“I wish there was no such thing as cancer. But we do understand more.” -Andrew

Six-year-old Andrew Smith was diagnosed with diffuse intrinsic pontine glioma (DIPG) in October 2007, three days after his mom Sandy was diagnosed with breast cancer. One of Andrew’s primary care physicians sent him to the Emergency Room following multiple visits for what they initially assumed was a virus. 

By the end of the afternoon, doctors told the family, “There is a large area of swelling in the brainstem; we suspect a mass.” 

Andrew piped up cheerfully, “My mom has a mass!” He was admitted to the Pediatric Intensive Care Unit that evening.

In the months leading up to diagnosis, Andrew’s parents noticed he struggled to play the piano, he fell regularly, and he had difficulty walking. The week of diagnosis, it was challenging to wake him from sleep. Hours before diagnosis, he developed a facial droop, and he vomited.

During that first hospitalization, Andrew had surgery to place a port and began six weeks of daily sedated radiation treatments. Over the next couple of years, he would try multiple chemotherapies. 

Andrew kept family and friends chuckling by saying humorous things, often without realizing it. He played the violin and the piano, sang perfect alto, and loved his family and all the people at church. He enjoyed trying new foods (including sushi and too much wasabi), making elaborate snack trays with homemade dips (including guacamole and hummus), and working with his mom to create his own croutons and vegetable soup. He dreamed of playing basketball for Michigan State and hoped to be a pastor like his daddy one day. 

Young Andrew participated in an imaging study at the National Institutes of Health. Close to the end of his life, he considered a phase I medication study, but chose not to participate when he realized he would not be able to swallow the many pills required. During the last couple weeks leading up to his death, Andrew enjoyed tastes of a delicious meal at The Melting Pot, special seats to see The Nutcracker, and a final outing to the Thanksgiving Praise Service at church. He died peacefully, surrounded by family, on December 4, 2009; he was eight years old.  

Data is critical for the advancement of childhood cancer research. At a time when understanding of DIPG biology was limited, the Smiths arranged to donate Andrew’s tumor tissue immediately following his death. From Andrew’s tumor cells, removed during a limited autopsy, came one of the world’s first DIPG cell lines, which has been used in research resulting in multiple publications. The Smiths also enrolled Andrew in The DIPG Registry where his information contributes to what scientists know about DIPG today. 

Andrew’s cancer, and the lack of available data, compelled his mother Sandy to become an advocate for postmortem tumor tissue donation: providing information and support, connecting families to research, and helping to facilitate logistics. She has partnered with ACCO’s Ruth Hoffman on several projects: Understanding the Journey, A Parents’ Guide to DIPG, A Parent’s Guide to Enhancing Quality of Life in Children with Cancer, and “Advocacy: Helping Others Understand What Children with Cancer Need” for Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. She has also published in Pediatric Blood and Cancer and presented on the topic of tumor tissue donation. As a tribute to Andrew’s life, Sandy coordinates the pediatric volunteers at Sparrow Hospital and enjoys being involved in pediatric palliative care and hospice training for nurses, social workers, and other caregivers. She looks forward to sharing their family’s cancer story with Michigan State University medical students each fall. 

Over ten years after his death, Andrew’s life continues to have an impact on the lives of future healthcare professionals and the way they practice. And Sandy shares, “His cells and information continue to be used in research all over the world. That, Andrew would say, is really cool!”  

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here. 

“As a bereaved parent, you want the data to come back to you with answers. I want to know one day that they have figured out exactly what happened and what her diagnosis should have been overall and that they can treat and cure another child in the future.” This is a quote from Kynslee’s mom, Kirsten when asked about the importance of data.

Kynslee was diagnosed with large B Cell Lymphoma in September 2017. Prior to getting diagnosed, she had other health conditions which made her story complex. At eight months old, Kynslee was diagnosed with neutropenia, a low white blood cell count. Kynslee was also diagnosed with a chronic EBV infection and a lymphoproliferative disorder.

