Thursday, February 5, 2009

The Unwritten Rules Rebuttal

First off, I received great advice from 'Anonymous' yesterday. Yes, I should not go over to the dark side. I whole-heartedly agree. I am serious. Absolutely.

I should not give medical "advice." Period.

In fact, to this day I never do. My answer is always "Go talk to this expert and ask them about this.", "Ask them these questions.", "Grill them about this."

Often I am asked what I would do. I answer. But, I never, ever, ever tell someone what they should do for their child. Every decision is risk and reward and I always present both sides.

For example, we chose for Sydney to have antibody therapy. Would I do it again?

You betcha!

Is that the right answer? I don't know. I put her in regularly scheduled doses of weeks of pain for 2 and half years for a treatment that has absolutely no proof of increasing survival. In fact, if I had to speculate based on the results of the COG phase 3 trial (given what is published) one would have to assume that, if it has impact, it is minimal. Then again, if you look at the published long term German study, it does "look" like their could be some long term benefit. Maybe this is a bad example. Regardless, forget that.

Would I do it again?

I have seen antibodies kill neuroblastoma in kids - 100s of them. That is published. It does it. It kills neuroblastoma. I know you have seen it in my diary 100 times.

  1. I have seen kids with neuroblastoma.
  2. I have seen kids take antibodies.
  3. I have seen their neuroblastoma go away.

So, should I be telling everyone to give their child antibodies?

No! Resoundingly, No!

Does it work for every child?

Clearly not!

Heck, I still don't know what the unknown risks are. 15 years out Sydney may sprout mouse whiskers and develop a worse craving for cheese. On a more serious side, she could be at more risk of a late brain relapse for all I know.

But, none the less, I believe it is my responsibility to help families learn all of the facts and to make their own decisions.

To me this is not a life or death decision but rather an example of information that should be passed onto parents that regularly is not.

In this sense, I am pretty sure I am every pediatric oncologist's worst nightmare. But, I want other parents to see all sides of an issue. I want them to be prepared to ask the really difficult questions that most don't know that they should be asking - and, in some cases, that researchers don't want them to. However, they are key points and, win or lose, they are considerations that every family should be aware of. There are no guarantees, no answers, just calculated risks.

However, unlike this topic. There are life and death decisions that are equally as murky. There are things that almost no one will say in public. But, they need to be said. Ironically, many of them have been said but only by the experts themselves - the absolute best of the best. But somehow, those decisions never make it down to everyone else. It is those things I want to bring to light. I can't guarantee the golden ticket. I know that. But I can help others increase their chances. The fact is there are oncologists treating kids with neuroblastoma (that are not experts) that are making bad decisions for kids. Period. They aren't following the direction of the experts. The problem is that these rules aren't always documented. They aren't always proven. But, there are some decisions that should always be made. I want those facts to come out.

I don't want to see another child die that doesn't have to. Families have a tough enough life without their child's treatment being unwittingly sabotaged by a lack of information.

What about those that can not afford to make a decision or can not get to an expert? Those are the hardest for me. But, again, there are no guarantees. However, you have to know the options. You have to know the cost. Only then can you make a decision you can live with.

Now, Anonymous has me up against a wall but I think we are saying the same thing. So, I intend to prove it. I will let he or she decide if what I have to say is important or out of hand. Again, the purpose is to help other parents.

So tomorrow, I will write about the first unwritten law of neuroblastoma. If you think it is inappropriate, I challenge you to leave a message in my blog. I won't delete them. In fact, I will publish them for all to see. If someone makes a case that what I am doing is, in fact, hurting families I will agree (beforehand) to delete my entry. If you have a different opinion, state it. Let's get it out there. However, before you pass judgement on what I say, let me say it first.

Purpose is a powerful thing.

P.S. Anonymous, thank you.


Anonymous said...

Dear Mark,

I couldn't agree more with you. The ultimate decision has to be made by the family, after a clear and sincere consultation with the doctor, or even better doctors. But it is so crucial to have the information before hand, to know what questions to ask, what to expect, and most of all, to know what doctor and where you should bring your child.
Information is everything and can really make a change. Knowledge give us power in our advocacy as parents of NB kids.
Thank you Mark!

Anonymous said...

I think you are doing a great thing. Noone is forcing anyone to read this and take this as the end all. I truely believe the more you know, the better. If every parent said what they found to be true it would make things alot easier for parents who are new to dealing with this and looking for someone to guide them through a bit. Your dedication is inspiring and I love your daily anecdotes. Thank you for sharing what you know.
Kim from NY

Anonymous said...

I find it interesting that the NB parent, who should be trained in skepticism and knows all too well that the weight of the world and their child's life relies in their decisions, would take your advice at face value. Where you advocaate skepticism and questioning of options with doctors I think the same rules apply to advice from other people, including people such as yourself. Your shared information provides and incredible advantage to the NB parent if it helps them to question "the rules" and advocate for their child.

You're providing valuable information. It's one more weapon in the NB parent's arsenal.

I hope that your daughter's leg pain has disappeared entirely. We wish many blessings to your family.

Anonymous said...

Mark- Can't wait to see the list. I bet other parents will chime in too. Thank you for all that you do. I've learned so much from you and no one else is doing what you are doing. You have made me a better advocate for my son so please keep on keepin on. I never thought you were giving medical advice, only informing parents to ask the right questions.

Anonymous said...

I admire you for your desire to put those unwritten rules out there. The fact is, there is not a NB expert at every children's hospital in the country....and yes, there are oncologists out there making bad decisions for NB kids. We as NB parents need to know the right questions to ask as early on in the process as possible.

I eagerly await your first post on "unwritten rules"!

nbloveclub said...

The greatest hindrances to progress in fighting this disease are people who do nothing. Thank you Mark for doing something. The wisdom you bring just being a parent of a nb child is enough to make anyone stop and listen, yet you have gone above and beyond through research, hard work, picking the researcher's brains and becoming a trusted source of information for this disease. Everyone has a mind of their own when reading what you share - let them decide if it is worthwhile or not for their situation.