The past few two months have been very busy. Martin mentioned a little while back that it seemed I hadn’t written anything for quite a while. Actually, what he said was “Hey, how come you never write anymore”. (“Hey” is our nickname for each other. You know, like some people say “honey” or “babe” ? We say “hey”. It’s all really quite romantic over here.)
Well, he has a point, but his question is not entirely accurate. I write a lot. In fact, I’m writing all the time.
I’m writing applications and letters to request funding, emails to request information, articles and emails and letters to raise awareness.
I’m writing posts for other blogs, like zoe4life.org, in French and English, or facingcancer.ca
I’m writing posts on facebook and replying to comments, and messaging people.
I’m whatsapping or text messaging roughly one hundred times per day.
But I have not, for two months, really written about what’s been going on in my life. And by that I mean, inside me, in my head. In my heart.
So here goes.
First, there’s Zoé, my very good friend’s daughter, who has relapsed neuroblastoma. Sigh. For those unfamiliar with neuroblastoma, have a quick google of “neuroblastoma” and “relapse”. Then you will also sigh.
To be clear, Zoé is doing great. No, more than great, she is phenomenal. She is outstanding. She is amazing. She is exhausting us with all her energy and enthusiasm!
But inside her little body are cancer cells that just kept multiplying despite chemo, despite showing no symptoms at all. This summer she finally had a specialized nuclear medicine treatment that has shown effectiveness in these types of cancers. It was hard on everyone, not because it hurts or makes you sick, but because the treatment is radioactive and so requires the child to be in isolation for over a week… Isolation. At age 4.
And you know, I have almost never been sad about Zoé. I always feel that somehow, there are still options that could work. I think I manage to stay optimistic probably because she’s not my child so I don’t get scared about the “what ifs”, I see only the logical fact that a cure is still possible.
But emotions are strange. I suddenly felt sadness two days after Zoé was released from the hospital, when her parents could finally take her out of that room, actually touch her and hug her, when her sister was finally allowed to see her, when her mom who had been living at the hospital for almost two weeks could also go home. Why?
Because on that day, Zoé’s grandfather had to be rushed to the hospital because of sudden heart problems. And of course the family rushed to the hospital to be by his side. And Zoé’s mom sent me messages telling me what had happened, and while waiting in the hospital for the next few days, she sent me photos of the renovations that had been done on that floor of the hospital, which she had never seen before since it’s not the same floor Zoé usually goes to. Happy, cheerful messages showing me how nice these renovations were coming and wouldn’t it be nice if they did our floor too.
Seeing those photos and getting those cheerful messages almost broke my heart. I’ve never told her that so she’s reading this now too. It was because of the strength she showed, the ability to see the positive no matter what, the resilience, the optimism… And maybe the fact that I wish my friend could send me happy photos of she and her kids on vacation somewhere… She has spent so much time at that hospital that a renovated floor is exciting.
Now, run and hug your kids once before I continue.
Zoé and her family have a very full life. They are lucky, because despite everything, Zoé still has no symptoms. She can do anything any little 4 year old girl can do.
I met another mom, who’s daughter had AML leukemia, last February. I’ll call her Sara, just to protect her privacy. She was three years old and had relapsed. Now google “AML” and “relapse” and sigh.
For the next several months I kept in touch with Sara’s mom, through the ups and downs (and believe me the downs were very, very down). Sara was not “lucky” like Zoé. Her cancer was so aggressive and combined with various infections , that from the moment I met her mom, Sara never left the hospital.
The medical staff at the hospital, no, in all of Switzerland, did everything to save Sara. They went above and beyond. They tried everything, considered all options, attempted the impossible.
You know, when I was one, a man walked on the moon. Since then various missions to space have taken place, all costing in the billions of dollars. When you consider the species called human beings, and it’s abilities and limitations, one of the basic facts is that we are stuck on this earth. We can’t fly. We can’t go somewhere where there is no oxygen. We can’t live very long without food and water. And yet 44 years ago we figured out how to fly to a place extraordinarily far, where there is no oxygen, food or water. And one of us took a step. For man and for mankind.
