Real-Life Stories

Childhood Cancer Survivor Goes From Cancer Free to College Grad

by Erinn Jessop, St. Baldrick's Foundation
July 17, 2018
collage of Sean during treatment and at graduation

(Left) Sean in treatment at Memorial Sloan Kettering Cancer Center in New York. (Right) Sean with his mom, Marcia, and dad, Richard, during his graduation from Indiana University.

Honored Kid Sean Kligler graduated from college in May. The day was a tangle of emotions – happiness and sadness both.

“At graduation, I was happy — all those years of schooling finally paid off. I was able to get a college degree,” he said. “Of course, I was sad as well. I really enjoyed my time in college and I made some really good friends along the way.”

But there was another emotion mixed into that bittersweet day. It was gratitude. That’s because when Sean was 5 years old, he was diagnosed with childhood cancer. And when you have cancer, surviving to graduate college, or even attend college, is anything but guaranteed.

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Research

Researcher Targets Childhood Cancer With a Virus

by Erinn Jessop, St. Baldrick's Foundation
July 11, 2018

Just mentioning herpes might make some people a little nervous, but in this story, herpes is the good guy. Read on for more about St. Baldrick’s Scholar Dr. Gregory Friedman’s work on a genetically altered version of the virus that could be the next targeted therapy for kids with brain tumors.

BREAKING NEWS: An innovative therapeutic tool developed by Dr. Friedman has proven to be safe in kids with high-grade gliomas, according to recently released clinical trial findings. Crafted from the herpes virus that causes cold sores, the genetically modified virus has already shown promise in killing cancer cells and stimulating the immune system to attack the brain tumor – with one patient still showing progress more than a year after treatment! In the next phase of research, Dr. Friedman will study how safe the viral tool is when combined with one low dose of radiation, which is expected to boost the immune system and help the virus replicate.

Dr. Friedman smiles with a young patient in an exam room

Dr. Friedman smiles with a young patient in an exam room at Children’s of Alabama.

St. Baldrick’s Scholar Dr. Gregory Friedman discovered that the herpes simplex virus, with a few modifications, will kill pediatric brain cancer cells — without causing cold sores.

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Advocacy

Teen Saved by Science Speaks Up for Kids’ Cancer Research

by Zach Swart
July 3, 2018

Back in April, Ambassador Zach was finally healthy enough after his bone marrow transplant to go out in public. What did he decide to do after that momentous milestone? He joined the hundreds of advocates speaking up for kids’ cancer research on Capitol Hill during Childhood Cancer Action Days. Here’s his recap of that trip and the big moments that have come since …

Ambassador Zach on Capitol Hill

Ambassador Zach poses for a photo in front of the United States Capitol building and its famous dome during Childhood Cancer Action Days in April.

I received a bone marrow transplant over a year ago, and I was so glad that I was healthy enough to speak on Capitol Hill this past April as a St. Baldrick’s ambassador. As an ambassador, I am a face and a voice for childhood cancer, and while in Washington, D.C., my family and I represented thousands of children and families who are affected by childhood cancer. I was lucky enough to share my story and talk about the importance of funding childhood cancer research through the STAR (the Survivorship, Treatment, Access and Research) Act, the most comprehensive childhood cancer legislation ever taken up by Congress. With the recent passage of the STAR Act, we have come so far, but we still have so far to go.

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Childhood Cancer

This New Tool Could Mean Better Health For Childhood Cancer Survivors

by Erinn Jessop, St. Baldrick's Foundation
June 28, 2018

For childhood cancer survivors, treatment helps them to survive, but often that survival comes at a cost. But what are these costs? And how big is the problem? That’s what St. Baldrick’s Fellow Dr. Nickhill Bhakta wanted to figure out. And as it turns out, that data could be a lifesaver.

