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. photo (88)

 

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.”

 

Walking down the quiet hallway.

You never know how strong you are until being strong is the only choice you have...

You never know how strong you are until being strong is the only choice you have…

Sometimes, especially late in the evening like right now, the quiet of our home brings me back to the quiet of the hospital late at night. The haunting echo of my footsteps as I pace up and down the hallways, up and down, trying to walk away from the fear.

The nights when Elliot was in the ICU were the longest, there is no small cot for the parents in there, just a chair next to his bed and a curtain separating you from the next child. His epidural, we found out later, had been wrongly placed so he was in lots of pain, the nurses did their best with morphine injections and other painkillers. Martin and I knew right away we would not be leaving his side, not for one minute. We could not control the fact that he had cancer, but he would not wake up and be alone and in pain, that was one thing we could make sure of. So we divided the nights into shifts, each of us taking turns getting three hours of sleep in a small bedroom at a local student’s residence a block from the hospital and then coming in to replace the other.

These were some of the hardest nights. The hardest days too.  Exhaustion, anxiety, fear, achingly present all the time, all the time.

Some things went wrong. Because of the wrongly inserted epidural needle, Elliot had a neurological reaction to the lidocaine which was sent right up his nerves to his brain, he convulsed and his pupils dilated into different sizes. The doctors didn’t realize it was the epidural, so they told us it was probably a brain tumor and scheduled an emergency MRI. Did I mention these were some of the bad days?

Since the nurses felt the epidural wasn’t helping with pain management, they stopped using it. His eyes went back to normal, and the doctors met in a semi circle around his bed to finally decide it must not be a brain tumor after all. MRI cancelled, and off they go. And we stand there, shaking with relief, with fear, with a “what just happened?” expression as they all head off to the next case.

All day, both of us sitting next to his bed, on the alert in case he woke up in pain, ready to pounce at the little button to call the nurse. All night, tossing and turning in the student dorm, or sitting in the dark ICU next to his bed, shivering, with a thick sheet wrapped around my legs, another around my body, watching the little red lights blink, which mean everything is ok.

And when we were both there and one of us needed to stretch our legs, or at “shift change” in the middle of the night, the long slow walk down the quiet hallways.

Being given bad news, the nurse taking me out of the room to comfort me so that I don’t cry in front of my son. Being given the good news, walking out into the hallway feeling like I’m going to fly to the moon, and seeing another mother who is crying. The nurse comes to her.

The strangest feeling as I sit here tonight in my quiet living room, is that I know there is a child in that bed and a mother pacing that hallway right now, as I sit comfortably at home.

How many other moms have I met since this adventure began? How many other kids? I’m not exactly sure, but some very close friendships have been born out of this bizarre twist in the road my life has taken.  It is such a strange feeling to be glad about the friendships I have made on this trip, and yet to know I would wish this experience on no one.  I have had laugh-out-loud moments with other cancermoms, giggling like teenagers as we talk about some of the strange or ridiculous hospital situations we have been in. I have been in tears with the same moms.

One of the scariest moments for me strangely enough involved another mom’s child. I was on a girl’s trip with some non-cancer friends to Prague, out shopping all day, going to a concert at night. I had been so looking forward to this trip, my first time away for over a year. But anxiety kept eating away at the edge of my mind, I felt I didn’t “belong” in this world. I had changed but the world had stayed the same. I didn’t care as much about buying clothes or gifts, I struggled to let go of the worrying but anxious thoughts clung to me like a heavy blanket wrapped around my shoulders, dragging me down, making every step difficult.  My two good friends, who had flown all the way from Canada to meet up with me, could probably sense it, they have known me for a couple decades now.

Suddenly, a text message, from another mom I know who was at the hospital for a check up for her 4 year old girl. The message is brief. “There’s a long bright spot on the scan. It can only be a relapse.”

I stood reading and re-reading the message, cold Prague air creeping up around my ankles, into my coat, up my spine.

