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Taylor was a cancer patient and now, she is studying to be a pediatric oncology nurse.

Taylor, a 21-year-old University of North Alabama student, is studying to become a pediatric oncology nurse. Although she’s only in her first year of nursing courses, Taylor knows exactly what nurses can mean to their patients. Taylor was once a cancer patient herself, relying on the nurses as a support system. 

“The nurses helped me. They were my family away from home,” says Taylor, who plans to help children battling childhood cancer in the same way she was helped. 

Her Cancer Journey
In 2006, Taylor was an active 11-year-old, swimming daily during the summer on her local swim team. She complained about soreness in her right arm, but she and her parents assumed it was from swimming.

When school started in September, the pain became so bad that Taylor was taken to the local bone and joint clinic. After an x-ray, the doctor sent them to Children’s of Birmingham but didn’t say why. Shortly after Labor Day in 2006, Taylor’s mom Tammy received a phone call: Taylor had osteosarcoma. It is the most common type of childhood bone cancer, but is more common in boys than in girls. 

Taylor started treatment right away which included chemotherapy, reconstructive surgery on the upper part of her right arm, a donor graft, metal plates and pins. When chemotherapy was complete in June 2007, Taylor was cancer-free. 

Desperate for a Cure
Taylor was cancer-free for 18 months until doctors found tumors in her lungs, which is typical of an osteosarcoma relapse. She would cycle through treatment – chemotherapy and a thoracotomy to remove the tumors in her lungs, over and over again--briefly being cancer-free and then relapsing twice more in 2010 and 2011.

During Taylor’s last relapse in 2011, she was receiving treatment from MD Anderson in Houston, over 700 miles away from her home in Alabama. Desperate for a cure, she was referred a trial at Texas Children’s Hospital in Houston, which was supported in part through an Alex’s Lemonade Stand Foundation Infrastructure grant. 

HEROS Trial 
Dr. Nabil Ahmed (ALSF Young Investigator 2007 & Innovation grant 2013 recipient) was Taylor’s doctor during the Her2 Trial. He remembers Taylor’s amazing smile the first time they met – it was a stubborn, survivor’s smile. He told her she looked like a person who was going to live. 

The Her2 Trial – nicknamed the HEROS Trial for Her2 Osteosarcoma – was an immunotherapy trial.  Blood was drawn from Taylor and then doctors separated the immune cells, reprogrammed them to attack the cancer and reintroduced them into her body. The treatment was successful and shortly after the trial, Taylor had her right lung removed. She has been cancer-free since 2012.

“I honestly believe if we had not been at Texas Children’s and didn’t have this research from Dr. Ahmed, I don’t think she’d be here. I really don’t. I mean it kept coming back, until he did this.” said Tammy, Taylor's mom. 

Support Makes a Difference
“Without funding from Alex’s Lemonade Stand Foundation, she wouldn’t have had the opportunity to participate in this. We wouldn’t have the opportunity to make this happen for Taylor and other patients like her,” said Dr. Ahmed. “Perhaps she wouldn’t have been able to survive and our work wouldn’t have been able to survive.” 

The Her2 Trial was supported by an ALSF Infrastructure grant. These grants are funded one cup at a time, by our generous supporters. There are over a dozen different types and countless subtypes of childhood cancer. By supporting the research into better and safer treatments and creating the infrastructure for trials to take place, we can make a difference in a child’s life that is battling cancer. 

ALSF’s research grants program selects the most promising, innovative programs to fund. Every hour of research costs $50 and brings us closer to cures for all children. Every donation, every dollar counts in our battle to find breakthroughs for all children. ​

Inspired to join the fight? Donate here to fund innovative research, so more kids like Taylor can realize their dreams. 

Categories: 
Research

While playing goalie for her soccer team this April, Chloe Cox, a super bright 12-year-old from Texarkana, Texas, was kicked in the head. She stood up holding her head; but seemed okay. 

In the weeks that followed, Chloe began to have horrible headaches. Her family doctor diagnosed her with a mild concussion, with instructions to return if the headaches continued or got worse. The headaches continued and her doctor sent her to the ER for CT scan. 