Dr. Nickhill Bhakta at his desk

St. Baldrick’s Fellow Dr. Nickhill Bhakta works at his desk in St. Jude Children’s Research Hospital. With a portion of the grant supported by the St. Baldrick’s Morgan and Friends Fund, he developed a special statistical tool to help capture the true volume and complexity of chronic health conditions faced by childhood cancer survivors because of the long-term consequences of their treatment — something that hadn’t been done before. Photos courtesy of St. Jude Children’s Research Hospital

Over the years, researchers have discovered that because of their treatment, childhood cancer survivors can be at risk of everything from heart attacks to secondary cancers to stroke. That’s helpful to know, but Dr. Bhakta recognized that something was missing from the data that was available on survivorship. It wasn’t painting the complete picture. It was just capturing the first big health scare, instead of following the survivor through the multitude of chronic, often recurring conditions.

The scope simply wasn’t big enough.

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Real-Life Stories

What Is It Like to Be a Childhood Cancer Survivor? It’s Complicated.

by Zoe Enderle Wagner
June 25, 2018

Honored Kid Zoe was diagnosed with acute myeloid leukemia when she was a teenager. Now, almost four years after finishing treatment and getting the news that the cancer was gone, Zoe is taking a look at what she’s learned during her cancer — and cancer-free — journey.

Zoe Wagner

Honored Kid Zoe Wagner is now 19 years old and has been cancer free for four years.

The anticipation of upcoming milestones and the overall exploratory nature of the teenage years make the age of 15 a common time to be naïve – and naive I was. Life was simple and my carefree spirit allowed me to believe it would always be that way. This trusting nature also led me to ignore the severity of the disease symptoms I was having for months. As these symptoms got worse, my uncomplicated mind created uncomplicated explanations for the way I was feeling. I told myself that I was always tired because I was a teenager, and that this exhaustion was the cause of my daily headaches. I blamed my newly heavy periods on ordinary hormonal changes, bruising on being clumsy, unusually pale skin on it simply not being sunny enough out, and weight loss on, well, it happens. It wasn’t until red needle-prick like dots appeared all over my legs that I requested to go to the doctor.

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Childhood Cancer

St. Baldrick’s Shines a Light on Childhood Cancer at Major Oncology Meeting

by Becky C. Weaver, Chief Mission Officer, St. Baldrick's Foundation
June 21, 2018

It’s a safe bet that when a group of prominent cancer researchers get together to share news about progress, researchers supported by St. Baldrick’s donors will be among them. This was true of the June 2018 annual meeting of the American Society of Clinical Oncology (ASCO), the largest gathering of cancer professionals in the world. This year, St. Baldrick’s was a prominent part of this significant event. Read on to learn more …

Danielle speaks at ASCO

St. Baldrick’s Senior Director of Advocacy and Government Relations, Danielle Leach, speaks during the presentation of the Partners in Progress Award at the ASCO conference. Photo by © ASCO/Matt Herp 2018

An ASCO meeting is like a city within a city, with more than 32,000 professionals attending, from patient advocates to academic researchers to biotech movers and shakers.  Each year, the news announced at this meeting has far-reaching implications for the future of research, outcomes for patients, and even stock prices of companies involved in new advances.

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Childhood Cancer

Researcher Aims to Make Transplants Safer for Kids With Cancer by Combating GVHD

by Erinn Jessop, St. Baldrick's Foundation
June 19, 2018

For some kids with cancer, getting a bone marrow transplant can be a blessing, but for others it can be a curse. That’s because of a complication called Graft-Versus-Host Disease or GVHD, which not only causes immense suffering — it can also be fatal. Enter Dr. Melissa Mavers, a St. Baldrick’s Fellow who aims to stop GVHD in its tracks and help kids with cancer live long, healthy lives after transplant.

Dr. Mavers in the lab

Dr. Melissa Mavers works in the lab at Stanford University Hospital. A St. Baldrick’s Fellow, Dr. Mavers is an instructor of pediatrics in the Division of Stem Cell Transplantation and Regenerative Medicine at Stanford University.

For a kid with cancer and their family, a bone marrow transplant can mean a clean slate and a new beginning. But it’s not easy. The procedure involves intense, high-dose chemotherapy and sometimes radiation, which wipes out the kid’s bone marrow cells and immune system. This forces them to remain in isolation at the hospital, so they don’t get sick.

“The destroyed cells are then replaced with cells from a donor to not only help rebuild their defense systems and their ability to make blood but also to fight any last cancer cells that remain,” explained Dr. Mavers.