For the first few seconds, I felt nothing, just a strange sharp pain in my stomach. No emotion. There was no reason to expect a relapse in this little girl right now. The treatment had been very successful.  There were no signs, no symptoms. Kind of like… Elliot, when we discovered his cancer. No symptom at all. A perfectly healthy child, running around being normal, and suddenly they tell you he’s at death’s door.

I started to type a message back right away.

I can’t believe it…” No, that feels wrong! Delete.

Are you sure?…” Wrong. Delete. The ache in my stomach is getting worse. My fingers are wrapped tightly around the phone, frozen from the cold.

What did the doctors say?” Stupid question. Delete.

I can’t think of what to write. And the reason I can’t think of what to write is that there is nothing I can write that will fix this.

So I finally just wrote: “I’m here.  I’m crying.” Knowing that was no help at all. And then the tears came, not just for this little girl and her mom, but for all the kids, and for mine, and then for me, who didn’t deserve to have to worry so much about my own child, who should have been able to just enjoy a damn girl’s trip to Prague.

Of course my friends did exactly what friends should do in situations like this, which is wrap their arms around me, take me out for some drinks and desert for supper. (Sidebar: absinthe is very very cool to watch, as the bartender prepares it and pours and burns the sugar on the special metal carved spoon, but it tastes terrible.  Despite the desperate times, we could not drink it, and quickly left the Absinthe bar for a more sophisticated restaurant serving wine and decadent Czech deserts).

My friends, eager to make me feel better, talked it over, and decided that I was probably getting too immersed in the cancer world. I was drowning, worrying about every child, and this was making me unable to see that everything was now ok with mine. We decided I need to start focusing on other things. Get a hobby. Take a class. I agreed, actually starting to feel slightly embarrassed at my little tearful breakdown. It was all so logical. I just needed to distance myself from the cancer world.

But instead of feeling better, I started to feel angry. The wine and desert kept the anger quiet for a while, but it seeped in at some point in the middle of the night. I kept it hidden for most of the next day, since I was travelling back to Geneva, and anyway it’s easy to disguise anger when you’re at the airport and your flight is late, everyone is angry anyway.

Somewhere over western Austria I finally admitted to myself that I had no intentions of focusing on other things. I was angry at this relapse. It didn’t make sense. It was illogical (which cancer is, of course) but things that are illogical bug me.  The girl’s mom and I had texted back and forth a bit and apparently the doctors were mystified too. All the other tests were fine, just this one image that showed a relapse. This cancer was (and still is) just a big bully trying to scare us into admitting defeat. Well, NO, I thought. I’m not hiding from this, I’m not going to pretend it can’t happen to me. It could.

Yes, the logical thing would be to protect myself, to distance myself from any unpleasantness. The truth is, I do that a lot. I can’t watch any movies or tv shows where kids get hurt or die. I stopped reading the newspaper because there’s always a story about some horrific tragedy involving kids. It’s easier to just avoid unpleasant things, isn’t it?

But here’s the thing: I can’t abandon a friend. No matter what. And if it were me, if one day it happens to Elliot, I would not want all my cancer mom friends to run away and hide. I would want them to join forces to support me through this, no matter what. To be there, to join in the fight, to hold hands if things go wrong. To be strong when I can’t.

And strangely enough, once I made this decision, the nagging anxiety I had felt even before the Prague trip lifted. Yes, bad things happen. They happen even when they shouldn’t  and sometimes the unfairness is so bitter you can taste it. But sometimes, good things happen too.  In the middle of the fight for your child’s life you find you have made a friend. In what should be your darkest days you laugh out loud at something silly. In your weakest moment you discover a strength that wasn’t there before.

So there you go. I’m not leaving the cancer world. I DID take up a hobby, completely unrelated to cancer (I’m taking piano lessons! Ack! My piano teacher says the fact that I played piano as a child will help me learn it again… That was before she heard me play the piece I had practiced all week… She smiles a lot, kind of like you do when your shoes are too tight.)

