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.

Circling back to help others

We are all worthy, she said.
You are very welcome to be here, she said.
You are so grounded and have it all together, she said.

It's interesting how the outside can look so different from the inside, I think to myself.

Outside, check.
Inside, not so much.

I've been very triggered lately. I am still battling bad dreams and flashbacks of Brooklyn's time in treatment. I am struggling so fiercely, I find it hard to ground myself. There have been many time outs lately for deep breathing exercises, and many many tears in the quiet moments alone.

I toss and turn at night.
I am worrying again.
I am so tired.

Yet life is still so good, and I know it.
This phase in my healing journey isn't going away, but it's not overtaking my gratitude for each day.

I just find myself stuck, or perhaps with another open wound.

I saw all Brookie went through.
I see how her journey still affects her and the boys.
Jay and I talk about the pain we still feel, in moments we didn't realize we were even feeling it.

Yet I can't release myself from this feeling of guilt.
Survivor guilt for my daughter who lives?
For the best diagnosis?
Two and a half years of NED results?
I'm not even sure.

And why?
I don't even know.

All I do know is that this guilt is still better to feel than the horror of relapse, or worse the pain of living on earth without her.

And so I circle back.
Ground in gratitude.
Feel more determined than ever to help other families on the childhood cancer journey.

_

Ontario Parents Advocating for Children with Cancer (OPACC) is currently accepting donations in support of a new mom retreat planned for next February. This weekend away will help moms de-stress, relax and rejuvenate in order to best support their child in treatment.

If you are capable of making a donation, I can promise you it will make a difference. Visit www.opacc.org/donate, select the OPACC Hamilton group parent retreat and donate whatever you can.

xo

#childhoodcancer #opacc #momretreats

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