What's the worst case scenario?

I was at a meditation class last month where we talked about fear.

Discussed the way fear can rule our life.

Create unhealthy habits.

Build anxiety.

Fear is one of those feelings that doesn't go away.

It lingers.

Wakes you up at night.

Follows you around all day

The voice of fear is loud.

It bullies you with its scary messages.

Often difficult to manage, fear has the ability to control us.

Our thoughts.
Our health.

Our body.

I have learned this year to notice when fear is present.

My body tenses up. Becomes achy.

My mind races.

I struggle to relax.

For my kids, fear presents itself with a strong need for extra hugs.

Cuddles at bedtime.

Tearful outbursts.

A question was posed, at meditation that night.

What's the worst case scenario?

If I dug to the greatest depth of the trance of fear, what is the worst possible outcome?

Truth is, I cried when I was honest with myself.

Brooklyn's death is my worst fear.

Seeing cancer take her from me is my greatest fear.
Every. single. day.

But wait.

The interesting thing about this exercise is that since I was honest with myself, I have felt less weighted in this fear. The truth helped me realize how much this fear was ruling my every thought and movement throughout the day.

I am now trying to meet this fear with love and courage.

Faith in God.

Radical acceptance.

It's damn hard.
But it's possible.

So, next time you feel fearful, ask yourself:

What is the worst case scenario?
Dig deep, keep asking 'so what' until you really get to the root cause.

You might be surprised how much relief you find in exploring the answer.

To be more peaceful

It's been some time since I wrote.
In many ways its been a purposeful move.

I have little to say.
Correction.
I have few positive feelings to speak about.

Truth is, this fall has been very hard on our family.
Brooklyn is experiencing symptoms similar to PTSD... generalized anxiety, fear of being alone or in the dark, exaggerated startle response, refusal to discuss her trauma and deeply negative emotions.

She recently expressed to me that she 'feels happy on the outside, but sad on the inside.'

At play therapy this week she worked with a sand seive, choosing to place 'heavy things' onto its plastic surface. Coffins, tombstones, fences, doors and houses were chosen over people, strollers, and other more happy items.

Its horrifying.
A six year old should not feel this way.

Should not literally freeze up and be unable to walk when asked to visit the doctor.
Should not scream and cry when someone knocks at the front door.
Should not be worrying about the cancer coming back.

But she is.
And we are struggling to manage.

Tonight, her big brother broke down in tears as he recounted how he feels like the last to receive love and help. Suggested two kids would be better because then he wouldn't have to wait for us to read to him at bedtime. He cried when I admitted his sister is very sad. That her fears are real and its ok for him to feel sad too.

That I feel sad too.

Truth is, we are struggling.
I am struggling so badly.
I can't even articulate my emotions.
But I am weak. Tired. Foggy again.

We are fighting the aftermath of cancer.
For me, it feels like waiting for it all to happen again.
For her to relapse.

Over the next four weeks Brooklyn will complete a plethora of tests including an EEG, ECHO and MRI to determine if she is having small seizures, if her lymph nodes have enlarged beyond 3cm, if her heart is causing her dizzy spells or the cancer has returned.

We are quietly fighting.
Still fighting.

And so we pray for strength and love.
And we ask for your patience.
We do not feel ourselves.

In the words of Brooklyn, when asked what emotion she'd like more of, we'd really like 'to be more peaceful.'
Here's hoping that Christmas brings just that.

<3 <3 <3

#TeamBrookie  #WarriorPrincess

d day. part three.

(3 of 3)

diagnosis day. part three.

I've struggled to write this final post until today. If you've been following my blog, you know I've written the story of dday part one and part two. I've also written about the moment the nightmare ended, which picks up the story after Brooklyn's biopsy.

The realization I came to today is that part three isn't over.

Part three of Brooklyn's diagnosis day story began the same day active treatment ended, by a stroke of gorgeous luck or perhaps with God's grace. The most unusual case of stage one neuroblastoma seen in ages, which still causes imaging technicians and doctors alike to proclaim how lucky we are.

Part three is everything that has happened since.

It is the first scare.
The unwanted guest.
The first since's.
The follow up scans.

It is all of these things and so much more.

Brooklyn will always be a child who had cancer.
Her diagnosis will not change.

The problem is, the outcome could.
NED now, but what if the next scan tells us otherwise?

The most profound transition, one which is shared by many cancer families I have met and spoken with this year, is the one which takes place once the child completes active treatment and begins after care.

This is the place where a singular hole in one's mental wellness can result in a fall out.
Where anxiety and depression loom.
Where each worry must be replaced with the very powerful statement:

"In this moment, right now, everything is ok."

And so, as Childhood Cancer Awareness Month comes to a close, I'd like to suggest this:

If you know a family who has been touched by cancer, reach out and check in.

Not so much on their physical health.
But on their mental health.

Honour survivors and angels alike through a commitment to ensuring that each family member is supported through their grief, anger, fear, anxiety and even survivor's guilt.

