Wednesday, February 4, 2009

The Unwritten Rules

For the record, we are still watching Sydney's leg. She did not say anything about the pain yesterday. That is a good thing. Unfortunaely, Lynley was being sneaky and under the guise of massaging Sydney's leg, she caused Sydney to flinch when she touched the area of concern. I don't have an answer. We will see what happens today.

On another note, I really do need to finish a conversation that I began with myself yesterday but which never made its way to paper. I think as I grow older I am becoming less and less able to be completely unbiased. However, as I continue to watch children in the neuroblastoma world, I become more and more frustrated. I am less able to be completely unbiased when I am continually confronted by contradictory data and reality.

On the other hand, I don't want to ever provide information to other parents which is not fact. I have always provided them with all of the information surrounding and issue and allowed them to make their own decisions without my bias. Honestly, I am often left frustrated because many make decisions based on the factual data which I still truly believe is the wrong decision. I know, how full of myself am I? What right do I have? Who says that I know what I am talking about? None the less, I continue to see the same patterns. Can I guarantee that, if they went the direction I believed in, the outcome would be different? No. But, I can tell you that more do well. I have seen it too much to keep my mouth shut anymore.

There are certain unwritten and unproven rules about neuroblastoma that impact survival. They are unwritten because they are unproven. They are unproven because (a) there is no way to prove them in the real world , (b) nobody agrees on the rationale behind the successes or (c) no one can agree on how the successes should be measured. In other words, both sides have validity. Both have concrete arguments behind them as to why one way should or would be better than the other or vice versa. But, for some reason, one path always seems to do better than the other.

It is a dilemma. I hate it. I can't stand it.

So, for this reason, I have decided to start writing about the unwritten and unproven laws of neuroblastoma treatment.

Oh, yes, it is controversial. But, I offer this. I will still show both sides of every issue. I will provide all of the negative and positive research support. But, for these, I will also point out the intangibles - those things that can't be proven but certainly seem to have an impact. I will also share what I have seen as opposed to what is known. Furthermore, I will admit my bias.

Take it (and me) with a grain of salt. But I just can't keep my mouth shut when I believe it will help our kiddos.

I am finding that purpose can be compelling.


Anonymous said...

Don't do it. Don't give in to the dark side and provide "advice." Stick to what is known.

I say this with your best interest at heart. I know you have good intentions, but the last thing you want to take on is the responsibility of giving parents advice on what they "should" do and then having to face them if things go terribly wrong.

Let them make the decision that is best for them, their children, and their families with their doctors. Don't give them someone else to blame if the outcome is not what they expect.

Just thought you might want another perspective.

deb8able said...

Mark I am so thankful NOT to be in the position personally to need advice on this disease, but as someone who has talked to you personally about Baby Charlotte I can tell you that after what you have been through and the research you have done and the conferences you have attended and been a part of, I would trust your opinion on this as much as any doctor. I understand how you would not want to be responsible for making a decision for another family, but there are doctors out there (and I watched Jennifer deal with them) who don't have a quarter of the information that you have. Please do not stop talking to these families, sharing what worked for you and giving out the newest information. If the situation is anything like what Jennifer went through with Charlotte the local hospital had no clue how to deal with Neuroblastoma and wanted to do procedures on Charlotte that were completely unnecessary and very risky. You may not have MD after your name, but you know this disease better than a lot of people who do.