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.
Nicole Scobie 
Thank you so much for writing this! Ever since I was introduced to a sweet young man named Oliver a few years back, I became an advocate for awareness and funding for children and young adults with DIPG. It breaks my heart that we haven’t done more for our children and here in the U.S., the American Cancer Society allocates less than 3% of their monies to children’s cancer. Where is the justice and fairness in that?
Thanks again for raising awareness! I’ll keep your sweet little guy in my thoughts and prayers.
Dear Nicole,
we don’t know each other, I just followed a link from a post by my friend Natalie. I’m very moved by your article. I don’t know what to say, but I wanted to say it. You’ve all my support and all my heart as you and so many others go through this. Don’t shut up, please. If I can do anything to help you keep your hands and voice going, let me know. I mean it.
lots of love.
Paula-Jane
So well said. Thank you for this post.
I must tell you that within a few moments of posting it to my Facebook page, I received the kindest, sweetest, most supportive comments from my friends. Which does not in any way invalidate your post but instead made me feel so much better anyway….so thank you for saying it.
YES! Thank-you for putting into words what I feel. You are my new favourite person/blogger. Sharing!
I have just turned 14, so am about Erin’s age. I think this girl is one of many inspirational cancer fighters and her message is so clear! We need funding and research for this horrible monster. Thank you for sharing this!
Thank you for this blog, it is spot on. Our children don’t need pity they need research and they deserve respect.
Thank you for writing this!
I keep a blog too; I think the more blogs we do someone somewhere just like you and me will get the attention it deserves- so thank you! I will keep your son in my prayers for continued health. I maintain we need a celebrity mother with visibility to really bring the attention to this epidemic that it deserves.
I especially like your comparison to bacterial infections, it gives a great frame of reference. Nicely written.
YES! THANK YOU for sharing this Nicole. I love your blog, because of it’s raw honesty. And, you hit the nail on the head. Amanda’s “friend” is naive and short-sighted. Denial is a dangerous place to be. And, what a wasted opportunity for her, her children, and all of their friends to stand in solidarity with Erin, Amanda, and the 1000s of kids like her. Us cancer mommas need pity like we need another syringe or alcohol swab littering the floor of our closets. Please! We need compassion, empathy, awareness, and DOLLARS for research.
Dear Nicole,
this is such a great post! I love every word you wrote and I’ve never read something before that describes the subject this great. Something that can explain why we read so much about childhood cancer every day and why we’re working so hard to help children with cancer, even if it makes us so sad to think about this children that have to suffer so much.
“The Truth 365” wrote: “Nicole is a Canadian expat who lives in Switzerland and she is writing about the Griffins, a Scottish family that lives in Australia. She references The Truth 365 which gives a voice to all children fighting cancer regardless of where they live.” I really love The Truth 365 and what they do and I also love that you want them to give a voice to all children, not only to the ones who live in the U.S.
I’m from germany (by the way, I’m sorry for the mistakes in my language) and I’ve startet a project together with my best friend. It’s called “Kunst gegen Kinderkrebs” (Art against childhood cancer). We sell selfmade things an give all the money we raise away to help children with cancer.
If your son has a wish of anything to play we can use some of this money to buy him something he likes and makes him feel better for a moment. Please just write me an e-mail to kunst_gegen_kinderkrebs@yahoo.de and we can try to find something he likes. We also can send him something of the things we sell. You can find us an a lot of our products on facebook: https://www.facebook.com/KunstGegenKinderkrebs or on our website http://www.kunst-gegen-kinderkrebs.de.
It really would be great if all the projects could get more international so that all this people like you and Amanda, who are such couragous fighters could fight hand in hand together.
Many greets from germany!
Ronja
Thank you so much for putting in writing the words we find so hard to put on paper (or computer :)) I have always described the feeling after Savannah’s diagnosis date for September 15, 2009 with Leukemia (ALL) that we now live in a bubble. We can see the world and everyone outside our bubble going about their lives normal and healthy while they poke their heads inside our bubble to say if there is any thing we can do just let us know, then go back outside the bubble and all’s well. There is one thing that is so simple that they can do but so very few do… that’s share this blog, share TheTruth365 video, spread awareness. But your blog sums up what I have come to the conclusion is that its too depressing and unless your inside the bubble, its a very uncomfortable subject, just too sad for people to speak about. All I know is if we don’t bring awareness and change like Breast Cancer Awareness did, then the odds of them learning the hard way , are increasing.
Your post is amazing – my son also is battling his second relapse from Wilms FH stage IV. It has been devastating but we have learned so much about the “cancer world” over the years. We too have wonderful family and friend support and are fortunate in that way and find it so sad that not all families going through this can say that. I have been energized lately by the motivation and growing movement that I feel parents and advocates have been cultivating through FB and other social media resources. To be able to be in touch with parents all around the world all uniting for the same purpose, it is starting to feel more and more not like “if” we will find a cure but “when”. Raising awareness to the lack of finding that childhood cancer research gets has become our number one priority…thank you for this amazing blog – will be sharing!!! I love your statement – this September lets paint the earth gold!!
