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wo weeks before her birthday, an MRI showed that Lauren had a tumor on her optic nerve, a low-grade glioma. Low-grade gliomas are a type of central nervous tumor that arise from the connective tissue of the brain. When this type of tumor is on the optic nerve, it can cause visual disturbances and blindness.

Just before turning 8-years-old, Lauren failed a vision test. 

Her parents assumed a trip to the optometrist and a pair of glasses would correct the issue. But, it did not. 

Two weeks before her birthday, an MRI showed that Lauren had a tumor on her optic nerve, a low-grade glioma. Low-grade gliomas are a type of central nervous tumor that arise from the connective tissue of the brain. When this type of tumor grows on the optic nerve, it can cause visual disturbances and blindness. 

Lauren’s tumor was inoperable; doctors had to work to stabilize and inhibit the tumor’s growth in order to preserve Lauren’s vision. Her oncologist at Children’s Hospital of Philadelphia, Dr. Angela Waanders (also an ALSF-funded Young Investigator grantee) stabilized the tumor with several rounds of chemotherapy. And it worked, but only for a year. 

At 10 years old, Lauren was back battling for her vision and her life. 

Dr. Waanders tried a medication called vincristine. Vincristine is a chemotherapy agent that has been in use since the 1960s. It works to inhibit cell division—and since cancer cells rapidly divide—the drug can be effective to stop cancer growth. 

But, it did not work for Lauren. Lauren was running out of options. 

Then, Dr. Waanders founded a trial that offered some hope. 

Dr. Waanders enrolled Lauren in a Phase II clinical trial for the drug lenalidomide. Lenalidomide was originally approved as a therapy for multiple myeloma, a cancer of the plasma cells. The phase I trial of the drug for children battling brain tumors confirmed its safety. In the phase II trial, effective dosing was tested. The trial was randomized—so some patients received high doses and others received low doses. 

Lenalidomide is an angiogenesis inhibitor—a type of drug that blocks the formation of new blood vessels. Tumors are reliant on new blood vessels to grow, so cutting off that ability should stop tumor growth in its tracks.

And for Lauren, it did. 

The trial stopped Lauren’s tumor from growing, giving her and her family the gift of time and stability, which according to Lauren’s father Patrick, will give researchers more time to work to find cures. 

“You have to believe in the research and eventually they’ll have a procedure or maintenance treatment that will allow her to live a normal life,” said Patrick. 

Today, almost two years after beginning treatment with lenalidomide, Lauren has stable disease. Lauren is not waiting for a cure—Lauren is fighting for a cure, as a regular stand host for Alex’s Lemonade Stand Foundation. Together with her family, Lauren has raised nearly $40,000 for childhood cancer research. 

Read more about low-grade glioma and pediatric brain tumor research, here

Open to all institutions in the U.S. and Canada,  Alex’s Lemonade Stand Foundation’s Travel for Care program offers assistance to families who face the need to travel for potentially lifesaving childhood cancer treatment. Assistance for transportation and lodging may be available to families who meet program guidelines and apply through a member of their medical team.

After three years of treatment for neuroblastoma, Elijah Talley had exhausted options at his hometown hospital in Little Rock, Arkansas. Diagnosed when he was just 4 years old, Elijah went through the endless cycle of treatment and relapse, again and again. Conventional treatments, which included high dose chemotherapy, radiation and a stem cell transplant, failed.

Neuroblastoma, the most common type of extra-cranial solid tumor in children, can range from benign to malignant. Advances in targeted therapies have made some cases of neuroblastoma easier to treat; while other cases are still tricky. When frontline treatment fails and children like Elijah relapse, clinical trials represent the best hope for remission and survival.

But, clinical trials are often far from home. For the Talleys, “far” meant a 1200 mile journey to Philadelphia. 

The family found a clinical trial at the Children’s Hospital of Philadelphia (CHOP), led by Dr. John Maris, a member of the ALSF Scientific Advisory Board. On the eve of their third trip to Philadelphia in less than three months, Elijah was unable to fly because of his treatment and condition. The only way to get Elijah to treatment would be an expensive and time-consuming road trip.