You would think that the knowledge and resources required to accomplish this would make us capable of conquering anything. Anything. Especially something as small as a leukemia cell, floating around inside a three year old girl, right here on earth. But destroying a leukemia cell is not nearly as exciting as walking on the moon. And so our governments spend way more money on astral bodies than on three year old bodies. New things are discovered in space! Fun!
Leukemia is not new. The type Sara had was certainly not new. But these little cells floating around inside her body, right here on this earth, were too big a challenge.
And not for lack of trying. Not for lack of courage. I believe it took all the courage in the world for her parents to make the decisions they made. All the perseverance in the world for the medical team to keep fighting for her life, and in those last moments when everything started to go wrong, and the team scrambled to stop the cascade of failing organs in a desperate attempt to get control, for her parents to finally say stop, that’s enough. And have them take out all the tubes and wires so they could hold their daughter one last time and tell her it was ok to go.
Zoé’s mom and I helped plan Sara’s memorial service.
So that was last week.
The last week of September, childhood cancer awareness month.
The month of September has been going gold all over the world. Tony Stoddard, Cole’s dad, was instrumental in orchestrating this movement, with all of us in the childhood cancer community tuning in to his facebook page to see what was going gold next. Before he died, Cole said to his dad “I’m not going to grow up to do anything”. I almost cried just writing that sentence, it is so hard. But he did do something. His dad, instead of shutting down in despair (like I kind of worry that I might have done had it been my child), decided to take action. To turn September gold in honour of his son. In honour of all our kids. And tomorrow’s children.
He, like Neil Armstrong, took that first step.
September was gold. And it wasn’t just that buildings and landmarks, bridges and ships were illuminated, it wasn’t just that almost every state officially declared September as childhood cancer awareness month. It was more than that. It was bigger than that. Because in September, we came together. We had a clear goal and we all worked toward it in our own way, in our own parts of the world.
We were uniting in ways that had not happened in the past.
Last week started for me with the incredible high of watching the Jet d’eau in Geneva turn gold for childhood cancer awareness, hit an all time low with Sara dying the next day, and a few days later I found myself in Denmark on Saturday at my father-in-law’s anniversary party and started to notice something odd. There, out of the corner of my eye, I spot a gold ribbon. No, I must be imagining it, seeing gold ribbons everywhere. And yet… wait, there’s another. A child runs by. Another. I suddenly realized, all the children were wearing gold ribbons. My mother in law had arranged it, and gave a beautiful speech about childhood cancer awareness month. (In Danish, might I add. And yes! I understood it! Well, most of it. Almost all. Ok I’ll have to ask her for a copy of the speech). The point is, I suddenly felt that even with the terrible low of the week, we were moving forward. Elliot was the only child in that room who had had cancer. But all the people in the room were now uniting against childhood cancer.
Today we are October first. Breast cancer awareness month, where everything goes pink.
And yeah, let’s just say it, we’re all a bit jealous. Because it seems so easy for them. Pink is everywhere, from batteries to eggs to dolls and pink races and events all over the place. Much of this promotion started in September, “our” month, which, let’s just admit it, made us feel slightly angry. Oh who am I kidding, some of us went right off the deep end if anything pink was visible before midnight on September 30th.
But their battle to attain this level of…pinkness, was hard won. They have fought to get to this point and we should applaud and support them. I’ll be donating to this charity: http://www.metavivor.org/index.html, this year, because I can trust that all the money I give goes to where I want it to go. Plus, they have nice scarves. Christmas gift shopping and supporting a good cause.
I’ve mentioned it before but here it is again: in the 1950s the New York Times refused to print and ad for a breast cancer support group. Why? Because it had “that” word.
How far we have come.
So let me be clear. If you are a woman and have 7 friends, one you is going to get breast cancer. So look around the table the next time you are out at a girls night. And one out of every three women who gets breast cancer will have metastases into vital organs, for which there is no cure.
We can support the pink, applaud the pink, embrace the pink… And here’s an idea: how about we imitate the pink? Why not look to them for guidance as they have forged this difficult path, that we can now follow by watching how they do it and doing it ourselves? We can even make sure we avoid any pitfalls and mistakes , ensuring our gold always supports organizations which are financially beyond reproach!
