In control of what comes next

What a year it's been.

So many lessons learned.

This year I hurt deeper than I knew was possible.

The pain in my heart literally took my breath away.

I stuttered for words.

I lost myself in grief.

Fear.

Anguish.

This year I learned about resilience.

Getting up each and every day despite the bully in the room.

I lived on coffee and text messages.

I stared fear in the face.

I told myself it was going to be ok, even though I felt I was lying.

This year I felt loss.

Loss of a child's innocence.

Loss of a family's routine.

Loss of control.

This year I felt love.

Deep, unwavering love from family, friends and even strangers.

I felt energy transfer from others' hugs, prayers, gifts and kind words.

I was literally lifted by the affection of others, 

I found myself reflecting and wondering...

Am I doing this right? 

Am I giving it my all? 

Will I have regrets?

Am I the person I really want to be?

This year transformed my children.

My marriage.

My body.

My spirit.

It shook us, but it did not break us.

It won't break us.

As this year comes to a close, I have made the conscious decision to usher out the negative aftermath. The pain and suffering, the worry and the fear. They are not welcome in my home or in my heart any longer.

I cannot control every twist and turn in my life. 

Life does not feel fair or equitable all the time.

Sometimes, life feels incredibly hard.

Painful.

Unrelenting.

My only source of control comes in my reaction to it all.

I am absolutely in control of what comes next.

I choose love.

Kindness.

Peace.

Isaak Family Christmas Card

Photography courtesy (Nanna) Heather Isaak Photography

Christmas is a few short days away.

The gifts are wrapped.
Dinner plans have been made.
Our dogs are clean and pretty.

This Christmas feels different for our family.

We've spent less money.
Worried infrequently about organizing every moment.

For the first time ever, our family has chosen the 'four gift' rule:

1. Something I want.
2. Something I need.
3. Something to wear.
4. Something to read.

Four gifts per child, plus a visit from Santa, who has always generously filled our stockings and left one toy per child under our tree.

This Christmas feels calmer.
Less cluttered.

The kids have delighted in the glow of the lights.
The pending family gatherings.
Advent candles.
Christmas movies.
Our kindness countdown.
Silly versions of classic Christmas songs.

This year I've stopped - really stopped - to watch my children play with the nativity scene in our living room. My eyes delighted in the joy of their recounting of the Christmas story, and I laughed hard and loud when I realized Ethan has been referring to Baby Jesus as 'Baby Jeez'.

We are blessed.

This Christmas, in lieu of the Christmas cards my hands never wrote, my note to you is this....

Find peace in a hot cup of coffee.
Feel the warmth of a family member's hand in yours.
Laugh so hard your belly hurts.

Look for silver linings in times of grief.
Breathe deeply in times of anxiety. 
Melt away the sadness with festive food and drink.

Be grateful for a warm bed.
Look with fresh eyes at the snow outside your window.
Hold your furbabies close and thank them for being steadfast companions.

Put
your
phone
down.

Be present.
Relish, deeply, in the charms of the holiday season.

Let's really live, this Christmas. 
Look with wonder upon the things which we too often take for granted.

Let's really love, this Christmas.
Take it upon ourselves to boldly declare our adoration to our most cherished loved ones.

Let's really appreciate, this Christmas.
Because we never really know when life's tide will turn and leave us far from shore.

Be
Peaceful.
Loving.
Joyful.
Gracious.
Kind.

And know that you are loved, beyond measure.

Merry Christmas
xoxo

MRI eve

After school today we came home and the kids had some free time to play. Brooklyn was agitated, and eventually had a meltdown 'because she didn't get to type on google classroom.'

I knew it wasn't about typing a few letters.
She hid in the corner for awhile, and eventually the truth came out.

"I don't want to go to my MRI on Friday!" she said, with tears streaming down her face. "Friday is a fun day at school. We go to the library, trade warm fuzzies and have a spelling test."

My heart fell.

I hugged her for a few minutes but was interrupted by our old dog's urgent bark to go outside. By the time I came back in, she had shut herself in her room. I intended to leave her there as she was calm, but she slowly crawled out of her room and looked up at me, ready to talk.

What happened next made me both very proud, and very sad.
Tonight she shared her feelings with a brave heart.

She said to me, "The cancer isn't coming back mama, because God is in charge and he won't let that happen. I prayed to him mama, my nighttime prayer. He's listening."

