired by the love between a mother and her son, offers a sweet and simple way for the entire community to participate in the fight against pediatric cancer. By hosting a bake sale, people of all ages can raise money desperately needed to fund new, less toxic therapies for Andrew, and kids just like him, in the hopes of finding a cure. So, please, be a good cookie, and get involved! Join us...and imagine a world without cancer.
"Ylaria" translates to "Hillary" which means "cheerful." There isn't a more perfect word to describe our beautiful princess during her short five years of life. She had no noticeable symptoms, but in less than a few hours, we were told she had a grapefruit sized mass in her abdomen just three days after her second birthday.
She battled as hard as any child with cancer does – they are amazing examples to all of us, aren't they? The torture and pain she went through with thousands of treatments and procedures over the course of four years are too much to write about here. She also flew from California to New York and back over eighty times in her lifetime for these treatments!
One thing is certain – she remained cheerful. How? How is that possible? Because of many reasons: She KNEW she was loved more than life itself. She managed to create fun out of every hospital visit. She had three sisters who doted upon her adoringly. She was able to fulfill all of her wishes and dreams. The only thing she wanted more than anything else in the world was to be able to walk again and to go home and enjoy her friends and family. She enjoyed us as best she could to her dying day. But she never walked again and for that, we HATE neuroblastoma!
We miss Ylaria with every fiber of our being. She should be here with us. She should be doing things that little five year olds do. She should be celebrating holidays and birthdays with us. Please, help save the lives of children by supporting Cookies for Kids' Cancer. One more life lost is too many!
Who would ever dream that a persistent fever would lead to a diagnosis of High Risk, Stage 3 Neuroblastoma, resulting in 5 cycles of high dose chemotherapy, 4 surgeries, 14 rounds of radiation, 5 cycles of immunotherapy with high doses of Accutane (yes, that Accutane), and ultimately the loss of our son's life? This is the nightmare that started for our family on August 26, 2008. Our son, Pierce Phillips was born July 30, 2007. Pierce was an easy-going child and people often referred to Pierce, as an "old soul" because of his demeanor and captivating eyes that seemed to be full of wisdom. Pierce enjoyed riding his fire truck, watching Shrek, and hanging out with his mommy and daddy.
Pierce received treatment at Memorial Sloan-Kettering Cancer Center in New York. After these aggressive treatments, Pierce achieved NED status – no evidence of cancer was detected. We spent the next few months at our home in Oklahoma with our healthy son and enjoyed the simple everyday events as every parent should be able to with their child. Unfortunately, Pierce's disease was lurking undetected and returned, which was found during an emergency bowel resection surgery, only a few months after finishing high dose chemotherapy and radiation. We returned to New York once again to stop this beast of a disease. The salvage chemotherapy offered had no effect on his disease it progressed, and he developed another bowel obstruction within weeks of having bowel resection surgery. At this point, the Neuroblastoma had affected Pierce's vital organs and we were forced to make a decision that no parent should ever have to make. With no options left for Pierce, we decided to stop treatment, which was advised by the top doctors in this field, and took him home to enjoy every minute we could loving Pierce in his final days. In the arms of his mommy and surrounded by family, Pierce earned his angel wings on October 9, 2009.
Pierce was truly a one-of-a-kind child and in a short time touched many lives. Pierce taught us the true meaning of courage and strength. Pierce took on life with a smile and even in the toughest of battles he gracefully handled each journey.
This disease can't be won by a few, it will take all of us pulling together for these children. The drug companies are not developing medication specifically for our children, so it is up to us. We have to be the voice for the most innocent of victims to cancer. Please host a bake sale in your town, at your church, shopping mall, or anywhere you can think that will draw attention to such a great cause, KIDS just wanting a chance to have a great life.
With beautiful, thick, naturally curly hair down to her waist, my daughter Adina cut 10 inches off in the spring of 2006 to donate to Locks of Love. Little did she know, just a few short months later, on July 19th, she would be diagnosed with Leukemia and would face losing her own locks. My gorgeous, healthy, intelligent 13 year old daughter was blindsided with a ruthless disease that would take so much from her but not her spirit. After graduating 8th grade, her hopes of a great summer of being a camper in day camp and beginning high school turned into a nightmare that had her in the hospital for 3-weeks, relying on almost 100% oxygen with tubes draining fluid from her heart sac and lung. As a mother, it was a numbing, unnatural experience.