No, instead, I’m going to toughen up. I’m going to face the fact that tragedy happens. I can try to help, try to hope for a miracle for everyone I meet along the way. I can be there, in the same way I would hope someone would be there for me if I needed it. I can stand by my friend and face whatever comes. I can research treatment options if it helps and keep calm and logical because it’s easier to keep the facts clear when it’s not your child. I can feel all the pain and fear but can also keep repeating the most important fact. “the doctor believes they can cure her.”

And the anger? I’ve channeled it. I remember reading that anger is the best emotion to make you take action. Anger is motivating. Anger is fuel. So I’m angry at cancer, and the result is that I’ve decided to stop cancer. Yeah, that’s right. You know, when I put my mind to something, I can be pretty stubborn about it. So there’s a few paths I can take: either I can quit my job and go back to school to study to become a medical researcher, and find a cure for some of the worst childhood cancers. This has the definite disadvantage of a)taking WAY too much time b)requiring me to study and c)losing my salary in the meantime. Not to mention the fact that I want to do something NOW. (Did I mention I have no patience?) So my other option is to find people who already have done all the studying and schooling and all that boring stuff, and support them as they try to find a cure for the worst childhood cancers.

So if you want to know why I’m involved in fundraising, now you know: it’s because I’m too lazy to study. Yeah, I’m often immersed in the cancer world (except for my clearly brilliant moments of piano playing), but it’s a conscious choice.

Being strong all the time when you’re alone is impossible. But if all of us cancermoms, cancerdads, cancerfriends  stand together, our combined strength will be enough.

When spider webs unite.

Remember my valiant story about undertaking my incredibly long and difficult marathon last year? Yeah, I know it has been pointed out to me that a “marathon” is officially 42.195kms therefore I should not have called mine a marathon at all. By that same token Terry Fox should not have called his the Marathon of Hope, since his was way way WAY too long to qualify as a marathon. So there, if Terry Fox can cheat on semantics, so can I.

Well, I finished my marathing (Ha! New word!) in record time (ok it took me two hours and I was aching for 5 days after) and raised over 3000 francs for childhood cancer research. Not bad eh? I felt pretty proud of myself.

Right after the marathing, we were all served hot pumpkin soup (which tasted like a small miracle to me after my 11km hike through the frozen wilderness) and I chatted with some of the other participants. One of them was Zoé’s aunt, Patricia. Zoé is a little girl Elliot and I have met along the way, who has battled neuroblastoma three times.

That’s the funny thing about my adventures in Cancerland – just when I start to feel like my situation is special in some way, someone else comes along to show me I aint seen nothin yet… The year we spent battling cancer alongside our 4 year old was the hardest, most painful, most frightening thing I have ever experienced.  Zoé and her family did it… THREE TIMES.

The 11 km trek through the frozen rain was physically exhausting and emotionally challenging – I felt like quitting at least once. (Oh who am I kidding, I felt like quitting within the first 15 minutes when a cheerful bearded man who looked to be about age 70 passed me, and then roughly every 10 minutes after that, as I kept trying to catch up to him and failing.)

Well, Zoé’s aunt Patricia was participating that day for another reason… For practice. Yep, this little 11km was nothing but a trial run! She and two friends, Sophie and Sarah, had signed up for an incredible adventure in support of childhood cancer research, one that made my little 11km seem like a stroll in the park.

The Amazon Green Tree Raid is a 7 day competition in Mauritius, for women only, requiring intense physical and mental stamina to complete difficult events in exotic natural settings, using only, as their website claims “no motors, just sweat”. Zoé’s aunt and her two friends had no special training when they signed up, just the will to be part of an incredible adventure that also might lead to some funds being raised that they could give to childhood cancer research. They named their team: Sun à ma Zoé. sazcanoe

In order to get ready for this event, Sophie, Patricia and Sarah spent the year training for all the different daily challenges they would encounter:  they entered 10 races of various lengths, and types, including a biathlon and a bike race. They also had to learn and become very good at mountain biking, canoeing, archery, rock climbing, weight lifting, and orienteering races, some of which they had never tried before. They dealt with bruises and black eyes, injured arms and sprained ankles. They persisted, and the money started flowing in. Sponsors got interested in supporting the team.  People signed up to follow their adventures on their website and their facebook page.

