Cure Childhood Cancer

CURE Blog


September 15th, 2014

CURE Childhood Cancer Honors Nicolas Duncan

September is National Childhood Cancer Awareness Month. Join us today, September 15, 2014 as CURE Childhood Cancer honors Nicolas Duncan. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Nicolas’ fundraising page.

Nicholas Duncan Photo

In June 2011, while being treated for lymphadenitis, during the second surgery, the pathology report indicated the presence of cancer cells in the infected lymph node in the neck of my ten-year-old son. By the time he completed the PET scan, he was diagnosed with stage 4, “B-Cell Precursor, Lymphoblastic Lymphoma.” He has been on Acute Lymphoblastic Leukemia (ALL) treatment since then which is scheduled to be in place until October 2014. He has been through 137 rounds of chemotherapy, 31 procedures under anesthesia, 27 chemo injections via spinal tap, 35 breathing treatments, and a total of 51 days in the hospitals, along with hundreds of oral chemo medicines.

We celebrated his 14th birthday in July and we will have a bigger celebration in October 2014, as he reaches the finish line. Throughout his journey, he has participated in many fundraising events such as singing, running, play performances and piano recitals. In June 2012 he was featured in a CNN interview. In May of 2014, he performed his original song on stage at the “Shaky Knees Festival” in Atlanta with the legendary Tommy Stinson.

As part of acute lymphoblastic leukemia regimen, many kids have to be on a long-term high dosage of steroid, which in our case had led Nicholas to a bone condition called “Osteonecrosis.” Many of patients over age of ten will have to follow adult treatment regimen and according to our oncology team, it is very common for this age group (especially male patients) to have joint replacements during or shortly after their end of treatment. This is all another reason that research and finding a cure for pediatric cancer is so important.

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CURE Childhood Cancer has been a great channel for kids and parents that are unfortunate to face this evil by themselves. During our hospital stays and clinic visits, we have witnessed all the fun events as well as generous donations that were sponsored by CURE. My family we thank CURE for their support and presence through the darkest era of our life.


September 15th, 2014

CURE Childhood Cancer Honors Creed Campbell

September is National Childhood Cancer Awareness Month. Join us today, September 15, 2014 as CURE Childhood Cancer honors CURE Kid Creed Campbell. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Creed’s fundraising page. 

Creed entered this world 11 weeks earlier than expected. Weighing only two pounds, he had a lot of catching up to do. He arrived home after 91 days in the NICU only to return back to the hospital for another extensive stay.

This seemed to be the beginning of what his life would be like. For the next five years it was just that – in and out of the hospital. Never knowing what the root of the problem was. Always treating the symptoms, but never being able to figure out really what was going on.

In January of 2010 we found out that Creed had a blood disorder called Myelodyplasia / Monosomy 7. The only treatment for this was a bone marrow or stem cell transplant. In August of 2010, Creed underwent intensive chemotherapy and total body irradiation in preparation for the transplant. The next seven months were spent at Egleston Children’s Hospital.

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He was completely cured from the disease after the transplant, but did encounter many issues that were again unexplainable. These issues eventually caused him to earn his wings at age seven on April 15, 2012. Creed never let this life get him down and was a fighter until the very end.


September 14th, 2014

CURE Childhood Cancer Honors Liam Howell

September is National Childhood Cancer Awareness Month. Join us today, September 14, 2014 as CURE Childhood Cancer honors Liam Howell. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Liam’s fundraising page. 

Liam Howell PhotoMy name is Liam, and on August 1, 2007 I was born with a rare pediatric cancer called congenital fibrosarcoma. At two-days old, I had major surgery to remove the tumor that was 10 centimeters in diameter protruding off my back. When my surgeon went in, he found part of my tumor had rooted in my abdominal wall. Mommy and Daddy had learned that the tumor had grown through the gaps of my ribs and into my lung cavity while I was forming in Mommy’s womb. Fortunately, it didn’t metastasize. I began chemotherapy at two-and-a-half weeks old. After two rounds of chemo, my tumor began shrinking out of my lung cavity and thinning through my ribs. I continued chemo and tolerated it well considering what it does to the body. There were challenges, but my doctors remained positive. I would beat my cancer.