Adina embarked on a rigorous 2-year protocol, with the dream of going back to her normal teenage life and joining her classmates at school instead of being home tutored as her motivation. And then on April 29, 2008, just when she had almost completed her protocol, we found out that Adina relapsed and needed a stem cell transplant in order to survive. With about 3 months left to the school year and not being able to complete yet another year of high school, Adina managed to finish up the year with home tutoring and take 3/4 regents exams in the hospital while receiving chemo. After spending our summer being isolated in a hospital room for 25 days, Adina received her transplant and is now following the rest of the steps to her cure.
As a mom now beginning another year of being inpatient/outpatient with my daughter, I've become used to seeing children of all ages valiantly battling cancer. It has made me realize how great it is to be a helping hand and support programs like Cookies for Kids Cancer to help find cures for our children.
Thank you for your support.
Paula (Adina's mother)
Diagnosed September 2006 - Stage IV Neuroblastoma at the age 3. Approximately 325 children a year in the U.S. receive this devastating diagnosis...about 25% survive.
Evan has a particularly insidious form of the disease due to the presence of an aggressive cancer gene that further diminishes his chances. We had never heard of Neuroblastoma prior to Evan's diagnosis. It is a completely life changing event. We hope and pray every day for a cure that does not yet exist. When friends offer help and ask what we need, we simply want to say, "A Cure". The best way to help Evan and kids like him is to support research on this rare and often ignored pediatric cancer. Evan is our only child. We need your help today!
Deep down, I understand why God wanted Ali back. I know that I want her back every single day, because the world is a lot less bright without her. Ali was infectious, not in a loud, raucous way—but in a kind, funny, happy-go-lucky, quirky way. You just wanted to be around her.
We were living in a happy bubble, when our world came crashing down. Ali had just turned 15, and a lump on her arm, previously thought by everyone including our doctor to be nothing, had grown quite large. Even after the MRI, we were sure it was nothing… but when they mentioned biopsy, my heart began to sink.
Our worst fears were confirmed six days before Christmas 2002. Cancer. Alveolar Rhabdomyosarcoma to be exact.
Two days later, we were on a plane to Mayo Clinic, where there were bone scans, MRIs, CT scans, PET scans, blood work…and on and on. Then the meeting with the doctors where we learned that her hair would fall out, she probably would never have children and oh yes, there was one girl who made it all the way through college… one girl. That is how she phrased it and Ali and I just looked at one another and didn't say anything.
The next two years were filled with highs and lows; optimism and utter devastation. It's hard to understand unless you've been through it, but they were also filled with inexplicable joy, spontaneity and an acute understanding of the meaning of life.
Two years later, almost to the day, of when our journey first began, Ali started to develop numbness in her jaw and her bones were very achy. For the first time, she cried from the pain, and I knew she must be really hurting. We returned to Chicago for the last round of tests before a stem cell transplant, but the news was not good. The cancer had spread through her bone marrow and this time, we truly had no hope for a cure.
Two months later, her brave battle ended and my biggest battle—living without her, began. I could have written a book on her attributes, but on her headstone, I chose these four words: beauty, strength, humor, grace. That was and will always be, our precious Ali.
Thirteen thousand children will be diagnosed with cancer this year. Thirteen thousand new families will have their lives turned upside down and their greatest fears realized. I don't want people to feel guilty-- I want them to feel grateful. Grateful, aware and generous, so that we can stop this thing.
Diagnosed April 17th 2007, at the age of 3.5, with NB stage 4.
In the course of two hours we went from having a perfectly healthy, sweet-as-pie, joyous toddler to hearing that he had an aggressive form of cancer and might die. Cancer robbed our child of his softness, his innocence, his curls, and his endurance. It has also revealed some remarkable things. We have a little boy who says "please" and "thank you" as poisons drip into his bloodstream. A little boy who makes the hospital clowns howl with laughter.
And a little boy who learned to read a full 2 years ahead of his peers, by deciphering hospital signs for "operating room," "radiation," and "infusion complete." Throughout 18 months of non-stop treatment, while undergoing pain that neither of his parents would be able to endure, Toby has taught us what it means to live with hope.