I explained that I wasn't sure why cancer existed. That I didn't think God chose her to have cancer, but rather that he was a capable companion along the journey.

"I don't want to have the MRI. It's like having the cancer out again."

It took me a few moments to take that in.
My experience with her 'having the cancer out' ranks far worse than any MRI.

 I asked why she felt that way, if it was because it hurt or was scary.

"Its both, mama. It's both."

"Mom, cancer can grow and grow and grow and grow."

I agreed, but explained that I didn't expect her cancer to return, That if it did, the MRIs help us discover it early so it didn't have to make her really sick. I reminded her that I loved her, and that I just wanted her to stay healthy.

"Mom, what is the name of the cancer I have?"

I stopped her there.
"HAD, honey. You HAD cancer. You do not have cancer anymore."

We worked on pronouncing the name of the cancer she HAD.
Neuro-blast-o-ma, she kept practicing, with a smile on her face.

"I need a hug, mama."

And just like that, she crawled into my lap and we sat.
More silence.

When she chose to speak, she said this.
"Mama, can you write a note in my agenda? Ask if I can write my spelling test on Monday?"

And just like that, fear loosened it grip and we went on with our evening.

This, is MRI eve.
This is cancer's aftermath.

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

A snapshot of child life

Last week Brooklyn and I took a trip up to McMaster Children's Hospital to visit our friend Nancy, one of two child life specialists in oncology. The pre-planned appointment was set with a goal of preparing Brooklyn for her next MRI, taking place this week.

Brooklyn spent about an hour with Nancy, focusing their time together on IV insertion and use as well as the MRI machine. Brooklyn's last experience went very poorly in nuclear imaging so Nancy kindly suggested we be more proactive in our approach this time around.

Brooklyn learned about how the needle retracts after entering the vein and leaves only a 'straw' behind in her body. She was reminded how helpful emla cream is in reducing needle pain, and practiced removing bandages carefully and slowly to diminish hurt. They talked about the difference between 'sleeping' at home and 'sleepy medicine' at the hospital, and why its so important she sleep through this test.

She also made a diagram to remind herself what she can and cannot do on the day of her MRI. The outside depicts things she can do - play ipad, close her eyes, take a deep breath, etc - and the inside marks the four things she cannot do - run, hit, yell or kick. She also pre-picked a special prize to reward her for good behaviour at this week's appointment.

Here are a few photos to help visualize her experience.




Visual reminder of can and can't dos.




Brooklyn giving her doll 'sleepy medicine'.




Step one of IV insertion.




After placing 'emla' on Nancy's hand, she then
practiced taking the band-aid off to reduce pain.




Miniature MRI machine

The child life team at Mac are incredible people. They are courage-builders, peace-makers, teachers and cheerleaders for children experiencing traumatic and scary situations. My heart is always so darn full after spending any amount of time with them.

Brookie's MRI is this week. I will share her results later in July.
Please pray for a NED result.

#TeamBrookie #WarriorPrincess

To my husband on our anniversary

On June 24th Jay and I mark a very special milestone.
Ten years of marriage.

We don't remember our wedding song. (and we think this is funny)
I can't remember our first date. (movies? dinner?)
But we will never forget the day we sent our first fur baby over the rainbow bridge.

You love beer.
I love rum and coolers.
But we secretly prefer a cold fountain pop to just about anything alcoholic.

We've endured two apartments.
One mouse house.
One family mortgage.

Three dogs.
One fish.
Two induced labours.
One emergency c-section.

I've had three surgeries.
You've had one. And a pretty scary MRI I do recall.
Throw in a broken ankle for good measure.

We've struggled to connect.
Taken our anger out on each other.
Minced words over nonsense.

Sleepless nights.
Anxiety filled days.
Overwhelming weeks.

Yet here we are.

Strong.
Faithful.
Loving.
In love.

Our relationship is built on a foundation of mutual respect, deep love and genuine appreciation for our similarities but more importantly our differences. We couldn't care less about the jones' or any other societal pressure to be something we are not.

We are who we are.
And it feels so darn good.

We've learned that stuff - possessions and displays of income - mean very little to us. We took a giant financial leap backward just to prove this point. And we both still appreciate this decision, four years later.

