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.
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 lastblogabout 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 watchhere,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.
Lately the cancer world has me pondering the importance of friendships. What would we do without friends? Women, especially, needs their gal pals. In fact, recently on facebook a post went around about a study that was done that determined the best thing a man can do for his health is to marry a woman, whereas the best thing a woman can for her health is to nurture her friendships with other women.
It’s just so true.
A friend can be there to support me through the difficult moments of Elliot’s diagnosis and treatment, even if her children have never had cancer. She “gets it”. It doesn’t matter that it’s not her child, she actually feels the fear and anxiety I feel. How do women do it? We take on all the pain and suffering of those around us. When someone we care about hurts, we hurt too. Men are better at compartmentalizing their lives, at separating their emotions from their actions.
I was chatting recently with a mom, whose son had cancer years ago and is now considered “cured” (apparently you can only say “cured” with quotation marks, because there is never a real guarantee. Darn it, and here I was hoping for some kind of official He Is Cured document from the hospital at some point!) She mentioned that someone had recently told her that she should now “shut the door” on cancer, that it’s part of the past and it’s time to move on to thinking about new things.
We stared at each other a bit after she said that. Then she said it would be pretty hard to do as she had just signed up for a two-year term working with a children’s cancer group.
The thing is, there’s no door to shut.
Being a cancer mom isn’t a choice, and it’s (unfortunately) not a temporary role. Nobody enters the cancer wold willingly, but once you’re there, you don’t have much of a choice. You adapt. Even my friends whose kids don’t have cancer have been dragged into this world with me, sure, not as intensely as I have, but whether they like it or not, they can now chat easily about blood cell levels and remission and chemotherapy side effects and vomit stain removal and needles and port-a-caths. And they can laugh at it all, and cry at it all, and while they laugh and cry they can also make supper and do two loads of laundry and find the missing lego piece and clean the living room and feed the cat and stop one child from hitting the other and text a friend and polish their toe nails. While they are doing all this the husband usually only has time to walk into the kitchen open a cupboard, stare into it’s depths for several minutes, then ask, “Where do we keep the salt?”.
Ok I don’t mean to insult the male population there, and I may be slightly exaggerating (my husband actually knows where the salt is!). But seriously folks, let’s take a few seconds here to applaud all the women out there, cancermoms and cancerfriends, who are going through this journey or have gone through it already.
I live in an all-male household. This has some advantages. I told Jesse the other day to take out the garbage, and he replied with some kind of grumble that sounded like “ok”. A friend of mine (male) with a teenage daughter recently told me he had asked his daughter to take out the garbage and the girl broke down crying, accused her dad of trying to ruin her life, and ran to her room, slamming the door. It turns out she had just done her hair and put on her new skirt which she had wanted to show her dad (which he failed to notice) and it was raining out, which, any woman would know, means there is no way the garbage is being taken out in these conditions and how dare you not notice my hair and outfit?!?!
Jesse took the garbage out without another word. He also did not bother to put on socks and shoes or a t-shirt. And it was raining out. When he came in I said, “You”ll catch a cold going out like that!” and he grumbled something that sounded like “ok” and walked into the kitchen and ate an entire loaf of bread, jar of peanut butter and drank a liter of milk.
So there are advantages to the testosterone prominence in my home, and disadvantages. Sometimes, I miss having someone to talk things out with. There are occasions, during quiet moments, when I have said to my husband “So what do you want to talk about?” and he gets that slightly panicked look. Daniel comes home from school and I excitedly ask him how his day went, what did they do etc etc (It’s a new school year, I’m curious!) and he replies “it was very… school-ish.” and I don’t get much more than that… I still recall noticing Jesse, around age 6, staring intensively out his bedroom window for a long thoughtful moment, and asking him what he was thinking about. He replied “Well, when I see a car, I think: ‘a car’. When I see a person, I think: ‘a person’.”
With my friends I can talk easily about all of life’s mysteries. The anxiety of worrying about a relapse. The ups and downs of every day life. The stress of juggling the kids’ back to school schedule. The joy of shoe shopping. The confusion of relationships.
There is a special bond between cancer friends too – we who have faced “the dragon” and felt its hot breath hovering over us (oh that was very descriptive, wasn’t it? Feels right, like we’re little knights in shining armour brandishing our swords above our heads, torn between fear and fury).
