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.

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

 

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.

sazrope

 

sazrun

sazswim

 

 

 

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.

Cheque2

 

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…)

Calendar of Hope Raises Over 16,000 francs!

The Calendar of Hope

The Calendar of Hope

 

The Calendar of Hope has raised over 16,000 francs! The money will be given to the two chosen charities ARFEC and FORCE tomorrow, February 15th, the International Day of Childhood Cancer Awareness. Here is a little video which I made to commemorate the making of the calendar: http://www.youtube.com/watch?v=nXMlzFpM0AQ

My Own Little Marathon of Hope

And so the day has come… Yes, you probably knew it would, but it is still a shock to me… So here it is.. I have signed up to participate in… a marathon ! ACK!!! I know what you are thinking… Nicole, you do realize this involves… well exercise???

Yes I do.

Nicole, you repeat (I actually can hear you), you do realize this involves, strenuous exercise, like including the possibility of sweating and gasping for breaths?

Yes, I repeat stoically, I do.

Like, in nature? You continue, in awe at my resilience. Outside?  Braving the possible severe weather conditions and wild animals?

Yes, I say again, my head held high. I will do it for The Cause.

Hey wait a minute. What wild animals? Nature? Who said anything about nature? Oh yeah, they did have a picture of the marathon course on the website and it did look like, well, a narrow trail through the forest with potential hills and valleys…

ACK!!!!! What am I, crazy?

Well yes, maybe I am. But I’m doing it, the FORCEthon, an 11 kilometer marathon organized by the foundation FORCE, our local childhood cancer research and advocacy foundation. (http://www.force-fondation.ch/)

Because all the proceeds my humble run/hike/crawl through the woods, over the hills and valleys, warding off wild beasts etc, go to fund the research that is desperately needed to cure some of the kids Elliot and I have met along our cancer journey.

Hey, don’t look so worried! I can do this! It’s only 11 kilometers, how bad can that be? (What? You say that’s almost 7 miles??? Are you freaking serious???!!!)

I’m Canadian, you forget. We have Terry Fox as a role model, how can we not be moved to reach for the stars when we have a true Canadian hero to guide us?

For those who don’t know him, here is a bit of Canadian history.

Ever wonder where the idea to do a marathon for cancer comes from?

In 1977 Terry Fox was a normal, active 19 year old Canadian kid when a worsening pain in his knee sent him to the doctor. The diagnosis would change his life, his family’s and eventually all of us: osteosarcoma, a serious type of bone cancer.

His leg was amputated. He went through 16 months of intense chemotherapy and was told his chances were 50%.  His hospital experiences had made him angry at how little money was dedicated to cancer research, he watched as others around him lost hope and lost their battles.

One person can make a difference

Terry didn’t give up hope. Although he had an artificial leg which made him run with an unusual gait (find me one Canadian who doesn’t know exactly what he looked like as he ran, I dare you) he decided to embark on an ambitious adventure. A crazy adventure. And adventure that would have him braving the elements and the forces of nature (that’s the Newfies), facing wild beasts (that’s the Quebec drivers), and all kinds of weather.

Terry decided to do a marathon on his own, all by himself, and asked each Canadian to give him a dollar, that he would donate to fund cancer research. Just one dollar. If each of the 24 million Canadians were willing to give just one dollar, he figured, think how much could happen in cancer research.

But the marathon had to be big. It had to be long, like, really long, eh? (Just threw that in for some Canadian authenticity).

So he decided to run across Canada.

Yep, that’s right. 8000 kilometers. That’s five THOUSAND miles. Makes my little 11 k seem pretty pathetic actually. And I have both legs! For my Swiss friends, to give you an idea of how big Canada is, you could actually plop all of Switzerland into one the lakes just to right of the middle of the country, like Lake Huron for example, and it would fit easily (might stick out the top though, not sure about those alps).

So he started by dipping his artificial leg in the Atlantic ocean off Newfoundland and set off down the road. On his first few days he encountered gale force winds, heavy rain and a snowstorm. At first, not too many people were interested, but by the time he got to the other side of Newfoundland, people started paying attention. One town, Port-O-Basque, met him with a cheque for 10,000$, donations from each of the town’s 10,000 residents.  By the time he made it to Toronto, which took three months, everyone knew who Terry Fox was. Some corporations got the idea to sponsor him for each mile he ran (catchy idea!) People lined the road to watch him as he jogged past.

He had met the Prime Minister, had rallied Canadians to a cause, had made us believe any of us really could make a difference if we wanted.

He made it more than halfway across Canada, 5300 kilometers during 143 days. Then something happened… fatigue. By late August he was exhausted before he began his day’s run. On September 1, outside of Thunder Bay, he was forced to stop briefly after he suffered an intense coughing fit and experienced pains in his chest. Unsure what to do, he resumed running as the crowds along the highway shouted out their encouragement. A few miles later, short of breath and with continued chest pain, he asked to be driven a hospital.

The cancer was back.

Terry didn’t finish his run. But people everywhere continued to donate, and before the cancer took his life the goal of 1$ for each Canadian had been reached.

I was 12 years old when Terry did his run. I remember the excitement. The energy that people felt at the thought that we could make a difference. Only a few short years later, cancer took my grandmother. There was still so little known, so few advances. But as more money started pouring in, as more marathons took place all over the world (the Terry Fox Marathon of Hope is run in over 60 countries now), research did advance. My mom was diagnosed with advanced stage cancer less than 20 years after Terry died, and because of a brand new cancer drug, she’s still with us today.

I am in no way saying I am as glamorous, heroic or well, in athletic shape as Terry Fox. But his message is clear: we can each do our part. So off I go on November 10th to do mine.  It’s only 11 k, how bad can it be? Besides, they have rest stops along the way where they serve water and juice… I wonder what the odds are of a glass of wine?

And YES! You can sponsor me! An amount per kilometer (don’t worry, the maximum is 11km, so there’s not too much risk of breaking the bank! Breaking my back though…) or an amount just to do the run.

Imagine if everyone in Switzerland gave just 1 franc?

Email me directly at Nicole@scobie.ch if you would like to sponsor me. Or donate directly to my postal account CPP 30-604575-9 (this account is solely used for fundraising). All proceeds will go directly to FORCE foundation (http://www.force-fondation.ch/).

If you would like to join me on that day, you can still sign up too, on FORCE’s website!