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

Official Update - February 5th, 2016

I posted this update to my personal Facebook page on Friday. For anyone who missed it, here are the results of our meeting with the oncology team at McMaster Children's Hospital.

 

I'm going to refrain from talking about our emotions tonight, and just share the facts for now. If any of this sounds too technical, read on via the link below.

 

Brooklyn has a tumour in her abdomen, which lands on the spectrum of something called a neuroblastoma, or childhood cancer. The amount of malignancy in the tumour is still open to interpretation. Here's what we know:

 

1. Her blood work, bone marrow, ECHO and bone scans all came back clear of cancerous cells. This means... if this is cancer, it has not spread beyond the tumour.

 

2. There are contradicting results of two other tests. Her tumour biopsy showed that the tumour is benign, which is good, however her MIBG scan showed a lit area of what they believe are neuroblastoma cells, inside the tumour. This leads the oncology team to believe that the tumour may be a mix of benign and malignant cells.

Brooklyn will undergo a 3-4 hour surgery on Tuesday morning to remove the tumour. If her surgeon can remove the entire mass, then regardless of the pathology of the tumour, she should not require additional treatment. If the surgeon cannot remove the entire mass, then the pathology will be crucial in determining if Brooklyn requires further treatment, most likely chemotherapy.

If you could, please focus your prayers on asking for divine support for Brooklyn's surgeon, Dr. Flageole. That she execute a safe, effective and full removal of this tumour. That her team support her efforts, minimize complications and that, when the moment finally comes that she speaks to us post-op, that her smile is wide and bright with the news that she removed the entire tumour <3

If you'd like to read more about Brooklyn's situation, check out this link (provided to us by the McM team): http://curesearch.org/About-Neuroblastoma

‪#‎TeamBrookie‬ ‪#‎WarriorPrincess‬

The lump, tests, angels and God: talking to our little ones

A great many of our friends and family have expressed worry over what to say to their little ones, as well as to Brooklyn and her siblings. I thought I would share what we've said to date, in case it helps anyone:

Brooklyn has a lump in her belly. The lump shouldn't be there, and even though we cannot see it, it is inside of her. The doctors are doing lots of tests and taking lots of pictures to try and figure out what kind of lump it is - the name of it - so that they can come up with a plan to remove it.

It may involve more medicine, it may involve more surgery, or a combination of those things. We don't know yet. We may even have to sleep at the hospital for awhile, as we did last week.

It's ok to be scared. It's ok to be angry. It's ok to want to scream and yell and cry and be quiet and not talk at all. All of those feeling are ok, but we've told all three of the kids they are absolutely NOT alone, that we all feel the same way and are all looking forward to Brookie being well again.

On Thursday, Nolan asked us how it got there.

Good question.
That one caught Jay and I both off guard, and so we answered like this:

Inside of our body, there are cells. Sometimes those cells can become confused and grow into things they are not supposed to grow into. Brooklyn's lump is a group of cells that grew in her belly, but they should not be there. We need to remove the lump in order to make Brooklyn better.

It's not Brooklyn's fault, or anyone's fault, that these cells grew in her belly. All we can do now is wait for the doctors to come up with a plan to make her all better.

As you can see, we haven't mentioned the big 'C' word yet, partially because it is not an official diagnosis, and partially because hypothetical statements will only cause anxiety and worry in our kids. We know this all too well, we've been living with it for two weeks now.

We will wait until all the facts are known before telling them any more.

A few well-meaning people have recently said to Brooklyn, "We are happy that you are all better." This is an incorrect statement, and we politely ask that you refrain from saying this to her.

She is taking a break from the hospital for a few days, until the doctors come up with a plan to help her. She is resting, healing and playing with her friends at school because those things feel good and are good for her to do. It is safe for her to play, and we are happy to see her go to school.

Finally, I've talked to her a lot about God and angels:

Angels can help you, when you are feeling sad or lonely or worried. Its important to ask your angels to help you. You can talk quietly to yourself, write them a letter or just say the words in your head. Mommy has been calling on all our family angels to surround us with love, white light and protection as we live each day.

God is also watching over you. We don't know why you have to go through this, but we know that God has made you a strong and beautiful girl capable of getting through whatever we have to do in order to be well again. We trust in God, even though this is the hardest thing we've ever had to do.

I hope this helps a few of you. Please encourage your kids to play with Brooklyn, love her up and tell her how much they missed seeing her. She's a beautiful five year old whose soul is fueled by spending time with her friends and family.

#TeamBrookie #WarriorPrincess

Coping

Brooklyn has finally completed the last of the required tests.
Her only scheduled appointment next week is a surgical follow up from her biopsy.

Now we wait.
Wait for a diagnosis. A treatment plan. A timeline.

It's the scariest feeling ever, to know something so important rides entirely on others. Highly intelligent and well trained others, but still the lack of control takes my breath away more than once a day.

I feel sad.
Empty.
Anxious.
Shaky.
Weak.
I've really pulled into myself, the way a turtle crowds it's shell during times of danger.