To those who want to help:
Before Toby was diagnosed I never gave a thought to children with cancer. My only frame of reference was the strangely bald kids who sometimes appeared in hospital advertising and I always turned my eyes away... it was too painful to think of children suffering. Your willingness to look at our children is the greatest gift I can imagine. Your support and your love give Toby a chance at life. Thank you.
Diagnosed August 28, 2009, at the age of 5, with Stage IV Wilms Tumor.
Marnie started Kindergarten on Tuesday, August 25, 2009. She rode the school bus home on the second and third day. Marnie thought it was the second most exciting thing ever - the most exciting event being the Coldplay concert she attended earlier that month.
We took Marnie to the Emergency Room at 9:30 pm on Thursday night with stomach pains. We were expecting to hear she had appendicitis. An X-ray, Ultrasound, CT scan and 5 1/2 hours later, we heard the words that shattered our world. Our precious, perfectly healthy daughter had a Wilms Tumor in her right kidney and the cancer had metastasized into her lungs. The largest spot in Marnie's right lung was the size of a golf ball. Marnie's treatment protocol involves 2 rounds of chemotherapy to shrink the tumor, surgery to remove her right kidney, 8 days of radiation and 9 additional rounds of chemotherapy. Marnie's last scheduled chemotherapy round was April 26, 2009.
We have watched Marnie become a strong, brave, determined little girl. This has changed our lives forever. We are better people because of Marnie. We are determined to fight for Marnie. We are determined to fight for all present and future childhood cancer patients. These children need our love and financial support for a cure. The children do not need your pity. Talk to the next cancer kid you see instead of staring or looking away quickly. They will touch your heart and you will never be the same. Please join the fight to find a cure.
Elexis was the classic "life of the party" type of little girl. She loved to dance and sing. From her television set, to her bed spread, to her fingernails, it was simple to see that pink was her favorite color. Her smile was infectious and left a lasting impression on anyone who came in contact with her.
In May of 2008, Elexis' Kindergarten teacher noticed that when asked to stand for any activity Elexis would sit after five minutes while complaining that her leg was hurting, she also noticed that at lunch Elexis was not eating like she used to. Ms. Audrey was very concerned as Elexis was one of her star students and it was just not like her, so she called us in to find out what was causing these changes. We had already noticed that Elexis' appetite has changed drastically and she was losing weight very quickly and had already taken Elexis to her pediatrician who prescribed an appetite enhancer she was currently on.
In June 2008, before the appointment with the gastroenterologist Elexis was at dance rehearsal for the biggest show of the year. She was starting to feel sick and we all thought she was just getting nervous since this was supposed to be her first big show. Her instructor sat her out and gave her something ice cold to drink. She sat out the rest of the rehearsal saying she didn't feel well. By the end of that day Elexis had a fever and was throwing up everything she ate or drank.
After trips to the pediatrician, bloodwork and receiving a ct scan, our world fell apart when Elexis was "loosely" diagnosed with a rare type of cancer, called Neuroblastoma. Her mom was instructed to have a biopsy done to be sure. Elexis was transferred to Memorial Sloan-Kettering Cancer Center per mom's request and after a biopsy, it was confirmed that Elexis had stage IV neuroblastoma, just two days before her 6th birthday. She spent her 6th birthday in the hospital getting her first round of chemotherapy.
Elexis went through 15 more rounds of chemotherapy (high and low doses - a total of 16 rounds), 1 round of hot antibodies (3F8 and radioactive iodine), mibg therapy, 6 surgeries, radiation (twice a day for 10 days) 3 stem cell rescues and was still fighting until the day she left us at 12:01am on July 15, 2010, less than a week after her 8th birthday.
Elexis fought for two years with a smile on her face, she laughed, she played and she kept a positive attitude. She was full of life and didn't let being hooked up to an iv pole, being bald, not being able to live a normal life stop her from living. She lived, laughed and loved despite of her circumstances. Elexis loved school and while at the hospital even while receiving chemotherapy her nurses knew Elexis would not be in her room but knew where to find her, at the table with Ms. Ann-Marie her teacher learning. Elexis was known as "Warrior Princess Elexis" to her family and friends as she fought like a warrior but remained a princess with fashion and attitude.