We are raising our children to express love.
Help the helpless.
Trust in God.
Sing because it feels good.
Dance for every reason possible.
Cuddle.

We've admittedly allowed our relationship to take a backseat to the daily rituals of life with three kids. But we don't mind because we know we love one another. Our bond is quiet, yet the strongest piece of our family. We know it, and our kids find comfort in this.

Thank you for loving me, especially on days when I don't even love myself.
For picking me up off the floor on my worst days.
And celebrating the best ones.

For reminding me of our blessings.
And turning down the to-do list echoing in my head.
For making me laugh every. single. day.

Thank you for being an incredible father.
Husband.
Best Friend.
Soul Mate.

Thank you for ten years, Jay.
Love, pure love, our love, will always carry us <3

Here's to ten more.

First since

This weekend was a special one.

Brooklyn celebrated her 6th birthday.
She also participated in her third-ever dance recital, a tap number for Fascination Dance Studio.

This birthday was her first since being diagnosed with cancer.
This recital was her first since being hospitalized.

First since.

The thing about cancer is that once someone you know is diagnosed, mortality bullies ego.

I thought about the death of my daughter from cancer.
I considered that it was possible to lose her, after more than five years on this earth.

Children die of cancer.
Despite medicine, surgery and prayer.
Daughters and sons die.
Brothers and sisters leave their siblings.

Brooklyn's outcome is far and away a small minority of cases. Last I spoke with Brooklyn's oncologist I was told that most children Brookie's age land on the opposite end of the spectrum, with widely spread and stubborn tumours requiring intense therapy.

But that didn't happen to Brooklyn.
She is NED.
No evidence of disease.

She is gorgeously recovered, and as a family we find ourselves marvelling at the first since situations.

This weekend we shed more tears of joy, felt more pride and healed more than we ever imagined. Jay shared with Brooklyn that he shed those tears today, while watching her dance her final tap performance to Bippity Boppity Boo, a fitting tribute to the princess who lived by 'have courage and be kind.'

Brooklyn responded to her Daddy's story by reminding him that the last time he shed those tears was when she was discharged from the hospital, post-surgery.

Tears of joy, another first since we feel so blessed to experience.

#TeamBrooklyn #WarriorPrincess

A lifetime of courage

I was at a local early years centre this morning, chatting with my sister-in-law about my messy morning and as we're talking, she was tickling my niece. Anyone who knows my niece can attest to the fact that she's adorable (and reminds me of Brooklyn's little days) and silly and fun.

My niece lifted up her shirt, begging for more tickles.

I stared.
My eyes were fixated on her adorable stomach.
There was no scar there.

My heart hurt.
My eyes stung.
It caught me off guard, to feel such grief.

Brooklyn's belly will always mark the place where doctors saved her life.
She will tell her cancer story every time someone notices the scar.

A four inch bravery line.
A lifetime of courage.

#TeamBrooklyn #WarriorPrincess

National Cancer Survivors Day

 

Today she climbed wooden obstacles. Tackled hay stacks. Crawled in the dirt.

Today she proved why neuroblastoma couldn't win.

Today, Brooklyn demonstrated why she is a child cancer survivor.

Today she is my hero.

 

#TeamBrookie #WarriorPrincess

This morning was a tough one

Brooklyn and I went up to Mac for her three month check up, sprinkle donut in hand, singing loudly to the 90s mix on the radio.

 

We arrived on time, and B was happy to be there.

She ran to the far right desk in the entrance of the 3F clinic, proud to know her way around.

She grabbed her paperwork, and in we went.

 

The 3F clinic was quiet. We may have been the first family to arrive.

She was happy to play toys and wait for the doctor until we found out she required a finger poke, as oncology teams call it, down in the lab.

We hadn't been there before.

A finger poke was new.

She was used to IV lines and major blood draws.

Because of this, she immediately shut down the moment I told her we needed to take a walk.

 

The child life specialist and I bribed her with ipad time and treasure chest rewards.

She was leery, but she went.

 

Upon entering the lab, her switch flipped.

 

Happy, agreeable Brooklyn was gone.

Angry, anxious Brooklyn had taken over.

 

The nurse, child life and I couldn't convince B to walk into the finger poke room.

She literally dug in her heels, crossed her arms over her chest and started shouting NO WAY.

 

My heart sank.

My body started to shake.

