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Caroline Jones

  • Neuroblastoma

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Caroline was a joyful, silly and playful little girl who lived in Alabama with her parents. She loved all things pink and purple, dancing, princesses, going on outdoor adventures, shopping at Target, Minnie Mouse and everything Disney. She knew how to make people laugh even at the young age of 3. She brightened any room with her smile and considered everyone her friend. Despite all she endured, Caroline remained happy, reminding her family that they should be doing the same.

In October 2015, Caroline began to complain of pain in her legs and started limping, but her parents chalked it up to growing pains. A few weeks later, they noticed she had a small bruise under her eye. They brought her to the pediatrician, who ran blood tests but concluded it was nothing to worry about. Caroline's eye continued to look worse though, so her family took her to the ER. In November, they discovered that Caroline had a tumor on her right kidney. A few days and many tests later, they were told she had high-risk stage IV neuroblastoma.

Caroline went into treatment at Children’s Healthcare of Atlanta and endured six rounds of intense chemo, two bone marrow transplants and 12 rounds of radiation. Surprisingly, Caroline had clear scans in January 2016. However, during the second bone marrow transplant, Caroline developed pulmonary veno-occlusive disease (PVOD). This life-threatening complication got so bad they told her family there was nothing more they could do. They said she was not going to make it out of the ICU.

Miraculously, she made an inexplicable turnaround. As a result of the PVOD though, Caroline now had pulmonary hypertension. It was well controlled with daily medication, but because of the affliction and her history of reactions, the doctors and family decided that immunotherapy would not be a good idea. Her body had been through so much and they didn't think it could handle more. At this point, she was considered done with treatment.

In May 2017, Caroline developed bruising around her left eye. Her parents immediately called the oncologist and they were seen the next day. Scans revealed the neuroblastoma had returned. They were devastated because relapsed neuroblastoma has no cure. Ultimately, they decided to let Caroline live her days in the best ways they knew how: having fun, going on adventures and making the most of every day. Caroline passed away peacefully on August 16, 2017.

Her family feels that Caroline has left a legacy of hope and joy that her family wants to share with others. Caroline taught them there is happiness to be found even in the midst of pain and suffering.

Caroline is her family’s hero because of the strength and courage she displayed throughout her treatment. She lifted their spirits and encouraged them with her positive attitude and sweet nature.

For others facing childhood cancer diagnoses, Caroline’s mother Randie says the most important part of the journey is to find a way to make the most of each day you have. Read books, draw, talk, play or sing–whatever form it takes–spending time with your child will help everyone get through the tough times.

To them, Alex’s Lemonade Stand Foundation signifies hope that further research will provide more effective, less harmful treatment options so that other children won't have to go through the same difficult regimen as Caroline.

Information provided by Randie Jones, Caroline’s mom

Updated October 2017

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