Cure Childhood Cancer

CURE Blog


October 3rd, 2012

Family and Business Support CURE After Diagnosis

Mark and Kay Jackson’s life was turned upside down the day that their daughter Ali was diagnosed with high risk Acute Lymphoblastic Leukemia (ALL) when she was only eleven years old.

Immediately after diagnosis, Ali underwent aggressive treatment and suffered from extensive medical complications, resulting in the need to undergo numerous surgeries and a bi-frontal craniotomy. After spending an extensive period of time in the intensive care unit, Ali eventually recovered but has since had to endure several reconstructive surgeries of her face.

During Ali’s stay at Children’s Healthcare of Atlanta, CURE Childhood Cancer had the privilege of meeting the Jackson family and often spent time with them during Thursday night Open Arms dinners.

Since this time, Mark and his business partner Jim Croft, decided that it was important to become more involved with CURE. As a result, Croft & Associates Architecture has donated lunches to the patients being treated at the Aflac Cancer Center for over seven months.

“We became involved with CURE because of our experience with our daughters cancers,” said Mark. “We chose CURE, over the American Cancer Society, because they are truly dedicated to finding a cure for childhood cancer.”

We are sincerely thankful for the continuous contributions of Croft & Associates and the support of the Jackson family. With their help, and those of many others, we are able to be a constant source of support, help and encouragement for our patients and their families.


August 17th, 2012

Board Spotlight: Kevin Kennedy

CURE Childhood Cancer is honored to have a diverse and well-connected Board of Directors and we would like our community to get to know them. In this spotlight series we will highlight a board member and share why he or she is dedicated to CURE.

This week, we are pleased to introduce you to one of our newest board members, Kevin Kennedy, the Vice President of ISG Technology at Morgan Stanley. Kevin shared with us:

“My experience with CURE started shortly after my 18 year old son Joe was diagnosed with aplastic anemia in June, 2007. I had never heard of CURE or the Aflac Cancer Center before that night and we had no experience dealing with a life threatening illness. That was soon to change. Joe was treated at Aflac and eventually sent to the NIH in Bethesda to participate in a clinical trial. We almost lost Joe on two different occasions while we were at the NIH; thankfully he stabilized and slowly improved. Through a family friend, I was able to meet Lauren Gearon. Lauren graciously spoke to my wife and me about her experience with aplastic anemia – she gave us hope. Three months later Joe had recovered enough to try going to college. Lauren was kind enough to meet with Joe – she gave Joe hope. We have been supporters of CURE since that time because CURE gives hope to families facing these horrific childhood illnesses.”

 


March 28th, 2012

Board Spotlight: Jill Becker

CURE Childhood Cancer is honored to have a diverse and well-connected Board of Directors and we would like our community to get to know them. In this spotlight series we will highlight a board member and share why he or she is dedicated to CURE.

This week, we are pleased to introduce you to one of our newest board members, Jill Becker, a retired Anchor from WXIA TV. Jill shared with us:

Our son Matt was diagnosed with T-cell lymphoma at the age of 3. Our story has a happy ending. Matt is a healthy 24 year old looking forward to the rest of his life. I will never forget how incredibly kind and giving people were to our family when he was sick. That caring is the heart and mission of CURE, and that is why this organization has my heart and my commitment. I am honored to be part of CURE and to continue to share this love with these beautiful children and their families as we search for the cure that ends childhood cancer.”


March 23rd, 2012

CURE Introduces a New Staff Member

CURE Childhood Cancer is pleased to introduce our new Development Manager, Paula T. Collins. Paula joined the CURE team this month and will focus on the overall management of the stewardship of donors and database, from support for the Annual Campaign to external events and anything in between.

Paula is a native of Atlanta and brings a deep understanding of the overall functions of development and the importance of building and enhancing relationships with donors, prospects, and other constituent groups. Prior to joining CURE, Paula worked most recently for several non-profit independent schools in development, marketing communications, admissions, and database administration.

She is committed to excellence and integrity and will help CURE maximize fundraising opportunities. She believes in the mission and vision for CURE and hopes that her work will somehow positively impact the children who are fighting for their lives every day. In her spare time, Paula is usually cheering on her children at their sporting events. She also enjoys walking, gardening, and baking.

We are so pleased to welcome Paula to the CURE team and look forward to her work to assist in finding a cure for childhood cancer.


March 6th, 2012

Coming Full Circle

At CURE Childhood Cancer, one of the richest rewards is to watch a child beat the disease and move forward with his life. Such is the story with Tee Bridges, once a patient, now a survivor living a full life and serving the organization which served him more than 30 years ago.

