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

 

9 thoughts on “A Journey of a Thousand Miles

  1. I ‘ve just read this page and I must say that I 100 % agree with you. Pediatric cancers is still taboo. People don’t wanna hear about it because it hurts and people still wanna think it happens to others.

  2. Nicole, our prayers are with you and your family. Thank you for explaining to we lay people the need for more research and funding in such a moving and comprehensive article. Keep up the good work.

  3. Oh my… You are so right… But it is the same for adults too… Lost too many people because of rare cancers and lack of studies…

    We need to fight… Every day…

  4. Fantastic post! It was interesting to be reminded how chemo was the breakthrough that saves lives. I’m all about finding better treatments as the chemo damaged my daughter’s heart and she needs a transplant yet the chemo did kill her cancer, AML which has a 60% survival rate. She beat it 100% and now faces a life of heart issues yet we feel lucky to have the kid that lives. All the best to you and son.

    • Hi Kellie, I recently read about your daughter! Very inspiring story. Please keep me posted about her progress, it really is amazing what she has overcome. Thanks!

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  6. Awesome post, Nicole! So true! The more awareness we raise the more likely we are to have this horrible disease stop taking our kids!
    Very well written!
    Megan <3

  7. Thank you so much for your post!
    I feel exactly how you describe it, getting attached to a so cute and happy and wonderfull little boy who passed 15 days ago… So I’m not the only one to feel this… I’m not crazy… I really would like to do something very usefull to fight the childhood cancer… Thank you to show me the way!

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