Tears formed in my eyes.

 

A beautiful, teenaged cancer kicker (who was waiting for her own finger poke) noticed.

With her thin frame, cute hat and positive smile, she came over to Brooklyn.

 

She was in for her second finger poke of the week, she said.

Do you want to come and see how we do it, she said.

It's really ok, she said.

You even get to pick the bandaid, she said.

 

Brooklyn's shoulders dropped a little.

Leery once again, she held my arm tightly and entered the finger poke room.

 

This gorgeous cancer kicker, with her wide smile, talked Brooklyn through the process. Why they warm her finger, how quick the poke was, how she looks for a cool bandaid while the nurse works in order to stay distracted.

 

B watched.

B listened.

 

In the end, it didn't matter. Brooklyn has post-traumatic stress associated with needles and her fight or flight instinct did kick in. She completely lost herself, kicking and screaming and hitting and crying so hard she was sweating.

 

It was overwhelmingly sad.
My heart broke into a million more pieces.

Cancer fucking sucks.

 

But, this girl, this teenager who's fighting cancer the way a boxer would his opponent, she reminded me of something.

 

Even when our bodies feel weak.

Even when our spirit is on empty.

Even when every single OUNCE of our mind tells us life isn't fair.

 

We have to fight back.

We have to stay focused.

We have to lead with love.

 

This girl, she led with instant and genuine love for my Warrior Princess, and for that I am so grateful.

 

This morning was a tough one.

I will take some time to cry.

Grieve.

Hurt.

 

And then I will pick myself back up and love, the way this beautiful girl demonstrated today.

I hope you'll do the same <3

 

#TeamBrookie #WarriorPrincess

My heart is with you

I find myself struggling to move through the pieces of trauma still fresh in my mind.

In quiet moments, I find myself re-living life at the hospital.
I think about the 'what if's'.
I feel guilty Brooklyn's journey was so favourable.

I cry a lot.

Take today, for example.
I cried because our priest told my son he was a gift to my husband and I, as his parents.
I cried because my son made an honest, yet embarrassing mistake.
I cried because I fought with my husband.
I cried because I was grateful for the love of my family and friends.

I feel angry a lot.

When life throws a curveball, I want to scream.
When I forget for the fifth time in a day, I want to throw something.
When my children press my buttons, I lash out with mean words.

The interesting question that has been ruminating is this:

Am I reinforcing or releasing my emotions?
Am I enabling the cyclical behaviour of repeating my feelings, or am I recognizing and accepting my feelings, then letting them go?

With trauma and grief, we still have some control.
It pains me to admit this, because over the last few months all I've truly wanted to do is crawl into bed and sulk, alone, in the dark.
But it's true.

During the trauma, most of us manage quite well.
Call it autopilot.
Or adrenaline.

But when the dust settles, we struggle.
When we realize what is lost - our mother, our daughter, our health, our normalcy - it is our minds that go into overdrive, processing and analyzing and storing the complicated mess of feelings inside each of us.

It is then, knee deep in our grief, we must take control.
We must ask ourselves, are we acting to accept our feelings?
Because if we can do so, we can move to release them.

Or, are we reinforcing them?
With food. Alcohol. Guilt. Unworthiness.

The truth is, I'm stuck here.
I can observe how I feel, but I am not yet capable of accepting the range of my feelings..

I don't have an answer to the question 'Is it ever going to get easier?', but I am grateful for the realization that life is uncertain at this time. Somewhere between observing and accepting feelings and emotions, I hope to discover healing in letting them go.

So.
For my friend who's lost her sister-in-law.
For my sister-in-law who's daughter never lived outside her womb.
For my friend who watched her mother pass away before her eyes.
For my friend who's daughter died too young, after such lengthy illness.
For my friend finishing radiation therapy.

My heart is with you.
My grief is your grief.
My love extends to you, as it does to me.

One hour. One day. One week at a time <3

Not all wandering means we are lost

I got asked this question earlier in the week:

"Can you let me know some differences (good and bad) about having 2 vs 3 kids?"

Hmm.
I did blog a little about this in the past, however I find the question so much more powerful and reflective, now that Brooklyn and our family have endured such a fresh journey.

Why did we choose to have three children?
Hmm.

