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.”

 

Just keep swimming…

 

What a week. Is there anyone else out there who feels like there was no end to the bad news last week?

Adam. Talia. Abigail. Onja. Of course many more whose names I don’t know. Lives lost. Hearts broken.

I feel like running away and hiding my head in the sand.

No, I can’t run away and hide my head in the sand.

Because last week, I also had to drive to the hospital and sit in the waiting room next to my husband, holding hands but not speaking, waiting for our turn to be called in. Waiting to be given the results of Elliot’s scans.

And we were lucky. Once again, we were so very, very lucky. Because Elliot is still in remission. Whew. Exhale.

But what if he hadn’t been? Would I want all my friends to run away and hide their heads in the sand? No. That would be when I would need them the most.

So let’s stand strong and stand together.

When asked by Ellen DeGeneres how she managed to stay so positive, Talia, who was at that time fighting two kinds of cancer, replied with the line from the character Dory played by Ellen in Finding Nemo. Her answer became quite famous as Talia’s motto: “Just  keep swimming…”  I liked this. It felt like hope, wrapped up in humour.

 

A few days ago, Patrick Lacey, Will’s dad, posted a blog article mentioning that he was feeling tired. No, not tired because he has once again been forced to fight alongside his son for survival and reasonable health for his 8 year old, who has had cancer for… 8 years.

He’s “tired of chasing donors and sponsors…  tired of having to fight absurd battles against groups that somehow make it their mission to impede progress… and saddened that he is no longer surprised by these actions..”

I felt sad when I read this. After a week of bad news I really understood the sentiment, even coming from a person who is normally optimistic and always inspiring.

Patrick is tired, and we are all tired with him.

But let’s listen to Talia.

Just keep swimming.

September is turning gold. Just follow “A Day of Yellow and Gold and you’ll be amazed. People are paying attention. The TRUTH 365’s facebook page has almost 26,000 followers. Even my own blog post of June 18th Are you sick of all this cancer stuff” had over 5000 views in 2 days.

September 22nd the Jet d’eau right here in Geneva will be GOLD for childhood cancer!

Jet d'eau Genève

Jet d’eau Genève

Research is happening. Not at the pace we want, but it is happening. There are people dedicated to this cause, and not because they have had kids with cancer. Dr. Mosse. Dr. Sholler. Dr. Maris. Dr Grupp. Dr. Matthay. Dr. Kushner. My own Dr. Beck and the entire team here in Lausanne. I know there are many more, these are just the ones I have heard about directly from other parents.   I know, Patrick, we fight for every penny, and it’s not happening quick enough to save our kids now. But there have been advances. Immunotherapy and MIBG treatment for neuroblastoma. Gleevec for AML. Limb salvage surgery for sarcomas that used to be treated by immediate amputation (have you seen this amazing video of 4 girls who had rotationplasty which allows them preserve a functioning “knee” joint, so they can still jump and run? Look at them swim! Couldn’t we wish all teenage girls would be so confident and happy about their bodies? Amazing singing voices too!)

 

And more research… St. Jude’s pediatric genome project.  St. Baldrick’s just announced it’s summer grant program: 63 grants in 17 countries for a 22 million dollars. The new “Dream team“. In France the race “Enfants sans cancer” (Children without cancer) on September 29th is expected to raise in the hundreds of thousand euros, all of which will fund a new neuroblastoma trial which will be available for kids before the end of 2013.

It really is happening. Not fast enough. And we won’t get back the ones we’ve lost. But I do believe in a better future for the next kids diagnosed.

Just keep swimming…

The governmental practices regarding funding childhood cancer research are changing. No, not fast enough. But the Creating Hope Act is a step. In Europe, the European Commission on public health has published a document entitled “Better Medicines for Children — From Concept to Reality“, detailing improvements made and future directions. In France a petition signed by over 70,000 people has resulted in a law proposal which would increase research and improve access to individualized treatments. So it is happening, slowly but surely.The laws need to change so more research is funded by our tax dollars as well as by the pharmaceutical companies. We need a strong advocate in that area, I personally would choose Jonathan Agin. He knows what he’s talking about, he has access to the public forum through his Huffington Post articles as well as a large following in the States and internationally. Let’s back him. Jon you up for this? Good. See, Patrick, one more thing crossed off our to-do list.

Just keep swimming…

International unity within the childhood cancer community is growing. Associations are forming associations. Look at the new Coalition Against Childhood Cancer, who’s poster says “Unity is Power”.. Borders are being crossed, whether cultural, linguistic or physical. French speaking parents here in Switzerland are writing to me to ask for translations of NB Globe articles, an international neuroblastoma information website, which Rockstar Ronan‘s mom Maya tweets about in the States. Talia’s youtube channel reached across the globe. The TRUTH 365 has gone global too, with followers in Australia, Europe, and the Americas writing to each other via their facebook comments. Supporting each other. Parents are sharing experiences and advice on an international level. Momcology members care about each other’s kids even if they live in completely separate countries. We have better access to information than ever before.