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Research

An Injection of Hope: Researcher Studies Innovative Potential Therapy for DIPG

by Erinn Jessop, St. Baldrick's Foundation
June 18, 2018

For kids diagnosed with a rare and fatal type of brain tumor called DIPG, or diffuse intrinsic pontine glioma, there is no cure and treatments are heartbreakingly scarce. St. Baldrick’s researcher Dr. Mark Souweidane is on a mission to change the bleak statistics on DIPG survival. Learn about his groundbreaking work so far and what’s coming next.

BREAKING NEWS: The promising results of Dr. Souweidane’s groundbreaking research have just been published in the peer-reviewed journal Lancet Oncology! Supported by St. Baldrick’s, this Phase 1 clinical trial involved the injection of a cancer-fighting drug directly into the tumors of children with DIPG. There were exciting results — no serious side effects or dose-limiting toxicities were observed in the kids who participated, which means that the therapy has been deemed safe for use in pediatric patients. Thanks to St. Baldrick’s support, this promising trial will now expand to multiple institutions, giving hope to kids with this currently incurable, fatal tumor and to their families.

Dr. Mark Souweidane

DIPG life expectancy is devastatingly short — with many kids dying within two years of diagnosis. Dr. Mark Souweidane wants to change that.

For kids with DIPG, treatment with radiation just lets them live a little while longer. Traditional chemo doesn’t work because of the blood-brain barrier. Tumor removal with surgery is out of the question, because the cancer is intertwined with the delicate tissues of the brainstem, which regulates breathing and other vital functions.

So, what does a doctor working on DIPG do to help these kids?

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Families

Dear Son, I’m Proud to be Your Dad

by Dan Tilton
June 16, 2018

From the moment he was born, Ambassador Kellan has been fighting childhood cancer and its devastating effects. But he doesn’t fight alone. His dad, Dan, is right there with him — and Dan wouldn’t have it any other way. In honor of Father’s Day, Dan wrote this letter to Kellan to share how blessed he feels to be his dad.

Kellan and Dan

Ambassador Kellan and his dad, Dan.

Dear Kellan,

As I sit here writing this letter, you are in the operating room at Boston Children’s Hospital. This is a familiar place to you, your Mom and me. As we walked down the halls yesterday to check in, waves of emotion came over me as I reflected on the past six years. We have spent many days and weeks here since your birth.

They’ve told us that your operation will be approximately nine hours, but I know it’ll feel like a lifetime before I see you again. So, here I wait and try to put into words what it means to be your Dad. I don’t know that it’s possible to say exactly what it means to me. Although your smile and thumbs up prior to today’s surgery tells part of it.

Since day one of your life, you have been an inspiration. We watched your battle with cancer begin on the day of your birth. Chemotherapy started on day three. Your tumor resection surgery was month three. Hundreds of visits to the doctor, scans and appointments followed. At 17 months, you got your wheelchair and started to run, Kellan style. At year five we celebrated no evidence of disease — cancer free! Although you are free from cancer, you are paralyzed. Cancer left its mark, but it doesn’t define you or your remarkable life. This year, you were named an Ambassador for St Baldrick’s, an honor I know you don’t take lightly. Your willingness and ability to advocate for all children and families impacted by childhood cancer humbles me. You speak about it from the heart and I am filled with pride when you and your Mother work so hard for others.

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Childhood Cancer

And the St. Baldrick’s 2018 #BestBaldDad Is…

by St. Baldrick's Foundation
June 15, 2018

We’ve already shaved over 30,000 heads this year to raise money for kids’ cancer research. That’s a lot of bald heads! So, for Father’s Day, we wanted to do something special for all the dads who went bald in support of kids with cancer. Check out the winners of our #BestBaldDad contest below.

BBD Winners

This year’s #BestBaldDad contest made for some tough decisions. How could you not vote for all of them?

After hundreds of votes and countless requests to crown them all as the #BestBaldDad, we finally have our top three winners, each receiving a goodie from St. Baldrick’s AND a co-branded St. Baldrick’s + Love Your Melon beanie!

Introducing your 2018 #BestBaldDads:

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