Since Kynslee had an unknown immunodeficiency, it made her unresponsive to chemotherapy. Doctors tried various protocols before sending Kynslee in for a bone marrow transplant in August 2018. There was no data to show how to treat Kynslee, so doctors did the best they could. By the end of September, she was experiencing trouble breathing and scans revealed that her new stem cells were attacking the cancer. Kynslee was put into respiratory distress, intubated in the PICU on October 3, 2018 and remained sedated until she passed away on November 20, 2018. 

Kynslee’s case has been reviewed by three major hospitals which have researched her specific immunodeficiency and gene mutation as it relates to her cancer.  Without the data, doctors were not able to accurately treat her. Interestingly enough, Kynslee’s sister and father also have a genetic mutation called NFKB1. Nuclear Factor Kappa B Subunit 1 is a protein coding gene and currently a study is being done on a patient in Germany with the same deficiency and cancer. Since this patient decided they would share the data, more information is coming out about this particular diagnosis. 

Kirsten said, “I encourage parents to advocate for their child. If you don’t agree with the doctors, don’t be afraid to get another opinion. You MUST advocate for your kid. Some doctors will come in thinking they know everything, but need to step back and look at the bigger picture.” 

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here. 

“Everything happens for a reason. My tumor was found for a reason. I can walk, talk and not have any side effects that prevent me from day to day life for a reason. I speak out about my experience because I was fortunate enough to recover in just a few months. Now that I am fully able to do stuff, I am meant to speak out,  especially for those who are in treatment and those who have passed away. I’d like to represent them and speak out on their behalf.”

Grace is a 12 year old survivor of germinoma, a germ cell tumor that pressed on her pituitary gland. She was diagnosed at the age of 9 years old and was put on treatment immediately to eradicate her tumor. Treatment consisted of chemotherapy and proton radiation. When chemotherapy ended, Grace made a sign and proudly now it still hangs in the hospital for others to sign when they finish chemo. 

When ACCO talked to Grace about her data, she exuded confidence as she talked about her diagnosis and what data meant to her. Although no tissues were collected from Grace specifically, she would have donated if she could have. “When I am older, I plan on donating. I want to help people, the more the better.” Her data was collected by her doctor who works with the COG. 

Because Grace’s tumor was pressing on the pituitary gland, her side effects were typical for this type of tumor location. She experiences excessive thirst, a thyroid deficiency and nose bleeds. Other than that, Grace is healthy and progressing well. She takes a shot nightly to help with growth and is very proud to report she’s grown four inches this year! 

Data influenced the diagnosis and treatment of Grace’s tumor. First with the median range data that came out of the diagnostic lumbar puncture tumor markers and then specifically when it came to surgery or not. Based on the statistics of outcome globally of treating this type of tumor with and without surgery the decision was made to not perform surgery right from the start. Data also informed the navigation of the proton therapy. Grace explained that she was given a special mask when she had proton therapy, which she proudly showed off during our interview. Her ‘Wonder Woman’ mask helped keep her head in place while she was undergoing therapy. Imagine being surrounded in a room with several doctors all making sure that your head is in just the perfect position – if not, they could hit a nerve and render you blind. Talk about nerve wracking. But, of course, Grace is a trooper and didn’t even need sedation to undergo this 45 minute procedure. 

Grace has since gone on to advocate for childhood cancer at several speaking events including the State of the Union. She was invited to visit the headquarters of Mevion in Boston, Massachusetts to speak at their annual meeting as well as see how they make the proton therapy tools. In 2020, Grace was to appear at the Proton Radiation Conference, however due to COVID-19, she was unable to speak at the engagement. Her case is used in various conferences to talk about how proton radiation works to help pinpoint the tumors with minimal issues. 

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here. 

“As parents, you want your child’s life to matter and their legacy to live on forever.”

In February, 2016, Mason was diagnosed with T cell acute lymphoblastic leukemia. Survival rates for childhood ALL in first remission are now approaching 90% while ALL accounts for about 75% of leukemia patients. When Mason was originally diagnosed, he followed the intermediate protocol by Children’s Oncology Group (COG), until relapsing in July of 2017. His initial relapse occurred in his spinal fluid and after much discussion, his doctors advised that the best path to take was to receive a bone marrow transplant. After completing his first month of 1st Grade, In October 2017, Mason had his bone marrow transplant.  Unfortunately, Mason relapsed again in December. After fighting like the true warrior he was, in March 2018, Mason passed away from respiratory distress among other complications of his cancer. 

