Tag Archives: Cancer

My son survived – why bother pushing for research?

Beautiful boy

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I feel such anger, sadness and frustration about this.

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

I have to make a difference.

That’s why.

 

How to help someone who is grieving, in 5 easy steps, from an Absolute Expert on the Subject

I know I haven’t written a lot recently. I’ve been doing so much for Zoé4life, I haven’t had time. We’re working non stop to fund research. And we’ve also put in place a system by which families can apply to us for financial support through the social workers who are at the hospital. The first time a request for help came through Natalie and I both jumped for joy and simultaneously felt like crying. It felt so good to be able to help other people who are actually in the cancer-fight, a battle we are both all too familiar with. But we also acutely remembered the pain and shock of a family hearing the words “your child has cancer”, and knew how limited our help really was.

Still, it felt good to do something.

Because sometimes, there is nothing you can do. And the powerlessness can be overwhelming.

Like when your close friend’s daughter dies.

What do you do? How do help with this?

Some people have actually asked me for advice on what they can do to support Natalie and Zoé’s family, or other friends who are grieving, deal with their loss. They are afraid to say the wrong thing, so they say nothing and assume I have some kind of magic technique.

So here goes. My list of Expert Advice. This is of course based on Actual Scientific Evidence. You will note that any time I capitalize words I am being ironic. Except at the beginning of sentences, and then I am being a Literacy Expert.

My rambling thoughts on the Obvious Clear Path to helping a person through intense grief.

Step 1. Make sure you talk a lot about the child, share memories and photos. Uh, no actually bad idea. Showing them photos you happen to have of their child is just going to make them sad. Revise that:

Step 1. Never, ever talk about the child, make sure you avoid all subjects that could bring up a memory, including: school, vacations, Christmas, any holiday, any other child in the world, any illness, toys, bedrooms, car seats, clothing, hair cuts, movies, tv shows, books, food, travel, any other person, kitchen tables, animals of any kind, toilets, grass, trees, clouds, stars, and the beach. In fact the only safe subject is the weather and then only if it’s raining. Hmm no I think Zoé thought rain was fun. Dammit, there is no safe subject.

So, avoiding the subject is useless and wrong. In fact the person wants to talk about their child. They need to talk about her. Not talking about their child would be like pretending they hadn’t existed, which would be the worst torture.

So Step 1. Make sure you talk about the child and make sure you don’t talk about the child. Good luck with that.

Step 2. When your friend is sad, cheer them up by reminding them of how great it was that their child existed, even if for too short a time. Uh, no. Wrong. That would be denying the fact that they have every right and reason to be sad.

Revised Step 2. When your friend is sad, distract them with talk of other subjects to get their mind off the child. Be careful to avoid all subjects from Step 1.
Ok that’s all wrong. Getting their mind off their child is an impossibility, it would be like telling someone to hold their breath and not think about breathing.

So, Step 2, Feel free to talk about and remind them of the wonderfulness of their child and accept their sad thoughts that are the result of the wonderfulness of their child.

Step 3. If they need to talk about the sad parts, the horrible parts, the injustice, the anger, the pain, encourage them to open up and share these feelings and acknowledge the unfairness.

But wait, are you not therefore encouraging them to stay in a negative place?

Revised Step 3. If they want to talk about all the bad stuff, remind them of the good times, and say things like, “Your child would want you to be happy”.

Nope, that’s not right. The fact is, everything about the situation sucks. They should be mad, sad, and resentful. I’m mad, sad and resentful.

Step 3. The horrible parts happened. There’s no way around it and there’s no distraction.

Step 4. If they have a happy day, a good day, are laughing or behaving otherwise normal, remind them that they are grieving and that their behavior is odd and probably they are crazy from grief and don’t really know how they feel.

Oh wow if I actually did that I would not live to see the sun set. 😉

Step 4. Ha! If they are happy, that means the grieving is over! We can all get back to normal now.

Uh nope. That’s just not how it works.

Step 4. Happy is happy. Every moment when the person is not feeling crushing pain is a gift. Don’t question it. Embrace it and enjoy it with them. And when it’s gone, trust that it will probably come back later. There is no normal way to grieve.