The truth is, we really only 'planned' our first two. To be embarrassingly honest Ethan is quite the love child. No really, he was a thought in our minds, but he was not at all planned for and discussed in advance the way our first two kids were.

To most people, we had 'the million dollar family' already. Two children, one of each sex.
To the logical brain, we 'had it all'.

But here's the thing.

'Having it all' to me meant I needed one more child on the dock, in that classic photo I blogged about back in 2013.

To one friend it meant one little man and absolutely no more.
To another, it meant adopting four gorgeous little ones.
To a third, it meant two, but with a large gap in between.

The thing that ties us all together is this:
We listened to our hearts more, and our heads less.

Yes, having two children means life is more expensive.
Tables are more difficult to come by at a restaurant,
Post-secondary tuition will be outrageous.

But life will always be expensive.
And you can live with less.
Trust me on this one.

Restaurants are overpriced.
Food is too salty when you don't make it yourself.
And the best meals are always inspired by little helpers with big hearts.

And lastly, our children will never come out of school debt-free.
Its an impossibility, as I see it.
So we'll save, and we'll help. But they will also be responsible for their education and their future.

We listened to our hearts.
Not our conditioned minds, ego voices trying to 'protect us' from its perception of danger.

Having two children is 'easier' in many ways.
Less laundry, lunches to make and hands to hold when crossing the street.

But for my heart to truly be full, to feel complete in this stage of my life, I needed my wee man.

Perhaps because his bum shaking made me laugh when his sister was sick.
Maybe it's because his "I love you mommy"s watered my withering heart.
It's certainly because his presence, as loud and crazy as it is, kept our entire family alert and moving when all we wanted to do was hide under our covers and cry.

He was meant to be.
Three was meant to be.

And so, for any family. Any couple. Any single adult pondering these important questions.
The question of if, or how many children to have can most certainly be answered logically by crunching incomes, counting bedrooms and looking to social norms.

But the real answer lies deep inside the heart.
In the quiet before bedtime.
The alone time on the drive to work.
While out for an early morning jog.

"If you want to know where your heart is, look where your mind goes when it wanders."

Happiness is felt in the heart.
Not all wandering means we are lost.

The first scare

Yesterday I brought Brooklyn (and her brother) to visit their pediatrician.

Ethan's breathing has been problematic.
Brooklyn was having acute pain in her lower left abdomen, which made my mama instincts scream.

The doctor recommended we go to the hospital for xrays and an ultrasound.
We slowly walked out to the van, I buckled the kids in and shut the door.

My heart began to flutter.
I wanted to vomit.

Thank goodness for retired parents, as they (without hesitation) agreed to take E immediately so we could head to the hospital.

Now what?
What do I need to pack?
Who do I need to call?
How long will we be there?

We left the office and managed to get to my parents house within the half hour, with a stop at home and at the pharmacy in between the two. As I unbuckled E, the tears began streaming down his face.

He begged to go home.
He clutched my neck.
His entire body wrenched with heartache.

Guilt overcame me.
I could not comfort my son in his time of need.
I had to leave him behind, knowing he was struggling with great fear.

Will I tuck him in tonight?
Will I be home in my own bed tonight?

Brooklyn and I spent about six hours at our local hospital. I re-told Brooklyn's entire story from start to finish three separate times, each time feeling more and more anxiety. Brooklyn was so angry to be there, but thanks to some colouring supplies gifted to us during her illness she was distracted while I recounted hospital stays, pathology reports and the like.

I kept telling her it was going to be ok.
She was going to be ok.

Truth is, I had no freaking clue if I was right.
And that scared me to my core.

What if there was a pocket of infection left?
What if we needed to travel back to McMaster that night?

Then the list making...

I need gas, groceries for the boys, an overnight bag....

The spinning, circle of anxiety began.
Post traumatic stress and painful memories flooded my heart and mind.

-------

The good news is this:

Brooklyn has a couple of abdominal wall hematomas.
She is also thoroughly constipated.
Both are manageable, non-life threatening situations.

The bad news is this:

I can't stop crying.
I am so so sad.
My heart hurts full throttle again.

I cannot figure out a way to function today, other than to sing the song Brookie and I learned in family yoga class. Sung more than 100 times by now, this song is an invisible tie that will forever tether mother and daughter together.

Inhale (breath in).
Exhale (breath out).
I say thank you every day.

Inhale (breath in).
Exhale (breath out).
Namaste.

