Tuesday, March 22, 2016

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.


Tuesday, March 8, 2016

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



Friday, March 4, 2016

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