A few weeks after our marathing, they flew off to Mauritius. We all watched from a distance, tuning into their website to let us know how they were doing.  In a way, they carried not only our hopes for a cure, but also our dreams of adventure. The video that sums up the event is an amazing compilation.

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sazrun

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I like the Ethiopian saying “When spider webs unite, they can tie up a lion”. In this case, the lion is cancer.  OK yeah, I guess that makes us all spiders, which is kind of creepy, but my point is, all of us working together can actually make a true difference. Childhood cancer research is still hugely underfunded. Families confronted with a child’s cancer diagnosis have major problems to overcome, not just the cancer and treatment: unpaid time off work or job loss, childcare  and help for the other kids, juggling all the everyday concerns while also rushing back and forth to the hospital, many times in an emergency. The 80% cure rate we hear about sounds great until it’s your kid and you realize that what that means is that out of every 5 kids diagnosed, one doesn’t make it. For those who survive, 2/3 will face permanent and serious side effects of treatment. There’s so much more we the little spiders need to do.

On January 18th 2013 the Sun à ma Zoé team presented a cheque to Zoé and Elliot’s oncologist, Dr. Beck, who is also the president of the foundation FORCE, dedicated to childhood cancer research projects. The team had hoped to raise 10,000chf, but were unsure whether the support and public interest would be there. The total amount raised? 23,225chf! An incredible achievement by three women who dared to take on a challenge.

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What new adventure is waiting for us just around the corner? Will Zoé’s mom and I decide to climb Mount Everest to raise money and awareness? (She is rolling on the floor laughing after reading that.The odds of seeing the two of us anywhere near such a huge challenge are about the same odds of a scintigraphy machine showing a false-positive… Hey, wait a minute…)

Friendship

Lately the cancer world has me pondering the importance of friendships. What would we do without friends? Women, especially, needs their gal pals. In fact, recently on facebook a post went around about a study that was done that determined the best thing a man can do for his health is to marry a woman, whereas the best thing a woman can for her health is to nurture her friendships with other women.

It’s just so true.

A friend can be there to support me through the difficult moments of Elliot’s diagnosis and treatment, even if her children have never had cancer. She “gets it”. It doesn’t matter that it’s not her child, she actually feels the fear and anxiety I feel. How do women do it? We take on all the pain and suffering of those around us. When someone we care about hurts, we hurt too. Men are better at compartmentalizing their lives, at separating their emotions from their actions.

I was chatting recently with a mom, whose son had cancer years ago and is now considered “cured” (apparently you can only say “cured” with quotation marks, because there is never a real guarantee. Darn it, and here I was hoping for some kind of official He Is Cured document from the hospital at some point!) She mentioned that someone had recently told her that she should now “shut the door” on cancer, that it’s part of the past and it’s time to move on to thinking about new things.

We stared at each other a bit after she said that. Then she said it would be pretty hard to do as she had just signed up for a two-year term working with a children’s cancer group.

We laughed.

The thing is, there’s no door to shut.

Being a cancer mom isn’t a choice, and it’s (unfortunately) not a temporary role. Nobody enters the cancer wold willingly, but once you’re there, you don’t have much of a choice. You adapt. Even my friends whose kids don’t have cancer have been dragged into this world with me, sure, not as intensely as I have, but whether they like it or not, they can now chat easily about blood cell levels and remission and chemotherapy side effects and vomit stain removal and needles and port-a-caths. And they can laugh at it all, and cry at it all, and while they laugh and cry they can also make supper and do two loads of laundry and find the missing lego piece and clean the living room and feed the cat and stop one child from hitting the other and text a friend and polish their toe nails. While they are doing all this the husband usually only has time to walk into the kitchen open a cupboard, stare into it’s depths for several minutes, then ask, “Where do we keep the salt?”.

