To my little Zoé

It’s back-to-school time.

I just dropped Lana off at school and here I am, sitting on the bench in this beautiful flower garden.
I see a dove  fly high into the sky.
I talk to you sometimes.
But often when I get no reply, my thoughts run away.

I realize how life is a constant battle and I feel so tired of having to constantly fight for everything.
But do I have the right to complain?
You fought for your whole life to live.  Simply live.

My thoughts go that moment on October 28, 2008 when your eyes met mine for the first time. Beautiful dark eyes that seemed to say a lot about what you’d do here on this earth.

The hours of waiting for a diagnosis and ultimately you were less than one day old when you were already being given your first chemotherapy over three days.

I waited weeks to finally hold you. I watched your stomach for days and days, hoping it’s size would shrink. It was so big that you could not breathe on your own. I could see the fear and the doubt in the eyes of doctors who did not know if you would survive.

Your beutiful dark eyes were not surrounded by white but yellow because your liver was so sick. Your skin was not pink like those of newborns, but eggplant.

But none of that mattered, because I believed in you, and you did make it.

The joy of seeing Lana happily fulfilling her role as a big sister when you were finally allowed to come home after three months at the hospital. The road had been long. You suffered from the morphine withdrawal and had to be fed through a tube because you couldn’t eat.

But I believed in you and you made it.

What I will remember the most about you is your dimpled smile, and your magical laugh.

In April 2012 you relapsed. We were back in the hospital world and this life where we speak in a medical lingo that most people don’t understand. The complicated names of each chemotherapy drug, the names of the different cells in your blood that would be regularly analyzed. We learned all of this.
Everything else was put on hold.
Only you and your sister mattered now. Nothing else.

 

The world count stop turning. Whatever.
We were in a battle for life.

You received four cycles of chemotherapy between April and August. Every three weeks between five and six days in the hospital. Then in September you had the major surgery to remove the tumor, with six long hours to wait. Barely awake you were hungry, demanding your bottle and wanted to get out of bed. You were full of energy for life!
I smile thinking about the surgeon. He told us we should expect you to be in the hospital for ten to fifteen days at least. But just five days after the surgery you were playing outside on your tractor. In great shape.

I have trouble remembering the fact that after that we had two years with only check ups every three months. Without any treatment. An almost normal life really.
Two years is not nothing – it matters. We had that. At least..
But still I feel we should have savoured that time, enjoyed it more, appreciated it more. But we always end up too busy with daily life and all the trivial concerns we all have.

It’s true, you always remember negative and sad things than happy.

People are more interested in tragic news that happens far away than good news close by, and bad things seem to flood the news, internet and social networks rather than good things happening right here in our own neighborhoods.
People put more importance on numbers, statistics and performance rather than the welfare of their coworkers or employees.

I think we’re missing the point.

And yet, I think we still managed to enjoy every moment of happiness that life gave us. We built our family home, and normal life went on and you, Zoé, were able to go to kindergarten, which you loved.

In October 2011 when I saw you limping I told myself that it was not a simple sprain. When I brought you in for the x ray I knew that the cancer was back.

Once again.
But no time to cry – this time we had to attack it with the heaviest treatments available.
Eight intensive courses of chemotherapy followed by stem cell collection and high-dose chemo for two months in Bern in isolation. From November 2011 till April 2012.

I dont know how many general anesthesias you had, I lost count, but I know you reacted much better than with just the sedation drugs.
It was so hard for me to get you to fall asleep with those drugs. You would fight to not sink into sleep. It would take hours and I would have to be watching you all the time so that you wouldn’t get hurt because you still wanted to walk and run despite being only half-conscious.

You sure made them sweat, all those doctors and anesthesiologists (and me), but I defended you tooth and nail. I was the one who knew best how you would react to the medication and what was best for you, and I demanded to be heard.
Sometimes unfortunately I could not make myself heard. Like that day in Bern, when I should have managed to get them to listen.

They didn’t now you well, and you were in surgery once again for the umpteenth time and I came down to the surgery floor and waited outside of the operating room door.

And I heard you crying in fear and pain.
Yes you were awake because the anesthesia didn’t work, but the surgey was far from over. I had told them, but they hadn’t listened…

For the next few days, to not see your dimples or hear your laugh because you were so sick during those chemos was actually much harder to bear than the two months of sleepless nights in Bern when you woke up every hour. My presence, my arms were always there for you, every night we would lie together in bed and I could reassure you.

I’ve often wondered if we all have one destiny and whatever road we took it led us to our fate whether we wanted it or not.
But of course I always held on to the hope that you would be cured. That’s what kept me going.

 

I believed in you and together we made it through this part.

On December 5, 2012, I was sitting in front of the MIBG machine that was doing a complete scan of your body. The images stood out nicely on the screen. I felt sick when I saw the bright mark on your leg.
The cancer was back. New tests, new anesthesias, biopsies and waiting for the results, which came just before Christmas. They couldn’t find any trace of cancer in the samples taken in the bone of the tibia. The scan picture was a mystery, and we had a wonderful Christmas.

Three months later, on March 5, again I sat in the same spot during the scan, watching the screen. The bright line was still there as I had suspected, but now there were two new spots on the knee and the upper leg.
The cancer really was back and another battle had to be fought. Another chemo had to be tried, while the doctors searched for a treatment, THE treatment that could cure you.

True to yourself you faced all these hospitalizations and chemotherapies with a smile and a lot of courage. You arrived at the CHUV hospital proudly riding your blue scooter and would throw yourself into the arms of your favorite nurses. Ready to fight again.

The chemo did not work.
It was hard for me to accept it, when you looked so great. You seemed to be in such great shape.
And then we were left with only one last option, one possible treatment that could cure you. We had a 30% chance. It’s not much but it’s still something. At least there was still one last chance. So we clung to that.

Ten days in isolation because you were radioactive. You were amazing. At age only four and a half you were the master of the ipad and could connect to your skype account to talk to everyone you loved.

Then came the day to once again do the scan, to see if it had worked.

Nausea, fear, anger, sadness. All these emotions when I saw the images of your body covered with bright spots that meant that the cancer was everywhere. You still seemed to be in great shae. But this time, I knew. Nothing could save you now.

That look you had given me just two weeks before when you said: Mom, I dont want to go to heaven yet. And I answered you: everyone goes to heaven someday.
I never lied to you, ever.

 

So that day, I had to tell you that you would be going to heaven soon.

The look on your face when I told you.

 

The look on your face when you finally saw Winter the dolphin.

And the last look on your face, the one that haunts me day and night, while you were here in my arms, just before taking your final breath and falling asleep forever.

Today I’m here, sitting on this bench.

I speak to you, but in reply I hear only the sound of wind instead of your little voice.
I can’t hold your little warm hand in mine, I can’t hold that little body that I know by heart against mine. Instead of stroking your soft little hair I stroke the dolphin that adorns the stone engraved with your name.

You were my sunshine, yes life was beautiful with you by my side.

Your maturity, your wisdom, your strength, your courage and zest for life are a lesson for all.

I miss you, I miss your laugh.

Thank you for having been a part of my life.

You no longer need to fight, and that’s good, it’s a relief for me, but that does not soften my pain.

Because for me, nothing will be as before.

Mom.

Text written by Natalie Guignard-Nardin September 25, 2014

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