At three-months old, I developed a rare side effect of chemo called VOD (veno occlusive disease)—it affects the function of the liver. My liver recovered faster than the doctors expected, and it is completely healthy now. At nine-months old, I finished my ninth round of chemo. I had a biopsy to check for any remaining cancer tissue, and the results showed the tumor tissue was gone!! What remained was normal and showed zero similarities to my original tumor. My oncologist, who I love dearly and still enjoy visiting, decided it would be wise to do two more rounds of chemo to kill any microscopic cells left. In April 2008, I had my last push of chemo and in May 2008, I was officially in remission! Over the next two years, I was checked frequently through CAT scans and MRIs, but now, I am so happy to announce that as of July 20, 2012, I am officially a cancer SURVIVOR!! I no longer need any scans and will be entering a survivorship program at Children’s Healthcare of Atlanta.

My journey with cancer has completely shifted. My possibility of scoliosis was high because my spine had to form around the tumor, but treating cancer was most important. At two-years old, scoliosis became real. I was diagnosed with a severe 70 degree curve in my spine. If uncorrected, my left lung wouldn’t develop to adult capacity. In January 2009, a VEPTR growing rod was placed in my back. For the first time, cancer took a back seat, and that is wonderful news to any cancer patient! Three days after the VEPTR surgery, I was running around like normal! Cancer never stopped me from being a high-energy little boy who soaks up every ounce of life, and neither did this!

For six months I wore a back brace, but Mommy and Daddy convinced me it was my “Iron Man” gear. In July 2010, I had my first of several VEPTR lengthening—I did great with that surgery, and my spine is down to a 45-degree curve! Since then, I have grown into a tall, active, handsome little man who loves school, legos, superheroes, and spending time with my family watching the Cosby Show. I grew so tall that this past May, I had to have the entire VEPTR system replaced. It was a very hard surgery for me because it involved moving both muscle and bone. I was super brave but recovery was long and painful. I am good to go now, and I even told Mommy I am grateful for the VEPTR rod because it helps me not tilt and be active like normal boys and girls.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503One of my favorite things in life is being a big brother to my sister, Abbi. She drives me crazy sometimes, but she is my best friend. We do everything together; we love to have campouts in my room, dance parties to Rio 2 sound track, and I even let her play with my legos… sometimes. I am in second grade and have learned to speak Spanish. My school is an immersion school, and I love learning in other languages. My favorite sport to play is baseball, but I watch every sport ESPN has to offer! I am a solid Braves and UGA fan. You won’t convince me to love any other teams. My parents remain strong, and my family feels blessed to have the doctors and support we have had over the past seven years, and CURE has played a major role in that!!


September 14th, 2014

CURE Childhood Cancer Honors Jacob Zamuel

September is National Childhood Cancer Awareness Month. Join us today, September 14, 2014 as CURE Childhood Cancer honors CURE Kid Jacob Zamuel. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Jacob’s fundraising page. 

Jacob Zamuel PhotoWe knew Jacob was special when he was born three weeks early, in July 2012. But at that time we didn’t know he was a superhero.

At only six-weeks of age, Jacob had surgery to remove blockage in his stomach so he would be able to digest food properly. The procedure worked, but Jacob continued to have issues with his stomach. After several visits to our pediatrician, we finally asked for an X-ray of his abdomen. Following additional scans, it was determined that Jacob had a large mass of blood taking up 60 percent of his abdomen and pushing on his vital organs. He was admitted to the hospital immediately and we spent the next 10 days in Pediatric ICU while Jacob received his second surgery to remove the large mass.

Afterwards, the surgeon informed us that they also removed his adrenal gland and lymph node after finding a tumor at the bottom of the mass. The next few days were a blur; especially when we found out our five-month-old baby boy had cancer and was diagnosed with high-risk neuroblastoma. Following surgery, Jacob was considered NED (no evidence of disease). Because of his age and the fact that he no longer had the disease in his body, we decided to go off therapy and monitor for the disease with monthly ultrasounds. We only made it about two months before being admitted back into the hospital. On March 16, 2013, Jacob started chemotherapy treatment for a tumor that was wrapped around his kidney and an additional disease behind his eye. Jacob handled it all like a true superhero.