The saddest thing we could do right now is to let the negatives overwhelm us. We can’t all have the same opinions. We don’t all believe in the same things, think the same way, support the same issues. As I like to say to my husband, “You’re entitled to your wrong opinion.” 🙂
Let’s keep the momentum of the last month going, and stay united.
Cole’s dad took a step. A huge, incredible step. Imagine what he will attain next year, if this year was only the first small step for man
Next year: one giant leap for mankind.
Who’s with me here?
I realize this blog post touched on some pretty heavy topics. Oh go ahead and say it, I’m a downer sometimes. So to make up for that, I’ll leave you with some advice from Cole. His last words to his parents were a message, maybe an order, for all of us:
“Smile. Be happy.”
11 thoughts on “United we stand.”
Thank you for sharing!! I love reading your posts! We celebrated & promoted your success in lighting the Jet d’eau gold in Thomasville, Georgia! This was our 4th year of raising awareness for Childhood Cancer, & we’re planning for bigger & better efforts in 2014. Keep up the fight! We’re on your team!
Great post, Nicole. I’m a neuroblastoma mom and fighting right alongside you for ALL of our kids.
Thank you for getting me “fired up” for next year’s effort. I have been focusing this month on planning what direction we will take in our mission to increase childhood cancer awareness in 2014. Standing on the sidelines has left too much time to think about my hurt and grief. I went to sleep last night thinking, “I did my best to help get the ball rolling last year; maybe I’ll sit back for a while and let others carry the load.” This morning the first thing I did was open my e-mails and there I saw your blog post. Once again when the pain tries it’s best to knock me down someone comes along and lifts me up to keep fighting. You’re words gave me the kick in the pants I needed. Fired up again for the next part of the battle in 2014!
Tony (Cole’s Dad)
And please know that YOU give us strength to carry on the fight to GO GOLD!! Our son was 8 when he was diagonsed and after 29 months of treatment he battled and won his fight against against ALL & Burkitts!! At 11yrs of age, Frankie and all of us, continue to fight on for your baby COLE , for our FRANKIE and for all precious children caught up in the nightmare of Pediatric Cancer.
Check out this link: http://usafootball.com/blogs/americas-game/post/7587
With so much love and gratitude… we’re fighting this fight alongside you, with you, for you, for COLE , for Frankie and for all!!
*this is where the crowd erupts into applause and cheering while jumping to their feet and I am one of them*
Once again you have spoken so well what I feel. You have brought me to tears, which is not easy these days. I have become so stoic just to survive. I wish I knew how reblogging works. I am going to blog about this post, share it on facebook, twitter…and that’s all I know.
Bravo!! I sent your blog post to my local newspaper. They printed the story of our Governor’s Mansion being lighted in gold for Childhood Cancer Awareness and of the Governor proclaiming September as Childhood Cancer Awareness Month for me – I’m hoping they’ll print this too! Your point about the billions spent for space travel is excellent and hopefully will make more people sit up and take notice – especially with the current political shenanigans going on! Thank you for a wonderful article!
Nicole, you’ve given me a new perspective on pink. I read so much in October about commercialization of the cancer culture – but you are right in that breast cancer is fortunate to have that awareness, and the backing. I hope the same comes for the gold ribbon on children’s cancer. I hope we start shooting cures all over the cancer spectrum, complex disease(es) that it is.
Thank you for giving us a peek into your head and your heart.
Nicole, thank you for sharing this with us, you write with such passion for the cause… to help our kids, you demonstrate the pitiful scenario of childhood cancer in 2013… a time in life when we should have been able to irradiate pediatric cancer, money should have been allocated differently a long time ago so our children, upon diagnosis could access good treatments which would cure their innocent bodies from disease….
With passionate people like you Nicole, spreading much needed awareness for childhood cancer, hopefully we get one step closer to having pediatric cancer seen as a priority, a big agenda item within Governments and Cancer organisations who have the capacity to allocate more funding to children…I’m not saying instead of adults as everyone is important, but our kids need to be seen as special…they need the opportunity to grow up, to have a life, to experience all the things I have been blessed to experience…. xxx
Thank you, thank you, THANK YOU for writing this. I too have friends in my life who have children with cancer….I had a case of the “get that pink ribbon away from me” this past September. But what you say is true, it was hard won, and we can learn a lot from them….