Wednesday, January 6, 2010

Relapse's lack of direction

Last night I received another phone call from yet another family who is fighting relapsed neuroblastoma. I find myself amazed by those families who feel like the receive no direction from their oncologists. I guess we have always been lucky with a team who was always willing (and found the time) to take that extra initiative. I can't say that I have always started out agreeing with Sydney's oncologists, but I can tell you that we always finished in agreement. In the end, we always made a decision together as a team - all for one and one for all - and we always understood the bare bones risks and rewards of every decision.

I can't imagine entering into a fight for my daughter's life without that type of relationship.

However, I am also very aware of that most people do not have that relationship with their child's oncologists. Some of the things I hear most often are:
They gave us a choice between option A and B but when I asked their advice they said it was up to us.
The talk was too technical and I could understand it.

(I want to be clear. I am not blaming the oncologist or the parent. I have seen both sides of these discussions. It is an impossible scenario for both sides - but that is a discussion for another time.)

Regardless, what a crummy way to come out of a meeting on how you were going to fight for your child's life.

Many, if not most, of the parents I talk to feel that they begin to feel their child's oncologist begin to distance themselves after relapse. This generally begins with "the talk." If you don't know what "the talk" is you probably don't want to know. But, when your child relapses, it is the talk your oncologist should have with you. It is not pretty and it is not comfortable. It is the second moment in your neuroblastoma journey (first one being diagnosis) when you are confronted with the very real reality of the death of your child. In this case it is worse because 9.9 out of 10 oncologists are going to tell you that your child will eventually succumb to the disease. It is the first time that you hear that your child will not survive. In fact, from the feedback that I get from most parents, they are not provided any hope.

It is more surreal than you can imagine.

It is ugly. But it is a necessary evil. I think it prepares parents with the realities that they need to make some very difficult treatment decisions. If you don't have this talk you don't ever realize the absolute stakes of the game. You may think your child could die but you don't realize the gravity of the situation. This is game time. Every decision counts. The problem is that many parents don't ever recover from this conversation. And, it seems, neither does the relationship. I can't tell you how many families feel entirely directionless at this point and I can't tell you how many feel alone and unsupported. But, it seems it is very much the majority of parents that I talk to that feel this way. This is only complicated when the parents hear the survivor stories and realize that they have more choices than just death. They begin to realize that this black and white "talk" is actually almost entirely grey. At this point though, I wonder, has the damage already been done?

It is frustrating to me because I know that there is hope. There are no guarantees or absolutes. But there are things you can control. By maximizing your opportunities there are many kids that have achieved second and greater remissions. There are families that have greatly enhanced quality of life or added months or years onto lives. The trick is not so much in doing the right thing as it is in not doing the wrong thing. You need a plan in place before the marrow has been blown away and you need a plan which not only considers the next treatment but takes into consideration everything that will come down the pike. What is needed is a completely personalize treatment decision tree. However, it takes a team that aggressively goes out there and searches for a plan that will work best for that particular child. A parent can't do it alone (although there are examples). It also takes someone with the medical knowledge and experience to evaluate which treatments are best for each child at different points in time - a person who can explain the risks and trade offs of every option in words that the family can understand.

Who has the time to do that?

An oncologist with 100 other active patients - each with different circumstances and diseases?

Does a parent have the time to learn all of the research and its implications - while caring for a child with cancer and trying to maintain a job?

There is no easy answer but it seems like the onus always falls onto the parent to do the research and to find the path.

No wonder parents feel no direction.

It is no one's fault. It isn't the parent and it isn't the oncologist. It is unfortunately a reality of the way things are.

I have got to start getting the information out to parents in a way that everyone can understand it. I have got to ask the tough questions of the experts and get the answers out there for all to see. I have been remiss.

That is the only solution I see.

Wow! So, this entry was pretty much just a regurgitation of frustrating thought.

It is good though. I have purpose and I can do something about it.


~Dawn~ said...

Mark, I so understand the frustration. We heard the dreaded R word twice. It's more awful than there are words to describe. I know far too many who wander through relapse feeling the same way. We were blessed by our oncologist (who was disliked by many parents but with whom we had an excellent relationship for whatever reason), but I've seen that's not always the norm. There is a need for a cohesive relapse protocol that is effective every bit as much as there is for up-front treatment, because until there is some breakthrough, relapse is going to continue to take our children.

Anonymous said...

The problem with relapse seems to be that each child's treatment should be completely unique, therefore a "relapse protocol" seems too narrow a road to travel. I'm speaking a bit out of turn, since we have not had a relapse happen (still mid-treatment), but I think that the key to NB is individualized, specific treatment based on the that child's tumor's makeup. Even the staging is off.. Is the child Stage IV MYCN amplified or non-amp? Diploidy or near-triploidy? Which chromosomes are deleted? Mark, you know far more about that part than I do but that just seems to be key. Parents need the histology report so they can have that information if they face a relapse, and doctors need to start using that information to treat.
Btw, I love reading about your kiddos and their adventures but it was nice to read a NB entry today. You give me encouragement!

Team Russi said...

Best wishes to the relapse families. Your passion for NB education and communication is commendable.

Happy new year!

~Dawn~ said...

Oh Anon..true. Children are unique, as are their cases especially during relapse. What I meant by relapse protocol was really a starting point, like there is during frontline treatment. So that it is less often that parents just get thrown a bunch of options and have to pick one...because that is horrible and so much stress!!!

And praying that your kiddo stays out of the R world!