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Coffee Served with a Purpose

There’s a new coffee shop in town – but it isn’t like the ones you know. Of course it will have strong coffee, pastries, and plenty of hand-crafted, decadent beverages more worthy of a desert plate than a ceramic mug. But the concept of this coffeehouse centers more around community than caffeine. It’s an idea that germinated in the owner’s mind during a yoga session and it is soon to spring to life.

Jalynn Barr is a young lady passionate about her family, her community, her work, and causes that help other people. The cause that motivates her the most is childhood cancer. She serves on the Young Professional Leadership Council for CURE Childhood Cancer and has been a driving force in bringing others into the fight for children with cancer.

“As a mother, I can’t imagine having one of my daughters in treatment,” Jalynn explained. “When I found out how little money goes to childhood cancer research, I knew I had to get involved.”

Jalynn has been in the foodservice business her entire career and loves dealing with people. About a year ago, she started feeling an itch to get out on her own. While in a 40-day yoga challenge, a question kept coming to mind, “Is there a way I can make a career out of something I love that also benefits this group that I’m so passionate about?”

It was then that the idea for Community Cup was born. The location she chose is just off the square in downtown Cumming, where there is plenty of both driving and foot traffic. The menu will be strong on coffee, but will also serve fun things for children such as drinks with edible glitter and other items designed to create a family atmosphere.

The goal is to use her talents and passions to be a positive force in the community. By buying the baked goods from a local bakery and the coffee from a nearby roaster, Community Cup will pour first into its neighbors. But it will also weave itself into the fabric of the city by working with local schools, non-profits, and civic groups to help them raise funds for their efforts. And a portion of the shop’s daily proceeds will be given back to CURE to benefit those children with cancer that Jalynn loves so much.

“I really think we have a chance to make a huge difference,” she said excitedly. “First in Cumming, but through our partnership with CURE, all over.”

Permitted to dream, Jalynn wouldn’t turn down the chance to have a Community Cup on every street corner in the country. But her true goals are much more grounded: operate a successful business, spend quality time with her family, be happy in her work, and make a positive impact on her community. If she can stay centered on those things, she’ll count it worthwhile.

Community Cup hopes to serve its first customers in late March.

There is another event in late March that Jalynn is excited about. The YPLC is hosting the 2nd annual Spring Fever event and you’re invited. On March 23 at the Stave Room at American Spirit Works, you can enjoy live music from local favorite Crane, delicious food, and hand-crafted cocktails for just $75 with the proceeds benefiting CURE. Last year sold out early, so get your tickets today!

 

 

 

 

“Something that Shouldn’t be There”

In the summer of 2015, three-year-old Ava began complaining of lower back pain. After being sent home from daycare on several occasions and multiple inconclusive trips to the pediatrician, Ava’s mother, Julie knew that something had to be wrong. One Sunday after Ava began crying and complaining about her back, Julie took her to the emergency room. An ultrasound immediately revealed what the technician said was, “something that shouldn’t be there.”

That something turned out to be a tumor the size of a man’s fist on Ava’s right adrenal gland. After waiting anxiously for several days for biopsy results, the doctor came back with a diagnosis of stage three, high-risk neuroblastoma.

“I fell apart,” Julie recalls. “The idea of cancer never entered my mind. I always thought of cancer as something that old people get, not kids.”

Ava’s treatment plan was overwhelming: chemotherapy to shrink the tumor followed by surgery to remove the remainder of the tumor along with the adrenal gland to which it was attached. This was to be followed by more chemotherapy, two stem cell transplants, radiation, and finally, immunotherapy.

“We were so thankful that the tumor responded to the chemo and the doctors were able to remove it before it invaded any of Ava’s other organs,” Julie said.

Ava lost her hair and became thin but never really minded being bald. Her mother says that Ava took everything in stride and always had a good attitude. She remembers the stem cell transplants as the worst part of the treatment.

“Ava was so sick each time and the room would start to feel like a prison,” she said.

Ava completed her treatment in October 2016. Now five years old, she will start kindergarten in the fall. She gets scans regularly and is enrolled in a clinical trial designed to prevent relapse.

“Ava will never truly be free from cancer,” Julie says. “The treatment they gave her to kill the neuroblastoma has affected her teeth and could have affected her body in many other ways that we won’t know about until she gets older.”

