Cure Childhood Cancer


September 30th, 2014

CURE Childhood Cancer Honors Blake Morgan

September is National Childhood Cancer Awareness Month. Join us today, September 30, 2014 as CURE Childhood Cancer honors Blake Morgan. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Blake’s fundraising page. 


Around Christmas of 2011, while visiting his dad in Kansas, Blake found a knot on the back of his head. He called home and complained about the knot. We thought maybe he had bumped his head on something and just didn’t remember. He said it was small, maybe the size of a grape. None of us thought anything of it. When he returned home the first week in January, he said it had gotten a little bigger and still hurt. Still, we didn’t think much of it and we told him we’d watch it. On the last day of hunting season Blake went with his step-dad hunting and was telling him the sun light was bright. His step-dad told him to put on a hat. Blake let him know he couldn’t and that the knot had grown much bigger. His step dad immediately brought him home. They didn’t finish the hunt. That Monday we were in the doctor’s office. The pediatrician thought maybe a hematoma and scheduled us for an ultrasound three days later. The next morning Blake got up and was in a great amount of pain. He said it was the most pain he’d felt since he first found the knot. We called the doctor back and got him in for an MRI. The doctor told us not to leave – stay close until he got the results.

We got a call about an hour after the MRI to get back to the pediatrician’s office. Blake and I (mom) were worried, but not so much that we were to the upset point yet. Dr. Deal came in and told us that Blake had a tumor and that we were going to have to go to Savannah for treatment. Prelim results of the MRI were an eosinophilia granuloma. This was on January 24th. The next few days were like we were living in some other world. We didn’t know what to say, or even how to take it all in.

We saw the neurosurgeon the following Monday and by the following Friday Blake was in surgery. Everything seemed to be in slow motion for all of us, but happening so fast. Biopsy results from the tumor showed Langerhans Cell Histosytosis. This nasty thing was about the size of a golf ball, and had eaten almost a two inch hole in Blake’s head. Doctors struggled with treatment plans and follow ups. Blake went through radiation to the sight. We finished the treatments in April 2012 and we’ve had a few scares here and there, but thankfully nothing else has shown up. Blake goes for follow ups once a year which include having a PET scan and he is doing great!

One thing about Blake is that he’s very active, loves sports especially baseball and football. This stopped him from being about to enjoy life and be a “normal” kid for a full season of baseball and part of the next season for football. He couldn’t participate in the baseball practices but he would go out and sit and watch from the side. He couldn’t participate in football practice but he was out there encouraging his team mates, and building them up – snapping chin straps, making sure pads were in the right place You name it, Blake was doing it. The second game into the season, Blake was released from the Doctor and allowed to return to football. We got to the game at about the half, Blake walked into the dressing room, trying to hold his composure and excitement back as he handed the coach the release…but he couldn’t!! He was so excited. Blake was 13 when all of this took place. He’s now 16, a sophomore and going strong!! Through all of this we met many people – adults, kids and doctors. Blake’s favorite, Doctor Duttonhaver, encouraged Blake and kept his spirits up during this time. This has lead Blake to future plans of becoming a radiologist/oncologist. He would love to see a cure found for all types of cancers, even these that are in question.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503This October 3rd the High School that Blake attends – Claxton High – will host it’s first “Gold Out” night in honor of all the children affected by cancer. They will honor those that have “won” their battle and those who have gained angel wings. Blake refuses to say any child lost their battle – they’ve all won. We will also be raising awareness and money for CURE. He also shaves his head every year during the entire month of September as his way of making people aware. He has a horseshoe scar on the back of his head and when people are curious and ask what happened, he always makes a joke about it and then he tells them the real story. From what we’ve been told, this type of cancer is only treatable, not curable. Blake would love to see all cancers CUREABLE!!

September 30th, 2014

CURE Childhood Cancer Honors Miley Parker

September is National Childhood Cancer Awareness Month. Join us today, September 30, 2014 as CURE Childhood Cancer honors Miley Parker. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Miley’s fundraising page. 

Miley Parker Photo

Miley, our six-year-old daughter, is a cancer survivor. At just seven months old, Miley was diagnosed with retinoblastoma. The doctors found a less than three-millimeter tumor in her left retina. To kill a tumor that was about the size of a sharpened pencil lead, our infant daughter endured six months of chemotherapy and nine laser treatments to her retina; targeted at burning the tumor away. The laser caused not only the tumor to die, but also scarred the area around the tumor that resulted in her having a blind spot in her left eye. We are very thankful that today she has great vision with both eyes. She wears protective glasses to prevent an accidental eye injury and we have patched her right eye for a few hours every day, for nearly five years, to keep her brain exercising her weaker left eye.

