Christmas use to be my favorite day of the year. Waking up and seeing my children so excited and spending the day with family was the best. Then Brandon got sick. Our last Christmas together was in Texas at the Ronald McDonald House... a long way from our family and certainly not what we were accustom to. Never the less it was still a great day because Santa found my kids and the three of us were together. When Brandon passed everything changed. Every day was different, especially holidays. Marissa (Brandon's sister) and I started a new tradition by spending Christmas, Brandon's birthday (12/22) and her birthday (12/23) somewhere other than home.
A few months ago at a fundraiser for E.V.E. Santa was up for auction for Christmas day. Knowing first hand what it's like to spend Christmas in the hospital and at a Ronald McDonald House I bid on Santa for Sparrow Hospital and won. For the first time in nine years we came home for Christmas.
Struggling a bit this morning wondering if I made the right decision of coming home a song came on the radio "Thank God for Kids". At that moment there was no more doubt.... Brandon was with me.
Marissa and I prepared bags of toys for the 20 kids that were admitted and took Santa his sleigh today. Many of the children got pictures with Santa and some even got family pictures. One mother with an infant said she didn't think she would have any visitors today let alone Santa! She was so grateful. The kids were really excited as well as the parents and/or grandparents.
Marissa and I could not do this alone. With that said, I wanted to extend a HUGE thanks to my family and Brandon's Defense supporters for not only helping us find a cure for cancer but for providing Marissa and I the privilege of bringing smiles to children that really "need" a reason to smile. It was truly an honor to make Christmas a little more special for these kids and the parents that were at this hospital today. This experience made Marissa and my Christmas very special as well. I also want to thank Cynthia Meteyer (nurse at Sparrow) for all your help in coordinating our missions throughout the year and today. Merry Christmas to all and to all a good night.
Why childhood cancer research gets shortchange
Kristin Connor is Executive Director of CURE Childhood Cancer, an Atlanta-based non-profit. May 25, 2015.
The National Cancer Institute will soon announce its budget allocations for next year. Unfortunately, we expect what has been the case for many years — childhood cancers will receive only minimal funding.
Second to accidents, cancer is the leading cause of death in children. As a dependent and vulnerable segment of our society, children need our protection. We must address the dangers facing children head-on. But the National Cancer Institute has consistently failed to do this. The NCI has engaged an aggressive war against cancer, yet 96 percent of the funds its spends on the problem are focused on specific cancers which affect adults, not children. So while the incidences of cancer in children climb, and while childhood cancer destroys families and devastates communities, the federal government's resources are directed elsewhere.
Why? Because cancer research funds are driven by the number of people — of any age — who have the disease. And, of course, adults, with decades of exposures and behaviors, experience cancer in much greater numbers than young children. This approach therefore seems like the "democratic" way to distribute federal money. Yet it doesn't do much for the more than 15,700 children diagnosed each year with cancer, and the more than 40,000 children undergoing cancer treatment each year all across the United States.
But instead of looking at the number of annual diagnoses, perhaps we should consider the number of life-years potentially saved. For each child with cancer, on average, as many as 71 potential life years might be saved. That's an important factor that is not being considered when funding allocation decisions are made.
The limited research funding has resulted in an unacceptable lack of progress in drug development in the last 35 years. Since 1980, only three drugs have been developed specifically for use in children with cancer. Equally important, for many of the childhood cancers, the same treatments that existed in the 1970's continue to be used today, unaltered. Thanks to this lack of progress, the treatments we currently use to "cure" children, when they do work, are saddling them with a lifetime of chronic, difficult and sometimes life-threatening health complications. More than 95 percent of childhood cancer survivors will have significant health-related issues by the time they are 45 years old. That is almost all of them. We must increase funding for research that will lead to treatments that will not compromise the rest of a child's life. Targeted therapies, those which target the cancer cells and leave surrounding cells and organs unharmed, are extremely promising and with proper investment, offer hope of a cure without the same negative health effects today's child survivors face.
As a society, we have a moral obligation to care for and protect the vulnerable and dependent. No segment of our population is more important than our children. Children need and deserve the war on cancer to apply to cancers that affect them. It's past time for the National Cancer Institute to wage war on childhood cancers too, investing significantly more resources in saving our children and preserving their futures.
Julie Gordon, May 2015
I'm very excited to launch this new and improved website for Brandon's Defense. Although the old site served it purpose very economically for several years, this site will allow more graphics, videos and has many more options and flexibility. It has been a learning process for the last few months, however I was able to build it from scratch and I will be able to manage it in the future without any administrative cost! I hope you enjoy the new site! Stay tunned for more news, updates, additional pictures and much more information on childhood cancer and Brandon.
Did you know:
1 in 300 children will be diagnosed with cancer before the age of 20.
1 in 5 will die.
15,700 children are diagnosed each year.
Cancer is the #1 disease killer of children ages 1-19.
Only 3% of cancer research money goes toward childhood cancers.
There are currently 40,000 + children fighting cancer in the U.S.
In the past 35 years ONLY “ONE” new cancer drug has been approved for pediatric use.