Ok I don’t mean to insult the male population there, and I may be slightly exaggerating (my husband actually knows where the salt is!). But seriously folks, let’s take a few seconds here to applaud all the women out there, cancermoms and cancerfriends, who are going through this journey or have gone through it already.

I live in an all-male household. This has some advantages. I told Jesse the other day to take out the garbage, and he replied with some kind of grumble that sounded like “ok”. A friend of mine (male) with a teenage daughter recently told me he had asked his daughter to take out the garbage and the girl broke down crying, accused her dad of trying to ruin her life, and ran to her room, slamming the door. It turns out she had just done her hair and put on her new skirt which she had wanted to show her dad (which he failed to notice) and it was raining out, which, any woman would know, means there is no way the garbage is being taken out in these conditions and how dare you not notice my hair and outfit?!?!

Jesse took the garbage out without another word. He also did not bother to put on socks and shoes or a t-shirt. And it was raining out. When he came in I said,  “You”ll catch a cold going out like that!” and he grumbled something that sounded like “ok” and walked into the kitchen and ate an entire loaf of bread, jar of peanut butter and drank a liter of milk.

So there are advantages to the testosterone prominence in my home, and disadvantages. Sometimes, I miss having someone to talk things out with. There are occasions, during quiet moments, when I have said to my husband “So what do you want to talk about?” and he gets that slightly panicked look. Daniel comes home from school and I excitedly ask him how his day went, what did they do etc etc (It’s a new school year, I’m curious!) and he replies “it was very… school-ish.” and I don’t get much more than that…  I still recall noticing Jesse, around age 6, staring intensively out his bedroom window for a long thoughtful moment, and asking him what he was thinking about. He replied “Well, when I see a car, I think: ‘a car’. When I see a person, I think: ‘a person’.”

With my friends I can talk easily about all of life’s mysteries. The anxiety of worrying about a relapse. The ups and downs of every day life. The stress of juggling the kids’ back to school schedule. The joy of shoe shopping. The confusion of relationships.

There is a special bond between cancer friends too – we who have faced “the dragon” and felt its hot breath hovering over us (oh that was very descriptive, wasn’t it? Feels right, like we’re little knights in shining armour brandishing our swords above our heads, torn between fear and fury).

You would think a group of women bonded by cancer would be a sad, weeping lot, all of us sitting together in a semi-circle, sharing our sad tales over tea, a box of kleenex nearby being quickly used up. Well, so far, in my experience, it has been quite the contrary! Swap that tea for a good bottle of red wine and there we are, laughing our heads off as one mom tells the story of sneaking a pizza in to her daughter’s hospital room and being caught by a nurse. Keep the kleenex – we’re laughing so hard we’re crying.

Don’t get me wrong. Behind that pizza story is the very real image burned into our minds of the mom who has stayed by her child’s bedside for days, the i.v.s of chemotherapy and anti-cancer medicine hanging overhead, and then the anti-nausea medicine, the anti-pain medicine, the medicine that helps you get over your addiction to the anti-pain medicine, the medicine that helps you sleep, stay awake, poop, not poop, and of course the medicine to treat the side effects of all the medicine. The mom who is exhausted, hungry, scared, sad, and has decided that dammit, she’s having pizza with her kid. The mom who is overjoyed if her child is actually willing to eat one bite of food.

We don’t need her to explain all that because we’ve all lived it. What we need, mostly, is to laugh. And be together.

Because when the dragon rears its head and starts charging at you, and all you’ve got is your little sword, you need everyone else to show up with their little swords. One dragon against a whole bunch of sword carrying women (and a pizza) is all we need to keep fighting. And hopefully, most of the time, win the war.