The five-year finish line

Our sweet, beautiful warrior princess has crossed a finish line we've only dreamed about. Today Brookie is officially cancer-free five glorious years!

She was in agony.
She was so sick.
She fought PTSD post-treatment.
She still fights preverbal trauma related to her journey.
She has a very real phobia of stickers that creates panic, leaves her in tears and interrupts her daily life.
She has a long, deep bravery line covering her tummy.

But she survived.
She is thriving.
She is healthy.
She is beautiful.
She is brave.
She is stronger than she even realizes.

And while she is enduring a new journey of life with celiac disease, she continues to show all of us how life is meant to be lived.

She is so real and authentic.
She deeply loves her family and friends.
She enjoys her hobbies.
She provides herself and others grace.
She embraces creativity and laughter every, single, day.

It is not lost on Jay and I how fortunate we are. We remember the dark days wondering if Brooklyn would honestly live or die. We know many children do not make it to this milestone. We wish we could change that. It hurts our hearts. xo

So we humbly celebrate today with a giant dog on the lawn, Paris decorations in our dining room and gluten-free cupcakes and pizza after school.

We will keep crying, today.
Keep hugging.
All glory to God for our healthy, beautiful baby girl.
Thank you Lord Jesus.

#cancerfree #fiveyears #childhoodcancer #thankGod

The familiarity of a pandemic

It's been six weeks since our family moved towards what we now call, quarantine life.
A month and a half, already.
That amount was shocking for the kids.

No friends at school.
No coffee chats with the ladies at work.
No commute.

I've been trying all week to come up with the words to explain how we've adjusted as a family. This new life of ours is all at once very, very different.

But also,
familiar.

I know that probably sounds wild, but over the last six weeks I've noticed that many of the feelings other people have expressed during this global pandemic, have been lived in our home before now.

Frustration.
Difficulty with blurred lines between work and home.

For many who now find themselves working from home while supporting the distance learning of their children, many days are ending in tears, arguments and a sense of helplessness. I sit very comfortably in this feeling, however, because I freelanced for nearly five years. Never once during that time did I have boundaries between home and career, often working with a baby on my lap. It was some of the most exhausting work I ever experienced, and while it is truly difficult, I feel well-prepared this time around, for the most part.

Fear.
Intense, debilitating fear.

We know this beast well. We looked cancer in the eye and genuinely wondered if it would take our daughter. Fear of loss and sickness continues to rear it's ugly head when triggered, especially right now. We continue to look it in the eye at a distance, as we meet new childhood cancer families and stand behind, but always part, of their support network. This one requires the strongest mindfulness techniques to combat, from my experience.

Anxious, debilitating worry.
Never-ended rumination about what could happen.

This is our life with anaphylaxis. We legitimately worry about dairy attacking our son the way many describe their ongoing concerns about COVID-19. It's stop-you-in-your-tracks worry, but it's literally our life, every day. It's not going away. And just as the world hopes for a cure, we pray for new therapy to reduce the life-threatening nature of a simple allergen. From experience, anxious thought requires open, honest communication to lessen the rumination.

Isolation.
Being alone and feeling unconnected to others.

Ah, this feeling was also prominent during Brooklyn's cancer journey. Whether it was isolation in a hospital room, or in our home, we felt incredibly detached from our usual community. At some points we stopped reaching out to others because we were just trying to survive. My guess is that this is a very normal feeling when dealing with life-changing health events.

Who knew that five years of freelancing, a cancer journey and living with food allergy, along with a conscious choice to buy less 'stuff' and slow down our family lifestyle, could have prepared us for a pandemic.

But it has.

And I find myself oddly comforted by these familiar feelings. I lean into this crazy, wild time and find myself thinking,
if we survived all of that, we'll get through this too.
And I believe we will.
All of us.

But that doesn't mean it's been easy.

We endured two weeks of very scary germs, in the last six weeks.
Said goodbye to our sweet old dog, Moses.
I have had near daily dreams about scarcity, forgetting important items and not knowing what to do.
I cry, a lot. In fact, every one of us cries pretty regularly.

I MISS HUGGING THE PEOPLE I LOVE.
This one deserves capitals. It's not enough to see their lovely faces, I am a hugger and miss the transfer of love that comes when family and friends embrace for a moment or two, to say they care.

This is an exceptionally difficult time to be alive.
But if I am right, it's one we will look back on someday and feel really proud about.

We're learning a lot about ourselves.
Other people.
Bad habits.
Things we really didn't need.
How the earth can heal.

How will the world awaken from this pandemic?
What will people never go back to doing?
Will people see how much 'stuff' they never needed?
What family values will change as a result of this time?
Will the earth finally receive the respect it deserves?
Will healthcare heroes continue to feel the love through long-lasting changes in the availability of PPE to keep them safe?
Will frontline workers finally get the living wages they deserve?
Will the world idolize the wealthy few less, and the collective community more?

