United we stand.

 

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!ecole4

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 turnJet d'eau 2013-0469 (2) 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.”

 

Are you sick of all this cancer stuff?

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.