As a teenager, Tee was diagnosed with non-Hodgkin’s lymphoma in 1981. His treatment protocol called for six weeks of intense radiation and chemotherapy followed by bi-monthly chemotherapy treatments for two years. He was fortunate enough to go into remission after the initial six weeks of treatment and never relapsed. In 1983, his treatment ended and he has been cancer free ever since. “I am one of the lucky survivors,” Tee says.

Because of Tee’s personal journey with childhood cancer, he considered entering the medical field. During the summer of 1986, Tee volunteered in the pediatric cancer research lab at Emory, working beside Dr. Harry Findley, a long-time CURE-supported scientist. Dr. Findley performed research in cancer biology and drug development, with a specific focus on childhood leukemia and neuroblastoma. His research was funded by CURE for more than 30 years up until he retired in 2008. Dr. Findley explains, “CURE played a major role in filling in gaps in our funding so we could keep our research going. Overall, CURE has had a very significant effect in promoting research and new treatments for childhood cancer, both at Emory and nationally through the sharing of research findings and data from clinical-trials.”

Tee worked in Dr. Findley’s lab at a very exciting time, when important discoveries were being made. Dr. Findley recalls, “We were testing retinoic acid (RA) as a possible inhibitor of acute myeloid leukemia (AML) cells, which we grew in the lab. Based on promising laboratory results with some types of AML, we later began a Pediatric Oncology Group-sponsored clinical trial of RA for relapsed AML. On the basis of this laboratory research and trial, RA was identified as an effective adjuvant therapy (i.e. addition to standard chemotherapy) for a particular type of AML known as acute promyelocytic leukemia.”

“Tee,” says Dr. Findley, “became very good at growing cells and assisting in setting-up cultures for testing. We were sorry to see him leave at the end of the summer! He was clearly motivated by a desire to help find new ways to treat leukemia.”

While Tee was a promising student in the lab, he ultimately decided not to enter the medical field. In the late 1980’s, Tee moved away from Atlanta to work in a family business. When asked about his memories of Dr. Findley, Tee says, “He is one of the many people with whom I was able to develop a friendship as a patient at Emory. Harry is one of those people who always has a kind word; I have never heard him speak ill of anyone. He is obviously an intelligent, respected and dedicated man.”

While Tee remained a CURE donor and attended reunions and other events, it wasn’t until 2008, when Tee and his family moved back to Atlanta, that he became more actively involved with CURE. Tee says, “I remember the volunteers who made the clinic a fun place. A kid remembers the adults who cared and made a scary day a little less scary.” Tee agreed to join CURE’s Board of directors in 2011 “because it is an opportunity to give back to an organization that has given so much to a deserving group of people.”


December 14th, 2011

Spotlight on Andrew Appert

We were a happy family of four with many reasons to be grateful. My husband and I often commented on how lucky and blessed we were to have two beautiful, healthy boys and very few worries. Life was good. But all that suddenly changed. Our descent into the nightmarish world of pediatric cancer officially began on August 21, 2001 when our then five-year-old son, Andrew, was diagnosed with acute lymphoblastic leukemia. From the moment our lives were drastically and irrevocably altered with the terrifying reality that our child had a life-threatening illness.

Several weeks before the diagnosis I knew something was wrong. Our once “healthy as a horse” little boy who never even seemed to catch a cold just wasn’t himself; he ran fevers, had severe stomach aches, was lethargic, and frequently complained of bone pain. I was in the pediatrician’s office often, desperate for answers but fearful of what we were going to find. I was repeatedly told Andrew had a virus which would run its course or growing pains which would subside. Then one night I was awakened by Andrew screaming from leg pain. My husband and I rushed him to the ER where blood tests showed severe anemia. We were sent home and told to follow up with the pediatrician in the morning. When we got home, Andrew took a turn for the worse. he spiked a fever, was nauseous, suffered from all-over body pain, and was unable to walk. As soon as the pediatrician’s office opened, I was there, delicately cradling Andrew in my arms because the slightest movement caused him pain. Again, we were sent home with instructions to return the next day.

During the night, Andrew continued to deteriorate. I remember lying in bed next to him and every time I moved to shift my body on the mattress, he would cry out in pain. The next morning back at the pediatrician’s office, a group of doctors gathered to discuss Andrew’s symptoms. I finally got up the nerve to insist that they tell me what they suspected was wrong with my son. I’m not sure why, but I specifically asked if he could have cancer. I supposed I asked about cancer because that was the worst case scenario I could think of, never really imagining I would be right. however, the doctors believed Andrew either had a bone infection or juvenile arthritis and wanted to order x-rays. At that point, Andrew was in severe pain, still unable to stand or walk, let alone lift his head. In addition, his heart rate and blood pressure were causing some concern. While holding his limp little body on my lap, I tried to gently adjust the blanket I had wrapped around him without causing him pain when I noticed little bruises on his arm and back. Instantly, I knew we needed to head to Scottish Rite Hospital.