For the next year or so, we spent many days and nights in the hospital, sometimes sick, sometimes just waiting for his blood counts to rise. We also frequented the ER with fevers, which in turn put us back in the hospital. But, through all of it, Jacob continued to be a strong and happy kid even though he spent the majority of his first year of his life sitting in a crib in a hospital. He always bounced back and couldn’t wait to go home to see his big sister and his dog.

As of August 2013, following induction therapy, Jacob was NED again. The tumor wrapped around his kidney and the disease behind his eye was completely gone. It was a miracle and we were thrilled. Jacob proved once again that he really was a superhero. Jacob finished treatment on July 25, 2014, one day before his 2nd birthday. He continues to remain cancer free.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503It’s hard to recall all the time and things we went through during his treatment. We know that he spent his first birthday sick in the hospital. And, we know that he received more surgeries in his first year of life than most people have in a lifetime. And our hope is that Jacob will NEVER remember any of it. Through it all, Jacob always came out of it stronger and happier. He is a true superhero.


September 14th, 2014

CURE Childhood Cancer Honors Will Wagner

September is National Childhood Cancer Awareness Month. Join us today, September 14, 2014 as CURE Childhood Cancer honors CURE Kid Will Wagner. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Will’s fundraising page. 

Screen Shot 2014-08-08 at 1.00.52 PMOn Saturday December 8, 2012, Will took the court for his first basketball game of the year. He played the majority of the game and, as always, had a blast doing it! “For the love of the game” defines Will!! His sister danced in the Statham Christmas parade later that afternoon and then that evening we took the “Christmas Card” picture that we would be sending out in a few short days… a normal busy Saturday as the holidays closed in. What was about to happen over the course of the next few days changed our lives.

Sunday December 9th. Will woke up with a headache and complaining of not “seeing” right. He took some Tylenol and seemed to feel fine. His headache came and went over the next two days. It never seemed that bad, something was just off. Wednesday evening (12-12-12) we took him to his pediatrician; his eyes were not functioning the way they should. The words “something is not right,” were said. Thank God for Dr. Aldridge, she caught a problem!!! After a cat scan at Athens Regional Medical, a “mass” was found. We had no idea what it was. She sent Will to Children’s Healthcare of Atlanta Scottish Rite in the middle of the night. By 9:00 am the morning of 12-13-12, he was in surgery to relieve pressure in his brain from a massive non-germinomatous germ cell tumor (NGGCT).  We took him to the doctor the night of December 12th, 2012 thinking he had a migraine…. yes a migraine. Little did we know what he had been going through. He never once complained.

He started Chemo the day after Christmas!! Over the course of the next eight months, Will had: six rounds of Chemo (24 days), 40 plus days in the hospital, countless fevers, pneumonia, allergic reactions, hair loss, weight loss, several MRI’s and lumbar punctures, 30 days of radiation, countless vomiting, blood clots, shots, a pharmacy at home, pokes, prods, missed school, missed friends, missed his brother and sister, good times and bad times.

Will is still not in school but hoping to return later this fall. Through everything, not once has he ever complained or asked why. He simply just asked what he needed to do to make it go away. Chemo took the tumor from the size of golf ball down to the size of a pinky nail. The prayer is that radiation killed the rest of it off. He is a very special young man whose destiny is written with greatness.

This is truly a journey. In journeys you meet people and they help to shape who you become and who you hope to be. We have met and leaned on so many great selfless people along this path. Scottish Rite Aflac Wing and Aflac Clinic have truly become an extension of our family. Thank you all!!

Will has been the strong one. Whenever we as parents have wanted to “lose it,” he has kept it together, which made us keep it together. All he wants to do now is help kids who are struggling, even though he still has his own struggles.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Update: From September of 2013 until June of 2014, Will has been stable. He has had 3 MRI/LPs. No sign of Cancer!!!! He is cancer free at this point and is adjusting to getting life back to normal, with limitations. He is not allowed to play any sports that require a helmet, hard for a boy that loves football. So he stays busy helping his younger brother Zac on his Skills!! His next scan is September 2014.

God Bless You All!!!

Wagners


September 13th, 2014

CURE Childhood Cancer Honors Robbie Moore

September is National Childhood Cancer Awareness Month. Join us today, September 13, 2014 as CURE Childhood Cancer honors CURE Kid Robbie Moore. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Robbie’s fundraising page.

