On August 3, 2005, every parent’s nightmare became our reality. We learned that my sweet 6-year-old daughter, Alicia Marie Martin, had a tumor—a diffuse intrinsic pontine glioma—growing in her brainstem. It was inoperable and there were no effective treatment options. The doctors said Alicia had, at best, 12 to 18 months to live.
On the day we were told of Alicia’s illness, the focus of my life changed. Every moment became more precious. We knew our time together was limited—so limited that the doctors were able to put a number on it. Twelve months--only one more Christmas, one more new year, one more birthday, and one last summer. I wanted to treasure each second, to capture each memory and to store up enough for the lifetime I would spend without Alicia.
At the same time, as Alicia’s mother, I had to seek answers. I spent countless hours on the internet frantically searching for elusive treatment options. I sought alternative and complementary therapies. I investigated clinical trials. I spoke with doctors across the nation and made contact with other parents who were traveling, or had traveled, this road.
All the while, the clock was ticking. Every moment counted, and I resented the time I was forced to spend away from Alicia. If there had been one place where I could have found all the information I needed, think of the time that could have been saved!
Alicia Marie Martin
Each year, the parents and families of between 150 and 300 children in the United States are faced with the same news I received on that dreadful day. They are told that the child they are holding in their arms has a diffuse intrinsic pontine glioma. A DIPG is an aggressive and almost always deadly form of brain cancer. Most children live less than a year from diagnosis. Incredibly, there have been no advances in the treatment of this tumor for more than thirty years.
The doctors’ predictions were all too accurate. Alicia passed away on December 23, 2006, a little more than 171/2 months—508 days—after her diagnosis. Since then, I have devoted my life to helping the parents of other children who are facing the same devastating disease. This work is being accomplished through Just One More Day for Love, Hope & a Cure, a 501 (c)(3) nonprofit foundation. Through Just One More Day, other parents, medical professionals and I are laboring together to provide information and support for families affected by DIPG, to promote awareness, and to fund research for a cure.
Parents—like Andrew’s—who are faced with the painful reality of living with a diffuse intrinsic pontine glioma can log on to JustOneMoreDay.org to find information specific to this brain tumor which is different—in many ways—from other brain tumors. Just One More Day’s website outlines treatment options, links to current research, provides coping tips for parents, and offers other helpful resources.
A few facts about pediatric cancer will underscore the importance of Just One More Day’s fundraising efforts.
* Source: American Cancer Society’s Facts and Statistics
The responsibility to fund the search for the cure falls upon us. We cannot rely on the government or private industry to take action. We cannot allow another thirty years to pass with 150 or more families each year receiving the news that their child has a DIPG and that there is no hope. Just One More Day is looking for generous corporate sponsors, caring volunteers, and donations of any size.
Please, consider involving yourself in the quest to provide a future for these precious children—our children.
If you have any questions or would like more information, I encourage you to contact me at (321) 698-8538 or at JustOneMoreDav@cfl.rr.com.
Alicia’s Mom & President of
Just One More Day for Love, Hope & a Cure
Just One More Day for Love, Hope & a Cure is a 501 (c)(3) not for profit organization
Last update Nov. 29, 2008