I guess it turns out there is no proper way to support a person through this incredible grief.

There’s no subject to talk about to take away the pain.

There’s no distraction.

There’s no going back to the way it was before.

There’s no normal.

And I am far, far, far from an Absolute Expert on the Subject. All I can say about that title is that when Natalie read it she might have laughed. Which is at least something.

So here is my ultimate Step 5.

Step 5: Just show up.

Show up scared, and angry, and sad, or worried, confused and desperate, or anxious, overwhelmed and frustrated. Show up happy and at peace, ready to have a wave of anger blow past you if it’s that kind of day. Show up serious and sad, only to be laughed at. Enjoy the gratitude and appreciation for your presence one moment but expect to be forgotten or ignored another time. It’s ok. There are no rules, just as there are no steps that show a clear path to take through a grieving process. There’s no perfect right thing to say, and there’s no reaction that means you did the right or wrong thing. It’s not about you.

Just.
Show.
Up.

 

On Mother’s Day

This morning I woke up early. My living is room is quiet and calm, everyone is still asleep. Elliot got up in the middle of the night and came into our bed, he’s still lying there in the middle, sound asleep, leaving Martin roughly 5 centimeters of bed to sleep on and 2 centimeters of blanket to use.

Jesse and Daniel came home late last night, and won’t be up for a while.

It’s on mornings like these, when the only sound is the wind blowing outside, that I grab a coffee and write.

Today is mother’s day. Later on, I’ll call my mom in Canada.

But for now I’m thinking about this symbolic day, and the three moms I know who lost their children last year to cancer.

Mother’s day… It must be such a difficult day for them.

Which makes me wonder, why do we celebrate this day, actually?

So, since I am after all, an information addict, I turn to the internet to do some research on the history of mother’s day. And what I find is really quite interesting.

The earliest recorded history of celebration of mothers dates back to ancient Greece. But it wasn’t until 1908 in the United States, that mother’s day was officially created and celebrated. Since then, the day has been commemorated internationally every year.

Do you know why the day was created? I didn’t.

So, here’s the story of Ann Marie Jarvis (1832-1905), a mom who had 11 children. Sadly, 7 of her children died from illnesses like measles, typhoid fever and diphtheria.

Losing her kids motivated Ann to take action. She decided to do something to try to reduce childhood mortality rates, to help other families.

So she created the Mother Day Work Clubs, who worked at improving sanitation and living conditions in several local towns. Their goal was to help improve access to health care, share experience and knowledge about proper sanitation and raise funds for medicine for families in need. They helped families with a sick child or an ill mother. They created a program for inspecting milk which was given to kids, long before the government implemented such a program. They were asked to help care for injured soldiers during the civil war, which they did for both sides of the conflict after declaring their neutrality.

After the war, public officials sought a way to alleviate post-war strife, and once more Ann was called upon to help. She planned a “Mothers Friendship Day”, and invited all soldiers from both sides of the conflict and their families, despite criticism and even threats. An immense crowd arrived on the designated day. Ann explained the purpose of Mothers Friendship Day and asked the band to lead them in singing Way Down South in Dixie, followed by The Star Spangled Banner. The tensions dissipated when the band then launched into Auld Lang Syne… According to records, by the time the song was over, it seemed that everyone began to weep and shake hands.

All of this happened because one woman decided to find some meaning in the loss of her children, to try to make a difference for others.

Three years after her death, Ann’s daughter Anna succeeded in convincing the American government to officially declare Mother’s day in honour of her mom. Since then, on that day, mothers are honoured for their hard work in taking care of children and trying to improve the quality of life for kids everywhere. It’s a day when we are meant to remember the children who have left us, and when we remind ourselves that if we work together, we can make a difference.

Happy mother’s day.

Ann Marie Jarvis, who created the Mother's day Work Clubs in order to help save the lives of other children, after losing her own.
Ann Marie Jarvis, who created the Mother’s Day Work Clubs in order to help save the lives of other children, despite losing her own.