It is happening. Please don’t let the tiredness, exhaustion, frustration and sadness make you quit.

We have to just keep swimming. Because after all, if we stop swimming, we’ll just sink.

The quiet rumbling that turned into a roar.

Going GOLD for September.
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This post is happy and it’s sad. It’s about hope, about taking action, about letting go, about grief. It’s about life, and death, and everything in between.

I dedicate this post to Adam.

 I mentioned in my last post that September is Childhood Cancer Awareness month. Most people in the childhood cancer community are aware of this, but outside of our “world” few people know about the gold ribbon.

It used to be like this for breast cancer, it was talked about very little. Now, the month of October is very well known as Breast Cancer Awareness month, there are pink ribbons everywhere (and I will most definitely be wearing one proudly!).

The White House is illuminated in pink for the month of October to support this cause. Other monuments and landmarks also will turn pink in the U.S., in Canada, in Europe, in Australia, in the world! For a cause that used to be so hush-hush, this is amazing news. Awareness of this cause has increased research, which has turned this type of cancer into something many women now survive.

This year, a group of parents have petitioned the American government to turn the White House gold for September, for kids with cancer. Other groups, like A Day of Yellow and Gold  have been working on turning September gold with great success: Niagara Falls, the CN Tower in Toronto, the Zakim Bridge,the Prudential building, the Atlantic Wharf in Boston, the Battleship New Jersey, the Ben Franklin Bridge in Philadelphia, the Liberty Bridge in South Carolina all will be lit up in gold. Major sports teams are getting on board, the Philadelphia Phillies will have a golden ribbon on their scoreboard. And there have many other plans. In Australia, support for the  GO GOLD AUSTRALIA for September action is growing like a wildfire. Just last month an amazing documentary about childhood cancer won three Emmy awards, watch it here: http://www.thetruth365.org/.

 There is a movement afoot… A movement that started as a quiet rumbling, and grew, and grew, and is now a loud roar… We, the people of the childhood cancer community, are calling out to be heard! We want to turn September GOLD, and have childhood cancer moved out of the hush-hush quietness and into the spotlight!

A few days ago, Adam, a boy I’ve mentioned in previous posts, passed away. I have been occasionally in touch with his dad in my search for neuroblastoma treatments on an international level for Zoe (www.zoe4life.org) but mostly I read his dad’s blog, hoping against hope that they would find a treatment somewhere that would work. I was at first overwhelmed with sadness when I saw his beautiful photo, still alive and healthy, looking like he was heading off to school. The unfairness is so bitter I can taste it.

 But I want to believe… no I NEED to believe that if that boy had been born today, we could save him this time. We could come up with some new treatment before the cancer got to him.

But who am I, to try to fix the world, little me in my little corner of Switzerland? What can I do?

But wait. I can at least try. Gold in September? Ok. Let me think a bit.

I live in the French-speaking part of Switzerland, in between Geneva and Lausanne. What kind of monument or landmark is symbolic of our region? What could we, here in our corner of the world, turn gold to support childhood cancer awareness?

