ATRT

Chase loves baseball. So when he was diagnosed with an atypical teratoid rhabdoid tumor at just 2 years old, his parents used terms from his favorite sport to explain something no child should need to know — cancer.

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Three months ago we learned that, after a year and a half of no evidence of disease, Chase’s latest MRI showed new growths. Chase, who turns 5 on Friday, went for another MRI yesterday. His mom wrote this update after hearing the results. Learn more about Chase.

As they await the MRI results, Chase watches his dad assemble a Transformer.

Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t — just couldn’t — do this right now.

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At 6 years old, Issy has twice fought — and survived — one of the deadliest types of childhood cancer. As his mom, Lori, explains, his survival has come at a cost.

Lori with her son, Issy, while he was in treatment for a brain tumor.

Childhood cancer entered our life that quickly when he was 13 months old. Five years later, I have finally accepted it will never leave.

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Chase was 2 ½ years old when he was diagnosed with ATRT, a rare and deadly pediatric brain tumor. With limited treatment options available, Chase’s family moved forward with what they believed to be the best shot.

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After 14 months of fighting an aggressive pediatric brain cancer called atypical teratoid rhabdoid tumor (ATRT), Chase was in remission. He finished chemo last October and finally had his port removed in June. Then, last month, Chase’s family received some unwelcome news. His mom, Ellie, shares this update.

Chase in the clinic.

But.  How that one little word changes the tone. Chase’s attending neuro-oncologist’s voice never wavered as he went on to tell us that for the first time since a January Thursday in 2013, Chase’s MRI is not clear.

There are several small growths in and around the original tumor site.

They were not there three months ago.

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The Ty Louis Campbell (TLC) Foundation is joining St. Baldrick’s to fund pediatric brain tumor immunotherapy research. Cindy, co-founder of the TLC Foundation, shares why this partnership is giving them renewed hope.

Cindy and Lou Campbell founded the Ty Louis Campbell Foundation after their 5-year-old son, Ty, died of a brain tumor.

Hope fueled my passion and gave me the strength to care for my son during his childhood cancer treatment without coming undone at the seams. Without hope, I would have grieved his loss for over a year before he actually took his last breath.

And, without the hope for a cure that I continue to strive for 21 months after his loss, I don’t know that I would find the will to get out of bed at the dawn of every new day I face without him.

Like every parent who hears the words, “Your child has cancer,” I hit the Internet the second I learned of his diagnosis, a rare pediatric brain tumor called atypical teratoid rhabdoid tumor (ATRT). I had such tremendous hope that my Ty would be one of the 20% that survived the devastating diagnosis over five years, and that he would be one of the 10% that didn’t relapse. We nicknamed him SuperTy with certainty that his super strength would prevail.

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Two years ago, at the start of his childhood cancer treatment, Chase had a port implanted under the skin of his chest as an entryway for chemotherapy, medications, and nourishment. Last month, he had it removed — a milestone for any child with cancer, but especially for one who beat the odds of a highly fatal brain tumor diagnosis. His mom explains what the presence of this device has come to mean.

Chase with a catheter in his port.

We took a moment to absorb the words Chase’s attending doctor was speaking. Even with the concern of relapse and all that comes with an atypical teratoid rhabdoid tumor (ATRT) diagnosis, the port could and should be removed.

This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years.

It was the first thing in and will be the last thing out. We’ve had it placed, and replaced, and replaced again and again. We’ve fought to keep it, repair it, and protect it. We became trained and comfortable in the procedures to sterilize it and triage when there was a problem.

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In August 2012, Chase was diagnosed with a rare and deadly pediatric brain tumor. Chase is now 4 and participating in a St. Baldrick’s-funded children’s cancer study, and his scans continue to show no evidence of disease. Chase’s mom, Ellie, shares his story.

Chase was diagnosed with ATRT, a type of brain cancer in children, when he was 2.

The joyful doctor laid the small newborn baby on my chest as the oxygen raced into him and a tiny scream, that first sound, echoed in the room. This small, headstrong baby, born with so much fight, would be named Chase.

Two years, seven months, 18 days, and about 13 hours later, Chase’s older sister would run into our room in the middle of the night and tell us that Chase wouldn’t stop moving in his bed and it was keeping her awake. He wouldn’t stop because, as we quickly discovered, he couldn’t. He was having seizure.

Within minutes, I lay on an ambulance stretcher, one hand holding my headstrong baby and the other clutching an oxygen mask to his precious face.

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Many things made Anna, Anna. Her giggle, her blue eyes, her smile, the way she would kick her feet when she crawled towards the stairs. I can still envision her waving her fingers in the air and bouncing on her knees.

We have so many pictures of Anna smiling and happy. For a time, side effects from treatment stole our sweet girl from us. Many months of therapy and prayers slowly brought Anna back and she re-learned to sit up, crawl and cruise again. She would help the nurses use her central line, wiping the ends off with an alcohol swab.

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