Are you sick of all this cancer stuff?

by Nicole Scobie

Posted on June 18, 2013
Recently I read a post on facebook written by Erin Griffin’s mom, Amanda. Erin was diagnosed with DIPG last year, a type of brain tumour. Erin describes her experience with childhood cancer in this short video by The TRUTH 365, an organization raising awareness for childhood cancer. Here’s Erin speaking:

It is definitely worth watching this amazing girl speak, the video takes only 35 seconds, go ahead and watch it now, I’ll wait!

Pretty cool kid eh? I just love her accent.

Erin’s mom has become quite active in raising awareness about the lack of funding for childhood cancer research, particularly DIPG, which has not seen any improvements in treatment over 30 years. There is no cure. The 2 year survival rate is less than 10%, with an average life expectancy of 9 to 12 months. Yes, that’s right, and I know, now you’re mad at me for making you watch the video. Because you, like me, fell just a bit in love with that kid as she spoke. You felt, oh, hey, she looks great! Cancer’s not so bad!! And now you feel I have deceived you because it turns out, cancer sucks. But I have a reason.

Erin’s mom Amanda, like me, writes a lot about cancer, about kids with cancer, about research for kids’ cancer, and about our kids… who had or have cancer. About our new friends from the cancer world, who’s kids are still battling, like 4 year old Zoé, who is being treated at the same hospital where my son Elliot was, who is battling her third relapse from neuroblastoma (follow Zoé here, and I’ll be posting more all about her later!)

One of Amanda’s friends recently complained on facebook about the frequency of her posts about childhood cancer: “I find the constant reminder of child cancer everyday too much to deal with, yes my kids are fine but I can’t be made to feel bad about that, sorry!!”

I read this and a vague feeling of unease crept over me. Because I know I’m like Erin’s mom. And so far, none of my friends have said anything about it. I think I must be truly lucky to be surrounded by people who support me so completely. But I do wonder if any of you out there are starting to get sick of all this cancer stuff I go on and on about?

If so, here’s the deal: I’m sick of it too! Let’s make it stop! No, not by shutting me up, or Erin’s mom, but by stopping cancer!

Because once you enter the cancer world, there’s no going back. You can’t pretend it didn’t happen and just go back to the way life was “before”. Even for all of you, who entered the world with me, life has changed perhaps ever so subtly but regardless, you can’t turn back the clock now.

Is Erin’s mom trying to make her friend feel bad because her kids are fine? Seriously??? The truth is that her friend is in denial, she doesn’t want to hear about cancer because she wants to retain the illusion that it can’t happen to her, or to her kids. If she can hold on to that illusion, she can feel pity for Erin, and her mom, and the other unmentionable kids out there that she also doesn’t want to know about. But it’s not her problem because her kids are fine and she is guilt free about the fine-ness of her kids.

I didn’t know this before, but now I do: cancer is the leading cause of death by disease of children. My son got cancer, and is in remission because we got lucky and his cancer was treatable, because someone (see my last blog about Sydney Farber) cared enough to keep searching. Erin’s cancer has no cure, but people do care enough to search. We need to support those people. In the 1950s the New York Times refused to print an ad for a breast cancer support group. The subject was too distasteful. And plus, there’s THAT word (you’re wondering, was it the word “breast” or the word “cancer”? Me too!) Back then most women who got breast cancer died. Now the survival rate is over 85%, and people proudly wear the pink ribbon everywhere. October being international breast cancer awareness month, major monuments are lit up in pink lights to raise awareness. Don’t get me wrong, this is so incredibly great it makes me want to jump for joy.

It makes me think of this quote by Margaret Meade: “Never doubt that a small group of thoughtful, committed people can change the world; indeed, it’s the only thing that ever has.” But childhood cancer still remains in the shadows, and research is largely underfunded. Drugs like Ritalin, for kids with ADHD get more funding than cancer. I think we can change that. The TRUTH 365 made that short video of Erin, and also a ground-breaking documentary you can watch here, which just won THREE EMMY AWARDS!!! People are starting to notice that yeah, cancer sucks, but there’s something we can do about it! Together, we can make childhood cancer something not to be embarrassed about, but to be aware of and conquered. Remember, people used to die ALL THE TIME from bacterial illnesses like strep throat, or cuts that got infected with the tetanus bacteria, for example. And then someone invented antibiotics! And now we don’t even think about it anymore, how this horrible, embarrassing thing, bacteria, could attack us anywhere.

Is it sad and tragic that cancer attacked our kids? Yes. But we don’t want you to be sad. I don’t want pity, none of us do. I want your support. We need to raise awareness and increase research. Why? Because it could have been you. As you read this post, one more child is diagnosed. One more family enters the cancer world. At some point, it will hit close to home. For my friends and family, thank you. I really appreciate how you have joined me in this, the feeling of “strength in numbers” is why I feel we will succeed. A cure for DIPG, for example, has got to be one of the top priorities.

Don’t pity Erin. Listen to her. And join the cause, not out of guilt, not out of pity, but because it’s the right thing to do. Let’s turn September gold for childhood cancer awareness this year.

Amanda Erin Griffin

Original Post – May 24, 2013
I am writing this post to ask anyone who is offended by my posts in spreading childhood cancer awareness to delete me from their friends’ lists if they feel offended or uncomfortable with it. I don’t want anyone feeling they have a duty to stay in touch if the constant reminder of childhood cancer is too difficult for them as adults to deal with. There have been a few posts about this on news feeds, not directed personally at me, which I’ve ignored, but the following personal message I received on Monday from someone whom I grew up with sent me over the edge, the day before Erin’s MRI.

”with respect Amanda I will put anything I like on my page and nothing I dislike! ……. ……but I find the constant reminder of child cancer every day too much to deal with, yes my kids are fine but I can’t be made to feel bad about that, sorry!!”

I don’t post things to gain sympathy, that doesn’t help me or any other child with cancer or who will be diagnosed in the future, I raise awareness in the hope that one-day childhood cancer will not be a TABOO subject that people turn away from, but support and make a stand.

Just so that everyone understands, any awareness I raise about childhood cancer is unlikely to help Erin as it takes years for awareness to impact on funding and cures. I do it because the hurt and trauma I have gone through is the worst thing that could happen to any parent, friend, aunt, uncle, cousin, grandparent and I wish for this to change in the future.

I have deleted about 50 people from my friends’ list who don’t support me and I’m sure I’ve missed many out. I won’t be offended whatsoever if others who struggle with daily reminders of childhood cancer delete me. Everyone is entitled to their own views and I’ve realised that not everyone thinks like I do regarding the pitiful scenario of childhood brain cancer being the largest killer of children and the least funded.

Childhood Cancer needs your support and advocacy, not sympathy! Parents, relatives, and friends of children with cancer don’t need pity, we need support to raise awareness.
Thanks xxx