What represents this area of the world, and is known and recognized internationally?
Well… I sit and think a bit. I tap my nails nervously on the table as I think it over. A crazy idea. There’s no way it will work, they won’t say yes anyway. There’s almost no point trying…
Jet-deau1
The Jet-d’eau, in Geneva, is a historical landmark. In existence since 1886, it can be seen from far away, even from flights at 10,000 meters above.
And they light it up at night.
What if I asked them to turn it gold in September? At least for a day?
No, I’m thinking crazy thoughts there, why would they do that for me? (Yes, I often have conversations with myself. Yesterday, for example, I realized that I was strangely not stressed about Elliot’s upcoming scans for his one year-post remission check up. Then I said to myself that in the past, I was always completely stressed, and it all turned out good. So then I thought, but does that mean that this time the results will be bad? So now I’m stressed. Yep, that’s right, I talked myself into worrying.)
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But hey, I’m also an eternal optimist.
So I said to myself (not out loud) “Why not? The worst thing they could do is say no, right?” (Well actually the worst thing they could do is laugh hysterically at me and print my  photo in the local paper with the headline “Canadian woman loses mind in quiet, conventional Switzerland”).
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Fine.  I’m going to do it anyway. For Adam, who couldn’t be saved, but who’s life was so meaningful despite being too short, touching many families going through the neuroblastoma battle even here in Switzerland.  And for the baby born today who isn’t even diagnosed yet. Because there is a baby being born right now, who ‘s parents have no idea yet…Can we save him? Can Adam’s battle somehow mean that this baby stands a chance?
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And I’ll do it also for all the kids in the Geneva hospital right now, just a few minutes walk from the jet d’eau. And all the kids in the Lausanne hospital, where I’ll be on Monday with my son, worrying. The Lausanne hospital, where I sat last week with Zoé’s mom, on a balcony perched beautifully overlooking the city of Lausanne and the lake and the jet d’eau off in the distance, having a coffee and digesting the bad news about Zoé’s latest tests. For the other mom who joined us on that balcony, looking scared and exhausted, and for her son who has the “good cancer”, a leukemia with a cure rate of 80%, but who is fighting for his life because of a massive fungal infection caused by the low-immunity from the treatment. I can at least try to do something to make people know that our kids need a voice. They need to be heard, they are crying out to be heard.
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So I looked up the people who are in charge of the Geneva Jet d’eau. It took a little research. I found out who to contact. I made my pitch. I actually had to make my pitch a few times, since I was not always in touch with the right person.
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My pitch was nothing very spectacular. Basically, I told them I had a kid who had had cancer, and was in remission, and that it was the worst experience of my life, and that many parents of kids with cancer would love to be as lucky as I was… And that I would really really like it if they could light the jet d’eau gold for at least one day in September.
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And guess what.
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They said yes.
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THEY SAID YES!!!
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So if you think I’m stopping there… No way. Let’s go GOLD for September. What else can we do?
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To support neuroblastoma research go to: 
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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.

A Journey of a Thousand Miles

journey

It’s just not fair.

How many times have I thought that in the last 20 months?

And often I have thought about how I was before entering the cancer world, how I would get stressed or upset over things that are so insignificant in the grand scheme of things. A car cuts you off on the highway. You stub your toe. You have a grey hair. Your perfect meal for guests burns. Now I notice when other people outside of the cancer world do it, and I wish for that “insouciance”, that ability to be so free of real worries that the every day little things actually seem important.

And then I come to realize that even my worries about Elliot are nothing. Nothing compared to what other parents are going through.

I have been actively researching information about neuroblastoma, for a friend who’s daughter has relapsed. The ironic thing about neuroblastoma is that on September 7th 2011, when we were sent by our pediatrician to the local hospital for an ultrasound of Elliot’s stomach, the doctor told us there was a tumor on his kidney that would likely be either nephroblastoma or neuroblastoma. We had to wait the entire next day for a confirmation of the diagnosis, during which time I, of course, did some extensive research on my iphone and became an instant expert in the neuro and nephro blastoma worlds. It turned out, my research told me, that the nephro world had a way way way better prognosis than the neuro one. Such a small difference, nephro or neuro… To most of you out there it means nothing. I crossed my fingers and wished for nephro.

When we were called into the meeting room to be told the official diagnosis by the team photo (75)taking care of Elliot, I actually smiled and sighed with relief when the doctor told us it was nephroblastoma. “Oh!” I said, but that’s good, right?” She looked at me carefully (or like she knew I was slightly insane, more likely). She slowly explained that yes, “normally, it is good… but…” It turned out that in Elliot the disease was very advanced. He was stage 4, with “innumerable tumours all over his lungs” (Later I would ask another doctor exactly how many lung tumours there were, and he would reply carefully that they had only measured a few of the bigger ones to keep track of their size as the chemo made them shrink.

-“So how many did you measure?”

-“Oh, I think about 12-15 of them…”

With Elliot, the reason we were initially given a lower prognosis for his type of cancer (50%, she said, and I still resent her for it), was because of the advanced stage. But once the chemo started working, which magically happened almost right away after the first dose, the prognosis improved. Now, treatment being completed and in full remission for over a year, Elliot’s number has moved up to about 90% survival.

Great, right?

A few decades ago, the type of cancer Elliot had, like most childhood cancers, was almost universally fatal.  Thankfully in the 1950s, a man named Sydney Farber, a pediatric oncologist in Boston, defied the criticisms of his colleagues in adult oncology who said he should “leave the children alone, leukemia was incurable, let the children die in peace.” Cancer treatment back then revolved around surgery. But Farber had a crazy idea, that medicine could also be used to treat cancer when surgery was not enough… Or even when surgery was not possible. Like in leukemia, where there is no tumour. So Farber kept trying. Kept searching, despite some pretty heavy criticism. Then, a breakthrough. Farber managed to stop cancer in a young boy with leukemia. This had never happened. Leukemia was fatal within weeks of diagnosis. That’s how fast it is. But this boy went into remission, using… Medicine?!?! Not possible. Leukemia didn’t form tumours, and without a tumour to cut out, there was no treatment. Injecting some chemical was a silly idea. And yet, this boy, with advanced leukemia, went into full remission… for two months. Then the cancer returned. You see? It doesn’t work. Give it up. But instead of being discouraged, Farber was motivated. If it was possible for two months it could be possible for even longer… Or even, dare we even suggest it… to cure it? So he kept at it, searching, testing. Within a few years Farber has succeeded in producing complete and permanent remissions in leukemias and nephroblastomas, using medicine… This medicine was called chemotherapy.