In many ways, this is the diagnosis day story they struggle to share.

<3 <3 <3

d day. part three.
January 20th, 2016.

#CCAM #WarriorPrincess #TeamBrookie #MorePreciousThanGold

d day. part two.

(2 of 3)

diagnosis day. part two.

Immediately following the news of Brooklyn's cancer diagnosis, Jay and I agreed we should call a few people to update them. I offered to call our three sets of parents, and ask them to share with the rest of our family.

I remember the exact spot I sat in, a crumbled heap on the floor.
I was outside 3B2, where a mechanical penny machine sits in glass.
I sat down on the ledge beside it, unable to walk any further.

It was cold.
Hard.
Exposed.

I didn't know where else to go. I think, in a way, I needed to be in a public place, and as it turns out God blessed me with a McMaster mom angel who stopped not once, but twice to check in on me.

"I can see you are having a hard day. Please let me give you a hug." she said. I was so shocked by her kindness, yet so grateful for her in that moment.

I called my mother-in-laws. One at work. One at home.
I also called my parents, my dad picked up the phone.

Never in my life have a stuttered like that.
Never.

I couldn't string a sentence together.
I remember saying 'Brooklyn... has... cancer.... surgery... biopsy....'
But I don't remember being able to say much else besides a quiet request that they each contact our siblings and extended family to update them of this news.

For the first time as Brooklyn's mother, I was useless.
There wasn't a thing I could do to stop the train.

A train which derailed, earlier that morning, and was speeding.
Speeding down a hill so steep, I was breathless.

---

Because Brooklyn was on the 'add list' as a registered patient in surgical, hospital OR time was very fluid and changed in a heartbeat. We knew she would have surgery later that afternoon, a laparoscopic biopsy, to test the tumour inside her abdomen.

What we weren't prepared for was hearing the head of oncology tell us they'd like to insert a port-a-cath into our daughter's chest. This tool was vital for chemotherapy, a medical procedure they believed essential given the potential for an advanced stage cancer.

I remember sitting in the social room in 3B2, surrounded by families playing games, laughing and participating in craft time.

I remember our table was not laughing.
Not having fun.
Not even close.

The rest of that afternoon was like a hyperspeed episode of a hospital drama.

From the meeting, to a child life specialist racing down the hall to tell us she was being taken for surgery.
To the OR holding area, only to be bumped and forced to wait almost two more hours for surgery.
Into the OR, where my daughter begged to go home, then fought every doctor and nurse who attempted to touch her.

I left my daughter in an OR.
Cancer in her stomach.
Her future resting on the results of a biospy only moments away.

I left her.
I couldn't help her.
I couldn't fix it.

I remember falling into Jay's arms, a heaping mess of exhaustion and anxiety.
I remember him forcing me upstairs to Brooklyn's room, to my waiting mother and aunt who, despite my best attempt to tell them to leave, stayed to care for us. Thank God.

I was completely numb.
I was shaking.
Thousands of pounds on my shoulders.
My head was exploding.

They made me a sandwich.
I sat in stunned silence.

d day. part two.
January 20th, 2016.

#CCAM #WarriorPrincess #TeamBrookie #MorePreciousThanGold

d day. part one.

(1 of 3)

In honour of Childhood Cancer Awareness Month, I've decided to write and share a few deeply personal stories about our childhood cancer journey. I hope that by posting them, they may inspire other cancer families to share as well, as a way to honour their grief, spread awareness and find healing in their own words.

Today I begin sharing the story of d day.

diagnosis day. part one

Day three of our Warrior Princess's first hospital stay.

The evening prior, Brooklyn had completed a CT scan under sedation. Doctors had been very deliberate in using the term mass to describe the fist-sized growth in her abdomen.

This morning it was different.

Jay and I knew that surgical rounds were early in the morning, 7am-ish, so he raced from our home in Niagara very early to make it up to McMaster in Hamilton, on time.

Brooklyn was tired and groggy, I was beyond exhausted.
The first two days had been painfully long, wrought with fear and anxiety.

This morning, the surgical fellow assigned to Brooklyn's case, a man not much older than myself and who I instantly came to trust, leaned into B's room stone-faced and serious.

"We need to talk about Brooklyn's tumour."

I could feel the heat rising in my chest.

We took a slow walk down the hall, into a room which we later discovered was the staff lunchroom.

We sat down.
Jay and I on one side.
Dr. Flageole and Dr. Amar on the other.

My hands shook.
Jay was white as a ghost.

In the minutes that followed, the surgical team explained the size of her tumour, the location and the concern regarding her aortic vessel. Over and over again they spoke, drawing pictures and asking for us to confirm we understood. Finally, they asked if we had any questions.

In a whisper, with my eyes full of tears, I asked,
"Is this cancer? Does Brooklyn have cancer?"

His answer broke me in a way I was never prepared for and still have not recovered from just yet.

"We need to do a biopsy to find out, but yes, we believe this is cancer."

