4 ms·
Lost my son at 12 years old in 2013 (Bone Cancer) and lost my sister when she was 15 in 1996 (Brain Cancer). The fight for pediatric cancer research funding is
by baldfat 8y ago
Lost my son at 12 years old in 2013 (Bone Cancer) and lost my sister when she was 15 in 1996 (Brain Cancer). The fight for pediatric cancer research funding is worse. If you have a chemo for kids (All of kids cells are growing which makes it much more difficult to fight cancer) it has less side-effects and is effective for adults. If you have a new adult chemo it doesn't mean nothing for Pediatric. We went over 20+ years without one new Chemo till St. Baldrick's funded chemo for Neroblastoma came out a few years ago.
Bone Cancer does have funding, from dog owners. Bone Cancer my son has hasn't had a change in survival rates in 35 years. Fortuitously people have greater hope for a cure for dogs then sick kids and are putting millions into bone cancer research and we hope that once they finally have something we can start the 10 year process of testing for kids.
We wouldn't have done the trial for bone cancer. Reason is that when your in a trial you have to leave the tumor in the body so they can see the effectiveness. Bone cancer is extremely painful and is only curable through surgery. Why would anyone agree to leaving the painful hard tumor in your kids body???
My son had a 15% chance of surviving 5 years when he was diagnosed with bone cancer (It was in his whole left femur and both lungs, bone cancer for some reason grows in your lungs so you have crazy bone cells growing in your lungs). He made it past 4.5 years, but it grew into both legs, his neck, and hip and had countless surgeries, radiation and chemo and it all sucked. That the funding isn't there is a constant thought in your brain at all times. Heck American Cancer Society (Largest on the planet) gave a penny per dollar raised to pediatric cancer research and then cut funding to kids camps and family resources about 7 years ago so they could focus on adult research. They finally agreed to stop using pictures of kids sick on their fund raising efforts. So yeah it is frustrating.
- jaequery 8y agostories like this makes me almost hate life. no kid and parents should suffer this way. I'm really sorry to hear about your loss, I hope you find peace and strength to get through the experience. I could only imagine what you might have went through, I'm sure it must have been real tough.
- baldfat 8y agoSurprisingly, if you hang out with kids with cancer you will find them incredibly upbeat and engaged in life (Most of the time. Even people without cancer have our days). Personally these events have increased my enjoyment of life and I try to not ever take a day for granted. My faith also was increased in the midst of these difficult times. Now there is still a dent in the door frame where I punched it when I almost dropped him when he was in hospice and needed to go to the bathroom. I leave it there to remind me how mad I got and how much it sucked (We usually remember our past by remembering happy times and forgetting negative times), but for the most part it has made me a and my family better.
- rocmcd 8y ago> So yeah it is frustrating. 'Frustrating' doesn't do enough justice, based on your story. I'm terribly sorry for your loss.
- sandworm101 8y agoYou touch on the twisted point about medicine for dogs: there are often lots more treatments for them, at least as many as for humans. But this isnt because of funding. it is because nearly ever human treatmemt was once tested on dogs. And they arent all pets... or even sick. Sometimes the path to human testing leads through dark places.
- baldfat 8y agoNot in bone cancer. https://www.cbsnews.com/news/on-the-horizon-osteosarcoma-how-dogs-may-help-fight-bone-cancer-2/ https://www.cbsnews.com/news/on-the-horizon-osteosarcoma-how...
- ericmcer 8y agoUh no, they definitely have specific research facilities for animal treatment. We have a for profit healthcare system, and in that system it goes: Wealthy people > Wealthy peoples pets > poor people.
- baldfat 8y agoWe had the best medical experience. We had awesome doctors and awesome hospital. I have to say my son was adopted. He was a dirt poor kid who was neglected and had serious mental health issues due to his enviroment. My son got his femur replaced by one of the best pediatric orthopedic surgeons. His surgeon actually invested the procedure where they replace your femur bone instead of an removing the leg at the hip. We also got to stay at Children's Hospital of Philadelphia (CHOP) and stay at the Ronald McDonald House (This is where it actually was founded). I figure I will share this video of him since I mentioned his Mental Health issues. My kid was so resilient and he got better. His body didn't get healed but his heart and mind is the biggest miracle I have ever witnessed. https://vimeo.com/65522201 https://vimeo.com/65522201
- bachbach 8y agoSorry to hear this. It's pathetic alright. Total prioritization failure. I'm convinced that if some objective 'progress bar' existed, constantly put in front of the public's mind by media or by government diktat - then a firehose of resources would be put at the disposal of R&D, like X-Prizes for medical enterprises.
- propter_hoc 8y agoVery sorry for your loss. I lost my mother to a similarly deadly cancer two years ago, and this summer my wife was diagnosed at 20 weeks pregnant so both my wife's and daughter's lives were at risk. It is like a curse, having multiple cancers in one's close family.