Back then people thought he was crazy. He worked in a small laboratory in the basement of the Boston Hospital, with the help of, as the story goes, “one assistant and 10,000 mice.” Funding for research in children’s cancers was minimal to non-existent.  When he published his first report, outlining his success in achieving remissions in 10 out of 16 leukemia patients, it was met with disbelief and ridicule.

Sidney Farber is now considered to be the father of chemotherapy (because as is often the case, chemotherapy treatments for kids’ cancers lead to treatments for adults. The reverse is rarely true.) His official biography on the Dana Farber Institute’s website states: “He was convinced that the only thing standing between science and a cure for cancer was sustained research, sufficient funding, and the national will to bring it about.”

So why the little chemo history lesson? (Don’t worry, there is no test after.)

Because I know what you’re going to say after I tell you the next part of my story. You’re going to say it’s not possible. And I want you to remember Farber.

Childhood cancer today has an overall cure rate of 80%. That’s up from less than 10% when I was a kid.

So it would be easy to think: Great! Our work here is done! And pat ourselves on the back for such a great statistic. And move on to other, way more serious things, other diseases and illnesses…

But wait. Childhood cancer is still the number one disease killer of kids. Number one. In fact if you take all the other disease killers of kids and add them all up, they still don’t beat cancer.

cancer is the number one cause

Why? Because you have to get the right cancer to get into those 80%. For example, hodgkins lymphoma, has a 95% survival rate today. Nephroblastoma is at 92%, and the most common form of leukemia is at 87%. Oh but make sure you get the right kind of leukemia. Because if you have some of the more difficult leukemias, the prognosis plummets. And brain cancer? Kids don’t get brain cancer, do they? Well yes, it’s the most common tumour found in kids. So many things I didn’t know before embarking on this adventure. But good news, survival is now at 74%… Of course that’s with significant long term side effects for the majority. Oh but wait again, don’t forget to make sure you get the right kind of brain tumour, at the right spot… Because if you get a brain stem tumour, like a DIPG (diffuse intrinsic pontine glioma), for example, your odds are… wait let me calculate… oh yeah, that would be 0%.

Back to the neuroblastoma story. I guess I feel particularly touched by this cancer because we came so close to it. In fact, it’s much more common than the cancer Elliot had. So we got lucky against the odds.

In my research for my friend who’s daughter relapsed, I have come across many other parents, especially in the online community of kids cancer. We share information and support each other. Some parents have to leave their home country to find treatment for their child, because clinical trials are not available everywhere. My friends’ daughter will most likely have to be treated in another country. Her parents are not coming up with this idea on their own, her oncologist recommends this action at this point. There are no treatment options left for her here, but clinical trials are happening in other countries that offer her a good chance.

Parenting a kid with cancer bonds us together in this fight, even in the online world, people who have been “though it” help each other out, share tips from where to stay near the hospital, to what side effects to expect during treatment, to which new clinical trials  are now accepting patients. Each of us is searching, hoping to “beat the clock” and find the treatment that works. One British dad helped me a lot with information about neuroblastoma relapse options in Europe and the U.S. He knows all this because his son, Adam, who relapsed over a year ago, has been battling this illness in the UK, then in Germany and then in the U.S. Adam’s dad knows so much about this disease, and all the options out there, and shares this knowledge with all of us seeking answers, even despite how busy he must be taking care of his son. He has always been available to answer my questions, and others who are searching too.

It broke my heart a few days ago to get the message from him that they are now out of options and have taken their son home for, as he wrote, the final part of this journey. They have run out of time, the cancer ran faster than they did… My throat feels tight just writing that last sentence. Maybe it’s because I followed his blog, I allowed myself to become attached to his son, who looks so similar to my own. Maybe I should have been more careful, kept my distance… But shouldn’t we all be attached to Adam? Shouldn’t we all feel like crying when we read his dad write that “despite always knowing it could come to this, I am not prepared at all”… Hearing how Adam wonders innocently if his cricket bat will still do for this summer or if he needs a bigger one? Knowing his brother and sister will now be facing the worst thing to ever happen to them? How could I shut that knowledge out? It makes me want to scream with rage.