Sometimes we just need to honour our tears. <3

Adjusting to Anxiety

This week I visited my local early years centre with Ethan. It's one of his favourite places to play, run around and engage in some classic circle time.

This time it was stressful.
Anxiety overload.

You see, Ethan has a dairy allergy.
Children were running around with cream cheese bagels in one hand, and a ball in the other. Milk cups were bouncing off the gym floor and goldfish became a fun snack to eat at circle time.

I could feel my body temperature rise.
My heart flutter.
My ego voice began screaming to take control of the situation.

Thankfully, Ethan is not anaphylactic.
He will vomit, acquire skin rashes and go TOTALLY INSANE for 48 hours if he ingests dairy, but to date he hasn't needed his epi-pen (knock on wood).

I acknowledge that other parents are not responsible for keeping my child safe. The other caregivers had no idea Ethan has a dairy allergy, and they should not be asked to refrain from bringing dairy products into the centre. (side note: can we bring back the snack table mentality? Hold snack time sacred? It is a great line of defence for allergic kiddos.)

The part that threw me off was that I couldn't 'check' myself.
I couldn't tell if I was reacting appropriately, or if anxiety was leading judgement.

My brain is still very tired.
My body still aches all over.

I've heard other cancer families call this 'adrenal fatigue' or 'adjustment disorder'. I'm not entirely sure what it is, but it sucks. In some ways, being 'in treatment' was easier (I use this term lightly), as there was nothing to do but breathe and focus on the now.

As we step into the next phase of Brooklyn's journey, we are faced with worries about relapses, nerve damage and the awful, all too frequent nightmares both Jay and I have been living with.

This week has been a struggle for me <3
I promise to focus on gratitude and love in the week ahead.

Sharing for her future self

We are now home from our much-needed vacation and back to our new normal. Brooklyn is healing well, her next MRI is scheduled for April and from there she will endure monthly tests until June, after which she will have her first 3-month break from follow up.

Life feels mostly normal.

Though...
My body is still weak and tired.
My mind forgetful.
My pulse still races when I think about the last three months.

Part of our journey is saying thank you to everyone who took time to care for us the last while.
Cards will be sent. Emails written. Notes of thanks and love.

I am also committed to making Brooklyn a photo scrapbook, to help her see her acts of bravery, her Warrior Princess ways.

For this, I need your help.

I have created the email:

BrooklynWarriorPrincess (at) gmail (dot) com

Will you send her an email?
Share with her how her journey impacted you?
Changed your lifestyle? Opened your eyes to new perspectives?

If you could take some time, please email her at the address above. I know life is busy, I know words can be difficult for some, but if you could do this for her the impact will last a lifetime.

I will print copies of all the messages and store them safely away until the day I find she needs a reminder of her incredible journey. These will not be shared publically, only read by her and perhaps me as I print them for her memory box.

Thank you, from one proud mama.

#TeamBrookie #WarriorPrincess

Brooklyn proudly wore this button at Magic Kingdom in March.

Gratitude

Our intense winter is now over.
Brooklyn is officially in remission.
We do not anticipate any additional hospital stays.
(ok, I am knocking on wood here)

Our family is now home.
Together.

Back to 'normal'... ish...

To be honest, we're struggling with what our 'new normal' looks like. We've all changed, grown and been very deeply hurt by the last two months and so in many ways we are grieving. As we move through the next few weeks and months, we know one thing for sure:

We couldn't have done it without you.

The food in our freezer.
The cookie bouquets.

Sleepover fun nights for our kids.
Playdates.
Hockey games.

The toys and books and games.
Homemade cards made by children, for our child.

Love in the form of muffins, lasagnas and snuggly blankets.

Coffee deliveries, McMaster hallway hugs and surprise food and drinks and balloons to Brooklyn's room.

Beautiful jewelry.
Prayer shawls.
Stuffed animals.
Cozy new sweaters.
Scented bottles of instant relaxation and stress relief.

Walking our dogs.
Washing our clothes.
Changing our bedsheets.
Cleaning our house.

Checking in on us.
Every. Single. Day.

Sending simple messages of hope, love and strength.

Advice.
Words of wisdom.
A shoulder to cry on.

Your prayers.
Your dedications.
Your overwhelming energy healings.

