Spotlight: Libby Jones

Libby Jones’ Story:

In the Spring of 2013, the Jones family of Charlotte, NC was living the happy, idyllic life of which many young families dream.  Having just welcomed a new baby boy at the end of January, Barb and Josh were basking in the joy of a new child and 2.5 year-old Libby was savoring the role of big sister.

But just before Easter, their lives came crashing down when Libby was diagnosed with ALL – acute lymphatic leukemia.

The diagnosis was devastating to all as overnight our healthy, energetic, spunky little Libby was admitted into the hospital to start chemotherapy and begin a grueling regimen of “pokes”, procedures, transfusions that no person, nonetheless a preschooler, should ever have to face.  In July, after it had been discovered that Libby had a genetically

abnormal form of leukemia that was resistant to chemotherapy and required a more aggressive course of treatment than normal, Libby was admitted to Levine Children’s Hospital for a T-Cell depleted bone marrow transplant,  An experimental version of a traditional transplant. This was due to the fact that she did not have any matches in the marrow registry. This surprised everyone and further pushed the point that folks need to help by getting on the donor list at www.bethematch.org.

Through the most powerful full-body radiation and chemotherapy her body could endure, Libby’s T-cells (essentially the fighter cells of the body) were eradicated and replaced with her uncle Clays strong and healthy stem cells.  The hope was that her uncle’s “hero blood” would attack the leukemia in a way Libby’s could not and finally get her into a remission.   And for almost 3 months, the “hero blood” did just that.  Libby’s leukemia went into remission and everyone on team LibStrong began to breathe a careful, but blissful sigh of relief and gratitude.  Her Hair was growing back into an adorable pixie cut, her energy was increasing daily and she was that little girl again that we all knew.

But in November, 97 days post transplant (just 3 days short of Libby’s immune system recovering enough for her to re-enter the general public for the first time since transplant), Libby’s blood began to show signs of relapse and tests confirmed that the leukemia had come back with a vengeance.  Knowing chemotherapy was not a solution and another transplant not being a viable option, Libby’s parents began searching the United States for new trials and experimental treatments that could combat the stubborn beast that was their daughter’s leukemia.  A drug trial at the National Institute of Health in Bethesda, MD, that took them away from Charlotte, their baby boy and their entire support structure,  proved unsuccessful as did an attempt to become part of a new procedure at the Children’s Hospital of Philadelphia.

The search for new treatment lasted months and hope was never lost but in the meantime, Libby was enduring aggressive chemotherapy and steroid regimens in attempt to keep the leukemia under control while a long-term solution was sought.  By Spring, it all became too much for Libby’s little body to endure.  On May 8, 2014, surrounded by her family and in the arms of her loving parents, Libby passed away just two months shy of her 4th birthday.

While we all continue to mourn the loss of our sweet, beautiful Libby, we also could not be more grateful for the continued support of the communities near and far.  It is a battle that no child or parent should ever have to endure. The statistics unfortunately are far to real for Pediatric cancer. Each month an average of 14,000 children will be diagnosed with some form of  Cancer, and most will not survive their 8th birthday regardless of the remissions they achieve. Pediatric cancer receives only 4% of the budget for cancer research which is an atrocity. We must raise money and awareness for our children. Who else will?  Donating time and even more so money to these organizations like Childrens Oncology, Be the Match, Leukemia Lypmhoma society, and Cookies for Kids cancer, is the way that we can help make a difference!


To keep Libby’s Memory alive and also to support during her fight:

  • Family and Friends of the Jones family ran a ½ marathon with all members wearing all pink
  • Made Nike Air Max Pink LibStrong shoes
  • Nolen Kitchen in Charlotte, NC renamed their Spinach Pie, Libby’ss Spinach Pie in her honor
  • Libby’s father, Josh Jones was the #1 overall fundraiser for 24 Hours of booty which raises money for Levine Cancer institute and Livestrong here locally. He raised $360,00 and his team in total raised $870,00. www.24hoursofbooty.com
  • Asics paired with Cookies for Kids Cancer to make Asics called Gel Noosa Tri 9’s and donate $$ to every pair bought – want to order your own pair? click here!
  • Cookies for kids cancer helps people throw bake sales all over country and gets local support to raise money from businesses.
  • Alex’s lemonade stand-Million mile challenge. www.alexslemonadestand.com
  • The Jones family raised money and donations of over $20,000 to help change the  oncology clinic at Levine Childrens to an even more bright and kid friendly place after being there at least 4 days a week.
  • Interested in becoming a bone marrow donor or if you’d like to see more information, please visit http://bethematch.org/