But for now, Ava gets to be a kid again and return to her favorite pursuits: singing, dancing, and all things creative. She plans on becoming a ballerina when she grows up. Through this experience, her family has learned just how precious life is.

“We are so fortunate,” Julie says. “We saw other parents lose their children to this disease. We have always enjoyed spending time together as a family, but cancer showed us how fragile life is and now we make each moment count because of it.”

 

 

Cooking Along

There aren’t many eleven-year-old boys who love to watch cooking shows and help mom when she cooks. Fewer still could recognize celebrity chef, Gordon Ramsay. But Adeshino (Kaleb) isn’t your typical boy, and after what he’s been through, he can watch whatever he would like.

At the tender age of five, Kaleb began experiencing back pain. His mother, Adeyinka, remembers taking him to the doctor several times over the next year.

“The pain wasn’t normal, and the doctor found trace amounts of blood in his urine a few times,” she said. “He wasn’t worried, though. He just thought Kaleb had a urinary tract infection and treated him with antibiotics.”

But as Kaleb got older, his symptoms persisted until finally Adeyinka took Kaleb to the emergency room where an ultrasound was performed. Before she got home, she received a call telling her to turn around and come back to the hospital. It was there doctors told her that seven-year-old Kaleb had cancer.

Desmoplastic Small Round Cell Tumor (DSRCT) is an aggressive and rare cancer which primarily occurs as a mass in the abdomen. Kaleb’s tumor was attached to one of his kidneys. The first step was to remove the tumor and along with it, his kidney. The surgery was followed by a year of chemotherapy which caused a dramatic transformation in Kaleb.

“It took a long time to figure out how to keep him eating. He was so sick that his weight got below fifty pounds,” Adeyinka explained. “One scary night, he was barely responsive and couldn’t walk, so I took him to the clinic. I had to carry him to the car, and I had to wheel him into the hospital in a wagon. In the room, they gave him fluids and revived him. I thought I was going to lose him.”

Once he began eating and gaining weight, Kaleb finished chemo and moved on to radiation until his treatment for DSRCT was finished. But cancer wasn’t through with him yet. Doctors had warned Adeyinka there was a five percent chance he could get leukemia from his original treatment. Then, a follow-up scan revealed something on his lung. Although the likelihood of leukemia was slim, Adeyinka’s worst fears came true.  Adeyinka had Acute Myeloid Leukemia (AML), an aggressive form of leukemia, possibly a result of the chemo and radiation administered to save his life. Unfortunately, secondary cancers are not uncommon side effects of today’s treatments for childhood cancer.

Kaleb started treatment for AML in June of 2016 and had a bone marrow transplant in September. Once again, he lost weight and was forced to deal with mouth sores and other painful side effects. But he quickly went in to remission and now only has to have his blood levels monitored.

“He has good days and bad days,” his mother said. “He has had some digestive issues and leg pain that we are dealing with. I wish our story was different, but these are the cards we were dealt.”

Kaleb missed two years of school due to his treatment. But with a little hard work he will move to fifth grade next year. He enjoys video games, The Walking Dead, Ellen, and shows about criminal investigations. Kaleb is active, but he has to be cautious because of everything his body has been through. Of course, that doesn’t keep him from whipping up a mean stack of blueberry pancakes. And he isn’t afraid of Gordon Ramsay, either. After all, he beat cancer twice and has been cooking along ever since.

The Incurable Curse

by Kyle Klerk

 

Kyle knows all about living with what he calls, “The Incurable Curse.” A childhood cancer survivor, Kyle is in the sixth grade and wrote this piece as an essay assignment. His work earned first place in his school and is an illuminating look into what today’s cancer treatment looks like from a child’s perspective.

 

Slowly sneaking, creeping through you, silent, deadly, changing, transforming cells multiplying, and growing at an alarming rate, all happening inside, the conflict begins without a clue, without your knowing.

All of a sudden, one day, one moment in time everything changes, the words are spoken in quiet tones  but it seems like a shout to my ears, it becomes life impacting, extracting your freedom, strong bonds tying you to your bed, holding you down,chaining you to a metal pole of poison.

