Tuesday, May 12, 2009

What do you do?

This is one of those entries that will probably brand me forever for being full of myself. However, I run into this problem more often than I would really care to admit. With the exception of maybe 2 or 3 families, I really have not said anything when I truly felt like I should. It is always a hard decision. What right do I have?

What do you tell another family of a child with neuroblastoma when you know they are making a bad decision?

I know. It sounds like I am offering an opinion. But, I am not. What do you do? What if you know the outcome? Do you tell them? And how do you do that?

I have spent years talking to other families. I absolutely never offer any medical advice but you can be sure that I will put them in touch with experts who will. I arm them with questions to get to the truth. I try to guide them without providing any bias. That is a relatively simple thing to do. The problem seems to be that even given my best efforts they still make a poor choice.

Why do I know it is a poor choice?

Because I know the outcome. I guess I have been in this game too long and have seen too much but at some point it all becomes pretty predictable. It happens over and over. Patient with disease has treatment X. Patient responds for Y. Patient progresses. Patient marrow spent. Patient succumbs to disease. I know that sounds cold. Yet, child after child and family after family will follow this pattern. It happens every time. There aren't surprises. I guess if they know what the outcome is then it is fine to make that decision. However, when you walk into that situation with the expectation that something different is going to happen, I think there needs to be something that raises the red flag.

I don't say this to be full of myself. I say this so that others are aware. Weigh your options. Look for successes. Balance your child's exposure to toxicities. Don't just participate in a trial because someone says so. Don't just participate in a trial because some one says they had great success. Look at the outcome. The question is not how they think they responded to the first dose. The question is where is the child 1 or 2 years down the road. Did they ultimately survive? Did the therapy routinely work? At what cost? How did this one trial fit into the overall picture? What was the quality of life?

I don't ask these questions because I feel like going on a rant. I do it because I don't believe these questions are actually being raised. If 95% of kids that do treatment X die within 6 months (regardless of their miraculous responses), and 20 to 30 % of kids with treatment Y eventually end up in remission and 75% are alive at 1 year, which treatment would you choose?

Believe it or not, I can't tell you how many people I see choosing path X over path Y. I don't know what they are being told but I see them all with great expectations.

I think it was Einstein that said insanity was doing the same thing over and over again and expecting different results.

Yet, we do it. I cringe nearly everyday.

Be skeptical. Ask questions. See the proof for your own eyes.

Okay, so I probably deserve a public lashing. But, at least, this may make someone think twice.

It may save lives.

I just can't keep my purpose shut.


BigJandLittleA said...


I am not sure why anyone would want to publicly lash you for being sincerely concerned for the welfare of their children!

I think what you have written is a great way in which to reach out and tell me to really look at what is present to them!

I take your advice very seriously because you are well-educated in the matter. I take it seriously and I don't even live in this world--thank God!

Sasha German

laulausmamma said...

Mark - you have been in "this world" of Neuroblastoma for a long time, done your homework, seen many outcomes. I would respect your opinion without a doubt. You are on the kid's side...and want to see the best long-term outcomes for each and everyone. Never hesitate to try to get the parents to look at all the long term data. The proof is there if they dig deep enough.

Thank you for all you do for the families. Thankfully I'm not wishing you were around when our Katie had Neuroblastoma 25 years ago.

We are getting ready for our 8th ACS Relay for Life event...I've always had Sydney's name on our "why we are walking" poster...this year I will snag a pic of her to add. Check out our website at:

http:main.acsevents.org/goto/ChemoAmigos (or goto/Susan Pearsall)

((HUGS)) Susan