You would think a group of women bonded by cancer would be a sad, weeping lot, all of us sitting together in a semi-circle, sharing our sad tales over tea, a box of kleenex nearby being quickly used up. Well, so far, in my experience, it has been quite the contrary! Swap that tea for a good bottle of red wine and there we are, laughing our heads off as one mom tells the story of sneaking a pizza in to her daughter’s hospital room and being caught by a nurse. Keep the kleenex – we’re laughing so hard we’re crying.
Don’t get me wrong. Behind that pizza story is the very real image burned into our minds of the mom who has stayed by her child’s bedside for days, the i.v.s of chemotherapy and anti-cancer medicine hanging overhead, and then the anti-nausea medicine, the anti-pain medicine, the medicine that helps you get over your addiction to the anti-pain medicine, the medicine that helps you sleep, stay awake, poop, not poop, and of course the medicine to treat the side effects of all the medicine. The mom who is exhausted, hungry, scared, sad, and has decided that dammit, she’s having pizza with her kid. The mom who is overjoyed if her child is actually willing to eat one bite of food.
We don’t need her to explain all that because we’ve all lived it. What we need, mostly, is to laugh. And be together.
Because when the dragon rears its head and starts charging at you, and all you’ve got is your little sword, you need everyone else to show up with their little swords. One dragon against a whole bunch of sword carrying women (and a pizza) is all we need to keep fighting. And hopefully, most of the time, win the war.
So it’s happened to your friend, co-worker, family member, neighbour, or just someone you know and care about. A tragedy of some kind, maybe a cancer diagnosis like ours.
Now you want to know what to do. What to say. Do you bring it up? Or do you say nothing, giving the person their privacy? What is “the right thing” to say? How can you help them without causing them to have to relive the sadness? Especially when there is nothing you can do or say to fix it, to make it go away and make life go back to how it used to be?
There is no perfect answer, no “special statement” you can make that will be just right. The person you care about is not expecting you to come up the right thing to do or say, for the simple reason that they are also in unfamiliar territory. They don’t know how to act either. They don’t know if they want to talk about it or not, they don’t know how to behave, they’ve never done this before either!
Of course I can’t answer for everyone. But I can tell you what helped me. The most important thing, no matter what, is, don’t abandon the person. By that I mean, don’t pretend “it”, whatever it is, hasn’t happened. Don’t assume if they need help they will ask for it. Don’t think that they would rather just act normal. Normal doesn’t exist anymore.
One of my co-workers came up to me on my first day back at work after Elliot was diagnosed. Everyone knew of course, my workplace is one of these places where everyone knows everything about everyone. The joke in our workplace is that your coworkers would all know about your imminent divorce before you do.
This was not someone I knew particularly well, although in my line of work people do get to know each other better than in most places. So he just walks up and stands next to where I am sitting at work. He waits till I am free to talk, and quickly says: “I don’t know what to say. Here I am.”
And that’s all that was needed. I felt, just for a moment, less alone.
My family, friends, and coworkers have truly amazed me during this. So yes, here comes the mushy part, where I tearfully thank everyone for all they have done for me (I am picturing myself in a designer evening gown at a microphone, clinging to an Oscar as I make my thank you speech).
To my mom, who has also been battling cancer for twelve years, and who dropped everything and flew 4000 miles to be here and help out. Three times, within 10 months.
To my dad, who is always the first to read and email me about a post I’ve written on the blog updating people about Elliot, despite a 6 hour time difference. (Does he have some kind of alarm that wakes him if I post something, so he can be first?) He also has made the long trip here twice recently, to be here for important moments.
To my big sister, who carefully plans and saves up for her dream trips, then blows all her savings on flights to Switzerland. Over and over. And then says it’s fine because she needed more chocolate anyway.
To my little sister, who is the most patient playmate Elliot could have.
To the rest of my family, my brothers, my cousins, aunts and uncles, my parents’ friends and everyone who keeps sending me messages and letters of support, little gifts and cards for Elliot, messages on my blog. You have gone out of your way to show me you care, and I hope you know what it has meant.
To Martin’s parents, who arrived in our hospital room less than 24 hours after hearing the news, even though they live in Denmark. To their patience with me as I ask them one million medical questions (they are a doctor and a nurse) and have them review every blood test, scan and protocol, even though they are all in French (did I mention they are Danish?). They have followed this drama every step of the way, cancelling trips so they can be “on call” for us (apparently Japan can wait.)
To Martin’s sister, who flew down right away for a weekend, to support her brother through the initial shock. It was her first time in years (or ever?) with a whole weekend away from her three young kids, and she spent the entire time… playing with our 4 year old.