We now know that Miley’s story is extremely unique. Her cancer was caught very early. Her doctors told us to, “expect, even plan on” more tumors. We refused to do that and truly, through God alone, she has never had another tumor develop.

Miley has been screened closely for the past five years because of the probability of another tumor developing or the original tumor recurring. In five years, Miley has had anesthesia 29 times for eye exams under anesthesia (EUA) to check for more tumors in her eyes and regrowth of the original tumor and has had 12 sedated MRI’s to check for tumors outside of her eyes and in her brain, which are associated with retinoblastoma. We praise God that another tumor never developed and are thankful for the close watch her doctors have kept over her.

Today Miley is healed and a healthy six-year-old 1st grader. She is wise beyond her years. Miley loves her family and friends fiercely and is the best big sister to her little two-year-old brother, Eli. She loves life and Jesus Christ. She is cancer free and has been since March 30, 2009. We praise God with all of our being for the blessing of healing he gave to our daughter. Jeremiah 17: 14: “Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the one I praise.” We praise God for the gift of both of our children’s lives, for the gift of all life, and our family is forever changed with hearts of daily gratitude.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Miley had ONE three-millimeter tumor. Miley’s cancer was a “best case” scenario (if there is a thing with cancer). It was caught early, the treatment worked, and the cancer has not recurred; that is too often not the case with childhood cancer. Join us to raise funding for research for better treatments, less side effects, and for a cure. Thank you so much for all the support you have shown our family. Join us for a cure for all.


September 30th, 2014

CURE Childhood Cancer Honors Sophie Piller

September is National Childhood Cancer Awareness Month. Join us today, September 30, 2014 as CURE Childhood Cancer honors CURE Kid Sophie Piller. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Sophie’s fundraising page. 

Sophie Piller PhotoOn December 10, 2013, our beloved five-year-old Sophie was diagnosed with a cancerous mass in her liver. She had only three days of occasional stomach discomfort, a decrease in appetite, and a few episodes of vomiting. An x-ray and exam were done by her pediatrician, which prompted an ultrasound the next morning. This showed the mass and he arranged for immediate admission to Children’s Healthcare of Atlanta at Scottish Rite.

After careful consideration, the oncology and surgical team agreed that the tumor was too close to vital structures to safely remove the tumor entirely without significant risk of causing further injury or leaving cancer cells behind. Sophie endured two rounds of weekly chemotherapy. After these two rounds, the tumor had shrunk enough to be removed in late January.

The surgery day arrived, but a huge snowstorm (by Georgia standards) threatened to delay the surgery. After a three-hour car ride to go 70 miles, along back roads avoiding stranded cars, we arrived safely at CHOA. Sophie had the surgery the next day and her tumor was successfully removed. Four more rounds of chemo would follow.

In mid-February, we discovered that Sophie had developed a rare but significant complication from her surgery. She was having more pain, not eating well and losing weight at an alarming rate. She was readmitted to CHOA and a battery of tests and scans revealed that her liver was leaking bile into her abdomen, and it had formed a huge cyst.

A drain was placed and she was discharged with a feeding tube in her nose and a bag connected to the drain. For a month, we fed her formula through the tube with a pump three times a day and all night. We had to empty the drain twice a day. Despite that, she kept a positive attitude, started gaining energy and weight; and she didn’t let it slow her down. Unfortunately, the drain alone did not stop the leak.

Between her fourth and fifth rounds of chemo, Sophie had another major abdominal surgery to fix the leak. She recovered well and completed the last of her six rounds of chemo in mid-May. The treatment was followed by the best news we could have ever hoped for – a clean scan and encouraging blood work. She is now off treatment and is having blood drawn every two months for monitoring. Her access port was removed as well.

Throughout this six-month process, Sophie spent 40 nights in the hospital and missed a significant amount of kindergarten. She was always brave and rarely complained. We drew tremendous amount strength from our amazing medical team, our family and friends, and our community here in Rome.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503We have had a wonderful summer. In addition to celebrating her sixth birthday, Sophie has spent time playing with her sister and friends, swimming, and going to camps. She has fully enjoyed feeling well again, and in many ways we have noticed that she seems more outgoing and confident than ever before.