A
MILLION
P
I
E
C
E
S

My heart broke into a million pieces.
I lost my breath.
I gripped Jay's hand, afraid to look at him.

scrappy imagery from the doctors

The doctors excused themselves, offering us a few minutes alone. The sound of the door sliding closed was deafening, I couldn't take my eyes off the paper image drawn of this beast, called cancer, inside my baby girl's stomach.

We fell apart.
Heavy tears.
Shattered hearts.
Parenting soulmates.

Broken.

There were no words.
There was only numbness.
Burning in my soul.
Ringing in my ears.
Cold skin and hands.

Grief.
Painful, breath-taking, instant.

After five minutes, we dried our eyes, stood up and did the only thing we could.
We walked back down the hall to our beautiful daughter's room, and we smiled at her.

d day. part one.
January 20th, 2016.

#CCAM #WarriorPrincess #TeamBrookie #MorePreciousThanGold

Haircuts and healing

Today I crossed something off my bucket list which I never, ever thought would be so personal.

Today I cut my hair off.

Two, 12-inch pony tails.
Two, 9-inch pony tails.

All four ponies will be delivered later this week to Wigs for Kids, an organization that provides free wigs for kiddos with cancer and other life-threatening illnesses.

It was always my intent to grow and donate my hair someday, it was a bucket list 'must do' before I die. When I left my full-time career and 'gave up' highlighting my hair I knew I was one step closer.
Last summer, when Brooklyn decided to donate her hair, I made a promise to grow mine and donate it as soon as I could. Frustrated with the length, but determined, I continued to grow it. After all, a friend battling breast cancer had no hair... why should I complain?

Less than 6-months later, Brooklyn was diagnosed with cancer.

My hair, growing for an unnamed, blank faced child was suddenly replaced with the vivid image of my own daughter.

What if she needed my hair? What if I needed to shave my hair in solidarity with my daughter?

Early in her diagnosis, when doctors believed she required chemotherapy, my hair suddenly became a way to 'help' her in some way. I held on to this perception for many months, even once doctors were firm that she did not require chemo.

I couldn't stand the thought of cutting it off.
I felt like it needed to be on my head.
Waiting for Brooklyn.
Just in case.

Even in July, when we celebrated with our family and friends, I secretly planned a surprise hair donation chop off and couldn't execute.

What if she needed my hair?

It has taken until now, today, to take this next step in my healing process.

On the drive to my girlfriend's salon, I whispered up to heaven, asking for a sign my family angel guides were with me. I was sick to my stomach... that ego voice in my head had been telling me for DAYS that if I cut my hair off, her cancer would return.

Today, in the company of a dear friend, I cried and laughed and cried again.
She took her time, kissed my head and reminded me that it was going to be ok.

Slowly, she cut the ponies, one by one.
I laid them in my lap, crying.

Crying in the moments following the big cut <3

That sign came, as clear as day, as my dear friend worked away on my new cut. Playing in the background of her home salon, these lyrics....

"Courage, my word
It didn't come, it doesn't matter
Courage, your word
It didn't come, it doesn't matter
Courage, my word
It didn't come, it doesn't matter
Courage, it couldn't come at a worse time."

(The Tragically Hip, Courage)

Tonight I will pray over this donation, and ask the Lord to bless this hair with strength and love for the child who will wear it next. I will also pray for her mother, whose heart is broken in a million pieces. I won't ever meet her, but I understand her more than she knows.

#TeamBrookie #WarriorPrincess

The unwanted guest

What a July it's been, for our family.

Brooklyn's latest test results came in a little over a week ago. Her MRI was NED (no evidence of disease) and while her urine markers were up, the oncologist assured us it's nothing at all to worry about as random urine samples for absolutely anyone can change from day to day.

The spot on her liver has not changed in any way, therefore the doctors will continue to monitor it with ultrasounds every three months after her MRI scan and bloodwork.

She has officially moved to the 'aftercare' clinic in 3F at McMaster.
The secretary congratulated us when she handed back our appointment card.

This month we celebrated and thanked our friends and family with a big party at our place... food, cold drinks, ice cream, fun and lots of laughter. We cried a little, hugged a lot and ended the day feeling overwhelmed with gratitude for our village.

A front AND backyard full of our family and friends. We are so blessed.

Brooklyn is, by all definitions, back to normal.

She'll be participating in the Heater's Heroes event next month in Niagara Falls.
She's happily attending camp twice a week.
Swimming in the pool with her brothers.
Playing with friends.

She is a survivor.
She is a hero.
She is my daughter.

Despite all this goodness and normalcy, lingering doubt remains.
My mama brain never shuts off.

She expressed feeling very dizzy two days in a row this week and the roller coaster of worry began...

What if?
How could?
Why?

Let me tell you, the thing about cancer is that once it's arrived, you can never really pack it up and send it out the door. There will always be an unwanted guest in the heart of a parent whose child experiences cancer.

I pray for, and worry about my kiddos every. single. day.
But this unwanted guest called cancer, it has the strength to overwhelm gratitude.

#TeamBrookie #WarriorPrincess