But finally, I come back to the same thing that keeps me going… anger causes action. Action, in this case, is research. We need more research, for all the Adams. And all the kids who get the bad cancers. And you know what? For all the ones who got the “good” cancers too… Because let me tell you this, if you gather a group of ten of us moms of kids with nephroblastma, one of us will not be saying it was a “good” cancer.

What’s the point? Will cancer always exist? Yes, probably. But hey, before antibiotics, bacteria would kill healthy children within weeks. Now, when your kid gets strep throat you hardly consider it an emergency. Diabetes used to strike the young, usually in adolescence, fatally, within months. It is still very serious, but is now in the domain of “chronic illnesses”, something you can live with, as long as you are careful. Thanks to research.

There are treatments out there, waiting to be developed. This is not an exaggeration, ask any pediatric oncologist if they have any ideas about potential research ideas and they will list at least 5 possibilities off the top of their head. I guarantee it. The ideas are there, what is lacking is funding, time and the will to make it happen… Not enough money is dedicated to childhood cancer research. Why? Because, first of all, it’s not popular. Nobody really wants to talk about kids with cancer. It used to be you couldn’t say breast cancer. In fact in the early 1950s the New York Times refused to publish an ad for a breast cancer support group. They did not want to write “that” word … How far we have come! Nowadays men, women and children proudly wear pink ribbons in full support of this cause. Kids with cancer is touchy. It hurts to think about it, it’s unpleasant, it feels bad. Let’s face it, it’s a downer.

Also, it’s not profitable. Pharmaceutical companies don’t run clinical trials on new drugs for kids because the profits aren’t there. That’s just a basic fact, not as much a criticism as an acknowledgement. The government doesn’t spend enough on research either. It is an expense with not much return… financially.

This needs to change. How? One step at a time.  The road map is there.

Step One: We need our governments to fund more research. Every country underfunds childhood cancer research because the cause has not been heard loudly enough. In many cases people think that kids can use the same chemo drugs as adults, but just in smaller doses. That’s completely wrong. Kids’ cancers are different. Many researchers agree that new treatments for adults have come out of research for children, but not the opposite. So it’s a long term investment with low initial revenues.  While it’s true that fewer kids get cancer than adults, the fact remains that 10 kids die each day in Europe from it. Yes, you read right, 10 kids, every single day. In Switzerland, 5 kids will be diagnosed with cancer every week. Here in our little country, imagine what that means? Childhood cancer is on the rise; it needs to be treated as a major public health issue. Some would say we are looking at a public health crisis.

Step Two: Pharmaceutical companies need to be encouraged to invest in childhood cancer research. This can be done via the government, with subsidies, or research initiatives like the Creating Hope Act in the U.S., an idea by Kids V. Cancer, which became a law just last year. One mom came up with this, and through her hard work, she made it into a law. In effect this law creates a market-based incentive for companies to pursue childhood cancer research. In France, another mom has started a petition for the same type of pharmaceutical encouragement. Fifty thousand people have signed the petition so far. Doctors and researchers are getting involved too; the European coalition of the 51 biggest pediatric oncology departments and laboratories, ITCC (Innovative Therapies for Childhood Cancer) has written a report to the EU Commission on Public Health detailing how the present legislations allow pharmaceutical companies to continue this trend of not investing any time or money into research for kids.

Step three: We need to coordinate our public funding efforts, unify our forces, on an international level. There are so many excellent charities, associations and foundations, we need to get together. In unity there is strength. (Some famous person said that, not me).

Step four: We need to make sure clinical trials are available on an international level. Parents in the U.K. or here in Switzerland, for example should not have to come up with half a million dollars to get treatment in the U.S. Our insurance premiums are high enough, they should come through for us when we need it. On a side note, I personally think parents who have to stop work to care for a sick child should receive a government subsidy, much like disability insurance. Because believe me, when your child’s life is hanging by a thread, you are disabled. In so many ways. Clinical trials being more easily accessible on an international level would also have the effect of quickening the pace of research – more kids in each trial, more results to study.

These are big steps, but not at all impossible. But we need to start working on them now. Imagine if Adam was born today. If we still had 6 years before the cancer hiding in his little body attacked. Could we save him? I want to believe we could. I need to believe it.

Remember “a journey of a thousand miles begins with a single step.” (Laozi)

 

Sources of statistical information: http://www.acco.org/Information/AboutChildhoodCancer/ChildhoodCancerStatistics.aspx

 

The Boston Marathon… and feeling lucky

Feeling lucky!

Feeling lucky!