Robbie Moore Photo“Your child has cancer.” Four words that parents never want to hear. The four words that will impact your life and the life of those around you forever. And yet, those four words, as much as you hate them, would not be the worst you would ever hear. Imagine the heartache of hearing your child sobbing and repeating, “I don’t want to die.” When you are in complete shock, how do you comfort them? What do you say? What do you do?

Our son, Robert “Robbie” Moore, was diagnosed with a tumor in the brain stem at age 15. He was experiencing some symptoms that I was downplaying as a virus, vertigo or the need for eye glasses. After all, he was a child that was rarely, if ever, sick. The only visits we ever had to the doctor were for swimmers ear. In the hot Georgia summers, he loved to play in the pool with his brother and cousins. You always knew he was having a grand time because you could hear his laughter a block away.

Robbie was a sweet loving child who took great interest in racing go karts. Six months before his diagnosis, he had managed to save enough money to purchase his first kart and every spare minute of his time was spent working on his new hobby. We had never seen him have such a passion about anything. And we had never seen anyone have such heartbreak and disappointment at the fact that his passion would end before it ever got started.

Treatment options are not very effective for Glioblastoma Multiforme. Robbie had a grade four astrocytoma that was located in the pontine area of his brain. This is a place that is so sensitive that biopsies were rarely performed and removal was impossible. Our neurosurgeon was confident that he could biopsy the tumor and send a sample off to pathology so we could know exactly what we were dealing with and the best possible treatment option.

Little did we know, successful treatment options were very few and our hopes would be in a clinical trial. One of the hardest decisions to make is one where no matter what you choose, the odds are still stacked against you. And then you realize, a lot of information that was available to help you make your decision was based on adult trials.

After Robbie had his biopsy, his life changed completely. He went from attending school with his friends, to having teachers come to our home when he was not feeling well enough to complete his school work. He went from being able to walk, run and race to using a walker and then a wheelchair. He had lost his independence and ability to live the lifestyle that healthy teenagers should live.

His days were spent at home with family and many friends visiting him. The clinical trial was not successful and shortly after he was withdrawn, he began to experience paralysis on the right side of his body. By his 16th birthday, he was unable to walk. Yet, his spirits were still high and he never complained or gave up the fight.

Several different chemotherapy drugs were used to try to control the beast that was robbing our precious child of his livelihood and his life. With every new drug that was tried, we had high hopes of this being the MIRACLE drug that would cure our son. After all, he still had so much living left to do.

The drugs were often hard on his body and caused swelling, weight gain, skin breakdown, nausea, hair loss and rashes. There were many trips to the doctor and several to the hospital for overnight stays for rehydration. There were additional treatments for blood clots and home visits for physical therapy.

Two days before Thanksgiving, we got the results from an MRI that showed the chemo was no longer effective, the tumor had grown and there were no more options available to him. “We’re sorry, there is nothing more we can offer.” That ranks right up there with, “Your child has cancer.” And causes as much heartache as when your child sobs, “I don’t want to die.”

Robbie, our precious teenage son, a handsome young man with brown hair, beautiful hazel eyes and a heart of gold touched the lives of many, young and old. He was a son, brother, grandson, nephew, cousin, uncle and friend who brought joy to others. He fought a courageous battle with a beast that medicine couldn’t cure. We cried, we laughed, we prayed, we talked… and yet all of that time we spent together was never enough. Never enough for those of us who loved him dearly and would give anything to have just one more day with him.

After a 13 month battle, Robbie crossed the finish line taking the checkered flag as he raced his way into heaven. He will live forever in our hearts.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503While on this journey, we have met or read of many other children battling cancer. It is our wish that one day, no other parent who has a child with cancer would ever have to hear the words, “We’re sorry, this is nothing more we can offer.” We are happy to be teamed up with CURE to raise funds to find a cure for childhood cancer.


September 13th, 2014

CURE Childhood Cancer Honors Sean Dever

September is National Childhood Cancer Awareness Month. Join us today, September 13, 2014 as CURE Childhood Cancer honors Sean Dever. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Sean’s fundraising page. 

