Monday, April 12, 2010

A new type of neuroblastoma counseling

I had a new experience this weekend. I had the privilege of not talking to the family of a child with neuroblastoma but, instead, talking to the friends of a family of a child with relatively newly diagnosed neuroblastoma. This was also unique in that the family of the child was not around. I can not say that I have ever been in that position before and I must be honest that I really enjoyed it. I regularly talk to friends and family members when they are all together but I have never done so when the family was missing. This presented many new opportunities for discussion that have never previously been possible. Honestly, I don't know whether I was a huge success of a catastrophic failure - only time will tell. But, I must be honest, when I found myself in this situation I tried an entirely different approach.

I began by asking myself. If I had to do this all over again, what would I want all of my friends and extended family to know? What thoughts and memories of this conversation would I want them to remember and take with them? What is it that they absolutely have to know, that they likely would never be comfortable asking the family, and likely never find on the Internet without months or years of study?

Additionally, because the family was not around, I also knew that I had another gift not usually afforded me in my previous situations - blunt honesty. Often when I talk to friends and family of the newly diagnosed I steer clear away of statistics and the long term reality of the disease. I give a softer gentler view of the disease and I focus on the things that the family needs to know - like the fact that what they are feeling is normal. I also try to give them confidence in their direction assuring them that the path that they are on is the correct one. If they are trying to make a decision between one path or another, I provide an unbiased view of both options and try to establish that, in many cases, there is no proven direction. In essence, I focus less on facts and cold hard brutality (lord knows, they are already experiencing this first hand) and more on lifting them up with confidence and assurance. Best yet, I can have these conversations without any statistics.

However, coming back to an environment where there are no immediate family members around, I do have more liberty.

And liberty, I took.

I wanted the friends to know the gravity of the situation. They naturally have questions about statistics and aren't afraid to ask for them. But, in my mind, a simple survival statistic was not enough. I want them to appreciate the length of this journey and the fact that while there effort was nice and thoughtful now, it would be needed the most in 9 months, a year or two down the line. When the newness wears off is when most leave and begin to wonder why they don't just "get over it", I wanted them to know that there was no getting over it. It was something that would now be a part of who they were. It would be something that there really never was an end to. It would be something where true friends were measured by the presence not at the beginning of the journey but in the middle. I also wanted them to know that while many believe that he was sick and that he would eventually get better, with neuroblastoma the real threat to his life really occurs in years two and three of his journey.

In the end, I left most with the information that I thought was most important. I believe I left impressions of not only the seriousness of the situation but the long term nature of it. They now know that induction, transplant and maintenance are just a battle in a much larger war and they are merely at the beginning of a long life altering and mind mending journey. Like I said, I don't know for sure the impact of my words. I can tell you that all of the people I spoke to seemed genuinely appreciative of my time and my words.

I only hope that my time will translate an already well organized and dedicated group of friends into a supportive one that will remain with them through the long hall and will know what to say when times are the toughest.

Time will tell but I think this might be a good thing. I can honestly say that they left with the information that I would have wanted my friends and family to have.

I guess this probably seems like a strange entry to those of you that have never had a child with neuroblastoma or some other serious long term life threatening condition. It may not seem like that big of a deal. However, I can assure you that standing on this side of the equation we all wish you just knew.

I am going to watch how this plays out but I am strongly considering putting together a guide to supporting a family with a child with neuroblastoma. Thoughts?

I found a knew way to exert my purpose.

5 comments:

~Dawn~ said...

Mark,
WOW! Amazing! What an amazing opportunity. There are so many things I wish our family and friends could have heard from the get go. I don't know if I could list them all if I tried. One thing I heard often, was that I was not thinking positively, that I was being too negative. That was because besides Kevin and me, no one really understood the gravity of the diagnosis, or the poor prognosis, and that made it really difficult for me, especially. I wasn't being negative, I was just being realistic. Others didn't get that. Anyway...all that to say, I think this IS a great opportunity! Maybe you could do a presentation on cd or dvd, or even online, for the supporters of families of the newly diagnosed?
Keep on going!!

Anonymous said...

Mark,
I just had a similar conversation. A woman I am friends with has another friend whose child was just dx with NB. She asked me - What did people do that helped? What was just noise? It felt so good to be able to lay it out there honestly, without trying to spare any feelings. I hated being told I was strong (like I had a choice?), I was also told, like Dawn, that I needed to think positively. Why? Because cancer cares what I think? I wanted all my friends to Google NB before they talked to me. Read it yourself, and then we'll talk. And yes, help down the road gets sparse. We were (thankfully) flooded with help at first. Sometimes it's harder now, that my brain is no longer so numb. The reality feels a little more harsh a year later, without the security of constant treatment. Someone just ripped off his life jacket and told him to swim - what if he sinks? People think we should be happy (and we are of course) but we're also terrified and not many people understand that.

A support for family and friends is much needed... can you tell?

Crys said...

Yes! Awesome, awesome, awesome idea and please tell them not to just assume that the child will be okay. Even if they think so, just be supportive and don't tell them you know that will survive because no one knows that.

Anonymous said...

Mark,

I appreciate your thoughts on this. The son of my best friend (our kids practically grew up together) has just been diagnosed with pancreatic cancer at the age of 25. I know they are overwhelmed as he was just "getting out in the world." Any advice on what to say or do is most appreciated. I just feel so helpless.

Katya said...

There is nothing more irritating for me than when i have to explain what NB is. Also being told that I am strong or need to stay strong for my son or pray and everything will work out is a waste of their breath. Research it and share what you learned, share others' positive outcomes, this is much more useful.