Gift cards.
Money.
Loving cards and surprise gifts galore.

Old friends.
New friends.

Friends who dropped absolutely EVERYTHING to help us.
Over and over again.

Grocery shoppers.
Errand runners.
Snow shovellers.

Family who stepped up to parent our kids.
Take care of our house.
Love up our dogs.

We couldn't have done it without you.

Let me tell you a story...

The day of Brooklyn's biopsy in January was also the first day we heard the doctors use the word cancer. We signed consent for the biopsy, as well as a port-a-cath insertion, assuming she would begin chemo in the coming days.

We waited hours for the surgery, only to be rushed down and then told we got bumped.
We waited again.
Once she finally went under, Jay sat vigil in the surgical family waiting area while I wandered up to Brooklyn's room with the intention of getting something to eat.

When I sat down I could barely move.
My heart hurt so badly, my head was foggy and my eyes were swollen from crying.

There was no way, in that moment, I could have made myself something to eat.

Thank GOD for our village.

My dearest friend and her mom had delivered hot meatballs, fresh buns and cheese and cold drinks just a few hours earlier. I felt such gratitude, for their act of kindness.

The two most important mothers in my life were in the room when I arrived, and quickly jumped into action, making me food, hugging me tightly and forcing me to drink while I sat in complete silence.

Thank you, God, for these women in my life.

That was the moment I realized I was in no way capable of doing this alone.
That despite our courage and love, there was no way Jay and would manage this without our village.

And you, our village, just jumped right in and did your thing.
You said you were in awe of us, but really we were in awe of all of you.

Your selflessness.
Your ability to help at (literally) a moment's notice.
Your unrelenting love for us that saw you balance our life and yours at the same time.

Did you know my mom was recovering from major surgery when she took over as 'Sama-Mom' in my absence? Or that she had no voice for days on end... sicker than a dog and still, she came to help.

Every. Single. Day.

I will never forget speaking to my dad on the phone, that biopsy day in January.
Telling him his beloved Buttercup had cancer.
Begging him to tell me we were going to be ok.

He said to me,
"We've got you. We've got all of you. We will do this, together. We love you."

And that is why my gratitude is so fierce.
God has blessed me beyond my wildest dreams, with people who will never, ever let us fall.

So, thank you.
Thank all of you.

Your kindness, love and devotion to our family has been seen, felt and heard.
And we love you all for it.

xo

Warrior Princess - 1, Cancer - 0

Today Jay and I went up to McMaster to meet with Brooklyn's Oncologist, Dr. Portwine. Pathology confirmed the following:

Brooklyn had a stage 1 neuroblastoma tumour.

About 5% of it still contained 'hot' (active) neuroblastoma cells.
About 40% of it contained 'maturing' ganglioneuroma cells.
The last 55% of the tumour contained 'matured' ganglioneuroma calls.

The location of the tumour (in her abdomen, attached to the aorta) was such that they could not ensure a healthy margin between the end of the diseased tissue, and the beginning of the good tissue. As such, it is possible some cancer cells were left behind, though to the naked eye there was nothing left to see.

The tumour was 8.5 x 6.9 x 2.8cm.

What does this all mean?
Well the interesting thing about this cancer is that is actually works reverse to common knowledge about the disease. As the tumour matures, it moves from highly malignant to entirely benign. The concerns come when the neuroblastoma cells spread to other parts of the body, moving children from a stage 1 situation to something much more serious.

As far as unlucky goes, we are entirely blessed to be very, very lucky with a stage 1 scenario.

Brooklyn's oncologist is not requiring any further treatment, but she will be followed with regular MRIs (every three months) and urine tests (monthly) for the next year and beyond. Should something unusual arise, then additional tests will be ordered.

We've found two very good links to more information about this type of childhood cancer, read them here and here, should you desire.

Relapses for this type of cancer occur in 5-15% of low-moderate risk cases.
Brooklyn is not at a higher risk of a new cancer occurrence as a result of this one.

Brooklyn's wound is nearly healed, however she is still having some pain in her legs and numbness in her feet. They hope this nerve damage is only temporary. It is uncomfortable, but does not require meds for pain.

Oddly enough, Jay and I are mellow tonight. I will blog about our feelings once I have pinpointed them, but we think we just feel emotional and exhausted all over again.

