I learned late yesterday morning that Libby's six year old daughter's brain tumor is inoperable and incurable. And it is incredibly aggressive. As soon as I learned of the type of tumor (DIPG) I spent much of the day researching it. I found myself instantly in tears as I realized what this meant for Libby and her beautiful family. After work, Kevin came home and cried too. It's surreal thinking about the hell that they are going through with a diagnosis as devastating as this one.
I have no idea why such awful things happen to such good people.
Libby and her husband are some of the most wonderful people I know. How can we feel so incredibly connected to people whom we've never met in real life and are thousands of miles away? It must be because they've given us a very special piece of themselves through their embryos. A piece of both of them will forever be a piece of us. We have a love for them that I can't explain, and our hearts hurt so much for them at this excruciating time. I would give my ability to become a mother if it meant that their daughter would receive a miracle. But unfortunately I don't think God lets us barter like that. We don't get to be in charge. But if He hears me, I'm offering, Lord!!!
I feel called to help somehow but I am at a loss as to how or even if I can help this situation. I am so far away. I know they need their privacy. I am just praying. I pray every single second I can. I woke up in the middle of the night last night and prayed. I prayed as I first woke up.
I beg of you to pray too. Please pray. Please.
The one thing I can do that does comes to mind is that I can try to bring awareness to this awful disease. This disease could affect any child in any of our lives.
In all of my research on DIPG yesterday, I was saddened by the lack of funding, awareness, and research that goes into finding a cure for childhood brain cancers. As if cancer isn't horrific enough on it's own, these pediatric cancers take our tiniest and most innocent victims. It's just not fair.
I ask of you, my amazing blog readers, to educate yourself on this disease. Please, do this for me. Doctors and researchers don't know why DIPG occurs, but most importantly, there is no cure. And even if you don't have a child or know a child, a cure to this type of cancer is incredibly important to all of us for many reasons:
- Research to find new treatments for childhood brain tumors represents one of our greatest opportunities to advance cancer research in general. – The Cure Starts Now Medical Advisors
- Many experts believe that the information we gain from a cure to pediatric brain cancer may provide us critical advances in other forms of cancer, both adult and pediatric. – The Cure Starts Now Medical Advisors
- More than 359,000 people in the U.S. were living with a diagnosis of a primary brain and central nervous system tumor in the year 2000. – Pediatric Brain Tumor Foundation
- In the year 2000 more than 26,000 children in the U.S. were living with the diagnosis of a primary central nervous system tumor. Each year 3,400 new cases are diagnosed. - Central Brain Tumor Registry of the United States (CBTRUS) report, Primary Brain Tumors in the United States, 2004-2005.
- Every day nine children in the U.S. are diagnosed with a brain tumor. – Pediatric Brain Tumor Foundation
- Brain tumors are the leading cause of cancer death from childhood cancer, accounting for 24 percent of cancer-related deaths in 1997 among persons up to 19. - Report of the Brain Tumor Progress Review Group; published in 2000 by the National Cancer Institute and the National Institute for Neurological Diseases and Stroke.
- There are more than 120 different types of brain tumors, making effective treatment very complicated. – Pediatric Brain Tumor Foundation
- Pediatric brain tumors are different from those in adults and are often treated differently. – Pediatric Brain Tumor Foundation
- Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating. – Pediatric Brain Tumor Foundation
- Quality of life for survivors of pediatric brain tumors is influenced by the long-term side effects of treatments such as chemotherapy and radiation. – Pediatric Brain Tumor Foundation
- Cancer is the number one disease killer of children in America - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
- 1 in 330 children in the U.S. will develop cancer by age 20. On the average, 12,500 children are diagnosed with cancer each year.
- The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
- At this time, brain cancer research is underfunded and the public remains unaware of the magnitude of this disease. The cure rate for most brain cancers is significantly lower than that for many other types of cancer.
- According to a September 12, 2008 article by Helen Jonsen, Forbes.com senior editor, the funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.
- We may spend 3-5 times the amount of research money per patient on most adult cancer cases than we do on children with cancer.
- In general, children with Central Nervous System (CNS) cancer do not share the favorable prognosis of those with many other common pediatric neoplasms. – National Cancer Institute
Here are a some of the only charities dedicated to finding a cure for DIPG. If you can help any of them in any way, please PLEASE do.