Today we get the results of Elliot’s scan. He is acting normal, except for what is probably some hayfever, runny nose, coughing and light asthma. The coughing and asthma always worry me, because what we will find out today, basically, is whether there are any lungs metastases.
We went in for all the tests on Monday, and get the results today on Wednesday. It’s always like that, every three months. So the Tuesday in between is a bit of a write-off, although Martin and I are getting so much better at coping.
And yesterday, our stressful Tuesday, the big news you read about everywhere was the Boston Marathon explosions. I read about it in shock yesterday and again this morning, as I sit in my quiet kitchen waiting for the minutes to go by till we leave for the hospital. I read a bit more about it, about the young boy, 8 years old, who died.
My first reaction was to feel: I can’t think about this, I don’t even want to know, especially today, it’s just too much for me to handle . My stress level is already high enough right now, I feel I might crack from the anxiety of this wait.
But I read it anyway. I lived for years in Halifax, and Halifax has a special tie with Boston because of the help the Bostonians provided after the Halifax explosion of 1917. This is a strong link that the rest of the world may not know about. Every year, since 1917, Halifax sends down one of the biggest Christmas trees as a gift of thanks to Boston. The tree is Boston’s official Christmas tree and is lit on Boston Common throughout the holiday season .
But anyway I’m sitting here, the stress building inside me like steam in a kettle, the minutes slowly ticking by till we can head in to our appointment with Elliot’s oncologist, who will tell us if Elliot might have relapsed. I always tend to feel the unfairness of our situation in moments like these, like, why were WE chosen to have to go through this, why us, why Elliot, it’s not fair.
And I think of that little 8 year old boy, in Boston, who was standing with his family at the finish line, at exactly precisely the wrong place at the wrong time, smiling as he saw his dad running up, happy.
And my 6 year old, Elliot, who probably hasn’t relapsed, but may have, and we’ll know that soon.
And you know what? Suddenly I realize that although cancer sucks, and let me tell you it sucks so bad sometimes it aches, at least Elliot has a chance. Even if he relapses, he has a chance of fighting it. He has a chance of having some more time with us, us with him, enjoying life. Enjoying the time we have together, no matter how long or short it is.
That little 8 year old didn’t get that chance. His life went from one moment of shining bright joy to nothing, in a flash.
So I guess today I should consider myself lucky. I’m going in to the hospital with my little boy who is now 9 months post treatment of a stage 4 pediatric cancer. And I’m lucky.

I think we should all see ourselves as lucky today, no matter what. Let’s make that our goal today: notice how lucky you are. And enjoy.

Times’ up. We have to get going to the appointment now. Deep breath.

Meaning

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Lately, a few friends of mine have mentioned that they are feeling down. Life sometimes takes a strange, unexpected turn, and you are thrown off balance, wondering what you did to deserve this.

It doesn’t help that it’s grey and raining out, every day for the last week has been hidden from the sun. All of us are just walking around in the pale grey light like ghosts floating amidst shadows, everything around us is coated in milky cloudy colors.

Days like these blend into each other, if someone asks you later what you did last Tuesday you can’t remember the difference between Tuesday and Wednesday. Maybe there was none.

Do you ever look back at how you were as a teenager, and wish you could warn that person? Or at least, give her a hint? I do. I sometimes think about her and feel like…she has no idea yet! She still thinks she’s going to meet the love of her life next year, get married in a castle and have several perfect kids, have a meaningful career that makes a difference, have a close circle of friends that are funny and cool (probably called Phoebe, Monica and Rachel, or something like that) and live an exciting life of adventure and meaning, leaving a mark on the world when she finally passes away at an old age, her many admirers gathering to have a huge party celebrating her life.

image

She has no idea yet… :-)

Where and when did that plan start to derail? Was it a slow process, a gradual silent shifting of gears, or a sudden, quick flash of lightning in her face, blinding her with its bright white light, leaving her forced to feel her way with her hands outstretched, guessing at where she was going?

And most importantly, was it meant to be like this?

I found a photo of Elliot recently. It was taken while on holiday in Denmark, about 6 weeks before his diagnosis. He is standing on the beach, his feet under water, a huge smile on his face. We had taken off his wet clothing, so he’s just in his little underwear, no shame of course at age 4, his arms held high as he waves at the sun.

If I look really closely at the photo, I can see the bump on the lower right side of his abdomen. The bump that turned out to be a tumour. The tumour that was cancerous. The cancer that spread to his lungs, making it stage 4.

What if I had noticed it back then? Would six weeks have meant it would not have metastasized yet? Would it have made a difference? But no, there’s no turning back time, I can’t go back and spot the bump earlier.

But what if I hadn’t found it when I did? What if I hadn’t noticed even 6 weeks later?

These questions could haunt me. But strangely enough, I don’t bother with them much. I know it serves no purpose to analyze all the “ what ifs”.

But I do wonder about whether or not this path in our life was meant to be, or whether we have any control over our destinies.