Sad that pathology proved she had cancer.
Sad that she went through such trauma.
Sad that our new normal will leave us regularly worrying about a relapse.

I am sure our positive attitudes will return soon, but in the meantime we'll wait to celebrate until we feel good and ready.
xo

#TeamBrookie #WarriorPrincess

It's never really over

The thing about trauma is that it's never really over, per se.

Thoughts.
Feelings.
Painful memories.

They linger.
They take up space in our busy brains.
They can easily take over one's ability to feel happy, whole and in control.

The last couple of days I've been marvelling at how all roads in our family life led to the last 6 weeks. Gave us a 'tool kit' so to speak, for dealing with our family trauma.

I spent the last year engaging in meditation and mindfulness practices, resulting in the ability to see light during the darkest of our last six weeks. Friends, both old and new, who allowed me to entrench myself in their personal and family cancer experiences the last number of years, took it upon themselves to prop me up every single day of this journey. The practical way Jay and I rebooted our finances last fall, so that me being without work right now is a setback, not a sinking ship. The family yoga classes that Brooklyn and I started prior to her diagnosis  attuned her to the power of her breath, and taught her a simple song that calmed her worst fears and silenced her tears during our 15 odd days of inpatient treatments.

All of these roads have led to today, and just weeks after I posted about my self-declared 2016 Year of Celebration, we found ourselves stuttering and gasping for breath, trying to verbalize the sentence, 'Brooklyn has cancer' to our closest relatives. I will never forget making those phone calls, in the third floor hallway of McMaster Children's Hospital, a pile of mush on the floor. Trying, so so hard, to breathe.

I could be angry.
After all, it feels entirely unfair that a five year old should fight cancer.

I could be depressed.
It was painful to see my daughter, my own flesh and blood, in intense pain.

I could feel anxious.
After all, there are more results pending, and there will be follow up tests for many, many more years.

I could loathe God.
Many people do, following a trauma.

The thing is, I don't.
I have moments of anger, sadness and anxiety.

But I mostly feel gratitude.
Intense gratitude.

For the 'doers' who carried my family and I through this journey.
For my husband, whose love for our family carried us when I fell apart.
For my dearest, most incredible friends who lived inside my head throughout the last six weeks, offering daily support, checks ins and countless opportunities to say they loved me.
For my body, which carried my soul.

You see, we will all experience trauma at some point.

We will lose people we love.
Parents. Siblings. Babies. Neighbours.
Some of us will fight cancer, disease and mental illness.
Be unemployed, battle addiction and see our children struggle to succeed.

We will hurt, deep down in our souls.
We will feel like we cannot go on.
Like the world is better off without our pain.

But wait.
We can choose another path.

Gratitude is a conscious choice to look at every single interaction in our day as a gift, a silver lining through the thick grey clouds of trauma.

Let's be honest here, trauma brings out the best in the people we love. Coincidentally, trauma also showcases the tragic flaws in others, some of which I can personally say have been disappointing to witness.

But I can still choose gratitude.

I can choose to feel 'lucky' that Brooklyn's type and stage of cancer was the best possible outcome in the medical books. Even if being truly 'lucky' is having a child that never experiences cancer at all.

I can choose to be grateful that I am home with my children, snuggling and caring for them, despite the fact that this means my income is nil for the foreseeable future.

I can choose happiness.
Peace in my soul.
Love in my heart.
Faith in God.

A very wise friend said to me, once you battle cancer it's never really over, it just becomes the new normal. You live for today, and you make a choice not to worry about tomorrow.

And so it may never really be over, per se.
But I firmly believe the aftermath of trauma is manageable with a heart full of gratitude.

#TeamBrookie #WarriorPrincess

Warrior Princess

What does it mean, to be a Warrior Princess?

 A warrior is brave.

 

 

 

 

 A warrior has a strong heart and fighting spirit.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A warrior defeats pain and is left with bravery lines.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 A warrior believes she can do anything, even if it’s really hard.

 

 

---

 

 

A princess is beautiful, inside and out.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A princess cares about and loves others.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A princess knows a twirly dress makes everything all better.

 

 

 

 

 

 

A princess believes she can do anything, even if it's really hard.

 

 

 

 

 

 

 
 
 
 

She is the perfect combination of warrior and princess.

And we are so proud of her.

 
 
 
 
#TeamBrookie #WarriorPrincess