September 29th, 2014

CURE Childhood Cancer Honors Lindsey Leigh Hayes

September is National Childhood Cancer Awareness Month. Join us today, September 29, 2014 as CURE Childhood Cancer honors Lindsey Leigh Hayes. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Lindsey’s fundraising page. 


With nothing but a mere, “mommy I don’t feel good, ” Lindsey Leigh Hayes was diagnosed with Stage Four Neuroblastoma cancer on February 1, 1997.

At the time I was a stay at home mom with Lindsey and her younger brother Josh. I took her to numerous Doctors and most of them thought it was a virus. I knew my daughter and I did not give up; I knew something was wrong. But I never dreamed it was cancer.

I finally took her to a primary medical care and the Doctor there felt something immediately. She sent me over for a sonogram and they saw the tumor, it was bigger than a cantaloupe but smaller than a large melon, in her adrenal gland and wrapped around her aorta. I was a young mother and I thought cancer was for old people. Not my child.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503They told me she had a 3% chance of survival. So our new life began, living in the hospital for a year and a half. She had 5 rounds of chemo, 2 bone marrow transplants, and local and total body radiation. Even though it was one of the roughest times in our lives, it did prepare us for any future unknowns. And her treatment could have helped saved other lives. With an enormous amount of prayers and excellent doctors, Lindsey beat the odds. She is now 22 years old.


September 29th, 2014

CURE Childhood Cancer Honors Abby Collins

September is National Childhood Cancer Awareness Month. Join us today, September 29, 2014 as CURE Childhood Cancer honors Abby Collins. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Abby’s fundraising page. 

My journey started in 2009. I had just turned 12 years old and beginning 7th grade when I found out I had a Brain Tumor. My journey continues.

Today, I am speaking out for all the babies, children, teens and young adults who have been diagnosed with cancer. It is important that I share what it is like to go through chemo, to feel yucky, to lose my hair, go through pokes, surgeries, having my port access, MRIs, missing out on parties, school events, not feeling like you fit in. And just when I think I am finished with everything, I go on chemo again. I have learned so much while on this roller coaster journey; about my friends, others and myself. I have also learned that going through with treatment does not mean you are cured. Things can be just as difficult to handle.

My Brain Tumor/Cancer controls everything I do. It affects my vision, emotions, hormones, growth, memory, appetite, sleep, headaches and much more. I want people to understand what children go through when diagnosed with cancer. I want people to understand why we need more research to find cures for childhood cancer. I want people to understand when we finish our treatments; it does not mean we are cured. We continue to have MRIs, pokes and doctor appointments. We deal with side effects from chemo or radiation. We have a higher chance of developing another type of cancer down the road. We have been affected emotionally and physically.

Every day, children all across the world will find out they have some type of cancer.

Giving to CURE will help provide more research for pediatric cancers. Giving to CURE helps support families financially with meals, places to stay, transportation and much more.

Today, I am blessed that I can write this letter and speak out on the importance of finding a cure for all pediatric cancers. Many children have lost their battle and will never see research find a cure.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503My name is Abby Collins and September is Childhood Cancer Awareness Month!

Help CURE, help others!

Donate today!

Thank You

September 29th, 2014

CURE Childhood Cancer Honors Jared Forman

September is National Childhood Cancer Awareness Month. Join us today, September 29, 2014 as CURE Childhood Cancer honors Jared Forman. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Jared’s fundraising page. 

Jared Forman PhotoOn November 12, 2006, Jared Daniel Forman was born to Jordan and Jodi and was Joshua’s little brother. From the day he entered this world, he brought his family and those who knew him joy. He was an exceptionally beautiful child. He had blond hair and big, beautiful, soulful, baby blue eyes. He was very charming and tried to use that charm to get away with things from time to time!

Jared loved his family. He was adored by his preschool, kindergarten and first grade teachers, as well as by his classmates. He was a bright and sweet young boy. Jared often finished his school assignments before others in the class and would then help other students. He even defended his classmates on the playground if they were bullied by older students. Even at his young age, he made friends with all the boys and girls in his classes.

