Did You Know

Big Data and Childhood Cancer Research

Big Data and Childhood Cancer Research

After being born and living in Turkey my whole life, I came to the US for college to study biological sciences at the University of Chicago. When the laboratory research internship I found for the summer of my first year was cancelled due to COVID-19, I joined a resume match program of my school’s Career Advancement Office, which matched students with employers based on experience and preferences. It was initially through this program that I matched with the Pediatric Cancer Data Commons (PCDC) and started working as their undergraduate summer intern. Later, this internship extended into a part-time job, and I worked with them for nearly a year. Previously in high school, I had worked with a non-profit organization called Cancer Warriors (Kanser Savaşçıları) for more than a year. Through this organization, I had visited the pediatric hematology and oncology departments of an...

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My View Looking Forward

My View Looking Forward

Before cancer, I was never a morning person, but now I love waking up in my home with the entire family under one roof. Most nights, I wake up around 3 am in a panic. Did I dream up this terrible nightmare that my 4-year-old son had cancer and had four inches of his leg cut off? I rush to Gus’s room to check on him and sometimes lay next to him. I tell him I love him to the moon and back and that I am so proud of him. I know these moments are what matter most in life. Right now, it is easy to get sidetracked by arguments over vaccine hesitancy or mask mandates that are still in place. I wish everyone would slow down and view this as an opportunity to help their neighbor. Believe me, it could be so much worse. I have watched a handful of families lose their children to childhood cancer and have been humbled and blessed by their friendship.  We share the common bond of childhood cancer....

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Discovering the Reality of Childhood Cancer Treatment

Discovering the Reality of Childhood Cancer Treatment

On our diagnosis day, we were told that our four-year-old Gus had Ewing Sarcoma. What doctors didn’t know was the particular type or variant he had. Tumor Sequencing Tumor sequencing is vital, as some variants of Ewing’s sarcomas have poorer outcomes, require specific drugs, and prohibit the use of other drugs. The variant determines the treatment plan. Parents need to know the type of cancer their child is fighting- and if the hospital doesn’t know, parents should demand to have the tumor genetically sequenced. As Dean taught me, “The pathology report is king.” Treatment I could go on and on about the horrors of the treatment Gus endured: scary nights when our son’s heart was beating so fast it seemed as though he was having a heart attack… or beating so slowly that he was unresponsive; the endless needle pokes for blood and platelet transfusions; the horrific bowel movement issues;...

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Gus’ Journey Through Cancer

Gus’ Journey Through Cancer

Gus, my 4-year-old son, was chasing me down the stairs on our way to the basement for our early morning workout. This particular morning, Gus jumped from the stairs onto the floor and took an extra step. Something seemed off, but he didn’t complain after he landed, so we moved on with our day. That afternoon, Gus complained about pain in his leg when his mom, Heidi, picked him up from preschool. But by that evening, he was running around again. The following morning, he was limping, though not complaining, but by night he had a low-grade fever and intense leg pain. DIAGNOSIS The next morning, Heidi took Gus to Urgent Care, and after an X-ray, they were immediately sent to the Children’s Hospital. After 24 long hours and some preliminary imaging, Heidi and I were told by a seasoned diagnostic radiologist that he was 98% sure Gus had a bacterial infection in his leg. The radiologist...

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Dear Presh

Dear Presh

Dear Presh (a.k.a. Sarah), My heart gets a little heavy this time of year. I start to wonder why and then realize that it means another year has passed since I last saw you. Last held your hand. Last hugged you. You fought Ewing’s Sarcoma with such poise, grace and unwavering faith in the Lord that I could only stand in awe. I didn’t meet you and your family until after your first battle with Ewing’s. I actually remember exactly where we met and how we immediately hit it off. I remember we laughed and laughed. From there our friendship just grew. You visited the Rally office, filmed videos and spoke at Rally events. There were Subway and Chick-fil-A lunches. There were also relapses, hospital visits and doctor’s appointments that you invited me to. There are so many Presh memories. Indulge me as I recall a few. You found it so funny that any medical procedure, while it fascinated you,...

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Social Security Disability Benefits for Children with Cancer

Social Security Disability Benefits for Children with Cancer

Navigating a childhood cancer diagnosis is difficult on multiple levels including trying to understand how and if your child qualifies for social security disability benefits. This article was written by the Outreach Team at Disability Benefits Help with our Rally Families in mind. Disability Benefits provide information about different disability benefits and the application process. How a Child with Cancer Can Qualify for Social Security Disability Benefits Cancer can be a devastating diagnosis that causes emotional and mental distress even when it is caught in the early stages and is very treatable. This is especially true if the patient is a child. If your child has been diagnosed with cancer, you will have numerous medical appointments, you will take time off work and there will be mounting medical bills. Your child may be able to qualify for Social Security Disability benefits....

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Did You Know

Big Data and Childhood Cancer Research

Big Data and Childhood Cancer Research

After being born and living in Turkey my whole life, I came to the US for college to study biological sciences at the University of Chicago. When the laboratory research internship I found for the summer of my first year was cancelled due to COVID-19, I joined a resume match program of my school’s Career Advancement Office, which matched students with employers based on experience and preferences. It was initially through this program that I matched with the Pediatric Cancer Data Commons...

read more
My View Looking Forward

My View Looking Forward

Before cancer, I was never a morning person, but now I love waking up in my home with the entire family under one roof. Most nights, I wake up around 3 am in a panic. Did I dream up this terrible nightmare that my 4-year-old son had cancer and had four inches of his leg cut off? I rush to Gus’s room to check on him and sometimes lay next to him. I tell him I love him to the moon and back and that I am so proud of him. I know these moments are what matter most in life. Right now, it is easy to...

read more
Discovering the Reality of Childhood Cancer Treatment

Discovering the Reality of Childhood Cancer Treatment

On our diagnosis day, we were told that our four-year-old Gus had Ewing Sarcoma. What doctors didn’t know was the particular type or variant he had. Tumor Sequencing Tumor sequencing is vital, as some variants of Ewing’s sarcomas have poorer outcomes, require specific drugs, and prohibit the use of other drugs. The variant determines the treatment plan. Parents need to know the type of cancer their child is fighting- and if the hospital doesn’t know, parents should demand to have the tumor...

read more
Gus’ Journey Through Cancer

Gus’ Journey Through Cancer

Gus, my 4-year-old son, was chasing me down the stairs on our way to the basement for our early morning workout. This particular morning, Gus jumped from the stairs onto the floor and took an extra step. Something seemed off, but he didn’t complain after he landed, so we moved on with our day. That afternoon, Gus complained about pain in his leg when his mom, Heidi, picked him up from preschool. But by that evening, he was running around again. The following morning, he was limping, though not...

read more
Dear Presh

Dear Presh

Dear Presh (a.k.a. Sarah), My heart gets a little heavy this time of year. I start to wonder why and then realize that it means another year has passed since I last saw you. Last held your hand. Last hugged you. You fought Ewing’s Sarcoma with such poise, grace and unwavering faith in the Lord that I could only stand in awe. I didn’t meet you and your family until after your first battle with Ewing’s. I actually remember exactly where we met and how we immediately hit it off. I remember we...

read more
Social Security Disability Benefits for Children with Cancer

Social Security Disability Benefits for Children with Cancer

Navigating a childhood cancer diagnosis is difficult on multiple levels including trying to understand how and if your child qualifies for social security disability benefits. This article was written by the Outreach Team at Disability Benefits Help with our Rally Families in mind. Disability Benefits provide information about different disability benefits and the application process. How a Child with Cancer Can Qualify for Social Security Disability Benefits Cancer can be a devastating...

read more

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