Within one 1 hour, the family had a diagnosis: there was a tumor the size of a walnut near her pineal gland—a gland deep inside the brain tucked between the two hemispheres that produces melatonin which the body uses to regulate sleep cycles.  Doctors told Chloe’s parents that they were lucky they found the tumor now—all thanks to that kick in the head during soccer which led them to fear a concussion. Any further delay in treatment and Chloe could have died. 

Chloe had surgery that evening to relieve the pressure in her brain and to biopsy the tumor. While the family waited on results and for the next steps, Chloe’s oldest sister got married with Chloe right by her side.  The biopsy revealed that Chloe had glioblastoma multiforme, with rare histone mutations. This already rare, fast growing tumor was now classified as even rarer.

The next week, Chloe had a tumor resection removing 75-80% of the tumor. Then, Chloe was sent 300 miles away to M.D. Anderson, in Houston, Texas for radiation treatment. Chloe finished 7 1/2 weeks of radiation and now is continuing treatment in a clinical trial at M.D. Anderson in an effort to eradicate the disease and give Chloe her childhood back.

Chloe’s mom, Michelle, left her business and her job of 30 years to be with her daughter during treatment. It was a clear choice; the family had health insurance through Michelle’s husband and Michelle needed to be there for her daughter, in a way she never expected. 

“I am so grateful to have the opportunity to be able to be by her side every day. I have truly enjoyed our one on one time and we have laughed a lot together and cried a little, too,” says Michelle. 

The void left by Michelle’s income in the family finances was large.  Even as their local community rallied around the Cox family, the expense of travel was looming. Chloe and her family have made several trips, sometimes for weeks at a time or multiple times during a month, to M.D. Anderson in Houston, 300 miles from their home. Michelle knew they needed more support to ensure they could afford to get to the critical treatment that Chloe needed. 

“The ALSF Travel for Care team stepped up immediately with funding for our hotel expenses. Providing our family with the support we needed to stay together during Chloe’s treatment,” said Michelle. 

Chloe’s family is much like many childhood cancer families—who have to travel great distances, multiple times a year and even multiple times in one week for treatment, consultations, medications and surgeries.  Pediatric oncology care is so specialized—and even families close to a major cancer center, still may have to travel a distance to reach the most promising treatments.  ALSF’s Travel for Care program provides qualifying families with travel grants that help children and their families get to the most promising treatments at facilities across the United States.

Chloe’s cancer—glioblastoma multiforme—typically occurs in adults and is a fast growing tumor. Chloe’s tumor tripled in size between brain surgeries.  There are not known cures; but Chloe is determined to beat the disease and pave the way for breakthroughs for other children battling rare brain tumors.

“She is a survivor and a conqueror. Chloe is a force to be reckoned with. Her amazing strength and faith is something that many adults, including me, wish they had,” says Chloe’s mom.

Chloe continues to battle cancer and be an active 12-year-old. She loves her family. She loves to draw. She is funny. She is happy and when Chloe sees someone in need, she goes out of her way to do whatever she can to help.

There have been times in Chloe’s treatment when the family has traveled to the hospital for treatment; only to be turned away because insurance had not yet approved the treatment. They have no choice but to leave and then make the long trip again as soon as insurance approval came through. 

“My husband and I have been married 20 years and once we had children, we decided to never spend a night apart from each other and the children. This experience has challenged our family —and it has divided us in ways that are not always pleasant. We are so grateful for the support of ALSF for our travel and for their dedication to funding childhood cancer research” said Michelle. 

Tomorrow on #GivingTuesday, Chloe will take over the ALSF Facebook, Twitter and Instagram pages for the day and share more of her story. You can help us help more families like the Cox family travel to treatment by making a Giving Tuesday donation. In one day, ALSF hopes to raise $10,000, enough to help 20 families with travel expenses associated with treatment for childhood cancer.  Donate here. 

 

Happy Thanksgiving to all of our Hero Families, SuperSibs, supporters and amazing network of friends.  

