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
 

Perspective

We've been home for 48 hours now.
Not quite back to 'normal', but definitely the closest we've been in five weeks.

Five weeks.
January 18th to February 18th.

That astonishes me.
Five weeks felt like five months.

Every single day the first thing I thought about was cancer when I woke.
Cancer when I closed my eyes at bedtime.

Dreams unlike any I'd ever experienced before now, dreams I pray I never experience again.

When my friends and family posted photos on social media of their fun events and happenings, I wanted to scream, "My daughter has cancer! How can you be so inconsiderate!"

When I checked out at the grocery store and the cashier asked me how I was, I wanted to spill my sadness all over the register, talk about my daughter's pending cancer tests and treatment.

Every moment, of every day.
My daughter has cancer.
It was written in my mind, on my heart and sat on my lips.

I knew I was struggling.
I knew no one else did anything wrong or spiteful or malicious.

But my heart was hurting so badly that everything I saw, read or experienced just hurt me more.
Bruised deeper.
I couldn't control my feelings, they raged beyond my heart.

Yet, I made it.
My boys made it.
Brooklyn my Warrior Princess made it.

And in the darkest moments, I gained perspective.

When my anger boiled over Brooklyn's incision infection, the  night nurse told me a story about a family admitted for nearly three months due to raging infection in their newborn.
Perspective.

When I wanted to scream on day seven, that we were still admitted, Brooklyn's surgeon shared that she had been walking the wards trying to find a room for a little wee boy who's surgery was about to be cancelled for the second time due to lack of beds.
Perspective.

When, on day ten, Jay and I sat in the play room watching Brooklyn.
When I wanted to get into the ring with all of the negative thoughts still lingering in my brain.
When I wanted to lose it on the doctors for suggesting we 'wait and see' one more day.
When I could feel the literal boiling of my blood.

A husband and wife team carried their daughter into the playroom.
Sick from treatment, without any hair, feeding tube in her little nose.
She could do nothing but sit.
Stare.

Opposite my daughter, moving about in the little play kitchen, attempting to bend over and find new plastic food to feed her baby doll.
So much perspective.

Now, we are home.

My body is no longer running on adrenaline.
It is intensely achy, throbbing at times and struggling to stay awake.
My brain is foggy.
My legs are weak.
My eyes hurt.

I quit my teaching term.
I pulled our wee man from day care.

Life, as I know it, is only a fraction of 'normal'.

But I managed. I breathed through it. My body held my spirit together.

For the first time in years, I am proud of my body.
My physical self carried my spiritual self in a way I didn't realize was possible.

Perspective.

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