He was all boy. He loved to play soccer, football (where he was quarterback and hoped to be in the NFL someday), basketball, baseball, and especially in the summer, he loved to swim and play ball in the pool with his family. He was quite athletic and loved by his teammates. He also loved music and was studying guitar, as he also hoped to become a rock star one day. Jared loved animals, especially his shih Tzu, Reuben. He was artistically talented as well. He loved to draw and paint and was very good at it. He was a good writer and wrote a book at school about the need for community to help people in bad times. If he put his mind to something, he was good at it. Jared loved playing sports outside or playing video games and board games with his older brother, Joshua. The two of them were best friends. Jared was a gift and truly a special boy. He loved his family and life, as he wrote in his diary.

Jared’s cancer journey was so short, that he never even knew he had cancer or was sick. In fact, no one knew he had cancer until he slipped into an irreversible coma on Tuesday, April 15, 2014. His school had been on spring break for four days at the time. During those days he: played in a league baseball game, had a play date, played Frisbee and basketball outside, walked his dog, swam, played kickball, and had a good time celebrating the Jewish festival of Passover. He was a happy child and unaware he was sick right up until his last waking moments. On April 16, 2014, we learned that he had an inoperable brain tumor in his brain stem, a bithalamic glioblastoma multiforme. He died on Friday morning, April 18, 2014, at the age of seven.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503We hope that more can be learned about cures as well as causes of childhood cancer. We hope that someday soon, families will no longer have to suffer the sadness in our hearts that we feel from losing our precious angel Jared.

September 29th, 2014

CURE Childhood Cancer Honors Watson Dufresne

September is National Childhood Cancer Awareness Month. Join us today, September 29, 2014 as CURE Childhood Cancer honors Watson Dufresne. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Watson’s fundraising page.

Watson DuFresne 2On December 10, 2009 our son, Watson, was diagnosed with Acute Lymphoblastic Leukemia. In that moment, his life and our family’s life changed forever. He began nine months of intense chemotherapy treatment to eradicate the cancer cells from his blood. These efforts left our son sick, hospitalized, homebound, and with a severely compromised immune system. His bald head was the least of our worries. For the next two-and-a-half years, he continued daily treatment in a maintenance program that required a significant sacrifice for Watson and our way of life. God willing and ever thankful, after three years, four months, and four days, Watson finished his regimen of chemotherapy on April 13, 2013. As of today, Watson has been completely off treatment for nearly one-and-a-half years!! We feel so blessed and are grateful for the chance to be “normal” again.

Through our experience, our eyes have been opened to a world of suffering and need. While leukemia is the most common and treatable form of childhood cancer, there are no guarantees and treatment comes at an immeasurable cost. In the past sixty years the overall survival rates have risen from less than 10% to almost 80%. This is significant progress, but 1-in-5 children with cancer do not survive; it is the #1 cause of death by disease of children. Still, only 3% of federal funding for cancer research is focused on childhood cancers.

Based on these statistics and our personal experience, we feel compelled, guided by a moral obligation for our children, to push forward and cure childhood cancer in our lifetime. We’re seeking to raise funds again this year for pediatric cancer research through CURE Childhood Cancer. CURE is one of the amazing organizations in the state of Georgia and has supported our family since our diagnosis. Without their past and present support, I can’t even begin to imagine where Watson and our family would be in our fight against cancer.

We are so proud and humbled that Watson’s Warriors have jumped on board with our vision to make an impact on childhood cancer. Since 2011, Watson’s Warriors have raised and donated more than $37,500 for CURE! The amount of children and families they’ve impacted is staggering!

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Since diagnosis and throughout treatment, we’ve tried to root ourselves in the truth of Romans 5: 1-5. This experience has literally brought us to our knees and taught us the dependency on God. It has also taught us the cycle of suffering, perseverance, character, and hope… “and hope does not disappoint us because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” Please consider partnering with us again this year to build hope for children and families fighting cancer.

September 28th, 2014

CURE Childhood Cancer Honors Audrey DeShetler

September is National Childhood Cancer Awareness Month. Join us today, September 28, 2014 as CURE Childhood Cancer honors CURE Kid Audrey DeShetler. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Audrey’s fundraising page.

Audrey DeShetler Photo 2Audrey DeShetler led a very active and happy life for five years. She had virtually no health issues or anything that would lead us to believe she had any ailments. On Halloween in 2010, she went trick or treating throughout the whole neighborhood without missing any houses. She did however, complain of leg and stomach pains, but we dismissed it as over-exertion from Halloween activities. What we found out ten days later changed our lives forever. Audrey was diagnosed with Stage IV High Risk Neuroblastoma: a rare and often fatal form of a peripheral nerve cell cancer. At the time of diagnosis it was in her abdomen, spine, skull, and legs.