We are thankful each year for the hero families—the Hero, the SuperSibs and the parents of a child battling cancer. These families go the distance each year for their own children, for each other and for their larger childhood cancer community. Our founder, Alex, inspired all of us to be thankful each day and of course, to turn all of our lemons into lemonade! 

Members of Hero Families are each affected differently by a childhood cancer diagnosis and  SuperSibs, the siblings of childhood cancer survivors, often struggle with a changing, unknown future in their family. Our SuperSibs program is dedicated to helping these amazing children and teens during their family’s battle, so they can face the future with courage and hope. 

SuperSibs give us, at Alex’s Lemonade Stand Foundation, courage and hope as well! We asked our SuperSibs and their families to share with us the things they are thankful for this Thanksgiving:


“I am thankful for how well life is going,” Rebecca, SuperSib
“I am thankful for the people who help me,” Dominic, Hero
“I am thankful for my mommy and daddy and my hero Dominic,” Dominic’s Sister
“I am thankful for donuts,” Ryan, Hero
“I am thankful for support,” Ellie, Hero
“We are thankful for kids getting cured every day,” the Nagrant Family
“We are thankful for friends,” the Matz Family
“We are thankful for our 4 daughters,” the Littlefield Family
“We are thankful for our family,” the Jackson Family
“We are thankful for Team Minion and the support of ALSF,” the Gibson Family
“We are thankful for ALSF,” the Cartafalsa Family

ALSF is thankful for the amazing network of Hero Families who work with us to raise awareness and funds for childhood cancer research! Our SuperSibs program offers siblings a variety of programs including:

  • Comfort and Care—we provide siblings and parents with resources that ensure appropriate and effective support at home, in school or at the hospital. 
  • Sib Spot—a special area on the ALSF website  that offers fun activities, words of support and resources for siblings. Sib Spot is divided by age group.
  • Sibling Ambassador Program—offers siblings of children with cancer the opportunity to share their family’s story and experiences with other kids, researchers and supporters. 

Meet our Hero Families and SuperSibs here. 

 

Immunotherapy offers hope in the fight against childhood cancer. Read more about immunotherapy childhood cancer research

The body’s immune system is robust and powerful—it can reject an entire transplant organ within minutes or hours if the mismatch is too severe. The moment it senses infection, the immune system wakes up and deploys cells to heal the body. 

So, why doesn’t the body attack cancer cells the same way it heals an infection?

The answer lies in the powerful, sinister ability of cancer cells to hide from the immune system, using cloaking technology that is a result of mutations and adaptions within these abnormal cells. As a result, tumor cells can grow without any interference. 

Immunotherapy, which aims to recruit the body’s own immune system to reject cancer as if it was a mismatched organ, is bringing hope in the fight against childhood cancer

We spoke with Ted Johnson, M.D., Ph.D, a clinical oncologist, researcher and ALSF Bio-Therapeutics Impact Grantee about the prospect of immunotherapy and how this treatment could lead to cure for childhood cancer 

Why doesn’t the immune system ramp up to kill cancer cells?
Tumors deploy a variety of mechanisms to hide and suppress immune system pathways. This “cloaking technology” tells the immune system that the tumor is normal tissue and should not be damaged.  When a tumor is damaged by treatments like chemotherapy and radiation, part of it dies. Sometimes the immune system does not recognize the dying part of the tumor as being foreign, and instead the immune system treats it like a wounded organ by actively repairing the tumor tissue, just like it would help heal a more normal wound in healthy tissue. 

So, if cancer has found a way to make the body believe it belongs there, how can the immune system be taught to recognize cancer as an invader?
Immunotherapy drugs and treatment protocols are working to wake up the immune system. When fully activated the immune system can successfully do its job and attack the cancer. The immune system can also leave behind memory cells that can reactivate later if it encounters the same problem again. We believe that robust immune responses against cancer will not only cure the first instance of disease but also target and prevent a relapse. 

