Alternate treatments

One hot topic these days for us is alternate treatments. Everyone from family, friends, other acquaintances are giving us lots of different ideas on homeopathic methods, supplements, and whatever else is out there they have heard from friends, friends of friends, infomercials, internet articles, etc.

Our current treatment plan, ACNS0331, is one of the standard treatments in the US to treat standard-risk medulloblastoma, with a combination of surgery, radiation therapy & chemotherapy drugs. We also know that both radiation & chemotherapy has long-term, significant side effects, that are very difficult to think about. I'm stating the obvious here, but cancer isn't one of those ailments that one can "heal" from or even cure. Sophie is undergoing these terrible treatments, (it's still gets us that the warnings for the chemo drugs sound so dire, so hazardous, yet it's going into her little body) to kill the cancer cells, but the effects of these things are so deflating to think about. I so wish there was another way.

 There are so many different things out there that people swear by. CoQ10 (my dad), Vitamin D, antineoplastons (Burzynski), organic food, vegan, juicing. ok fine, so some things are legit, but part of me can't help but to think that some of these things are just a product of people overthinking, and/or opportunistic entrepreneurs preying on people's fears.

It's tough, of course we want to do the absolute best for Sophie, and reduce toxicity as much as possible. But we don't have the energy or time to explore every single option or treatment out there either. This is why we more or less trust our doctors. It's a balance, we can't always just take their word for it, and we need to be Sophie's strongest advocates. Also we know that people's suggestions most always come from genuine concern and good intentions. I read a lot about other parents of kids with medulloblastoma and they seem to spend hours on hours doing research into supplements, causes, cures, ideas, everything. Sometimes I feel bad b/c I don't have the desire to do all of that, perhaps due to laziness, partially due to the fact that I don't want to know more about this terrible disease than what I already know. Maybe we put too much faith in our doctors. Maybe there will be a time in the future when I dig deep into what's out there, and aggressively seek information and/or changes to Sophie's standard treatment.

Back to some of these alternatives...my thought with most of these is that if these alternate treatments were that effective, wouldn't they be more mainstream? And wouldn't the effectiveness be proven in randomized, placebo-controlled, double-blind, clinical trials? Sure it seems like the time to bring a drug or treatment to market is years, not months, and there are many hurdles. But isn't that the way it should be? If we don't have a cure for cancer, why would we want to mess with treatments or drugs that are unproven? For sure, I would not want to "experiment" with any drugs for Sophie, even if there's a promise that it might reduce toxicity or pain. A few anecdotal stories on how this or that worked wonders for someone is not enough for me to believe it's a cancer killer.

So those legit things like organic food, juicing are ideas that cannot hurt, but other supplements or drugs are a bit more unknown, and most likely things that we will stay away from.

Your opinions are always welcome. We know everyone has good intentions in all of this. Please understand that it can be quite overwhelming for us, and hopefully this will give you a peek into our thoughts. Please continue to email us, message us, tell us what you think.