The medical treatments she received over the first 18 months were something no child should have to endure. She immediately had a central broviac line placed on her chest that threaded inside her subclavian vein to her heart in order to receive the countless blood transfusions, IV fluids, and treatments to be followed. After six rounds of intensive induction chemotherapy and countless trip to the emergency room, she had a five-and-a-half hour surgery to remove her primary tumor. Her tandem transplants were perhaps the hardest part of her treatment. There was a time her temperature reached 108-109 F and her heartbeat was around 200. There were many nights where we thought we might lose her. By the miracle of God, she did turn around and recover. The next eight months she finished the protocol with radiation and harsh antibody therapy and was declared NED (no evidence of disease) in August 2011. Audrey had spent more than 200 days in the hospital or as an outpatient up until this point.

We thought we had beaten the disease but unfortunately, it came back in May 2013. It was heart-wrenching and agonizing when the doctors told us that her disease was terminal at this point and that our goal now was to aim for quality of life. As parents we felt helpless and scrambled for options. We decided to quickly enroll Audrey into an experimental chemotherapy trial. By the grace of God she achieved her second remission in July of 2013 (after only 2 rounds of the drug). After 14 rounds of this chemotherapy, Audrey is now enrolled in a vaccine trial where the goal is to cure her. She continues to be in remission and fight this brutal disease with courage and energy.

When Audrey was born, Ben and I held her in our arms and we both felt a sense of joy. We decided that her middle name should be Joy. Audrey is a true Joy to us and anyone who knows her. Audrey lost a significant part of her hearing due to the intensive chemotherapy and requires continuing physical therapy. Her body has weakened and her immune system has been decimated by the more than 20 rounds of intense chemotherapy and stem cell transplants. It is her love of life and her determination to win the fight against cancer that is a true inspiration to us all.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503 She is more active than ever and embraces life at full speed. However, most relapsed children are not as fortunate as Audrey. We were told that Audrey had a 1% chance of staying in a second remission more than a year. We have been blessed because we are approaching 14 months now. We need to find a cure for her and the thousands of other children afflicted by this terrible disease. We need less toxic therapies. We urge you to support CURE to find a cure for childhood cancer.

September 28th, 2014

CURE Childhood Cancer Honors Abby Smith

September is National Childhood Cancer Awareness Month. Join us today, September 28, 2014 as CURE Childhood Cancer honors Abby Smith. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Abby’s fundraising page. 

Abby Smith PhotoAbigail Grace Smith (aka Abby) battled cancer for more than two-thirds of her life. In mid February 2006, Abby developed balance issues that did not allow her to walk without falling. On March 3, 2006, at the age of 23-months old, Abby was diagnosed with a golf ball size medulloblastoma brain tumor. She had a successful total tumor resection on March 6, 2006. Unfortunately, Abby developed posterior fossa syndrome within days after surgery, which caused her to lose most of her gross and fine motor skill capability for a period of time. Abby initially underwent four cycles of chemotherapy, 30 days of radiation and then eight maintenance cycles of chemotherapy. She completed her treatment in late May 2007. Abby began thriving and improving and was a picture of health.

After a routine follow-up head and spine MRI on September 28, 2007, Abby was diagnosed with drop metastases in her spine in multiple places. She had exhibited no symptoms. All of Abby’s MRI’s and spinal taps had been clear to date with no evidence of cancer since March 6, 2006. From October 2007-March 2008, Abby endured three cycles of high dose ICE chemotherapy and a cord blood and bone marrow stem cell transplant. Abby went on to receive 25 cranial/spinal proton beam radiation treatments during late May/June 2008.  She completed her relapse treatment on June 30, 2008. Only two small places remained on Abby’s spine that continued to improve or stay stable.

For eleven months, Abby was on a 14-day cycle drug maintenance therapy. She continued to get stronger and thrive during this time. On June 23, 2009, fifty-one weeks post relapse treatment, Abby had a routine follow-up MRI. Her scan revealed a grape size tumor in her brain and haziness in her spine. Two inconclusive spinal taps raised further concern. Again, Abby had exhibited no symptoms. To battle this second relapse, Abby began a daily metronomic chemotherapy regimen administered at home on July 20, 2009, which continued through January 27, 2011.