I like to think I have some control. Oh who am I kidding, I’m a total control freak. I secretly semi-consciously believe I am the best at everything important. (Note to the critics: putting gas in the car is not on my “important” list).

So it’s hard to let go, and accept that not everything is within my control…

I suppose that makes me Monica. Hey, which one of my friends right now is SURE she’s Rachel??image

So at times like these when some of my friends are feeling a bit down, I feel I should be able to “fix it”. Monica can do anything! She can clean the apartment and bake twelve lasagnas and analyze her friend’s love life and drink coffee and look fabulous all at the same time.  And she’s only mildly annoying as she’s doing it all. So why can’t I fix all the world’s problems, or at least all my friends’?

Well, I guess maybe, just maybe, I have to admit… some problems are actually out of my control… For one thing, I can’t stop the rain. Hey that should be a song.

And what about all my other dreams? I did meet Prince Charming eventually; it just took me a few decades longer than expected.  We got married at the city hall… a building potentially old enough to qualify as a castle in my books… My kids are truly perfect (ok maybe it would be nice if I didn’t cringe every time I had to enter their bathroom…) My life is certainly exciting and meaningful,  although most cancermoms would agree with me that a little less excitement could be nice…Hmmmm. Am I actually the victim of my own wishes? Isn’t there an old Chinese proverb that says “be careful what you wish for, it might come true?”

Is my life a milder version of that old suspense story by W.W. Jacobs, The Monkey’s Paw, where  a person’s wishes are granted, but with unexpected consequences? Is life just a series of random acts, or does everything you do and think affect something else?

What’s that thing about the butterfly making enough wind with its wings to cause a cyclone in another part of the world?

A friend’s daughter recently just finished her treatment for leukemia.  For those not in the cancer world, or at least not the leukemia world, treatment for the most common leukemia (ALL) takes roughly two and half years for a girl (longer for boys).  This is a huge part of your life, not to mention your child’s life! In fact, my friend’s daughter has spent more time in treatment than not. To say that this was a difficult time is not even close to being able to describe what leukemia parents and kids go through.  I thought that the 10 months of Elliot’s treatment was interminable, imagine years.  And because of the long treatment cycle, immunity is often low for long periods of time, so the kids are often restricted in what activities they can participate in.  Many miss out on school, friends, parties, outdoor activities, events, in fact, anywhere there might be a risk of catching something… The family lives in a bubble, in an “alternate reality”.

And that’s when things go well.

Often, despite all these precautions, a leukemia kid will still catch some virus, bacteria or fungus. You know, there are fungi called aspergillosis, I looked this up because I was curious what the risk was to Elliot when he was in treatment… They just float around in the air, everywhere. You can’t escape it, only normal people living outside of the alternate reality of cancer, have immune systems that just deal with those little buggers and destroy them right away.  But for leukemia kids, these little beings are just waiting for their chance… In fact, one of the leading causes of serious infection during treatment is called “opportunistic infection”, it means there are creatures out there in the world, little germs, just hovering in the air waiting for an opportunity…

Sigh.

But wait! She made it through the treatment. She made it through a variety of infections and reactions and long term hospitalizations, and the treatment and side effects and got to the last day of chemo. (Actually, she jump-started the last day of chemo by cleverly getting  so sick from one of the heavier treatments a couple weeks before the end of chemo date, so that they finally decided to just not even give her that last pill. Clever girl.)

And the parents breathed a huge sigh of relief!! And the family and friends and everyone who had followed her story cheered! They signed her up for school, to start the day after the Easter holidays. Hurray!! Life would get back to “normal” after years, they would be allowed to leave the alternate reality!

Then the family went skiing…

Is it irony? Is it almost tragi-comedy? Is it enough to make you scream out loud?

She broke her leg skiing. Three days before starting school.

The type of thing that when you hear about it, you literally don’t know if you should laugh or cry. Maybe you should do both.

On the one hand, how incredibly  incredibly frustrating to go through all that  treatment and just before normal life starts you are back in the hospital world.

On the other hand, how normal… How incredibly nice and normal to be at the hospital with a kid who broke her leg skiing… That’s a “normal kid” problem!! People outside the cancer world can maybe not quite understand this but… She was skiing!!!!! The little girl who just a few months ago was battling a fungi attack in her lungs! The little girl who probably knows various chemo regimens by name, who can most likely tell you the exact dose of methotrexate it would take to make her puke!

When I got the news I felt just awful for my friend, who once again had to rush to the hospital with a hurt child. My friend who felt guilt, because moms always feel guilt even if it’s not our fault, because somehow we think we should be able to prevent any bad thing from happening, especially to a child who has endured more than her fair share of bad things.