“The sad reality is the challenges that come with traveling so far often make it impossible for families. The expenses are incredibly overwhelming—especially when most families like ours are already in great financial distress,” said Dawn Talley, Elijah’s mother. 

The Talleys found Alex’s Lemonade Stand Foundation because of the story of our founder Alex’s battle with neuroblastoma.

Working with their hospital social worker, the Talleys used the ALSF Travel for Care program to help with travel expenses to and from Philadelphia. Dawn even recalls a time when the family was stranded in Chicago overnight because of weather. She had $13 in her wallet. 

“Our social worker made the call to ALSF and within minutes, the staff reserved a hotel room that not only had a free airport shuttle but also had a complimentary breakfast,” said Dawn. 

Elijah had been traveling back and forth from Little Rock to Philadelphia for nine years and hosting ALSF lemonade stands for 11 years. Elijah still has neuroblastoma—but the treatments guided by Dr. Maris and his neuroblastoma team at CHOP continue to offer hope. 

“I know that we would go to the ends of the world to save our son. I also know that we couldn’t get there without help,” said Dawn. 

Read more about Elijah and his hero story here.

About Travel for Care
Open to all institutions in the U.S. and Canada,  Alex’s Lemonade Stand Foundation’s Travel for Care program offers assistance to families who face the need to travel for potentially lifesaving childhood cancer treatment. Assistance for transportation and lodging may be available to families who meet program guidelines and apply through a member of their medical team. 
Read more here. 

Little Sophia, who is now 8-years-old and a survivor of Wilms’ tumor, the most common type of kidney cancer in children, describes herself  as “one tough cookie.”

“I want chocolate milk, IMMEDIATELY,” those were 4-year-old Sophia’s first words following a seven-hour surgery to remove a tumor on her kidney. 

It is no surprise that little Sophia, who is now 8 years old and a survivor of Wilms’ tumor, the most common type of kidney cancer in children, describes herself  as “one tough cookie.”

Wilms’ tumor typically presents itself as a painless swelling of the belly. In Sophia’s case, her pediatrician noticed it at her routine 4-year-old checkup. For other children, a parent might notice the swelling or even, rarely, blood in their child’s urine.

Treatment includes surgery to remove the tumor or the entire affected kidney, chemotherapy and radiation. The disease has a high cure rate—as high as 90% for most children—but high doses of radiation can cause long-term side effects. Children who have been treated for Wilms’ tumor have regular scans to check for both relapse and side effects. 

Sophia had surgery, followed by 18 months of chemotherapy and radiation at Wesley Medical Center in Wichita, Kansas. Treatment was hard—but her family worked just as hard to keep Sophia’s spirits high with special outings and lots of love. Sophia kept her spunky, tough cookie attitude throughout treatment. 

Sophia has been three years cancer-free and, together with her family, is a Hero Ambassador for Alex’s Lemonade Stand Foundation. Her family knows how important childhood cancer research is for children like their daughter.

“I’m so grateful that Sophia is well and that there’s a treatment plan for her, but she suffered,” said Tiffany Stepien, Sophia’s mom. 

Treatment for Wilms’ tumor has been largely unchanged for some time, because of its high cure rate. However, high doses of radiation to a child can come with several serious side effects, including scoliosis, restrictive lung disease and sarcoma, later in life. Now, research is studying how targeted, individualized treatments can help limit the use of high dose chemotherapy and radiation, so children can be cured without being harmed. Research is also looking to identify the highest risk patients—those who may be prone to relapse—so that this group can receive higher doses of frontline treatment and beat Wilms’ tumor without relapsing. 

Sophia is already planning to help search for safer, more effective treatments for kids like her. 

“Sophia always said she’s going to invent a chemo that only gets the cancer cells and not hair or stomach cells,” said Tiffany. “And then, “I am going to invent glasses that can just look at my belly and know the cancer is gone and I won’t need a CT scan.”

Read more about Sophia here.