What are the different types of immunotherapy?
There are several types of immunotherapy treatments being tested including:

  • Engineered immune cells, which are specifically designed to target cancer cells
  • Cancer vaccines, which stimulate immunity to targeted cancer cells
  • Checkpoint inhibitors, which stop cancer from suppressing immune responses
  • Antibody therapies, which can target cancer cells for destruction by the immune system
  • Signaling protein molecules (cytokines), which can stimulate immune cells in various ways 

Are there side effects of immunotherapy?
Immunotherapy drugs often have very few side effects, unlike chemotherapy and radiation. Children on treatment have a good chance of maintaining a high quality of life and being kids—going to school, participating in activities and doing everything children do. There is also hope that immunotherapy can be a safe treatment for infants who cannot tolerate the devastating side effects of other treatments.

There are some risks associated with treatment such as inflammation from tumor damage during treatment, which doctors monitor closely. There is also a long term increased risk of auto-immune disorders. 

What types of childhood cancer can be treated with immunotherapy?
Most researchers believe immunotherapy will ultimately be used to treat all types of childhood cancer. However, immunotherapy childhood cancer research is 5-10 years behind adult immunotherapy research. We are all working to fix that. 

ALSF funds several cutting edge immunotherapy projects, including a Phase 1 clinical trial led by Dr. Johnson at Augusta University, Medical College of Georgia in Augusta, Georgia. Next week, check out the ALSF blog for the story about that Phase 1 Clinical Trial and how it is giving renewed hope to children battling relapsed brain tumors.

You can see the full list of immunotherapy projects funded by ALSF grants here.

Categories: 
Research
ALSF is thankful for the amazing supporters that help us fund childhood cancer research. Share what you are thankful for.

Every day, we are thankful for YOU—the supporters, donors, researchers and hero families who move us all closer to cures for childhood cancer. The time, money, talents and passion each of you show to the cause is incredible. Thank you for carrying on Alex’s legacy and thank you for helping Alex’s Lemonade Stand Foundation find cures, one cup at time!

Tell us what you're thankful for this year in the comments below and share with your friends to see what they're thankful for!

About Monthly Shareables:
You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month, we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

How To Share:
Sharing is easy! Links to the shareable on Facebook, Twitter and Instagram are on the tabs below. Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research. 

Categories: 
Social Media
5 things you need to know about childhood cancer research

Right now, researchers are working around the clock thanks to your generous support to find breakthroughs and save the lives of kids fighting cancer.  

Here are 5 things you need to know about childhood cancer research:

1. Childhood cancer research does not happen overnight. From idea formulation to discovery to preclinical testing to clinical trial, research takes years before patients can access treatment. Childhood cancer research is 5-10 years behind similar research for adult cancers; making funding critical to help get our children closer to cures. ALSF funds all stages of the process—the early stages of ideas and data collection, preclinical research and clinical trial—to make sure childhood cancer research results in breakthrough treatments. 

2.  Building infrastructure helps expedite childhood cancer research and train the next generation of researchers. By funding clinical trial infrastructure development through our Center Of Excellence grants program, ALSF helps expedite the development of novel therapeutic approaches to treating childhood cancers. These Centers Of Excellence use funding to build their childhood cancer research programs ensuring that research continues for the long haul. 

3. Taking educated risks in research works. Our boards of scientists, researchers and nurses use a comprehensive review process to evaluate groundbreaking projects and  choose projects that take risks—all to accelerate us faster towards a cure. Testing cutting edge treatments, like immunotherapy and genetic testing are helping to save children’s lives now. 

4. Collaboration is the key to breakthroughs. Scientists, researchers and oncologists all work together to collect data, test therapies, analyze results and find cures. ALSF believes in collaboration. Annually, our Young Investigators Summit brings together top young researchers from all over the world to present, collaborate and share research. Our new bioinformatics lab will harness the power of big data, the data being generated by scientists researching childhood cancer, to help us get closer to a cure. 

5. Finding a cure for childhood cancer is not simple; but we are closer than ever before. Childhood cancer research is complex, time-consuming and requires collaboration. As we continue to push forward, we are closer to finding cures. ALSF has already funded over 650 research grants designed to push innovation further and accelerate the rate at which scientists can get funding. As our grant list grows, so will the breakthroughs and the cures. 