Abby was hospitalized on January 28, 2011 due to extreme anemia and four unrelated infections which led to sepsis, a mild stroke, seizures, the beginning of multi organ failure and seven days in the PICU. Abby miraculously recovered and went home on February 12th. After overcoming this ordeal, we were very optimistic about her March 22nd MRI.  Devastatingly, her MRI showed multiple lesions in the brain and at least one new lesion in the spine with haziness. As with all other relapses, Abby was completely asymptomatic. There were very few treatment options available for this third relapse.

Furthermore, Abby’s body told us that she was finished fighting due to problems maintaining any significant platelet count. She was only able to receive two single drug chemotherapy infusions. Yet, during this time, Abby continued to live a very normal, healthy, happy life. She was the flower girl in her dear babysitter’s wedding where she walked down the aisle ALL BY HERSELF on June 25, 2011.

Beginning on July 27, 2011, Abby started exhibiting symptoms that seemed more like a viral infection. On August 5th, Abby started having balance issues and lost her ability to walk independently. After a spiked fever brought us to the ER, Abby had a CT scan on August 8th that revealed at least two large tumors that were near her brain stem. We spent seven days at home before tumor related complications brought us back to the hospital where she ran into Jesus’ arms on August 17, 2011 at the age of seven-years-old.

Through her 65 ½ month journey, Abby’s determined and fighting spirit pushed her forward each day. She was our miracle girl!! Throughout her cancer diagnosis, Abby lived out the meaning of her middle name as she faced all of her hospitalizations, treatments and pricks and pokes with such grace that can only come from above. She will be forever remembered by her big blue green eyes, her beautiful heartwarming smile which connected you to her immediately, her love of pink, and her fashionable display of many bracelets at all times. Abby loved her family with the most sincere affection and was happiest when we were all with her. Our Christian faith has been our stronghold throughout our journey with Abby and continues to be as we face life without her.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Abby, you will always be our hero and the sweetest girl that we ever knew!!

Thank you for helping CURE as they endeavor to fund research and treatment options for the countless children like Abby affected by this terrible disease!

September 27th, 2014

Emma’s Story

CURE Childhood Cancer is honored to share the story of Emma Trapani. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Below Emma’s family has shared her touching story of her journey with cancer. 

Emma Trapani PhotoEmma was barely two and a half years old in June 2009. Our sitter told us she noticed an odd light reflection in Emma’s right eye. The next day I called my own optometrist and they fit us in that afternoon. Within the next few days we were referred to a Pediatric Ophthalmologist and a Pediatric Retina Specialist at Emory University. Emma endured endless eye exams and tests over the next six days and ultimately on June 19, 2009 her diagnosis was confirmed after an MRI. Our little girl had Retinoblastoma, a very rare malignant eye cancer, growing behind her right eye.

I was seven months pregnant then with our second child. We had a new baby on the way and our precious baby we already had was about to fight a very grown up disease. We were devastated. On June 29th we checked her into Egelston’s Children’s Hospital for surgery to have her enucleation. She recovered quickly from the surgery and was back to her normal two and a half year old antics in just a few days! When the test results came back, we found that Emma’s form of Retinoblastoma was not genetic and that the chances of our unborn baby inheriting the disease were unlikely. However, we found out that Emma had some “high risk features” involving her cancer and would need chemotherapy. Emma had one more surgery for a port placement in her chest where she would have her chemo administered. She started chemo at the end of July 2009 at the AFLAC Center at Egelston’s and she received her last chemo treatment in January 2010.

Just two days after Emma’s second chemo treatment, Bella was born. That day, tiny Bella gave her big sister the greatest gift she could– Hope. We were able to bank Bella’s cord blood for Emma’s future. Bella was just two weeks old by the time Emma went back to AFLAC for her third round of chemo. In those six months we were trying to find some kind of freakishly odd balance between caring for a newborn, traveling with Emma to the hospital for two days of outpatient chemo every six weeks, and helping Emma to navigate the new challenges of wearing glasses as a pretty active three year old as well as taking her to get fittings done for her new prosthesis she would have to wear. Each day we would say another prayer and we would look at her and still see our Emma, bright and cheerful and full of life. That alone got us through the worst days when we just could not seem to comprehend what was happening.

Emma continues to grow, shine, and face life head on with so much fierceness– we couldn’t be more proud of her. This upcoming February she will celebrate her fifth year of being a cancer survivor.

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