Changing the conversation

(Lyssa Schmidt) #1

My nephew was diagnosed in 2014 with stage 4 neuroblastoma. He’s through cancer treatment (chemo, surgery, radiation) but was admitted again in spring after his stomach burst … So he’s back on his feeding tube.

Anyway, it’s been a long couple years for my family. My first daughter was also born a month early 3 days before my nephews diagnosis, so while he fought in on the HOT unit my daughter spent a few days in the NICU. Rough couple months.

Anyway, throughout my nephews cancer treatment and still now people will randomly ask “so how’s raiden doing?”

I know they mean well, but that’s a loaded question. It always makes me cringe. Inside I’m thinking - well, he’s not dead. He’s on a feeding tube. He doesn’t quite have the physical capacity of most kids his age. His stomach is dotted with scars and lines. He talks about his “tubes” and “the doctors house.”

But, if we consider where he was at diagnosis, then good? But if we compare him to his brother, well what? And to that point, no one ever asks me how his brother is doing.

Anyway, I brought this up to my family and they all agreed they dislike getting asked that question. We launched a nonprofit based on our experiences and would love to launch an awareness campaign about this question - but couldn’t really think of an alternative.

Are we just stuck with It because of the situation?

Thanks, and best wishes to all families fighting neuroblastoma.


(Sam Saffron) #2

I am not the best person to answer this cause I have only been living with this monster for 10 months, someone like @Amy_Hansel is probably much better suited to answer it.

On one hand if someone asks me “How is Shalev going?” its kind of annoying to answer and super loaded. On the other hand if they do not ask and know about his condition it seems very inconsiderate. Why are they not asking how Shalev is doing? What is wrong with them? Don’t they care?

So I simply take “How is Shalev doing?” to mean, “Just letting you know I have been thinking about Shalev and wish him the best”, I normally answer with a “He is doing well”, or “He is doing OK” depending how he is doing. I don’t get into any details unless its with super close friends.

But yeah, it is awkward and can be devastating for people that have lost a child to this monster and catch up with a long lost friend or acquaintance.

(Sophie) #3

This question is quite difficult for us too (my child has a relaspsed NB). I think it’s difficult for both part indeed. People don’t really know how to react, what to say, what questions to ask or not… They probably want to let us know they’re thinking of us but don’t want to bother us or be intrusive.

By the way, I think there are two different situations. The ones that say “how is he doing?” juste like “hello” and don’t really want to know. To them, I only answer he’s fine and there is never any further question. And the ones that really care (not always the closest). This time I explain a little bit where we are at this point, more or less depending on how they react and if they ask questions.

There is not a unique answer. Let’s imagine how we would react if we were those people… or if we met friends experiencing an other type of difficult time.

(Kyle Matthews) #4

If you feel the person genuinely cares, and simply is asking the question the wrong way, I’ve always felt we have a bit of a responsibility to educate on better language or more compassionate ways to broach a conversation. Depending on how heartfelt the person is, or how close we are, this could be saying “it’s hard for us to answer that question, because it’s an emotional subject which can change multiple times a day. We do try our best to keep our [Facebook page / blog / CarePages / etc] up to date.” or “He/She’s got cancer. It is hard some days and beautiful others, and both often. A better question is, [insert whatever is valid for you and is a comfortable place for you to talk about what’s been going on if you’re open to at the moment.]”

We’ve found this in many, many questions. We lost a son, Ezra, to neuroblastoma, and have another son who has cerebral palsy from being born at 26 weeks (while Ezra was in treatment for nb). There are similar questions we work to educate others on in that world. Like “what’s wrong with him?” which we answer with “nothing’s wrong with him, but he has cerebral palsy. He’s stubborn and a ball of joy.”