Elexis' life was cut short and her dream of becoming a nurse died with her simply because she exhausted all the available treatments. Our kids are our future but how much are they worth? Should a lack of funding be the reason for our children's death? Our kids are priceless and funding should not be the reason for their lives to be cut short. If we work together we can make a difference in a child's life. I believe there is a cure out there and the only thing between that cure and children like Elexis is funding. You can make a difference by hosting a bake sale or making a donation. We are all in this together so be a Good Cookie by giving another family hope.
Diagnosed on December 18, 2007 at 6 months old with high risk multifocal Langerhan's Cell Histiocytosis (LCH) with skin, bone, bone marrow, spleen, and liver involvement.
That was the day we were told he had a 50% chance to survive another 3-6 months. I will never forget that date. Another date that I will never forget is May 12th. That was the day it was determined that Golden's initial chemotherapy treatment had failed, the LCH was growing again and he would need high-dose chemotherapy to have a chance to survive. Golden now has high-risk, refractory multifocal LCH.
His diagnosis means so many different things to us. Basically, that nothing is what we thought it is or was. That your worst nightmares do, in fact, sometimes come true. That there is a significant chance that things could go unfavorably wrong. It also means that we are among the luckiest parents in the world. To know someone so small yet so strong and to truly cherish all the little things and fleeting moments.
To people who want to help I would say please do! LCH is considered an orphan disease because it is so rare and there is no government funding for research. To people who want to get involved I would say listen, learn, and understand. Also, in a larger sense, to think outside of yourselves and your day-to-day trivial problems and see that you have a good life that mostly only has problems and situations that you can choose to improve.
On May 12th, 2006, we learned that Nick, then 8, had Neuroblastoma. His symptoms were a low grade fever and a tummy ache. Several doctors misdiagnosed his illness and one told his mother she was over reacting when she pressed for more tests.
Fortunately, Nick is currently beating this beast thanks to cutting edge treatments at Memorial Sloan Kettering in New York City. He turned 13 in January of 2010, which is amazing since we were told that most likely he would not see his 9th birthday. Nick was able to tolerate a mouse version of an antibody invented at MSKCC which saved his life to this point.
Unfortunately, not all children are able to accept the treatment that saved Nick so we are aggressively trying to raise funds in an effort to create alternative treatments that can save more children. We also live in fear of a relapse and want to find a cure to this nasty disease.
Please help us in this fight!
Brent Nason was a very active 8 year old when a complaint of back pain first hinted that something was amiss. Just days before his 9th birthday, Brent was diagnosed with Neuroblastoma. Baptized on Easter Sunday when he was 8 years old, Brent was a child of God who loved his family and enjoyed roughhousing with his brothers, riding 4 wheelers
and go carts with them, going to church, participating in mission trips, playing football and games on his PS2, hunting, fishing, and sharing hugs with all of his family.
Brent went HOME to be with his JESUS on January 2, 2007. Though he is greatly missed by his family, they are at peace knowing they will see him again one day.
My daughter Paris was diagnosed with Neuroblsatoma at only 9 days old on November 29, 2007. Can you imagine having a baby and then rushing her to the hospital only 9 days later with a life threatening illness?
I was devastated when they told me that she had cancer and that her chances of survival were not high. Paris' 7 cm tumor presented in the thoracic area, compressing her spinal cord. She began Chemotherapy on December 2, 2007. The tumor responded to the Chemotherapy, allowing surgeons to remove what was left of the visible tumor. In September of 2008 Paris relapsed in the cerebellum. She underwent surgery and then we sought out a second opinion through Memorial Sloan Kettering in New York. There they noticed that there was uptake in her disease, and they performed her third major surgery to remove the remaining tumor from around her aorta. She received focal radiation to the areas where disease presented in combination with chemotherapy, antibody 8H9 treatment, and IV3F8. She developed a heart condition which has forced us to stop the antibody treatment. She is now on Temodar and oral chemotherapy, daily every 42 days for a total of 5 cycles which constitutes 10 months. Upon diagnosis we were fighting to keep her alive to reach her 2nd birthday.
Please get involved! Cookies for Kids' Cancer is a great organization dedicated to helping children with cancer. Paris is an innocent child, like so many others that has been dealt a horrible hand at such an early point of their lives. Together we can make a change. It is the power of the message that creates change. Please listen and open your hearts.