Mysterious figures, clothed and protected in suits of plastic, gloves of rubber, hanging bags of neon liquid dread, connecting you by a tube, poison dripping through a needle into your veins, controlling all you do, imprisoned, ruled by time and beeps.

What choice do I have? Lay my head down? Give up?  Never! Into the fray, fighting for what seems impossible! The Curse has struck; nausea and pain are my constant companions, the toxic medicine drains my energy, keeps me isolated, leaving my body open to other attacks.

They keep me here in this place to make me better, to give me life, though I’ve realized the struggle will never truly end, it has begun a lifetime of torture, mental and physical, an eternity of fighting, struggling against the effects of the supposed cure, grasping for life, for one more day as a regular kid.

Constantly receiving summons to appear before the medical tribunal, always more radiation, more tests and needles, more blood loss, I never will be the same, always wondering, pondering, what will the verdict be? Will this keep Incurable Curse of Cancer Away? Will another rival come to takes its place?

 

I am one of the Warriors, there are more of us than you can imagine! Why us? No one knows the answer. We are knights putting on our armor, bald heads going to war, strength and courage found in the smile on our faces, never letting the enemy steal the light of joy in our eyes, our war cry a laugh in the face of fear.

Many Allies have succumbed to this curse, lives fall every day, my heart aches with agony, I miss them terribly, but deep inside is the knowledge that others are also in the battle, experts, armies, continuing to work for a solution, a permanent antidote, waving the banner high, a golden ribbon, and I have hope, Hope that a true Cure for Childhood Cancer is within reach!

 

 

 

CURE-funded study removes a major stumbling block to stem cell transplants

Children with certain types of cancer receive bone marrow transplants as part of their life-saving treatment. Bone marrow transplants carry many risks and can be wrought with complications. The most serious risk and leading cause of mortality is acute graft versus host disease (GvHD). GvHD can be a deadly complication and unfortunately, it is very common. About half of all bone marrow transplant patients develop this complication, which occurs when the newly transplanted materials, or graft cells, form pathogenic Tcells which attack the recipient’s body.

In 2010, Dr. Leslie Kean, then the Director of Bone Marrow Transplantation at Children’s Healthcare of Atlanta, launched a phase 1 clinical trial to test a new agent called Abatacept. She believed that in order to prevent GvHD, Tcells need to be treated and changed so they do not attack the recipient’s body. Dr. Kean theorized that Abatacept would decrease the risk of acute GvHD while not increasing the risk of infection. CURE agreed to the merit of the trial and funded the phase 1 study.

“The money from CURE is absolutely essential to preventing and treating GvHD,” said Kean.

Because of CURE ’s grant, Kean was able to test her research on humans for the very first time. For Kean, who started this research ten years ago, it was rewarding “to watch an idea blossom into something greater that can help thousands of children.”

The phase 1 Abatacept clinical trial began with five leukemia patients, all over the age of twelve and in need of a bone marrow transplant. Patients received the drug during the transplant, after which Kean and her team ran tests to determine the effectiveness of Abatacept in preventing acute GvHD.

The data was so promising that Dr. Kean continued with a larger, phase 2 clinical trial. When the drug was used in addition to standard GvHD treatment, it reduced the occurrence of acute GvHD from 32 to 3 percent. The group who received Abatacept alongside their normal treatment experienced increased survival and recovery.

The results from this Phase 2 study are so promising that Dr. Kean is working with the company that makes the drug, Bristol Myers Squibb, to file a “breakthrough therapy” application with the FDA. The breakthrough designation seeks to expedite the review and approval process for promising drugs, allowing them to get to the bedside quicker.

Dr. Kean explains, “As a transplant physician, it’s beyond heartbreaking to witness a patient develop severe acute graft-versus-host disease after having their leukemia cured through bone marrow transplant. To have a therapy at our disposal that safely targets just the Tcells causing graft-versus-host disease represents a major step forward in stem cell transplantation. It not only offers new hope that we can prevent graft-versus-host disease upfront, but that we can also significantly improve outcomes for patients requiring high-risk transplants.”

 

 

Source: https://futurism.com/immunotherapy-drug-proven-successful-against-serious-stem-cell-transplant-complication/

 

 

 

CURE donors gave Hope for the Holidays

As we look back over the holidays, our hearts are full. You did so much to ease the burden of families fighting childhood cancer. It is with great pride that we share how you supported so many children and families with your generous giving.