Sean Dever PhotoThis past year has been filled with long-awaited milestones. Sean spent his senior year of high school doing what most seniors do: having fun, attending homecoming and prom, making college decisions, and enjoying his many “lasts” at Blessed Trinity. As his parents, and because he is our youngest, we too went through the many “lasts” with him.

I placed the word last in quotes to give context – but it is really not how we cancer parents see these events. When your child has been diagnosed with childhood cancer, your perspective changes and you see these milestones through a different lens.

Sean’s senior year was indeed a blessing and a testament to those who have tirelessly raised awareness, generously donated monies and diligently toiled in research labs to find a cure. But I need to say that EVERY day is a blessing and something we do not take for granted. When you have sat across a table from a doctor who tells you your baby has cancer, your world changes.

Sean was diagnosed seven years ago with osteosarcoma – bone cancer above his left knee. He started treatment in July of 2007, had a radical amputation surgery called rotationplasty to remove the cancerous bone, and finished up with chemo in March of 2008. He was only 11.

Since that day in March 2008, he has not looked back nor has he let cancer or his amputation stop him. He continued to play football, basketball and lacrosse and even took up wrestling in high school. He got on with life, and thrived, with an unwavering determination and engaging sense of humor. Today, he attends college on a lacrosse scholarship at a division II school.

While I, of course, think Sean is amazing and wonderful, all of our children are just as wonderful and amazing – and that is why I am asking you for help. Childhood cancer families are fighting a war and our children are left without proper equipment and protection they need to ward off this monster we call cancer.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Childhood cancer is different from adult cancer, but children are given decades’ old treatment meant for adults and it is just not adequate. Our kids are still dying and/or living with the awful side effects of their treatments. To say it is woefully inadequate is putting it mildly. We are tired. We are exhausted. We are in need.

So, today, on Sean’s 19th birthday, I ask that you support CURE.

We have wiped away enough many tears; it is now time to wipe away childhood cancer.


September 13th, 2014

CURE Childhood Cancer Honors Elena & Olivia Tate

September is National Childhood Cancer Awareness Month. Join us today, September 13, 2014 as CURE Childhood Cancer honors CURE Kids Elena and Olivia Tate. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Elena and Olivia’s fundraising page. 

Elena & Olivia Tate PhotoOur family has a date that changed our lives forever. Not once, but twice. On April 6, 2004, our youngest daughter, Olivia, was diagnosed with a brain tumor. Five years later on April 6, 2009, our daughter, Elena, was diagnosed with leukemia.

Spring Break 2004, we were at the beach. Olivia, then two, had been tilting her head to the side and stumbling while walking. We quickly grew more concerned when she began waking up in the middle of the night, holding the back of her head and vomiting. We found ourselves headed to the nearest emergency room. They performed a cat scan and we were told that our baby girl had a brain tumor. That is not an easy thing to hear. The walls seemed to close in on us. All we kept asking ourselves was what do we do now. Olivia was flown from Florida to Children’s Healthcare of Atlanta where she underwent a successful surgery to remove her tumor. It was then that we learned her tumor was a Juvenile Pilocytic Astrocytoma. We were soon back home thanking God for all of the wonderful people He had put in our path and for getting us through this ordeal.

It was amazing how quickly Olivia recovered from major brain surgery with little side effects. Life as we knew it resumed. Surgery was the only treatment necessary for Olivia and we were ready to move on – which we did. Over the next three years, Olivia had eight follow up MRIs that all showed no signs of a recurrent tumor. In July 2007, that changed. We were told that what was first thought to be scar tissue was actually a recurrent tumor. Here, three years later, the news wasn’t any easier to hear. Olivia’s neurosurgeon carefully watched the tumor and on June 6, 2008, he performed a second surgery on Olivia. All went well and today, six years and eight post-surgery MRI’s later, Olivia remains tumor free.

