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September 25th marks the nine-year anniversary of Lila’s diagnosis

September 25th marks the nine-year anniversary of Lila’s diagnosis of a multi-focal, inoperable, grade 2 glioma. There are multiple definitions of survivor in the dictionary all essentially saying the same thing:

  • A person who survives, especially a person remaining alive after an event in which others have died
  • A person who continues to function or prosper in spite of opposition, hardship, or setbacks.

In my opinion, every single child who is diagnosed with cancer IS A SURVIVOR. Some may no longer be alive, however they are survivors nonetheless.

Make no mistake about the amount of gratitude we have for Lila’s stable health and for these nine years. She is a miracle without question. Today, however, I am also thinking about the many children that brain cancer took from the earth way too soon. These children have undoubtedly survived more than most of us will in a lifetime. I am thinking about those children who did not make it to five years or even a year past their diagnosis. I am thinking of the many years of life lost- too many to count. I am thinking of the parents, siblings, families and friends who will always have a tremendous hole in their hearts because their loved one is no longer with them.

The five-year survival rate for children diagnosed with high-grade (malignant) gliomas ranges from only 15-30%. Did you know that there has never been a drug specifically developed and approved to treat malignant pediatric brain cancer? Read that again. What that means is that we are treating kids who have high-grade brain tumors with chemotherapies designed for adults and even other types of cancer all together. The odds are, these treatments are going to be ineffective, cause damaging side effects and may even cause the occurrence of secondary cancers.

Mike and I are acutely aware of how precious a stable MRI report is. This is just one of the many reasons why LBF will continue to be relentless in our quest to raise money to fund targeted research, which seeks to find more effective, less harmful, individualized treatment options for kids like Lila. Today, instead of asking for nine new supporters in honor of Lila’s nine years, I am asking as many people as possible to become 11for11 Supporters . We are asking for $11 a month. That’s less then many people spend on lunch each day. As Childhood Cancer Awareness Month comes to en end, please join us to honor and memorialize the many survivors we know, living and deceased. Thank you for supporting Lila and all the work of the Lilabean Foundation.

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