Upon entering Scottish Rite’s ER, we were immediately escorted to an exam room. Andrew was so weak he didn’t even make a sound the entire time they poked, prodded, and stuck him with needles. Then a new doctor entered the room and began asking questions about Andrew’s health history. I immediately noticed the doctor’s name tag – not his name, but the title under his name: “Pediatric Oncologist.” All I could do was stare at those two words on his name tag like a neon sign was flashing in my face. Eventually the doctor, Dr. Bergsagel, broke the horrifying and shocking news that Andrew had leukemia – and in that instant our world came crashing in on us.

“Dr. B became Andrew’s oncologist and a God-send along with “Nurse Mary” and all the amazing and compassionate people at the Aflac Cancer Center at Scottish Rite. Andrew underwent three years and two months of chemotherapy and never once complained or felt sorry for himself. (I wish I could say the same about myself.) Just a couple of weeks after his diagnosis, Andrew began kindergarten; Dr. B urged us to send him to school to help maintain some sense of normalcy in his life. Once, a few months into his treatment, he had a seizure, a rare side effect from the high dose of intrathecal chemo. When I got to his school, Andrew was on the floor, still having a seizure, with a group of teachers and staff gathered around him in prayer, waiting for the paramedics to arrive. Overcome with feelings of helplessness and fear at the sight of my sick little boy, all I could do was fall to my knees and pray… and, of course, sob uncontrollably. During the ambulance ride, Andrew was not lucid. When he finally woke up in the hospital and we told him what had happened, he was disappointed that he didn’t remember the ambulance ride. After all, what little boy isn’t fascinated by ambulances?

As his parents, we struggled emotionally through three terrifying  years of clinic visits for chemo, spinal taps, and various medical procedures in addition to the difficulty of managing side effects. Sometimes the overwhelming worry and fear, combined with the never-ending roller-coaster of mixed emotions, seemed debilitating, but Andrew always handled everything with astonishing courage and grace and an uncanny steadfast faith that inspired all of us. He actually looked forward to going to his chemo appointments because he loved the people at the clinic and understood everyone was working to make him well. He pushed through the treatments and side effects with a positive attitude and focused on just being a happy kid who loved soccer, video games, Legos, and books. Less than a year into his treatment, Andrew came up with the idea to help brighten the day of other clinic patients by collecting donated toys from our community. To this day, Andrew maintains his charity, called “Friends of Andrew”, to help bring new toys to the kids at the Aflac Cancer Center.

Andrew is now a healthy 15-year-old excited about starting high school and learning to drive. I often look at him and think about what he has been through and what he has taught our family. While I wouldn’t wish our experience on my worst enemy, I am grateful for the many blessings and positive experiences that came out of it. We have adjusted our lives to make family our number one priority; we have grown tremendously in our faith and continue our life-long faith journey with a sense of gratitude to God; we have gained an appreciation for the power of prayer; and we have experienced first-hand the positive impact of a loving and supportive community where even the smallest act of kindness can make a difference. We will never forget the support of the doctors, nurses, and staff at Scottish Rite, The Lighthouse Retreat, Camp Sunshine, Make-A-Wish Foundation, CURE Childhood Cancer, and the many people (friends, family, and strangers alike) who helped us over the years. But we realize that the fight is not over. We continue to pray for every child and family impacted by cancer, and we hope to bring awareness to pediatric cancer causes until a cure is found and this devastating disease is a thing of the past.


November 28th, 2011

Connor’s Story

We recently released CURE Childhood Cancer’s 2010-2011 Annual Report and have received amazing feedback from many members of the community. (To read the Annual Report, please click here.) One of the things we were most excited to share are the stories of some of CURE’s children. Today we would like to highlight the courageous story of Connor Landis.

You’d have to be exceptional to be chosen. Whatever we believe, we can believe that. Connor, the blue-eyed girl with the indomitable spirit, was easily exceptional. She touched everyone.

Then, life dealt its bewildering blow. November 2007, young, invigorating Connor was diagnosed with medulloblastoma, brain cancer. She was nearly 11 years old and soaring. The Landis family, dad Mark, mom Cindy and older sister Brittany from St. Simons Island, Georgia, was struck blindsided. But then they were heartened by Connor’s undefeatable spirit. Connor never met a soccer game she couldn’t win … or a soul she couldn’t win over.