Spring Break 2009, we weren’t at the beach. Elena had been having severe back and leg pain. With our pediatrician’s guidance, we were trying to figure things out. While waiting at Scottish Rite for a scheduled MRI, the pediatrician called and said, “It is leukemia.” Once again, simply stated words had drastically changed our lives. It felt like the world had stopped turning. We couldn’t process it. Three difficult months followed Elena’s release from the hospital. It was all so very different from our experience with Olivia. We couldn’t believe that after going to the Aflac Cancer Center with Olivia for five years, we would now be taking our other daughter there as well! Slowly, life slowly began to settle. Elena has completed numerous chemo visits, lumbar punctures, blood and platelet transfusions, emergency room visits, infections, and a life threatening hospital stay. On August 3, 2011, Elena completed her treatment for ALL. Unfortunately, her first battle was not a complete victory. Elena relapsed on February 24, 2012. Instead of enjoying the carefree days of last summer, Elena underwent nine intense days of chemo and radiation to prepare her body for a life-saving bone marrow transplant. She had her transplant on July 25, 2012. She has been through so much in her young life. She is a fighter and we are praying that her bone marrow transplant has given her a new life and that she will remain cancer free forever.

While our girls’ treatment journeys were so very different, the anxiety and pain were the same. Today, both girls are beautiful examples of what it means to be a survivor. They both handle the stress and difficulties of their late term effects from treatment with perseverance and grace. Elena, now 15, and Olivia, now 12, are absolutely amazing! Although the past ten years have been challenging, we have been richly blessed with amazing support from our friends, family, church, and even strangers. Our lives have been forever changed, but God has been in the details and He continues to bless us each and every day.

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However, the battle for a cure continues. Every day children are fighting this horrible disease. The impact of cancer hurts everyone. It robs families of so many things: their joy, peace, time, health, finances, relationships, and even their own children. We can’t stop fighting until there is a cure. Please consider joining us in this fight!


September 12th, 2014

CURE Childhood Cancer Honors Evan Nelms

September is National Childhood Cancer Awareness Month. Join us today, September 12, 2014 as CURE Childhood Cancer honors Evan Nelms. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Evan’s fundraising page. 

Evan Nelms PhotoEvan was diagnosed with Acute Myeloid Leukemia (AML) on April 22, 2012 at the age of four. After a week of cold symptoms, fever and finally unable to walk on his legs, we received the news that no parent should ever have to hear… your son has cancer. At that moment our lives changed forever.

Evan started four very intense rounds of chemotherapy immediately. After the first month, he was in remission and walking again! We thought everything was going so well. After testing Evans Acute Myeloid Leukemia thoroughly, the doctors explained that Evan had a type of AML that was never seen or documented prior; a three chromosome translocation (2, 10 and 11). They discussed the possibility of a bone marrow transplant and immediately started looking for a match.

Evans biological brother, Zach, was not a match nor did Evan have a match worldwide. But Evan was improving and no signs of the Leukemia were returning. On August 4, 2012, chemo had stopped. We decided not to pursue transplant at that time. Evan was a survivor and doing so well!

After five months of remission, on January 4, 2013, we took Evan back to the oncologist and found out that he had relapsed in the testicles at the age of five. We immediately started isolated radiation to that area. After a week of treatment, the leukemia had spread to his bone marrow. Now it was considered a full relapse and Evan would have to have a bone marrow transplant.

We immediately relocated to Philadelphia to see specialists. Upon arrival and about to commence chemo again, Evan lost his vision in his right eye due to the Leukemia attacking the optical nerve. This has never been seen before; leukemia causing a stroke of the eye. At this point, The Children’s Hospital of Philadelphia started emergent radiation to his eye. After 12 intense sessions of radiation, the tumor seemed to be shrinking but the eye sight did not return. It seemed that so many odds were against little Evan and the unexplainable were continuing to happen. Why???

Again we started chemotherapy and it seemed to be working until the bone marrow and blood test results were coming back. Then, a large Leukemic mass formed in his abdomen wrapping around the kidney by the aorta. After three months of chemo, the Leukemia was not going away; it was taking over his little body. They called this “chemotherapy resistance.” The chemo wasn’t working. In order to get to transplant (bone marrow transplant), the patient has to be in remission. Evan was not. Evan still did not have a match in the national and international bone marrow registry either. He did have a five out of six match for cord blood; the next best option. But without remission, he would not be able to go to the life saving transplant.

On April 10, 2013, we found out that the leukemia had spread to 95% of Evans bone marrow and 90% of his blood, basically completely taking over his body. At this point the doctors stated there was nothing more they could do; Evan was terminal. They gave him a few days to a week left to be in this world. The most heartbreaking words I have ever heard in my life.