Being treated at Children’s National in DC, during the course of Mason’s treatment, Keli remembers that the doctors would come in from time to time asking if they would like to participate in a research study. Keli recalls spending time understanding the specific studies and always being willing to have Mason participate.. “We were willing to do anything that might help the team help other warriors like Mason and learn from his treatment.” 

Data became incredibly important to warriors like Mason because without it, some treatments would not have improved and changed. Childhood cancer researchers benefit from the donation of blood, urine, tissue and other samples as that data can potentially help in life saving treatments. 

When Mason’s battle with cancer ended, Keli, Mason’s mother, shared that “when he passed away, we had a choice to grieve privately to deal with the emotions we were facing or to be out there with the community supporting us. Giving back is my therapy. Carrying Mason in my heart he keeps me moving forward spreading joy in his memory.” Part of “giving back” to the childhood cancer community was started while Mason was in treatment, participating in research studies and what we carry forward is his hope and joy to other warriors and families..  

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here. 

David Jr. and his family are on a mission to help raise awareness for childhood cancer, one day at a time. When David Jr. was diagnosed with DIPG, diffuse intrinsic pontine glioma, his family was determined to make every day the best day ever. The family’s focus shifted to creating memories for David Jr. while advocating for childhood cancer in their home state of Kentucky.

DIPG is a type of brain tumor occuring in the pons, a part of the brain that controls many basic functions like breathing, sleeping, swallowing and regulating heart rate. It remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. David has been fighting DIPG for the past 33 months, while the normal patient does not survive more than 24 months.

Symptoms started very quickly and he was unable to roll during karate class. When his head was droopy and he started to act goofy, his parents took notice. After complaining of a headache and dizziness, the pediatrician advised David Jr.’s parents to take him to the emergency room where a stat MRI was performed. He’s been fighting for his life ever since. 

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth, David Jr.’s mother.

Alongside his mother, Elizabeth and father, David, David Jr. helps to advocate for childhood cancer. He was able to meet the Governor and Senator of Kentucky where he helped declare May 17 as DIPG Awareness Day. 

“I’ve had the great privilege of meeting David Turner on multiple occasions now, and even had the opportunity to introduce him on the Senate floor,” said Sen. Morgan McGarvey, D-Louisville. “David is a fighter and has been instrumental in helping raise childhood cancer awareness in the Commonwealth. He is a courageous fighter and an exceptional advocate.”

You can read more about David Jr. by clicking here.

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here. 

“I need my childhood. Less and less kids are going to have their childhood if people don’t raise awareness and raise funds. Stop talking and start doing. We need action.” Gabriella was just 10 years old when she said these wise words just two weeks prior to her passing.

When Gabriella was only 9 years old she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a terminal brain cancer. Doctors found that she had an inoperable tumor that was the size of a walnut. She quickly became a global advocate for kids with cancer and founded the Smashing Walnuts Foundation; whose mission is to increase awareness for childhood cancer and fund childhood brain cancer research. Less than a year after diagnosis, Gabriella was taken too soon. She was surrounded by family and friends who promised to continue her work. 

 In April 2014, the Gabriella Miller Kids First Research Act was signed into law. This Bill launched a pediatric research initiative through the National Institutes of Health (NIH). When fully funded it will appropriate $126 million for childhood cancer and disease research. To date, $88 million has been appropriated in seven consecutive years as a result of Gabriella’s mission towards childhood cancer research. This funding source sunsets in just three short years.

The Gabriella Miller Kids First 2.0 was recently introduced in the House (H.R.623) with bipartisan support. It will provide a unique, perpetual revenue source that will continually fund the Kids First Research Initiative at NIH. The monies come from existing penalties against pharmaceutical companies, medical device manufacturers, cosmetic and natural supplement industries that violate the Foreign Corrupt Policy Act. 

Take action by supporting The Gabriella Miller Kids First 2.0 bill by clicking here.

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here.