Through CURE’s Holiday Angels program, you provided holiday gifts to 115 families who are not only battling childhood cancer in a medical fight, they are squared up against it financially as well. That means more than 300 children received gifts and special holiday meals who may not have otherwise had much holiday joy. Parents were overwhelmed by the toys, bikes, games, and baby dolls we loaded into their cars, sometimes shedding tears and almost always giving hugs.

 

Here are just two notes of thanks we received:

I just wanted to say a HUGE thank you to you and the family that helped make this year’s Christmas so special. The kids are going to be thrilled when they see those presents under the tree. We couldn’t be more humbled by the generosity of CURE. I’m sure so many other families will feel extra blessed as we did this Christmas.”

 

I am very grateful for all the Christmas gifts. It was so much and not expected. CURE has made this Christmas so wonderful and not so stressful financially.”

 

 

With your help, we were able to treat 130 families to incredible holiday parties in Atlanta and Savannah, providing a festive break from the worries of treatment. From gingerbread houses, crafts, and special snacks to a visit with Santa, children had an incredible afternoon.

You also provided food for more than 1000 hospitalized patients, family members, and staff throughout the month of December through our Open Arms Meal Program. Additionally, thanks to Church’s Chicken, we served special holiday meals to approximately 75 hospitalized children and family members on Christmas Eve.

 

And you gave. We are thankful for every gift – whether big or small – because each one tells us that you believe in what we are doing for children.

We truly appreciate your holiday spirit and all that you allowed us to do for these incredible children and their families devastated by a childhood cancer diagnosis. Without your support, many would be fighting alone. But together, we are making a difference – not just in December, but all year long.

 

 

Inspiration from Kristin Connor

Dear friends,

Inspired. Almost every day I learn something or hear something or see something that just leaves me feeling inspired. I’m going to wear out that word, I use it so often. But I can’t think of any other way to describe the emotions I constantly feel.

Serving as the Executive Director of CURE Childhood Cancer is such an incredible privilege. Every day I meet people who leave me feeling completely inspired. Sometimes it’s a patient like Ansley, featured in our Spotlight article, who maintains faith and resolve in the face of a relentless disease, or a parent who writes Caringbridge updates that leave me staring at my computer screen wondering where the wisdom and perspective come from. Or it’s a nurse who has devoted 19 years to expertly caring for and loving cancer’s youngest patients – or a board member who so loves serving CURE that he can’t wait for the next meeting, despite his demanding “real job.” Sometimes the inspiration is in a volunteer who spends hours in our office each month sorting and labeling and keeping us organized because she knows that will enable us to spend more of our time serving families, or it’s in a CURE staff member who is fueled to do whatever is needed by genuine passion for the mission and purpose of the organization.

Sometimes the inspiration is a team of doctors who, with brilliance and compassion, are working to find better, more effective ways to treat children with cancer. Are you familiar with precision medicine? This is an emerging approach for disease treatment that takes into account the individual variability in the genes of each patient. We believe precision medicine offers tremendous hope for more effectively treating childhood cancer, and we are investing significant resources – $4.5 million – in ensuring children have this available to them. With our funds, the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta is launching the Aflac Cancer Center Precision Medicine Program. We believe this will be a game changer for hundreds and eventually thousands of children with cancer across the nation as knowledge is developed and individualized, non-toxic, curative treatments are developed.

As I write this letter, it happens to be the 16th anniversary of the day my son was diagnosed with cancer. Thankfully, today he is a healthy and active teenager. But in the years since his diagnosis, it has been my strong desire to make some kind of difference in the fight against childhood cancer. CURE has been doing that with research support in the tens of millions of dollars. That research has been important and impactful.

But my level of inspiration has reached new heights with the decision to fully fund a new Precision Medicine program. In doing so, we are bringing new treatment possibilities to so many kids with otherwise dismal prognosis. This is hope! And while it will take time to reach its full potential, the first and biggest step has been taken. Precision medicine will be a reality at the Aflac Cancer Center because of CURE and the incredible team of doctors doing the hard and highly complex work.

Thank you for letting me share my inspiration. I hope you will be inspired to join our efforts.