Read more about our grants program and meet our childhood cancer heroes. 

Categories: 
Research
Forget the tricks! This Halloween, let's treat childhood cancer.

Forget the tricks! This October let’s fund more innovative, breakthrough treatments for childhood cancer. Want to help in the fight against childhood cancer? Read about our grant program, find out how to host a lemonade stand and share this graphic all month to help us raise awareness!

About Monthly Shareables:
You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month, we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

How To Share:
Sharing is easy! Links to the shareable on Facebook and Twitter are on the tabs below. Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research. 

Social embeds

Striking Out Childhood Cancer is the ALSF Northern California bowling fundraiser.

This October, our supporters in Northern California, will host the second annual Striking Out Childhood Cancer—an afternoon of bowling, cocktails, dinner and auctions benefiting ALSF. Inspired by the life and legacy of C.J. Banaszek, who died from chronic myelogenous leukemia when he was 13 years old, Striking Out Childhood Cancer is an example of a unique way you can help make a difference and help raise critical research dollars.

It is also another one of ALSF’s regional events—as the movement grows from Alex’s background—it is incredible to see how our supporters are everywhere. Childhood cancer, sadly, is everywhere too. Meet some of the local hero families and as well as the Banaszek family in Northern California:

C.J. Banaszek
C.J. was 11 years old when he had a nosebleed that wouldn't stop. His mom took him to the emergency room, where a doctor with a hunch took a blood test that revealed that C.J. had chronic myelogenous leukemia. After he was diagnosed, C.J. had a successful bone marrow transplant, but he relapsed two months later. He went on to have two more transplants and spent eight and a half months in the hospital. He finally defeated his leukemia, but passed away in July of 2014 from a fungal infection he acquired during treatment.

C.J.’s mom, Heather, hopes that leukemia treatments improve so that no child has to go through a bone marrow transplant, and, of course, that there can be a cure for cancer. She advises other parents whose children have recently received a cancer diagnosis to “stay positive and take it one day at a time. Be like Dory from Finding Nemo and ‘just keep swimming.’”

C.J. faced his illness with incredible strength, a smile on his face and a sense of humor. He fought an epic battle and continued to be concerned for the wellbeing of those around him. Heather shared more about CJ and her family’s story here. 

Jayden Zentner
When Jayden Zentner was just 4 years old, he complained of severe back pains. His mother said that doctors initially provided no real answers, but her motherly instinct knew the pain was not typical growing pains. She pushed for an MRI and shortly after received the shocking news that Jayden had three masses. Jayden was diagnosed with high risk acute lymphoblastic leukemia with lymphomatous features. His treatment has been rigorous—3 1/2 years of chemotherapy that completed in September 2016. The treatment compromised his immune system, caused hair loss and the cancer caused two fractures in his spine.

Despite it all, Jayden enjoys being a kid and playing with his friends. He also has big dreams and one day hopes to be a scientist to help find a cure for childhood cancer so other children don’t have to go through what he has endured. 

Jack Busick
Six-year-old Jack Busick is a feisty, fun-loving little boy who is all heart. He was born with Down Syndrome and as a result routinely tested for several potential health issues including leukemia. A few weeks after his 4th birthday, Jack was diagnosed with ALL. His treatment was difficult as he struggled to understand why tests and procedures had to be performed. He also struggled with sensory issues that made physically forcing treatment necessary and horrifying for his family. Jack is a fighter—and since his last chemo dose on January 16, 2016, he’s been cancer-free.  His mom, Angi, wants everyone to know that no family can fight alone and it took a village to truly get through Jack’s treatment and to help the entire family get through the diagnosis and treatment. 

Striking Out Childhood Cancer is Sunday, October 16 from 1-7 pm in Petulama, California and presented by Northwestern Mutual. Register, donate and help us Strike Out Childhood Cancer! Get more details here. 