The battle began. First, ten weekly Angel Flights from St. Simons Island to Atlanta for chemotherapy. The treatments were intense. Seizures were continuous. Connor faced each wracking onslaught without complaining. Determined she would go back to school, go to the Junior Cotillion, to the Science Fair field trip. She had a life to get on with.

Before the next round of chemotherapy ever began, doctors discovered Connor’s brain tumor was growing. Leading pediatric oncologists in Atlanta and around the country concluded surgery was critical. The first surgery revealed Connor’s tumor was not medulloblastoma but rather a Glioblastoma stage IV — the most malignant of all brain tumors. The odds were clearly, painfully not good.

But this was Connor, of the firecracker spirit and conquering attitude. Connor, who coined the phrase at age 5, her face planted in a frozen mountain snow bank — “It’s all about the attitude.”

After 29 surgeries and body and mind splitting pain, Connor’s incredibly positive attitude would still force a thumbs up. The nurses fought over who would care for her in the recovery room.

Early in their hospital journey, the Landis family met the people from CU RE. “They were our hospital family, providing guidance, prayers, hugs and weekly dinners over our half a year stay,” recalls Cindy Landis.

Connor left this world, in June 2009. The journey to heaven was lamentably long and slow. Connor’s family had built a resolve but were torn with grief and sought help from counselors. “The greatest help came from fellow sufferers — the other families we shared the pain with at CURE’s Bereavement Weekend,” says Cindy Landis. “It was revolutionary for us.”

Connor had to leave this life to be healed. If she was chosen to exhort us to erase such a sacrifice as hers in our lifetime, she was a good choice. Make that an exceptional choice.

She’ll be that curious, blue-eyed angel with wings. A thumbs up. Whispering her challenge — It’s all about the attitude.


November 14th, 2011

Affinity Bank Supports CURE

CURE Childhood Cancer is fortunate to receive support from many individuals, companies and organizations. Over the past few months, Affinity Bank has offered some truly amazing support.

In August 2011, Affinity Bank’s President, Ed Cooney, joined CURE’s Board of Directors. Ed had learned about CURE from a client, did some research about our organization and was impressed by what he learned. He was also personally moved by the stories of CURE’s children. Although Ed had no personal connection with childhood cancer, he knew he wanted to get involved.

Not only has Ed joined CURE’s Board of Directors, but Affinity Bank has generously sponsored several events benefiting CURE. At the Affinity Bank Dental Client Appreciation Golf Outing, participants made a charitable donation to CURE. Affinity Bank also sponsored Open Arms, a program in which an individual or company provides a meal for children fighting cancer and their families at Children’s Healthcare of Atlanta. Not only does this get the families away from hospital food, but it is also a wonderful opportunity for patients and families to speak to our CURE volunteers, many of whom have been personally affected by childhood cancer.


Additionally, Affinity Bank organized Smiles for CURE, a toothbrush drive to support CURE’s program which supplies families with toiletries for unexpected overnight hospital stays. For the month of October, dental offices and individuals from the community brought toothbrushes in to the bank. Donations are still rolling in well into November!

Currently, Affinity Bank is hosting a Facebook fundraiser for CURE. Simply go to Affinity Bank’s Facebook Page and click “Like.” For each “Like” Affinity Bank receives, the bank will donate $1 to CURE! This is a very easy way for everyone from the CURE community to support us.

Thank you, Affinity Bank, for all of the amazing fundraising efforts and support. Because of organizations like yours, we are one step closer to finding a cure for childhood cancer.


November 11th, 2011

Madison’s Story

We recently released CURE Childhood Cancer’s 2010-2011 Annual Report and have received amazing feedback from many members of the community. (To read the Annual Report, please click here.) One of the things we were most excited to share are the stories of some of CURE’s children. Today we would like to highlight the courageous story of Madison Winn.

At age 15 and sophomores in high school, kids are on the launching pad of life. Every day is a blast off into activities, surprises, growth, accomplishments and confidence. Life was soaring for Madison Winn.

And then it froze. She was in 10th grade at Wesleyan School in August 2007 when severe headaches, nausea and strangely rapid eye movement sent Madison to the emergency room. A CT scan discovered a mass, and Madison was diagnosed with a malignant brain tumor called medulloblastoma.


