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

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

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

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
 

The moment the nightmare ended

Shortly before Brooklyn's surgery, the doctors gave her some medication to relax. She is so traumatized from the last month, we requested this to avoid another major OR meltdown.

She quickly relaxed, played her Shopkins game and waited for her pending surgery. Jay and I were a mess, every conversation with doctors over the last month skipping through our heads, every outcome flashing before our eyes, knowing that once again we were putting our little girl's life in the hands of others.

She couldn't form a cohesive sentence in the minutes before we moved into the OR, but let me tell you, she most certainly could once she rolled into surgery. She told every doctor off, saying they were meanies and she absolutely refused to lay down. The surgical team held her down while I rubbed her head and sang 'our song' to her, mask over her little face.

It was a moment that took my breath away.
I came out and fell apart in Jay's arms.

There was nothing left to do but wait.
And it hurt the greatest depths of my heart.

In the hours that followed, we were visited by nurses, child life specialists and other McMaster team members we met over the last few weeks. It really hit me then, that this wasn't just a terrible dream. We weren't making this a bigger deal than it was.

It also hit me that we had the entire McMaster professional team routing for us.
For her. For a positive outcome.

Our social media pages were oozing with prayer offerings, energy dedications and words of love and faith.

It was overwhelming.
I was totally numb.

And then, it happened.

Brooklyn's surgeon came out to see us.
Much earlier than anticipated, Jay and I flew out of our chairs.

She looked at us so calmly and said,
"I removed it. I was able to remove all of it. As far as I can see, 100%"

I was stunned.
I felt my knees get weak.

I told her she was incredible, to which she replied it wasn't that big of a deal. She knew the tumour was friendly and she knew she could do it.

To her, it was science.
Training. Skill.

To us, it was miraculous.
Prayers answered. A new beginning.

Our daughter, our little Warrior Princess, was going to be ok.

In the next hour, we were visited by her other surgeons, who were proud to say they also agreed that 100% of the tumour was removed. I hugged them so hard, I probably scared them.

Lastly, our oncologist popped in. Her words went like this,

"You better consider going on that vacation after all."

You can't even imagine the tears that followed.

#TeamBrookie #WarriorPrincess

_

Brooklyn is still admitted at McMaster, and she's moving through the ups and downs of post-operative recovery. While this week has been exhausting and difficult, we're confident she will make a full recovery in the weeks to come. Final pathology will be available in another ten days or so, at which time we hope to hear Brooklyn will only need to be monitored regularly and not undergo any further treatment.

Thank you for your continued prayers and love. xo

The night before

The last two days have been awful.
Every single one of us, kids and adults, feels uncomfortable, sad, worried and downright angry.

There have been yelling matches.
Hockey sticks to the forehead.
(for the record, this was Ethan to Brooklyn, we are good parents I swear)
Walls slammed with hands.

Tears.

So
Many
Tears.

And lots and lots of hugs and cuddles.

Its hard to imagine how Brooklyn is feeling, but given her two enormous angry outbursts (one at home and one today during pre-op) my guess is she's deeply disturbed and scared. She's trying so desperately to be in control of absolutely anything right now, that simple things like 'turn off the tv for dinner' have become heart-wrenching meltdowns.

My head is pounding.
My back hurts so bad I visited the chiropractor on 15 minutes notice today.
My cheeks are continuously flushed.

But now, our bags are packed.
Toys and colouring books from family and friends overflow their bag.
Scentsy buddies are filled with hugs and love at home, in mommy's absence.

New ipad apps.
Snacks, drinks and fruit.
Lots of advil.

Yaya the dolly.
Annie the angel bear.
Blankets.

Now we need your prayers.

For the surgical team charged with removing this ugly tumour.
For our warrior princess, that she digs deep inside her beautiful soul and find a way to smile.
For our boys, left behind to live out the week under the guidance of amazing family.
For Jay and I, that we find peace during the surgery, remain calm should complications occur and meet the day with radical acceptance and gratitude.

I do not anticipate posting any updates here until we are home from the hospital. We appreciate all the kind comments and love left on this blog, and promise to update you as soon as we are able.

#TeamBrookie #WarriorPrincess

Grow with us

I am still trying to come up with words, to express how I am feeling right now.

Angry.
Sad.
Broken.

A good start, yes, but the pain I feel is so much deeper than that. So much more raw. It's as if someone took my heart out of my body and still expects me to be 'myself' without it. My brain is foggy, my body aches and tears fall in streams from my face without a moment's notice.

I look at my little girl and wonder how this will change her.

Will she go into medicine someday, hoping to change the world?
Will she refuse to bare her midsection as a tween because she's ashamed of her scars?
Will she feel a strong dislike for doctors, the very people dedicated to making her well?

I look at my sons, and I can see how this has changed them.

Ethan screams when being left alone, begs for us to sleep with him, wakes 10+ times a night and says things like, "Mom be careful, Brookie is sick." Nolan is, once again, highly sensitive. He is crying more often, crawling into my lap at least once a day and looking at me with eyes that shout dissatisfaction and worry about the current state of our life.

And then I look at Jay and I.

It's awful.
We are shells.
Breathing, yes, but otherwise void of our usual zest for life.
We are pale, exhausted and hurting.
Laughter is infrequent. Silly jokes are missing.

Our love for each other remains unspoken.
We are partners in this journey.

When I am ok, he is not.
When I fall apart, he is strong.
Every ounce of our energy is being poured into our kids, leaving an empty bucket for each other. But that's ok, because we know we are in this together.

I came across a video today, and I feel like everyone needs to watch it.
It's time to stop the 'not doing' and get to doing.
Living.
Being.
Appreciating all that we have.
Losing the regrets.

The silver lining, in all of this, is becoming evident.

Hearing friends say, I've taken too much for granted.
Seeing neighbours spending quality time together as a family.
Feeling family members give so much of themselves, in the name of family.

It's incredible.

Too many of us worry incessantly about the next step in our careers at the expense of missed hockey games, first home runs and cups of coffee with dear friends. Too many of us have become overly concerned with the next big style trend, the brand of car in our driveway and the roots of our dyed hair.

But wait.
What if we looked again.

What if we let the silver lining shine a little brighter.

Notice the way a hug feels around our neck.
Take in the smell of our spouse when crawling into bed at night.
See the love our pets offer us without hesitation.

You see, as much as I cannot breathe right now, as much as my heart is broken into a million pieces, I know that there are lessons to be learned. I know that my life will be enriched by choosing mindfulness in my daily activities. In appreciating the kindness and love of others.

I want you to be part of the silver lining.
I never want you to go through this with your child.
But I want you to learn from us. 
Grow with us.
Find peace along side us.

I want to prove that all of this happened for a reason.
And I want to hear about what you've learned.

xo

#TeamBrookie #WarriorPrincess