Category Archives: Friends

My son survived – why bother pushing for research?

Beautiful boy

 

A few months ago I attended at conference on Accelerating the Development of New Oncology Drugs for Children and Adolescents. The first day was packed with fascinating, complicated presentations all revolving around the issue of how to get new drugs and new treatments available in order to save more children with cancer.

Later that evening, I sat in the bar with several parents, oncologists and industry reps, as we discussed the need for research.

Many of the parents attending that meeting had lost their child to cancer. They were there because they are committed to making a difference for other kids-  the kids diagnosed today, the ones of tomorrow.

At one point, a person (not a cancer-parent) asked me why, since my son had survived, I was so committed to advancing research.

It’s one of those questions that, when asked, feels like the answer is so obvious that you actually struggle to put words on it.

Why am I involved? Is it my place to be part of this battle?

My son Elliot was in treatment for almost a year, along with several other kids. I made good friends during those long days spent at the hospitals, friendships are forged in those difficult moments that are unlike any from the outside world.

Even my online friends, many of whom I actually met for the first time at the conference in Brussels, feel like people I have known for ages.

And it’s true, while many of these friends have lost their child, mine survived.

So I don’t have the grief that they do. I don’t have that intense pain that they all carry and hold tight within them, surviving every day, every moment, by taking one step at a time.

I feel incredibly sad for the loss of their children but to say I feel anything remotely close to what they feel would be wrong.

I don’t have the grief they carry. I am so incredibly lucky, because it is a grief that is incomparable to anything else, that I can sense and understand, but not really feel.

But I do grieve. I am sad and angry. Sometimes overwhelmingly so. Just not for the same reasons.

I don’t grieve for the loss of a child.

I grieve for them. These parents. These moms and dads who have suffered the loss of a child. My friends, who suffer, and will continue to suffer, even though they all bravely get up every day and choose to make the best of the day and try to look for the sun shining.

While I may not feel the loss of a child, I know what it is to visit a little girl’s grave with her mom. To pick a few weeds from between the flowers, to straighten the candles and dust the light snow off the little teddy bear sitting there. I know what it is to talk to someone who’s child had the same cancer as Elliot and didn’t survive. The injustice. I know a friend relives the last moments of her child’s life when she closes her eyes sometimes at night. I have another friend who is haunted by those last moments because the palliative care was not up to par. I have a friend who was by her son’s bedside when I first started to write this article (it always takes me several days to complete as I proofread several times) for his last few days, as the osteosarcoma he had could not be cured. He’s gone now.

Osteosarcoma, which has seen almost no change in treatment in decades. The same chemotherapies thrown desperately at the same cancer cells, which hold them back for a little while until they adapt and come back even stronger.

I feel such anger, sadness and frustration about this.

I don’t want to watch any more moms lose their child. I don’t want to hear any more dads talk about their daughter in the past tense. I can’t. I won’t.

I have to make a difference.

That’s why.

 

How Not to Cry

Yes, I spoke at her funeral. I wrote a text which I practiced at home and then read in front of the hundreds of people there. I looked away from the people and instead focused on her photo. I was speaking to her, after all, so I spoke to the huge picture of her smiling 4 year old face on the altar, next to the flowers and teddy bears, balloons and toys surrounding the wooden box containing her ashes.

I didn’t cry. Not even a bit.

And people said I was strong. Some people hinted that there was something abnormal about me. Emotionless? My husband would probably laugh at that. Martin has to preview movies and tv shows before I watch them in case they are too sad or upsetting. I frequently am told “Oh I found a great new TV show but you can’t watch it.” We have a perfect way of sharing tasks in our home in fact. In addition to checking whether movies and tv shows are Nicole-proof, Martin also buys all the groceries, puts gas in both our cars, is in charge of the wine-supply (important!), and has developed an elaborate document scanning system to minimize useless paperwork… (hey wait a minute, what are all those papers piled around his computer over there?) I cook the food he buys, drive the cars until they are wheezing forward on fumes alone, drink the wine, and open the mail. Sounds fair enough, right?

 

My point is, I am anything but emotionless. Inside, my tears were like Niagara Falls at her funeral. But I kept it in, not out of a lack of feeling.

