Friday, April 30, 2010


Throughout our journey I have had the opportunity to meet hundreds, if not thousandsm of families of children with neuroblastoma. It is always bittersweet. First, it is always heartfelt when meeting another child with neuroblastoma. For me, there is always an immediate kinship. I have an immediate bias towards anyone that has a child with neuroblastoma. In fact, outside of my own family they are my highest priority (don't tell any of my clients that.) But yes, sorry, this is one of those times where there is an "in" club. The unfortunate problem with that is that to be a member of the "in" club you have to have a child with neuroblastoma. That is the bitter part.

It is also bittersweet because families generally fall into a couple of categories. They come into our lives because they have a question about neuroblastoma. We talk with them. We develop friendships. We invest in their lives. Eventually they finish treatment. If they are lucky, they finish and enter back into the real world. Other than a yearly update to their website this is about all we will ever hear from them again. It is sad to see them go but something we hope and pray for each and every child with neuroblastoma. On the other side are the families of the children who eventually succumb to the monster. It is with these families that I typically develop the strongest bond. In fact, on any given day there is a flood of memories and thoughts of many kids that have gained their angel wings. To this day, there is not a single candy or coke machine that I see where I don't think of Paul Saxon looking for change.

So many memories.

Bitter sweet.

All of these are tough for me. Alive or in heaven I think of them all often. I wonder what they are like today.

However, those are not the most bittersweet for me. This distinction is reserved for a group of children whom, from the very beginning, I know are never given a chance. These are the children with neuroblastoma that are treated by oncologists with little or no knowledge of neuroblastoma but with an ego that makes them believe they can. These are the toughest for me. These are the children that are treated at hospitals with no one who specializes in neuroblastoma. Let me be clear. I don't care where you are treated. I don't care if you have taken your child to Sloan. I don't care if you take your child to a NANT institution. I don't care if you take a child to a hospital that has an oncologists who participates on the COGs neuroblastoma committee. In fact, as long as you are being followed by an oncologist that specializes in neuroblastoma it can be a good decision. Any one of these will give you a chance at survival. Anyone of these can give you hope.

But again, that is not the group I am talking about.

The group I am talking about are the group of patients that don't do any of those things and elect to be treated by an oncologist without any real neuroblastoma experience - and there are 1000s of them out there. These are the ones that are ultimately bittersweet because these are most often the kids that succumb to the disease when we all know that they shouldn't have. They die because their tumors weren't resected when they should have been. They die because they weren't treated with the most effective drugs, they weren't transplanted when they should have been or they were transplanted when they shouldn't have been. They die because their drugs were administered properly. They die because they weren't followed or scanned appropriately. These are the kids that almost always succumb to the monster. Worse yet, it wasn't because their disease was that bad, but rather, because the treating oncologist didn't follow the procedures that we know maximizes survival. Ultimately, it costs lives. AND it happens often.

Patients all over are treated contrary to what neuroblastoma specialists have proven to maximize survival.

These are the ones that frustrate me. These are the ones that bother me the most. In the last two weeks 4 children with neuroblastoma have passed - 3 of which should have been prevented. 3 of which died, not because of the nastiness of the disease, but because of the incompetence and poor decisions of the treating oncologist. While I can't guarantee that any of them would have survived forever, I know they should not have died now.

It is horrible.


I hate it.

This is another reason why purpose is so necessary.

1 comment:

Susan said...

I totally get your frustration.

We kind of had it both ways...initially treated incorrectly by some very wonderful doctors, sent to transplant with a tumor. I took matters into my own hands after that and went to NY where I am sure 3F8 gave us more years with Nathan. I wish I had followed my instincts to reject transplant but we were initially told the tumor was gone and then told they didn't get it all 1 day before admission. Surgery was done out of order too. I don't beat myself up because I really feel in my heart that the outcome would have been the same ultimately, but if some different decsions were made we might have had even more time with him.

The system is just not set up for success.