To my friends…
One who listened to me for a long time on that first night on the phone, and who texted me at the hospital that first night until 2am (I didn’t notice the time until a few weeks later when I was reading over the messages… so a sleepless night for her too.)
One who sends me a message every single time I’m at the hospital to check on me (I’m not even sure how she does this, we’ve been to the hospital over 100 times by my calculations).
One who drops cookies and chocolate in my mailbox randomly. (The chocolate, I insist, is only for me. The cookies I share with the kids.)
One who sends me uplifting, caring messages on a regular basis despite having gone through her own personal tragedy recently, and is always available for coffee and a chat.
One who lives in Canada and felt helpless to know what to do, so started sending me funny random emails about her daily life on a regular basis on the theory that it would distract me (the suitcase-shaped wedding cake was a classic).
To all my friends with kids who now know almost as much as I do about white blood cell levels and germs… And bring their kids over to play with my son inside even on beautiful sunny days when they would probably rather be at the park…
To my friends at work who, feeling the need to “do something”, collected so much money from all my coworkers that Elliot had a second Christmas…
To my girlfriends here who bought Elliot an end-of-chemo gift he’ll never forget: a big-boy bike. And then surprised me with a fabulous gift certificate to a spa.
And several friends who just keep checking on me, sending little gifts, leaving things in my locker at work, taking me out for coffee and drinks (oh and I’m not forgetting our “special” night out in November girls!)
To all our family and friends who came to Elliot’s end-of-chemo party, some travelling quite far to be there, some wearing very special t-shirts! And those who wanted to be there but couldn’t make it. It was a magical day for him.
To my new “cancer” friend, who’s son had this very cancer years ago, and is now a normal 20 year old. She let me know what I was in for but also gave me hope. And some good advice in answer to my desperate question “But how did you cope?”, she calmly said “You cope because you have no other choice.”
To ARFEC (Association Romande des Familles d’Enfants Atteints de Cancer), who were there to support us from the first day.
To Elliot’s teacher, who has magically managed to make him feel like he is still part of her class despite the fact that he has missed almost the entire year, by dropping letters, cards and little projects in our mailbox, and by teaching a class of twenty young children about cancer in a way that made them understand and relate to it without turning it into something weird and scary, so that when Elliot comes back they are ready for him.
To my co worker who made sure I knew he was there if I needed to talk, anytime.
To the anonymous donor who wanted to give us 5000chf when our insurance wouldn’t cover one of the chemotherapy drugs. (The money was sent to ARFEC instead, and the insurance company changed their mind after the newspaper story created an uproar of public outrage).
To the guy at the local boulangerie who keeps giving me a free cookie to take home for Elliot, even though the subject of Elliot, cancer, or the type of cookies Elliot likes, has never come up. (And it is exactly the right kind of cookie.)
To our pharmacist here in Rolle who has spent hours researching different medications for Elliot, trying to find the ones that “taste ok”, even to the point of making pills herself.
To the father of my two older boys, for letting me keep them last year at Christmas even though that was not normally the arrangement, no questions asked.
To my two older boys, who are just great.
To my husband, where do I begin… Somehow we created this perfect little boy with this tragic little flaw, and despite everything, I wouldn’t have it any other way.
And to Elliot, who when he whispered goodnight before falling asleep tonight, put his arm around me and murmured softly in my ear“ You know, I love you and papa just as much as my polar bear…”
(Wild applause and standing ovation from the audience now as I gracefully exit the stage… and probably tumble down the stairs because I’m not used to high heels…)
One of the funny things that has come out of my writing so much recently is that my husband has started to see how I see the world. Last Monday we had such a crazy day that he said at least on five separate occasions: “Oh you have to write about THAT!”
And it was a crazy day. We had a few different appointments at the hospital planned, so we knew it was going to be busy. But we hadn’t counted on The King being in a bit of a mood. Elliot is just so completely fed up with hospital visits, and chemo in general. And I can’t blame him. He has been hospitalized twice for a week each time, had minor surgery (implanting the port-a-cath) and major surgery (kidney removal), two weeks of radiotherapy that scared him and made him quite sick, and 23 rounds of chemo so far. Martin and I are totally fed up too! But we have no choice. Three more chemo doses to go, we just need to get him through this.