Evan passed away on Saturday, April 13, 2013 at 9:57 am. My angel fought the most heroic battle. For such a small little boy who could not walk from his Leukemia almost a year prior and had been through a nightmare fighting for his life twice without ever realizing it… he is a superhero. He just wanted to be a normal kid and play outside and swim with his little buddies. But instead, he was in a hospital for almost 25% of his short life. But even then, Evan never complained about his cancer. He will never be forgotten and is truly missed. He became such an inspiration to so many across the globe. He is his mom’s hero, inspiration and courage every day. We ask that you become a bone marrow donor on the national registry or through the DOD. More matches are needed to save lives. If you are pregnant, please consider donating your baby’s cord; many lifesaving procedures are happening because of cord blood. Please also donate blood and platelets; these donations go to cancer patients as well which is imperative to their survival during chemo treatments.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Acute Myeloid Leukemia is a very rare form of leukemia. It does not affect many children; normally the older population is diagnosed with AML, so in turn, they are not many new chemo drugs for this type of cancer. We need more research to find cures through funding. We ask that you donate and help support childhood cancer so cures can be found. Children are our future and we lose seven a day to cancer, Evan included. It is not fair and our lives will never be the same without our beautiful children who fought so hard and in reality had no idea what they were fighting all together. Please help us and so many other families. Thank you!


September 12th, 2014

CURE Childhood Cancer Honors Alicea Davis

September is National Childhood Cancer Awareness Month. Join us today, September 12, 2014 as CURE Childhood Cancer honors Alicea Davis. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Alicea’s fundraising page. 

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One evening, while my four-year-old little angel, Alicea, was finishing up her bath, she came out of the bathtub and yelled for her dad and I to come see her. She showed us a region on her abdomen, which was protruding, but complained of no pain at the time.

Although we had just recently been told by her doctor’s office she was simply retaining gas, hence the swollen abdomen, we took her back to the doctor for another examination.

After leaving the hospital, I went home and began researching this disease online only to find out more disturbing and alarming information, most of which I could not discern. Finally, later that evening, we received a telephone call from Alicea’s surgeon. The surgeon’s voice was calm and reassuring. After hanging up the telephone, I ran to find my daughter in the other room and held her tighter than I ever had before with a renewed confidence regarding her prognosis.Upon viewing Alicea’s x-rays during the follow-up visit, the nurse practitioner immediately referred her to a radiologist for more testing. On March 27, 2009, our precious baby girl visited Children’s Healthcare of Atlanta at Egleston in Atlanta for a C-T scan. When the results of the test were read to us, we were floored. We were told that she had a large “Wilms” tumor on her left kidney, which had essentially taken over the kidney and would have to be surgically removed. In disbelief, we asked the radiologist whether this tumor was malignant or benign. The radiologist said he was 99% sure the tumor was malignant. As tears flowed from my eyes, I still remained confident that my baby would be just fine by God’s grace, but the incredulity was still difficult to overcome. After all, this precious little angel had just been bouncing around the house, at preschool, at church and everywhere else with no signs of any sickness or pain.

On Wednesday, April 1, 2009, our courageous little soldier went under the knife to have the tumor and her left kidney removed. The surgery was a tremendous success! For the next six days, Alicea got stronger and stronger with each visit from loved ones, until finally, she was released from the hospital. Following the surgery, she underwent 20 weeks of chemotherapy. She lost her hair, but definitely not her spirit and her spunk.

On August 17, 2009, Alicea completed chemo and received a clean bill of health – she was CANCER-FREE!!! Periodic check-ups are still required as follow-ups to treatment, but as far we are concerned, the battle has been WON!!! Now, five and a half years later, this precious gift from above is a 5th grade honor student, a talented performer and artist and a competitive gymnast. All glory be to God!

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Much to our surprise initially, this story is all too familiar to so many families just like us. However, until we were directly impacted by this deadly disease, we did not take notice and become involved in the fight. This is not something of which we are proud. Our only hope is that this precious gift from God – our beautiful daughter, Alicea, touches the lives of all of those with whom she comes in contact through her triumphant story of survival, as she has touched ours.

 


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