- They are not preventable, and do not result from lifestyle choices.
- They are difficult to detect. Children are often diagnosed with cancer AFTER the tumor(s) have metastasized. If you even suspect something is wrong with your child, you should ask for a urine test ASAP. And I do mean ASAP. The earliest the cancer is caught, the better.
- They are the leading cause of death by disease in children.
- There is no cure. The treatment protocols that doctors come up will make your child even sicker. Things will get worse before they get better (if they do indeed get better).
- Neuroblastoma is the deadliest pediatric cancer. You would think it would be top priority with researchers. It is not. There has been no “therapeutic advancement” in over 30 years. Yes, that is right. Get mad, people.
- Neuroblastoma is the most common cancer in infants.
- Because there is no “system” for detecting neuroblastoma, most children are not diagnosed with it until they are at stage 4, with metastases to other parts of the body.
- Despite aggressive treatment, the survival rate of children older than one year with advanced stage neuroblastoma is ONLY 30%. I was one of the lucky ones.
- The current neuroblastoma relapse survival rates? 0-10%. This does vary from institution to institution.
- Therapies being used on children are often ADULT hand-me-down agents that are overly toxic for smaller patients. These agents are NOT aimed at treating the unique pathology of children’s cancers.
- The number of EFFECTIVE therapies available to all children with deadly cancers is 0. ZERO!
- There is no standardized treatment for these cancers. More often than not, the only available treatment option children have is participation in clinical trials. True, someone has to do it, but what in the world have they been doing for the past 30 years? My whole lifetime? Sitting at their desks twiddling their thumbs while children die every single day?
- THE STATUS QUO IS UNACCEPTABLE. Our children deserve better.
- In today’s clinical research community, progress is much to slow and promises are rare. Why are we dragging our feet? These are CHILDREN we are talking about. Babies. Just babies. Are their lives worth so little to us? I think this says a lot about what kind of world we are. A selfish, greedy world with no thought to anyone or anything but ourselves and our pockets. It is not right.
- The average time for a therapeutic discovery to be tested o humans is 5-7 years
- The possibility of discovering appropriate therapies is limited by accepted research standards (eg. large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria).
- Basic research generally receives more funding than clinical or any other research. Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans.
- The usual players (researchers) are not in the position to solve the problem alone.
- Pediatric oncologists are, justifiably, focused on treating their patients, and not on developing and prioritizing new therapeutic discoveries.
- Research scientists and academic institutions have everyday demands which prevent them from investigating many promising research ides. But of course, this can be said of everyone in the entire world. It didn’t stop Steve Jobs, or Neil Armstrong, or George Washington. And they were human too.
- Rewards in this field are given for scientific discoveries, not for the practical applications of these discoveries. Because that makes SO much sense. Let’s give out the reward before seeing if it works. These people are supposed to be genuises. Right.
- Pharmaceutical and biotechnology companies are not financially prepared to develop treatments in small populations such as children with cancer. SAY WHAT? This year, approximately 100,700 children (younger than 15) were diagnosed with cancer. If that is small, I would hate to hear what pharmaceutical and biotech companies consider large. That is 100,700 too many. And 1,370 of these children will die. 1,370 grieving families this Christmas. No statistic should be considered small when it comes to children.
- Conventional, nonprofit organizations are often NOT designed to progress therapeutic development.
- Parents are forced to become experts in their child’s cancer and treatment. Often, they are given no information about what the cancer their child has actually IS. Unacceptable. Shame on the medical community for thinking otherwise. I know doctors and nurses are human, but seriously. They should be prepared. They should be able to talk to the parents. They should not let them flounder on their own. And yet. This is what happens.
- With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research (meaning that they should be able to voice their concerns and not be brushed aside by the so-called professionals with whom they have entrusted their child. Doctors may be experts at what they do, but parents are experts of their child. I don’t know how to put it any clear than that).
- Children cannot advocate for themselves like most adults with deadly or debilitating diseases can.
- To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of curing childhood cancer. Seriously?
CHILDREN NEED HELP NOW!