I am so curious.
And optimistic.

And I hope you are, too.
Hang in there. Ride the waves. Anchor in self-care.

We can do this.

January's Jaw

January's jaw is wide open.
This is the month that opens the wound with one swift bite.

Flashbacks.
Restless nights.
Foggy days.
Broken heart aches.
Tears.

So many tears.

Today alone, I was observing a physio demonstration and - FLASH - I was back in the physio room with Brooklyn, urging her to step up and down, up and down. Her wound fresh, her pain intolerable.

At dinner, Brooklyn mentioned the show Little Charmers to her brother and - FLASH - I was back in her tiny private bathroom with her, watching the show, listening to her singing away while she tried to get her bowels moving after surgery.

I opened up Facebook and read a post about a new comic book themed around conquering the dreaded MRI machine and - FLASH - there we are, again. And again. And later this spring, again.

My local childhood cancer support group sent an invitation for a pre-valentine's baking event to surprise families in hospital and - FLASH - it's Valentine's Day, we're decorating cupcakes delivered by child life to our room and cutting hearts to adorn her IV pole.

Brooklyn just called for me, it's been an hour since I said goodnight but she's still awake - FLASH - I'm back in her room, dark and buzzing, feeling more alone and terrified than I ever imagined possible.

This is real life, returned.
Three years ago this Sunday, Brooklyn was diagnosed with cancer.

Neuroblastoma. Stage One.

Unfortunately this time of year brings it all back.
It hurts all over again.
It torments my days and nights.
My thoughts, my dreams.

And while Brooklyn is a survivor, and life continues to present itself with joyous moments, tremendous blessings and so much love, cancer still lives here.

So the tears, they will fall.

But I promise to keep going. I continue to quietly hold the hands of every childhood cancer parent, old and new, as we navigate this journey together.

#teambrookie #warriorprincess #childhoodcancer #survivor

Survivorship, exploded

Over the last month our family has battled some intense germs.
Fevers, coughs, lost voices, painful body aches.
Runny noses, headaches, exhaustion.

It's been a rough go, as anyone with multiple kids know its usually makes it way around a family, one child at a time. Ironically, the germs usually give parents a break of a day or two, just long enough to think it's over before it hits the next kiddo.

But that's not the point of this story.

Two weeks ago Ethan came home from school and told me he had a little nosebleed. Just a small drip that he said didn't hurt, only needed a quick wipe and off he went. I figured it was because his nose was all dried out from the germs, no big deal.

About 10 minutes later he had massive, gushing nosebleed.

GUSHING.

He absolutely flipped his lid. He was hysterical, screaming and crying and refusing to allow me to pinch his nose to help it clot.

I could feel my heart start to race.

I got him to sit, but I screamed for Nolan's help, I needed tissues and a distraction to calm his little brother. Nolan was such a good boy, he ran around the house grabbing everything we needed, including the ipad which he promptly tuned to Ethan's favourite show, Fuller House.

My hands were shaking.

About 10 minutes later, his nose finally stopped. It was a doozy, the garbage can was a third full of red tissue and he was pale and tired. I laid him down on my side of the bed, his brother on his dad's side, and together they watched Ethan's favourite episode.

Then, I unraveled.

I couldn't breathe.
I was shaking uncontrollably.

My mind raced so fast.... cancer... death... disease... hospital... needles... cancer...

I immediately picked up the phone, called my in-laws.
I know they have dealt with many a nosebleed. This is normal.
They didn't answer.

I picked up the phone again, this time to call my aunt.
She answered, thank goodness.

I bawled, like a crazy woman I told her what happened, and admitted that my mind was being irrational. I knew it, but I couldn't stop this auto-generated response my body was in, a full on mama meltdown. Her nurse instinct kicked in, reminding me that he was going to be ok, and so was I. She said that nosebleeds were common this time of year and he wasn't in imminent danger. She also reminded me that a nosebleed was not cancer.

I knew that, the logical me understood I was overreacting, yet I really needed to hear those words.

I couldn't stop shaking and crying.
I sat down against the wall of the dining room, clutching the phone.

I had completely fallen apart.
I couldn't move, and was terrified the kids would see me.

I felt like the ball I had been waiting to drop, the one that would break our family again, finally did just that.

-

Later that afternoon, as I recounted the experience to one of my best friends, she gently said something I didn't expect to hear, "I love you and I'm worried about you and I think you need to talk to someone. I am concerned about PTSD."

Woah.
Is that what that was?

This fall has brought back some terrible nightmares, heartbreaking memories and heightened sense of worry. Anxiousness. Restlessness.

To be honest, I think it's because Brooklyn didn't have any MRI scans.
I know that sounds crazy.

The thing about scans is, while they totally suck and create a wave of anxiety, once you endure them and provided they come back NED, you feel a sense of relief that lasts for months.