ALSF funds several research projects studying Wilms’ tumor, as well as Beckwith-Wiedemann Syndrome, a genetic predisposition disorder that can lead to the development of Wilms’ tumor. Read more about that research here.

 

In August 2017, the FDA approved CAR (Chimeric Antigen Receptor) T Cell immunotherapy as a treatment for certain types of ALL. This is the first gene therapy to achieve FDA approval in the United States and one of the few major breakthroughs and approvals for pediatric oncology in recent years.

Relapsed Pre-B cell acute lymphoblastic leukemia (ALL) has a notoriously low remission rate—but now, thanks to childhood cancer researchers and the FDA, there is more hope on the horizon. 

In August 2017, the FDA approved CAR (Chimeric Antigen Receptor) T Cell immunotherapy as a treatment for certain types of ALL. This is the first gene therapy to achieve FDA approval in the United States and one of the few major breakthroughs and approvals for pediatric oncology in recent years. 

Like other types of immunotherapy, CAR T cell therapy harnesses a patient’s immune system to fight and destroy cancer cells.  

We spoke with Dr. Rebecca Gardner, a physician at Seattle Children’s Hospital and ALSF Young Investigator grantee about the significance of this FDA approval. Dr. Gardner recently led a clinical trial using CAR T cell therapy as a treatment for relapsed leukemia. In her trial, 93% of patients reached remission, after struggling to reach remission using traditional leukemia treatments. 

Why is the FDA approval so exciting?

Dr. Gardner (RG) A few things make it so exciting: First, it is rare to get an initial approval of a drug for a pediatric oncology indication. Second, this is a therapy that we have all been waiting a long time for– a targeted therapy with very little long-term side effects and is highly effective. It moved quickly from initial studies to FDA approval. 

 What is the long-term implication of this approval for leukemia treatment?
 
(RG) The anticipation is that this is the first step towards changing the landscape of how we treat pediatric leukemia. The vision is that ultimately, we can remove a lot of the standard chemotherapy that we use and replace it with CAR T cell therapy. It’s not something that is going to happen overnight, but I truly believe it is where we will end up.
 
How could this approval accelerate research of immunotherapy treatments for other types of relapsed pediatric cancer? 

(RG) It continues to bring greater awareness to this type of therapy and the potential for its efficacy. It will be used by more researchers in the field so that we can continue to develop immunotherapy for additional pediatric tumors. 

Read more about Dr. Gardner and CAR T Cell immunotherapy:

 

 

Challenge your friends and family to a Halloween-themed Scavenger Hunt and help ALSF scare away childhood cancer, for good!

Challenge your friends and family to a Halloween-themed Scavenger Hunt and help ALSF scare away childhood cancer, for good! ​

Monsters are scary, but childhood cancer is scarier. Childhood cancer is the number one cause of death by disease in children in the United States. During the month of October, over 20,000 children (nearly 700 a day!) will be affected by an initial or recurrent diagnosis of childhood cancer. Research is needed and it is needed NOW. 

Together, we can change this scary fact and work together towards cures

This Halloween, join the ALSF Halloween Scavenger Hunt and help us scare away childhood cancer for good! Participating is easy and fun, just follow the simple instructions below and share your fun with us on social media using the hashtag #ScareAwayChildhoodCancer. 

Want more spooky ideas for how you can scare away cancer? Check out some of our favorite ideas here.

Here’s how to play:

  1. Print out our scavenger hunt (see below). 
  2. Gather your family and friends and go on the hunt. (Kids, bring your parents!) 
  3. Print out our selfie sign (click here for a printable version), take a selfie and share it with the hashtag #ScareAwayChildhoodCancer on Instagram.
  4. Bonus entry: Head to a Fall ALSF lemonade stand and take a selfie there. (Don’t forget to grab a cup of lemonade and make a donation!). Use our stand finder to find a stand nearby.
  5. On November 1, 2017, we’ll pick one winning scavenger hunt selfie, at random, as our prize winner! The winner will receive some ALSF swag and bragging rights.

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