Warmly,

Kristin

 

Fertility and Family Building after Childhood Cancer

They have fought the cancer battle and won! It was long and hard but not always over when treatment ends.  For some survivors, medical problems develop as a consequence to cancer therapy. These medical problems are known as late effects of cancer therapy. When young adult survivors of childhood cancer are asked about their health concerns for their future, not being able to have children is often mentioned as one of their top three worries. Infertility is usually defined as not being able to become pregnant or father a child after trying for 12 months. Infertility can happen in 1 in 5 females and over half of the males treated for cancer during childhood or adolescence.

Some teenage cancer patients can freeze their sperm or eggs before starting cancer treatment in order to preserve their fertility. However, these options are not available to all patients. Many factors, including how sick the patient is at diagnosis and how long cancer therapy can be delayed, determine if eggs or sperm can be frozen before treatment begins. The frozen sperm or eggs can be used 10-20 years later through in vitro fertilization (IVF). Currently only adolescent males and females who have gone through puberty have these options. For males, this involves sperm banking. For girls, the ovaries have to be stimulated over two to three weeks, and then oocytes (eggs) are harvested and frozen. It is important to realize that not all cancer patients are at risk for infertility since not all cancer treatments damage the ovaries or testes. Certain chemotherapies (alkylator agents and heavy metals), exposure of the ovaries or testes to radiation and certain surgeries can place patients at risk for infertility. The amount of damage to the ovaries and testes can be checked in survivor clinic.

Many survivors are unsure if they are at risk for infertility after cancer treatment. The survivor healthcare plan survivors receive at survivor clinic will indicate if a survivor is at risk for infertility based on the cancer treatments received. Young adult survivors at risk for ovarian or testicular damage are offered an infertility risk assessment visit with the endocrinologist when they are 18 years old. During this visit, the endocrinologist will explain the specific level of risk (low, moderate or high) for infertility and will evaluate ovarian or testicular function. Additional specialized clinic visits and/or tests for infertility may be offered.

On February 24, 2018 the Aflac Cancer Survivor Program of Children’s Healthcare of Atlanta will host a Beyond the Cure conference for survivors and their families focused on Family Building. The title for the conference is Kids after Cancer: Fertility and Family Building. Doctors, endocrinologists, psychologists and fertility specialists such as reproductive endocrinologist/gynecologists and urologists will present. Small breakout sessions will take place where survivors and family members can ask questions about fertility and family building options after cancer. For more information and/or to register, visit choa.org/beyondthecure.

 

 

 

What Hope Looks Like to Me

Coasting through life as a parent attending PTA meetings, football games, and baseball games, I could never have imaged that my world would be turned upside down in a matter of twenty-four hours. Up until that point, my beautiful, athletic son had never been ill or even been to the doctor for any reason other than a routine exam. But while on the field stretching for a baseball game, he felt a pop in his groin area. An ultrasound told us that Tre had a groin strain. We thought we were headed home until doctors sent us to Children’s Healthcare of Atlanta because his blood pressure was high.

Upon entering the hospital at almost midnight, we were taken to a room on the 6th floor. Question after question entered my mind. After having another ultrasound that night we were given the worst news any parent could imagine: Tre had a mass. From there our world continued to deteriorate as Tre’s groin strain turned into Stage 4 Rhabdomyosarcoma of the prostate gland. The tumor was LARGE and the cancer was everywhere. It had started in the prostate gland but tests revealed it was in his spine, his left hip, his bone marrow, lymph nodes, lungs and wrapped around both his kidneys and bladder. As a pediatric nurse for seventeen years, I knew we were in trouble.

I have never been a person to lose hope, and I will never lose hope as it pertains to my children. But this was something I had never experienced. I watched helplessly as my son battled blood pressure readings that were in the 190’s. I watched helplessly as my outgoing son went into a shell – worried if he was going to die. I watched helplessly as my son was wheeled back to surgery. My son came back to me in pain, emotionally broken and scared. My life was shattered, my son’s life was shattered and our family was shattered. We were hurting, confuse, and broken. Every time Tre took a breath I was right there. We did not know how any of us were going to survive this.

And then I was invited to A Tribute to our Quiet Heroes. Needless to say, I was very conflicted over whether to attend the event at all. Attending the event meant I would actually have to admit that I am part of a club that I never asked to be in and never wanted to join. It would mean I am the mother of a child with cancer.