This vibrant young girl and her family braced for the onslaught of critical medical procedures. The first was craniotomy surgery to remove the large tumor — an eight hour surgery. The tumor was so aggressive that Madison was put into a high risk category. High hopes were difficult to muster. But something happens to a family fighting childhood cancer. Family members stiffen into a steel resolve. As did Madison’s mom and dad, Susan and Phil, older brother Connor and younger sister Kenzie. They held together like armor.

The fight continued. And unfairly, harshly uphill. High dose radiation to the brain and spine. Months and months of debilitating chemotherapy. A second craniotomy. Another year of oral chemotherapy. Feeding tubes for 15 months.

Another door opened to another hell. Madison underwent esophageal surgeries, eye surgeries, had shingles and neutropenia. She needed 40 blood transfusions and 10 platelet transfusions, and she suffered numerous strep and staph infections, which can be deadly for someone without an immune system. Treatments, complications and infections kept Madison confined to a hospital room for more than 220 days. And out of school for an entire year. No cheerleading, prom, driver’s license, parties or anything else which is teenage splendor.

Cancer did its malevolent best to steal everything. But Madison’s spirit would not be stolen. Her war cry became, “I may have cancer but cancer doesn’t have me.”

Susan Winn, Madison’s mom, relates, “We were stumbling through our fog after Madison’s diagnosis when we met CURE Childhood Cancer. Volunteers and staff members met, hugged and cried with us, offered any kind of assistance and brought information and stories of hope about childhood cancer. We held on tight to those stories. As a family, we are compelled to help other families going through this disease — with information, inspiration and hope. It’s a power we know they need.”

Madison Winn has since attended Lambert High School, first in a wheelchair, then a walker. She graduated in June 2011. But not before being crowned as the new school’s first homecoming queen, inspiring so many students with her strength and grace. And indomitable spirit.

Madison’s teenage splendor was interrupted. But, like her story, not lost.


October 21st, 2011

Companies that Care – Lynn Crow Photography

Here at CURE Childhood Cancer, we are fortunate enough to work with many companies who are as passionate about finding a cure as we are. To show their support, these companies give back in a variety of ways. We would like to take a moment to highlight one of the Companies that Care – Lynn Crow Photography.

If you have received any of CURE’s recent promotional materials, you have seen Lynn Crow’s work. Donning CURE t-shirts and photographed against a white background, Lynn did an amazing job capturing the spirit of CURE’s children.

We asked Lynn why she decided to give back to CURE:

“I first became involved in CURE after my client and friend Ginger Kindred went through so much with her son Trenton when he was just one years old. I felt a special bond with Trenton because he and I had the same birthday and I had photographed him a couple of times before his diagnosis. I met Kristin and also heard her story. You cannot help but be moved by the stories that have happy endings and especially the stories that have sad endings. I have been a photographer for about 16 years but my original career was nursing for 18 years. I worked Pediatrics for many years and have always loved kids so much. My first patient tragedy was in 1980 my first year of nursing. This rough and tumble boy named Dale Dalton came in for evaluation because he was having persistent leg pain. Turns out it was Ewing’s Sarcoma. He died on Christmas Day. I keep a picture that he gave me on my refrigerator and still think of him and pray for him and his family. That was 31 years ago. If I can still cry over him, what must his family feel. WE Need to Get Rid of Cancer in Children. Here is a quote which I find especially moving:

“Many things can wait; the child cannot. Now is the time his bones are being formed, his mind is being developed. To him we cannot say tomorrow; his name is today.” -Gabriela Mistral

I wanted to give back because I have been blessed with two healthy children. I am so lucky to be able to give in the way that I love the best – taking pictures! I have photographed the Quiet Heroes Luncheon now for three years and have loved meeting these amazing women! I stand in awe of their quiet grace. I also have photographed Lauren’s Run now for three years and that is my favorite. To be outside on a beautiful sunny day in May, surrounded by laughter and face-painted, jumping, dancing and swirling kids is such a joy to me. To be able to capture a moment that expresses the happiness and fun of the day!”

Thank you, Lynn Crow, for all of the time you have dedicated to CURE. We love working with you and appreciate everything that you have done to give back.

 


  •  

    Screen Shot 2013-05-06 at 4.25.29 PM

    Nacho Average Taco

    For May and June, order the CURE taco at Red Pepper Taqueria and $1 will be donated to CURE. The taco features chargrilled calamari, crispy eggplant, tomato, onion, sorrel, and ginger pico.


  • Screen Shot 2013-05-14 at 2.49.59 PM

    Home by Dark - Singer/Songwriter Show

    Saturday June 1st at 8PM at Chukkar Farm in Alpharetta, GA. A portion of the proceeds will benefit CURE. Bring your own chairs and picnic for this beautiful outdoor music event. Click here to learn more.