My son died of neuroblastoma in 1987. I remain infuriated that science can come up with an abomination like Viagra, but can’t come up with a cure for childhood cancer.
I feel the same way! It’s all about what would make investors in big pharmaceutical companies money.
JonJon had DIPG and passed away at the tender age of 8 after a 17 month fight on March 30, 2015.
People have no idea what our children and their loved ones go through.
Standing Strong BECAUSE of Jon! #prayforjonjon JonJon’s grandma Janice
Well done, keep plugging. I am fortunate that no immediate family members are battling cancer. I have lost dear friends to the disease and know many fighting battles. I think each day ‘There by the grace of God’. I sing in a choir and each year we strive to raise money for Cancer research with our concerts. I am a Nurse so see first hand the battles of family and patient as they come to terms with the news they have cancer. Their future, their lives lay in the success or failure of research, past and present. Until the day we can say there is a cure for all cancers we must continue to raise funds. We are far from this point. I wish all facing their struggles the very best
Hi, Just wanted to say thank you for the post. 🙂 you see, my children don’t have cancer, yet I’m an advocate for awarness too, ever since I found Lane Goodwin and Ryder Herring I just can’t NOT look. I can not turn a blind eye to it, even though I’ve had people ask me “why do you do that to yourself, that’s torture” and I’ve had a few eye rolls about how I post about childhood cancer alot. Well I’m gonna keep on posting about childhood cancer! So thank you for your post as I found it as encouragement.
Thanks for saying it outloud. I use Facebook primarily to fundraise for childhood cancer in memory of my cousin Missy who had neuroblastoma. People can unfriend me, remove me from their feed, but I still post and post often! I shared your story on my page…even if only one person reads it…
Well said from a mom whose 14 year old as Ewing’s of the spine. Awareness, funding, cure.
Nicole,
So right!!! My niece was diagnosed with AML in March 2012 (currently in remission), and since then, I have used FB to inform and to constantly ‘raise awareness’ and try to get my own friends and family to want to learn. While most either share what I post or encourage me, or ‘like’ my post, etc… I was told privately that I was “depressing”. I didn’t post nasty numbers, raw details, anything like that. I posted facts; I’ve shared other kids’ stories; I’ve also put my own normal comments up that I used to put up before my niece got sick. I tried to balance it out a little. But I was “so depressing”. Wanna know what’s depressing? Seeing what I saw; what my niece went through; seeing every expression on my sister’s face as each thing happened; seeing my niece get so sick; there is no cure for so many childhood cancers; so many children around my niece died-families we got to know; the fact that so many people out there don’t care about childhood cancer because it’s not their kid or think it’s “too depressing” to learn about because their kid is healthy (right now)!
The nerve of this person. Like I said, I mixed it up. I know how I feel about people who bombard you with the same posts over and over again, and to be honest, I didn’t want to ‘lose’ any of my friends – I wanted them to read everything I wrote, so I mixed it up.
I thank all of the people out there who have healthy children or no children, yet, take the time out to care about our children!
Hi Tracy, Yes, living through what we who really know about it is what’s really depressing. But I really think we’re on the right track now, the chidlhood cancer community is getting together like never before to raise awareness. No giving up!!!!
Please help STOP Childhood Cancer Now!!!!!!!!!!
Is it too forward of me to tell you that I love you? Seriously. As someone who has been in the Childhood Cancer trenches as a parent and now as an activist against this monster, your words feel like my words. Thank you for sharing this! I shared it and it was shared again via my Facebook page! If we speak loudly, people will have to listen, if we raise enough money via awareness (and I am talking about scary amounts of money) we will not be ignored. Let’s make people aware, make them hear us and make a change. Preaching to the choir. U go girl!
Haha thanks Krista! I want to raise a scary amount of money too!!
This was great keep up the good fight.
Thank you so much for putting into words what we try to explain to people everyday at Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). We have granted over $4 million dollars to phase one pediatric cancer research in our first four years as a national not for profit, all with the help of supporters hosting local fundraising events. We couldn’t have done this, and made new pediatric cancer treatments become a reality without people like you helping to raise awareness of the lack of funding. THANK YOU!
Hi Jennifer, and thanks for your comment. Cookiesforkidscancer.org is a great organization!
What you said, I love. I feel the same way. I am a stage 4 neuroblastoma survivor. Just turned 32 yesterday! I have a lot of physical problems but nothing is going to stop me from being a voice for these precious kids!
AMEN!! To those parents who have healthy kids right now, that may not be the case in four or five years. I thought I had healthy kids until my son turned six. That’s when he was diagnosed with medulloblastoma, a type of brain cancer. Cancer doesn’t discriminate or hit by a certain age of your childhood. Yes finding cures for childhood cancers are important and if you don’t want to see it then I feel sorry for you because parents of children with cancer are trying to make sure parents like you don’t have to watch their child fight for their life and go through the chemo and radiation. That’s why we speak out.