Against my better judgment I attended the event. I cried, I laughed, I felt sorry for myself and for my beautiful son. Then I felt encouraged. There before me was a room full of ladies who were smiling, laughing, and living life despite the fact that their child is sick, in remission, or has passed. I can barely put one foot in front of the other to walk, but here they are living and breathing. This event, although difficult, was another step to help me deal with the horrible hand we’ve been dealt.

Here we are three months after the diagnosis and we are living. We are smiling. Tre is going to school with two catheters still in him. We are grateful. We are blessed. We are hopeful.

So when I am asked what hope looks like to me, I can smile through the tears and say: hope looks like a struggle at first but then looks like battles won. Hope allows you to cry, laugh, and feel sorry for yourself. But then hope is what gives you strength and courage. Hope heals you and that is where my family is right now. We are healing, dealing, and hopeful.

 

Written by Tamia Perkins, mother to childhood cancer warrior, Tre.

 

For more information about Quiet Heroes, please visit QuietHeroes.org

 

 

 

A Surprising Hope

A twenty-first birthday can be cause for a grand celebration. It is one of the last rights of passage into adulthood, and most young people will spend the occasion out on the town with friends. But Ansley Cochran isn’t like most people.

At a diminutive four foot, nine inches, most wouldn’t guess her age correctly anyway. They also wouldn’t guess that she has been fighting cancer for nineteen of those twenty-one years. Take a moment to consider that – a nineteen-year fight. At the tender age of two, Ansley was splashing in the tub when her parents discovered a lump on her neck. After a few visits to the doctor, Ansley was sent to the hospital where she was diagnosed with neuroblastoma.

Since that time, her life has centered around hospitals. She has had multiple rounds of chemotherapy, her lifetime maximum of radiation, several surgeries, and even MIBG therapy during which she was infused with targeted radioactive compounds to try to destroy her tumors. Despite all of this, her cancer keeps coming back. Every time she reaches a cancer-free status, scans soon find new evidence of tumor growth. Currently, her cancer is stable and not spreading. But it isn’t gone. In fact, her cancer is currently on the back-burner as she tries to deal with the damage her so-called treatment has wrought.

Ansley suffers from chronic pain, exhaustion, lack of energy, and esophageal webbing which makes eating very difficult. She has been forced to quit both college and work because the rigors of her treatment and its side effects make it impossible to keep a routine schedule.

With all of that in mind, it would be easy to imagine that Ansley is bitter or angry about the cards she’s been dealt. But that couldn’t be further from the truth. Ansley is the very picture of hope. She radiates positivity despite her circumstances and constantly looks for ways to lift others up. This desire to help others brought Ansley to CURE Childhood Cancer.

CURE has been a part of Ansley and her family’s life since the beginning. So rather than have a birthday part, Ansley decided to donate her birthday to CURE through a Facebook fundraiser. This is the message she started with:

“I am one of the many faces of pediatric cancer (even though I’m no longer a child) so I know how little funding is put towards researching to find a cure for this disease that kills 1 in 5 of children diagnosed. For my 21st Birthday, I’m asking you to please donate anything you can to help support the cause and help me raise money to give kids just like me the chance to stop daydreaming from hospital rooms and let them actually go out and live their dreams!”

She started with a goal of raising $200 but within fifteen minutes, she had hit $420, prompting her to raise the goal to $1000. Donations hurdled that number almost immediately.

Throughout her life, Ansley has been surrounded by a family of faith and good friends. She loves the small-town feel of Dallas, Georgia and credits her community with always being there for her.

“This town is family,” she said. “When someone is in need, everyone steps up.”

With all of this support, she realistically believed her fundraiser could get to $1500. Even Ansley was surprised when it crossed $3000. She was ecstatic to be able to give back in such a big way.

Over the past few years, Ansley has taken up the pen to journal and blog as an outlet. All of her writing is thoughtful, positive, and more upbeat that you would expect from a young lady in her shoes. In the future, she hopes to extend her reach with a message of hope.

When asked what keeps her going, Ansley simply replied, “My answer to your question is God. He is what keeps me full of hope and motivates me to live everyday like it’s my last.”