No, it’s just that I wasn’t there for me. I was there to support her family, and in that role, the best thing I could do for them was to be strong and hold it all in. So, I had to make sure I didn’t cry. How? It’s complicated. A delicate balance between extreme concentration on what I’m doing while at the same time avoiding any thoughts about what I am doing. So if you noticed I wasn’t really very social on that day it’s because my brain was too busy doing cartwheels. Talking would potentially have upset the delicate balance.

Now, time has passed. I’ve been to the grave a few times. I’ve re-lit the candles and swept the snow off the teddy bears and stood looking at the ground. She’s not really there. I don’t feel her presence, not like the way I do when I’m driving in the car and hear one of the songs she liked so much. The grave is a place on this earth for a person who is no longer on this earth. The grave is for us. So I try to make it look nice. But I don’t think Zoé would stay there long, anyway, there are not enough toys. The other day there was quite a bit of snow covering everything, she would have liked that I think. I bet she would have laughed hysterically and run around getting cold and covered in snow and not cared at all about the consequences.

I forgot my gloves and swept the snow off all the teddy bears and flowers with my hands and felt my fingers freeze but I didn’t notice they hurt till I was back in the car later and they started to thaw. So maybe I’m not emotionless but feelingless? Numb?

No, that’s not it. I just don’t show it. In fact, I feel a lot of sadness and anger at the thought that Zoé died . Yes, there, I said it. I know we’re supposed to say things like Zoé “passed away” or “left us” or “went to a better place”.  Does it make it feel less harsh, less upsetting, to not use the word “died”? But that’s what happened. She died and it’s totally, completely unfair and it hurts. It’s just a word. Whether you want to say passed away or died, it comes down to the same thing. She died and we didn’t so we’re left here with her teddy bears and toys. And she’s somewhere else, probably having loads of fun because she just was not the type of person who sat around thinking about the difference between the words “died” and “passed away” and whether or not you should or shouldn’t cry at funerals. I bet if Zoé had lived she would have been the type of adult who never put gas in her car and drove on fumes, because she just had too many other fun things to do to stop. And maybe that’s why it feels so unfair, because we don’t get to share those moments with her. I would love to have had the chance to run out of gas with adult Zoé.

But I guess there is something to be learned from all this (other than the sudden realization that came over me when I wrote that last sentence that maybe some people are just born without the ability to notice the car gas level, which means that running out of gas is actually not my fault but a true genetic predisposition). There must be a lesson in all this because I don’t always feel sad and angry, often I’m happy when I think about Zoé, because she existed, and because through her I made some new friends. Even though there is tragedy in the story, there is also happiness.

You could say the lesson is to live in the moment and treasure all the time you have together because you never know when it could end. And that would be true. But I’ve tried that, and it takes a huge amount of energy to always live in the present moment. And it’s just not always possible because sometimes you need to plan for the future. For one thing, in our home, if I stopped planning for the future and chose to live in the moment we would be eating a lot of raw meat. Many children in this home would be wearing clothes that are dirty and several sizes too small. My older boys would have to wear shoes that have holes in the front for their toes to poke through.  I would not be able to see my husband at his computer behind the piles of paper and things surrounding him. (hey wait a minute… it’s already like that!) And of course if I didn’t think of the future ever I would probably be sitting here pregnant with my 25th child. (Oh I almost had a little heart attack just at the thought.)

So no, I just can’t live in the moment all the time. And I do appreciate all the time I have with all the people I care about, but sometimes I also appreciate being alone.

So what the lesson? Zoé, are you listening here? Any advice? (I know it’s an ironic thing to write because not only was Zoé not able to read yet but she didn’t speak a word of English. But I like to think that when she left her body here, she became a multi-lingual intellectual. I still think she’s running out of gas in her car up there though. Some things can’t change.)

Ah, the answer does come to me. A thought sent from “above” or just the logical answer to my question? Who knows.

Fun. Zoé always chose fun. That’s the lesson.

 

They say life is not measured by the number of breaths you take but by the number of moments that take your breath away. So maybe I didn’t get to drive around with Zoé in a car with no gas (why do I envision us like Thelma and Louise in that description?) But I did have some fun with her, I am even proud to say she once insisted on coming over to my place to be babysat when her mom had an appointment. And we did have fun.

In the end, you probably only regret the things you chose not to do, not the things you did. So while we’re here let’s live like Zoé and have fun.

So when I’m gone, I hope someone passes by my grave and keeps it pretty too. But I won’t be there. Not enough toys.

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.”