King Elliot began the day declaring he was unhappy that I had woken up before him and not told him. I had been up since 6, in the hopes of getting some writing done before the Iron Ruler awoke. I managed to make coffee, chat with Daniel (middle child, age 16) who needed to urgently update me on the baseball standings before he left for school, put a load of laundry in, pick up the toys still scattered around the living room floor, pour myself some of the coffee, turn on my laptop, take one sip of the coffee, and that was the end of my “free time”. The King emerged from the bedroom, rubbing his eyes with one hand, holding his polar bear in the other, grumpily stumbling into the kitchen declaring that the sunshine was too bright.
We had to leave for the hospital at 10, and started getting ready at 930. By 10:20 we were in front of our apartment building, standing next to our car with all the car doors open. Elliot was standing halfway down the sidewalk (only just within earshot), staring at a spot on the ground, holding his umbrella. It was a nice sunny day, the umbrella was a result of the fact that no hat had been deemed comfy enough today, but the sunshine was still too bright. He refused to get into the car, on account of the fact that we had not walked to the car along the path he wanted. Then he refused to get into the car on account of the fact that it was the red car and not the black car. Then he refused to get into the car because he couldn’t walk all the way to the car anyway because his feet were too tired. When we approached him to pick him up, his tired feet ran away.
We did finally manage to get him in the car. When we got to the hospital, we did not park in the right spot. The walk from the parking lot to the entrance was too long and the wrong elevator doors opened first which basically ruined the potential fun of the elevator. There was no point in pushing the button himself since all the joy of elevator riding was gone, but when Martin pushed the button that made everything even worse.
Our first appointment went ok mainly because the radiology doctor hardly touched him and she let him sit on a chair that spins around. Martin and I spent the appointment trying to contain the spinning so that nothing in the room was damaged, especially our child or the doctor.
Lunch: Fries too hot. There was a yucky sauce on his burger. He didn’t want a burger anyway. The walk to the restaurant was boring and there was nothing nice to see. The walk back to the hospital was ruined because it was windy so he had to be carried.
Oncology department: We arrived a bit early so had to wait, an already challenging task with all of us starting to lose patience with everything in general, but especially with the imminent chemo treatment looming before us. Finally we get called in for the pre-chemo exam by the oncologist. Elliot pretends the doctor doesn’t exist, and won’t answer any questions. He plays with a toy with increasing loudness as we talk with the doctor. Then he agrees to get on the table, and giggles a bit at the doctor’s jokes, but criticizes his reflex hammer because it’s not the same colour as the last oncologist’s. The physical check up takes longer than usual but finally we’re done and sent to the chemo waiting area… which is when Martin remembers we forgot to put the Emla cream patch on, which anesthetizes the port-a-cath area so a needle can be inserted painlessly. So we put the patch on and have to wait another hour for it to have the desired effect.
Finally heading to the chemo room. Elliot won’t enter. I pick him up, kicking and screaming, and put him on the bed. It takes Martin and I five minutes of struggling to get one arm out of his shirt, and then he gets his hand free and pushes it back in and we start over. Martin and I are physically and emotionally exhausted, and start laughing, slightly hysterically.
Two nurses, Martin and I, are holding him down while they put in the needle and do the chemo, which takes about 10 minutes. Or five years, time is different in the hospital.
Finally done. The nurse says to Elliot: “Well, was that really so bad?” He replies: “No, but next time I’m REALLY not doing it.” She writes something down on his chart.
Next appointment is in roughly 2 weeks, if the bloodwork is good. She writes down the date and time on a little card which I stick in my pocket quickly and we all basically run out of there. We head home. He gets sick in the car. The red car’s seats are not easily washable, like the black car’s. He warned us it was the wrong car.
Once home suddenly everything is great. His polar bear is there waiting and he gets to watch a movie right away and has a popsicle before supper.
Daniel gets home from school and tells me about his day and how difficult his French teacher is being, and that he will need help studying for biology and chemistry so since I’m not doing anything, can I help? And do I have any IDEA how hard high school is?
I quickly do some laundry (mine and Elliot’s clothes, which seem to always need a good wash after a chemo day). Did any of you note my mistake? Yep. The little appointment cards were in my pocket. Here is the photo, post laundry. Anyone care to try to tell me what time we should show up for our next appointment?
Martin and I finally find each other at about 9:30pm, on the sofa, Elliot beautifully asleep, Daniel off to his room, Jesse out for the evening… We are alone, and it is quiet, and we stare at each other for a few minutes, and then both start laughing.
Martin says “What a crazy day!” and I say “Why, what was so different about the day?” and he practically throws his wine glass at me.