Families

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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Cleaning Out the Medicine Cabinet

Cleaning Out the Medicine Cabinet

17 BOTTLES A few weeks ago, I cleaned out the medicine cabinet. That doesn’t sound super exciting, I know, but I threw away 17 bottles of expired chemotherapy and cancer related medications. Last year, these bottles were strung out across our counter at all times ready to be administered to my daughter Lexy every 4-12 hours. A lot has changed in a year. BACK TO “THAT” PLACE I’ve been reminded that fear can strike at any time. I had tried to clean the medicine cabinet after Lexy’s port removal surgery. That was months ago. These bottles were something I just couldn’t get rid of. Like some kind of crazy cancer superstition. But then I noticed seeing the bottles was hard—not only for me, but for Lexy. They took us back to “that” place. A piece of it always stays with you. You never forget seeing your child gasp for air or the sound of the alarm notifying everyone she is in distress. You...

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Rally’s Counseling Program: Healing Childhood Cancer Families on Their Journey to the Bell

Rally’s Counseling Program: Healing Childhood Cancer Families on Their Journey to the Bell

The childhood cancer journey takes an emotional and psychological toll on the whole family. For this second post in the Journey to the Bell blog series, I had the privilege of speaking to Rally Kid Briley’s mom about the positive impact of Rally’s Counseling Program. Briley was 7 when she was diagnosed with Acute Lymphoblastic Leukemia—the most common type of blood cancer found in kids. Her diagnosis date of April 11, 2018 was also her brother’s 11th birthday. Even though Briley finished treatment in September 2020, that does not mean she or her family members are back to their normal lives. Briley’s mother, Brigitte, describes her daughter as the perfect patient who never complained and always put on a brave face when asked how she was doing. Briley has a more reserved personality, and it is often challenging for her to express her true feelings. Early in Briley’s cancer journey,...

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Rally Good Meals: Feeding Childhood Cancer Families on Their Journey to the Bell

Rally Good Meals: Feeding Childhood Cancer Families on Their Journey to the Bell

Rally not only impacts the lives of children with cancer, but the lives of their whole families. I know this because I am the sister of a Rally Kid. My name is Catherine Barr. My sister, Sarah, was diagnosed with Ewing’s sarcoma—a type of bone cancer—in 2009 at the age of 12. I was 11 at the time. Sarah fought bravely for seven and a half years. She passed away in 2016. Sarah was so gentle and kind, all while being the biggest nerd. She excelled in school and wanted to pursue a career in the medical field. Her family and her faith were the most important things to her. Despite the hardships she endured, Sarah remained joyful and selfless. She is my hero and inspiration. I am currently in my last semester at Georgia College & State University. When I found out I could select a nonprofit to work with for my senior capstone project, I knew it had to be Rally! I was thrilled to have...

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Recent Posts

Families

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
Cleaning Out the Medicine Cabinet

Cleaning Out the Medicine Cabinet

17 BOTTLES A few weeks ago, I cleaned out the medicine cabinet. That doesn’t sound super exciting, I know, but I threw away 17 bottles of expired chemotherapy and cancer related medications. Last year, these bottles were strung out across our counter at all times ready to be administered to my daughter Lexy every 4-12 hours. A lot has changed in a year. BACK TO “THAT” PLACE I’ve been reminded that fear can strike at any time. I had tried to clean the medicine cabinet after Lexy’s port removal...

read more
Rally’s Counseling Program: Healing Childhood Cancer Families on Their Journey to the Bell

Rally’s Counseling Program: Healing Childhood Cancer Families on Their Journey to the Bell

The childhood cancer journey takes an emotional and psychological toll on the whole family. For this second post in the Journey to the Bell blog series, I had the privilege of speaking to Rally Kid Briley’s mom about the positive impact of Rally’s Counseling Program. Briley was 7 when she was diagnosed with Acute Lymphoblastic Leukemia—the most common type of blood cancer found in kids. Her diagnosis date of April 11, 2018 was also her brother’s 11th birthday. Even though Briley finished...

read more
Rally Good Meals: Feeding Childhood Cancer Families on Their Journey to the Bell

Rally Good Meals: Feeding Childhood Cancer Families on Their Journey to the Bell

Rally not only impacts the lives of children with cancer, but the lives of their whole families. I know this because I am the sister of a Rally Kid. My name is Catherine Barr. My sister, Sarah, was diagnosed with Ewing’s sarcoma—a type of bone cancer—in 2009 at the age of 12. I was 11 at the time. Sarah fought bravely for seven and a half years. She passed away in 2016. Sarah was so gentle and kind, all while being the biggest nerd. She excelled in school and wanted to pursue a career in the...

read more

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