Of course sometimes people are just clueless and you do the “fine” thing @Sophie said. :slight_smile:

(Parker Moss) #5

This is an interesting one. I have thought about it a lot because during the 4 years of very difficult treatment that my daughter has been through, we have had the whole kaleidoscope of reactions:

  • As you state, people constantly ask us how Vanessa is, which makes it difficult to even go to the supermarket without having 3 conversations about cancer… But they are showing that they care, even if their method is a little clumsy;
  • People get very nervous about asking - a friend of mine who is a senior financier in the ‘master of the universe’ category took me to dinner at an expensive restaurant to discuss our situation and he was so nervous that I could see his hands shaking as he used his cutlery… And I found this endearing. He was out of his comfort zone and trying hard.
  • My friends know that I am an atheist yet many constantly refer to prayer, and paradise, and being wrapped in the love of Jesus, and that I should trust in the Lord to deliver my daughter out of harms way etc etc. I honestly find this all deeply irritating and it gives me a burning desire to lash out, but I know that their intentions are entirely good and this is how they process our anxiety, so I accept their response entirely and am touched that they are wrestling with the cruelty of the universe in their own special way.
  • I have people who try to help my making random connections… The number of times I’ve been introduced, unsolicited, the the mother of a another dying child with a totally different disease like cystic fibrosis or a congenital heart defect, or to a random surgeon or physician on the other side of the world… Who has nothing to say to me and I have nothing to say to them… But again, the intentions are good and I accept it that way.
  • I have friends that try to fix the problem by insisting repeatedly that I must travel to CHOP immediately or I must start taking Cannaboids, or I must visit Dr Burzynski, or I must use infrared therapy and have Vanessa become a vegan… Again, this is rather goal orientated, and it tends to assume that I haven’t done any of my own research with much more thoroughness and commitment that they are ever likely to have done, but I get it and I’m touched that they’ve invested in trying to think about the problem and fix it for me. It’s a kind of commitment, even if a slightly naive one.
  • There is one reaction however, that I do not and will not accept, and I would be interested to know if others have shared this experience: I have two very close childhood/school friends that attended our wedding, know my daughters well… And since I announced Vanessa’s diagnosis in 2012, they have metaphorically crossed the road to avoid me and my family. These are people that I would see regularly and speak with regularly and in both of their cases, I have not had a single email, phone call, visit, Facebook like, or any reaction at all since the day Vanessa was diagnosed. I think they both must have deep seated psychological reasons for this, but I find their lack of ability to overcome their personal challenges and to reach out to a friend who, at times was really on the brink and in desperate need, to be totally unacceptable. For a few years this ate away at me and I considered confronting them, but I’ve put this to bed now because my friendship is equally totally revoked on my side, as they have failed at the first hurdle of basic friendship in my book. There is no return path into a friendship with me, and while I was bitter in the past, I have now severed that branch in my life and I no longer feel the pain of the relationship breakdown.
    I make the last point, not to express bitterness, but to demonstrate that there is a real spectrum of reaction to a cancer diagnosis in a child… From deeply involved and constantly enquiring, to total abdication of friendship. Your question was focussed on people who are over attentive, sometimes in clumsy ways. My advice is to take all if this as intended… Even if not to your taste, it is the best and only way in the moment that they can express their concern… And they are trying hard, often far outside their comfort zones. Be thankful for all these people, and be attentive to the people that go the opposite way, because they are the real failures of friendship.
    This was longer that I expected. I hope of some value.

(Kyle Matthews) #6

Parker, these are great examples and generally the take I have on things.

We, too, lost many friends through this, and it was sad. I actually had one person who later apologized for this behavior and was pretty vulnerable in explaining how he couldn’t dwell on cancer in a kid, how he was ashamed he had felt that way and knew it wasn’t right, and how he felt terrible and wanted to apologize.

There’s plenty of opportunity when we’re in a strong place to educate people on how best to show their support to folks in our position. I didn’t always do that, but sometimes I do. I know there’ll be another time that person is in the same situation, and maybe they’ll be even better equipped to support then.

(Katie) #7

Tough question.

“How was your weekend?” was a rough question for the first year after diagnosis. “Oh, W spiked a fever and we spent it in the hospital” or “good, then I took W to the hospital last night to start round x of immunotherapy. Spent the night and when hubs arrived, I left for work.” Seemed pretty routine and real but colleagues were just shellshocked.

We bought a house as treatment wrapped up. I recommend it. Easy smalltalk! :grin: and even better - we got pregnant with #3 and had a baby! :astonished:She was born the week before W’s one year off treatment scans. Seriously, it felt like people who were afraid to talk about cancer finally felt like they could talk I us!