Months.

This is the first time Brooklyn doesn't have a fall/winter scan. She has one whole year off. Where we are used hearing she has a clean bill of health every 3-6 months, this time we wait 12.

Survivorship, while a gift our family never takes for granted, certainly has the power take my breath away.

She's been complaining of knee, shoulder and shin pain, as well as back and stomach pain off and on for the last two months.

Guess what I worry about?
Relapse.

And guess what I talk myself down from wanting to do?
Call her doctors.

So PTSD, perhaps.
Or perhaps it's just survivorship, exploded.

Either way, I think it's time to get some help to work through it all.
Thanks to a dear friend, I am committed to doing just that.

this is alex. this is healing.

This was alex.
Not capital A-lex, this guy only deserved little a-lex.
This was Brooklyn's tumour, which she named in therapy over the last 18 months.

On January 19th, 2016 this image was taken by CAT scan. It took two attempts, the second time she had to be sedated to obtain this photo, as her first experience was an absolute horror show of screaming, crying and terror. It absolutely traumatized us both.

alex was about the size of an adult fist, located in her abdomen. This was the reason for her pain and fatigue. This was the guy causing her to feel rotten.

This was her childhood cancer.
This is what a 'lucky' case of neuroblastoma looks like.
She. Was. So. Lucky.

All September long, as I wake up to flashbacks of her time at the hospital, as I remember minute details of the night post-surgery when she nearly went septic, I still hear the words, 'your child has cancer'.

I am healing.
Perhaps forever I am healing.

I know we still have six months until her next MRI.
Six months more, her first year between scans.
A milestone year.

Because she is ok. Because her rate of relapse is very low.
Because she kicked alex's butt and told him never to return.

As new layers of our journey continue to unravel, I am determined to endure them with gratitude.

I will answer Ethan's concerns, 'do all middle kids get cancer?', by reminding him that he is healthy and shouldn't expect to be diagnosed just because he is now five, like she was then.

I will smile through tears when Brookie posts hospital photos on her wall, as she is finding some comfort in, or perhaps acknowledgement of her journey by viewing herself as a child who used to have cancer.

I will hold my husband tightly when we both cry, worried about relapse or remembering what complete despair we felt then and how desperately we want to forget it ever happened.

We are still healing.
But I am grateful for every. single. day.

Perhaps this is the beauty of trauma. It brings forth a light, a positive vision of life which leaves trauma warriors determined to see even the worst days as brilliant, gifted and full of beauty. There is no other way.

#ccam #gogold #childhoodcancer #cancersurvivor

Reflecting on Childhood Cancer Awareness Month #ccam

 

Today is September 10th.

Go to www.boxrun.org to make a donation

 

It's a special day because across the world a local childhood cancer ambassador, Mike Strange, is running with Brookie in mind.

 

Today is an otherwise normal average day.

 

School.

Work.

Dance class.

Maybe even a Blue Jays game on TV.

 

Our life is so normal.

So average.

I've never been so grateful.

 

Childhood Cancer Awareness Month is very difficult and triggering for my husband and I. It's immensely painful to hear stories about other children who are no longer here on this earth. The truth is, it hurts our hearts, it cuts us to the core.

 

We see our own family in theirs.

Our own daughter in their child.

We know it could have been us.

It's impossible to know why our child survived.

It's nauseating to consider her relapsing.

 

People often say, childhood cancer is their worst nightmare and they couldn't imagine their child becoming sick.

 

Well guess what?

It's even more horrendous than you can imagine. Right now, at this very moment there are children so very sick they cannot eat or play, laugh or go to school. We have seen more families suffer, more adults and children endure anxiety, depression, divorce and PTSD than anyone would like to admit.

 

You know what else?

We've also seen the best in people. We've seen unwavering love, unrepayable kindness, gestures of faith and deep heartfelt support by people like Mike, along with countless others.

 

It's really incredible to consider how something so awful can bring out such authentic goodness in people. Stop for a moment and reflect on the fact.

__

 

I've learned not to question life or God, as the cyclical nature of those questions leads only to suffering. I've learned to simply accept, then appreciate life.

 

The insanity of busy, because that means my kids are healthy and following their dreams.

 

The late nights when I can't fall asleep, because I am home in my bed and not cramped in a hospital room chair.

 

The burgeoning grocery bills, because my children are eating nutritious food and not ordering off the cafeteria menu.

 

The many (many) overwhelming days where nothing feels right, because I now know what it truly feels like for everything to be terribly, terribly wrong.

 

So to Mike Strange, and all childhood cancer ambassadors working hard this month to raise awareness and funds for our kids, thank you. Together we will continue to walk tall, support the families in crisis, care for our beautiful warriors and honour every single child who looks down from the highest heaven.

 

Xo

 

#CCAM #childhoodcancer #warriorprincess #morethan4 #gogold