National Cancer Survivors Day

 

Today she climbed wooden obstacles. Tackled hay stacks. Crawled in the dirt.

Today she proved why neuroblastoma couldn't win.

Today, Brooklyn demonstrated why she is a child cancer survivor.

Today she is my hero.

 

#TeamBrookie #WarriorPrincess

This morning was a tough one

Brooklyn and I went up to Mac for her three month check up, sprinkle donut in hand, singing loudly to the 90s mix on the radio.

 

We arrived on time, and B was happy to be there.

She ran to the far right desk in the entrance of the 3F clinic, proud to know her way around.

She grabbed her paperwork, and in we went.

 

The 3F clinic was quiet. We may have been the first family to arrive.

She was happy to play toys and wait for the doctor until we found out she required a finger poke, as oncology teams call it, down in the lab.

We hadn't been there before.

A finger poke was new.

She was used to IV lines and major blood draws.

Because of this, she immediately shut down the moment I told her we needed to take a walk.

 

The child life specialist and I bribed her with ipad time and treasure chest rewards.

She was leery, but she went.

 

Upon entering the lab, her switch flipped.

 

Happy, agreeable Brooklyn was gone.

Angry, anxious Brooklyn had taken over.

 

The nurse, child life and I couldn't convince B to walk into the finger poke room.

She literally dug in her heels, crossed her arms over her chest and started shouting NO WAY.

 

My heart sank.

My body started to shake.

Tears formed in my eyes.

 

A beautiful, teenaged cancer kicker (who was waiting for her own finger poke) noticed.

With her thin frame, cute hat and positive smile, she came over to Brooklyn.

 

She was in for her second finger poke of the week, she said.

Do you want to come and see how we do it, she said.

It's really ok, she said.

You even get to pick the bandaid, she said.

 

Brooklyn's shoulders dropped a little.

Leery once again, she held my arm tightly and entered the finger poke room.

 

This gorgeous cancer kicker, with her wide smile, talked Brooklyn through the process. Why they warm her finger, how quick the poke was, how she looks for a cool bandaid while the nurse works in order to stay distracted.

 

B watched.

B listened.

 

In the end, it didn't matter. Brooklyn has post-traumatic stress associated with needles and her fight or flight instinct did kick in. She completely lost herself, kicking and screaming and hitting and crying so hard she was sweating.

 

It was overwhelmingly sad.
My heart broke into a million more pieces.

Cancer fucking sucks.

 

But, this girl, this teenager who's fighting cancer the way a boxer would his opponent, she reminded me of something.

 

Even when our bodies feel weak.

Even when our spirit is on empty.

Even when every single OUNCE of our mind tells us life isn't fair.

 

We have to fight back.

We have to stay focused.

We have to lead with love.

 

This girl, she led with instant and genuine love for my Warrior Princess, and for that I am so grateful.

 

This morning was a tough one.

I will take some time to cry.

Grieve.

Hurt.

 

And then I will pick myself back up and love, the way this beautiful girl demonstrated today.

I hope you'll do the same <3

 

#TeamBrookie #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