But at the same time, I also felt a strange feeling of gratitude and pride. Because she was skiing. She was being normal.

And after all, isn’t that what we want most for our child? To be able to live life to the fullest, take risks, fall and get back up again (with a cast maybe), be happy?

Maybe that is all the meaning we need.

 

Words of Wisdom

mom

 

Ok guys. (And girls. Oh who am I kidding, mostly girls.). It’s time to talk about something serious for once. Something tragic and heart-wrenching and life-altering and emotionally exhausting and physically overwhelming.

I am talking, of course, about the very sensitive subject of… parenting teenagers. (What?? What did you think I was going to talk about??)

I am almost done with parenting my second child through adolescence. No, no, that sentence should in no way be read to imply that I am almost done parenting. It’s just the adolescence part that ends soon. My second child is turning 18 in a few months. And as we all know, the magical thing that happens after adolescence is that your child has matured into a responsible adult and leaves home the day after he turns 18, shaking your hand on the way out the door and saying “Good job, mother, I’ll be on my way to my Fully Planned Out Well Balanced Life now. Thanks so much for all your hard work, I will of course reward you for all your sacrifices by keeping in touch on a regular basis, having meaningful conversations with you when we meet for coffee every week so that I can tell you everything that’s going on in my Wonderful Successful Life, and thanking you in my acceptance speech when I receive my Nobel Prize or Academy Award.”

But since we are still a few months off before all that happens, I would like to share a few thoughts on the parenting experience as it pertains to the ages of 12 to 18.

For those of you who still have kids younger than this age group, don’t worry, it’s really not that bad. For those of you who have kids past this age group, get up off the floor, it’s not polite to roll around laughing like that. Yeah, yeah, we know it really actually IS that bad, but there’s not much point telling them, is there? It’s not like they can change anything about it, it’s too late now. And besides, they are still in that phase where they think “It won’t happen to me. I have a connection with my kids. I have a plan. I have read parenting books, taken a class, thought it over, talked to the Dalai Lama and well, I just know it will be different for me!”

Come on now, up off that floor! It’s just rude. Let them have their dreams. There’s plenty of time for the “I told you so”s later.

There’s really only one foolproof way to make sure you don’t struggle through the teenage years as a parent… Don’t have kids. But if you are reading this, chances are you have already created a little bundle of joy, maybe even more than one, and he or she is running around right now being cute and cuddly and asking “but why?” a million times and you think the worst of your struggles are the middle of the night nightmares, the stomach flu and the constant interruptions until you get used to repeating the beginnings of sentences several times.

But no. Well, actually, yes. Middle of the night nightmares with teenagers: check. Only it’s you having the nightmare, and you’re wide awake, in the middle of the night, standing next to the window, eyes darting back and forth from your mobile phone to the road outside because your teen isn’t home yet. And isn’t answering his phone. And should have been home 20 minutes ago. Which isn’t so bad in the “real world” because people are often 20 minutes late for appointments without the rest of the world getting furious at them, but when it’s your child, it’s different. You are standing there with that wonderful mix of feelings that is a cross between loving them so much you are literally aching to see them walk around the corner and being so angry you will probably ground them until three weeks after they turn 30.

Stomach flu with a young child compares nicely with that moment when one of your kids’ friends brings him home drunk. ‘Nuff said. And you thank the friend for having the presence of mind and decency to get him home. And the next day you find out it was the friend who brought the booze.

Constant interruptions? Slightly different twist to that one. Conversation with teen:

I walk into his room and say “Is tomorrow the day of your math test?”

Teen, looking at his computer. “Hahahahahaha. “ Looks at me: “What?”

Me: “Have you studied for your math test?”

Teen, looks at me: “Math test?” Looks back at his computer, which has beeped 3 times. Says  “Yeah right!” to it and types something very quickly.  Looks back at me with a blank expression.

Me: “Don’t you have a math test tomorrow?”

Teen, having picked up his mobile phone and reading something. Holds up one finger and says: “Just one….” And texts quickly while looking serious. Then looks up and stares at me with a blank expression.

Me: “Seriously, are you ready for your math test?”

Teen, puts down his phone and replies to the beeping computer while mumbling.

Me: “I found 50 dollars, would you like it?”

Teen, stand up, faces me, fully focused, at attention, staring directly into my eyes: “Really? Are you serious?”

Me: “No, now what about math??”

Teen: “What math?”

 

So you see, it’s not really that bad.

On the plus side my son recently made a Spotify list on his account entitled “Songs Mom Might Like”. For those of you who don’t have teens yet, that is an enormous compliment. It means my son thinks I might have taste, or at least i could be influenced to have taste, and especially, he thinks I have enough computer savvy to use Spotify!  It doesn’t get much better than that!!

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.