Categories: 
Special Events
Childhood cancer survivor Jordan Vincent battles diffuse neural glial tumors

There have been several times during her battle with childhood cancer, that Jordan Vincent has not been able to walk. It has never stopped her from going the distance for a cure. Jordan, who is now 18, has been slaying diffuse neural glial tumors since she was 4-years-old. Each year during Alex’s Million Mile, Jordan has found a way to log miles, even if it is just one mile in her wheelchair—or several laps walked with her family. This year, Jordan rode for the entire 45 minutes during her annual SoulCycle fundraiser and raised over $20,000 for childhood cancer research—just weeks after being in a wheelchair. 

Jordan is pictured, above, with her SoulCycle instructor Laura Crago.

“Jordan rarely looks back. She doesn’t look back to make future decisions. She has never shied away from the battles she has had to fight,” says Larry Vincent, Jordan’s dad. 
 
Read more about Jordan here.

Categories: 
Alex's Million Mile

Alex’s Million Mile is held every September to raise awareness about childhood cancer and to raise critical funds for childhood cancer research. There are thousands of participants—all around the world—and among the most dedicated are our childhood cancer hero families. Shannon and Jake Leonard, parents to Caleb, Xavier and Asher, log their miles in Kellyville, Australia, a Sydney suburb--a place that feels a million miles away from their hometown in Kansas. 

Their youngest son, Asher, was diagnosed with ependymoma, a tumor of the brain and spine, in October 2011 when he was just 2 years old. Asher passed away, at the age of 4 1/2 in July 2013. 

That year was also the start of Alex’s Million Mile and what would become the start of a family tradition for the Leonards and a new way forward in the fight against childhood cancer. Here is Shannon’s Alex’s Million Mile story:

The inaugural year for Alex’s Million Mile, September 2013, was just two months after Asher died. We were all reeling. The kids were back to school. Jake was back to work. I was left in the house, alone, with what felt like no purpose. I left my job the day Asher was diagnosed in October 2011, and had spent every day since taking care of him, researching treatments and doing everything in my power to give him happy, meaningful days. 

Participating in Alex's Million Mile that first year gave me a sense of purpose. I got up every day, put on my gym clothes and running shoes and hit the pavement. With every step I thought about Asher. I thought about all the years he'd miss living on this earth; all the steps he'd never run or walk; and all the firsts he'd miss. I pushed myself every day to run a little further, a little faster, because Asher couldn't.  

Our family joins Alex’s Million Mile each year for the same reasons, but I can say that every step I run and walk, doesn't carry the same weight it did 3 years ago. I smile and even laugh when I run; thinking about Asher and all the wonderfully funny, amazing and compassionate things he did. In his 4 1/2 years , Asher taught us how to live in the face of adversity. He never complained. He never asked why he had to go through such hell. He was a happy little boy, who loved knock-knock jokes, cooking, Star Wars, playing outside and his big bothers. He was always concerned about others and even on the hardest, darkest days, he was always asking how everyone else was doing, making sure we were all ok. 

Our family will always continue to do what we can—whether that be bringing awareness, seeking donations or gathering support—to  ensure that someday, no family has to watch their child and sibling suffer at the hands of cancer. We know that our hearts and Alex’s Lemonade Stand Foundation’s mission align. We will continue to support all of their efforts to further research and support families.

We moved to Australia in July 2016. To have this amazing experience of living in another country, experiencing a whole new part of the world and giving our boys the opportunity of a lifetime, was an easy decision. Our boys have such a deep appreciation for life, having lived through the death of their brother. In discussing the move with the boys, it was Caleb who looked at us one day and said "Mom, this is an easy decision. We've had to make the hardest, most awful decisions with Asher, and THIS is not a hard decision.”

The majority of our team members are from Kansas and Ohio, our "homes." Asher's Stormtroopers began within weeks of Asher's diagnosis, as my sisters wanted to make t-shirts to support Asher and our family. Our boys suggested the color yellow, like Asher's blanket, that was always in his hand, a pale yellow color, was named "yellow." Asher loved everything Star Wars, due to his brothers’ love of Star Wars, and the name and design was born. We've stuck with the shirts and team name, as we carry on in honor and memory of Asher.

You can read more about Asher’s story and Asher’s Stormtroopers here. 

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