I worry about my boys and the trauma this has caused each of them.

E has endured nightmares. He needs to know where I am going and when I'll be back. He asks lots of questions about where his siblings are, and he was so angry last week when we made it clear he wasn't allow to hug his sister because of her boo-boos. He cried the most gigantic, most heartbreaking tears last weekend as he spontaiously told me how hard it was to go from the babysitter's house to his grandparents' house and back. His entire routine was disrupted, despite our best efforts.

N is sullen, at times unable to decipher what he's feeling. He made a feeling picture with the Child Life Specialists yesterday, of our faces before B got sick and since B has been in the hospital.

Left - before B became sick . Right - after B became sick

This image brought me to tears. He is right and its hard to know he's hurting as much as we are, despite our attempts to be as warm and normal as possible. He is a feeler, a deeply emotional child, and he knows that this is serious.

When my mind wanders, I sometimes think about the worst case scenario.
Chemo. Hair loss. Extended hospital stays.
A daughter with self esteem issues... her first set of incisions really upset her.

And then sometimes I focus on the beautiful party we will have when this is all over with.
The music. The jumpy castle. The cold drinks and big hugs.
Tears of joy.
A chance to thank everyone for their support.

The entire next week is out of our hands, all there is left to do is pray that hope becomes reality.
I find myself too tired to pray these last few days, and so I am grateful for all of your spiritual dedication to my family.
xo

#TeamBrookie #WarriorPrincess

Any other day

It began like any other day.

My focus was on getting my kids dressed, packing lunches and loading them into the van in time to make the first bell. Nolan, age 7, and Brooklyn, age 5, love to play for a few minutes with their friends before classes officially begin.

Drop off. Check.
Coffee run. Check.
Morning visit with my wee man Ethan, age 2, to our local early years centre. Check.

Around 11 o'clock that morning E and I headed home. Thursday is our special day together, one I so cherish. I put his favourite show on TV and headed upstairs to make him some eggs for lunch.

Cue the phone.
I always check my call display before answering, and when I did, my heart dropped.

It was my kids' pediatrician's office calling.

In the three seconds or so that it took to pick up the receiver, my mind raced.

B had just gone the previous day for an ultrasound on her abdomen, specifically looking at her bladder. After recurrent UTIs, random unexplained constipation and complaints of it hurting to sit on the toilet, I asked her doctor to consider more testing.

I couldn't take her to that appointment as I was just beginning to teach my first week of the winter term, thank goodness my amazing parents jumped at the chance to spend time with B. The technician had told my mother it would be about 5 business days before results would be available to our doctor.

But the pediatrician's office was on the phone now, on this very normal, average day.
Asking me to come in regarding the results of the ultrasound.
I hung up the phone and my chest hurt.

Not 15 minutes later, the office was calling again.

This time, our pediatrician was on the other end.
"I've reviewed the results and referred you up to McMaster Children's Hospital. There is a mass in her abdomen which requires further investigation. I have spoken directly to the surgeon, he is aware of your case."

That day, two weeks ago, was just like any other day.

The same arguments.
The same requests for cooperation.
The same snacks in my kids' lunch bags.

Never, in my wildest dreams, would I have guessed our very busy pediatrician would call me at home. That McMaster would call the next day and tell us to come in three days later, promptly at 9am.

To be admitted.
To begin a very, very difficult two weeks.

CT scans.
IV drips.
Blood work.
Urine samples.
Biopsies.
Hearing and eye tests.
Echos.
Bone marrow biopsy.
Bone scan.
MIBG scan.

Days so long, tears flowing uncontrollably and questions nearly impossible to answer:

"Why do they keep touching me? They make me feel worser Mom! Make it stop!"
"How many more tests mommy, I hate tests!"
"Why can't I eat, mommy? They never let me eat here!"
"Mommy I am not sick. I am fine. Take me home?"

Seeing my little angel, my precious baby girl, in pain. Suffering at the hands of the people who were put in place to help her. Feeling entirely helpless, hopeless and trembling at the thought of one more wheelchair ride, one more gurney trip around the hospital.

Watching her little eyes close, body full of drugs, knocking her into a deep sleep over and over again for the sake of something that did not exist a few weeks ago.

Trusting strangers to care for my baby as they would their own, and begging them to do everything in their power to make her well again.

...

The day began like any other day.
Two weeks ago tomorrow.
Yet the following 14 days have been the furthest from that day.

And while these have been the single most difficult two weeks of my life as a mom, wife and woman, I can see with very clear eyes how lucky we are.

Yup.

Its only taken two weeks to complete all the tests necessary for a proper diagnosis.
The hospital is only one hour from our home.
We are surrounded by family, friends and even perfect strangers who continue to fuel us with kind words, meals, gifts and hugs.

Love is plentiful.
Hope is visible.
Faith, while being tested, is a strong and capable companion.

Please pray, for Brooklyn and all children who's lives have been anything but any other day.

#TeamBrookie #WarriorPrincess