Survivorship, exploded

Over the last month our family has battled some intense germs.
Fevers, coughs, lost voices, painful body aches.
Runny noses, headaches, exhaustion.

It's been a rough go, as anyone with multiple kids know its usually makes it way around a family, one child at a time. Ironically, the germs usually give parents a break of a day or two, just long enough to think it's over before it hits the next kiddo.

But that's not the point of this story.

Two weeks ago Ethan came home from school and told me he had a little nosebleed. Just a small drip that he said didn't hurt, only needed a quick wipe and off he went. I figured it was because his nose was all dried out from the germs, no big deal.

About 10 minutes later he had massive, gushing nosebleed.

GUSHING.

He absolutely flipped his lid. He was hysterical, screaming and crying and refusing to allow me to pinch his nose to help it clot.

I could feel my heart start to race.

I got him to sit, but I screamed for Nolan's help, I needed tissues and a distraction to calm his little brother. Nolan was such a good boy, he ran around the house grabbing everything we needed, including the ipad which he promptly tuned to Ethan's favourite show, Fuller House.

My hands were shaking.

About 10 minutes later, his nose finally stopped. It was a doozy, the garbage can was a third full of red tissue and he was pale and tired. I laid him down on my side of the bed, his brother on his dad's side, and together they watched Ethan's favourite episode.

Then, I unraveled.

I couldn't breathe.
I was shaking uncontrollably.

My mind raced so fast.... cancer... death... disease... hospital... needles... cancer...

I immediately picked up the phone, called my in-laws.
I know they have dealt with many a nosebleed. This is normal.
They didn't answer.

I picked up the phone again, this time to call my aunt.
She answered, thank goodness.

I bawled, like a crazy woman I told her what happened, and admitted that my mind was being irrational. I knew it, but I couldn't stop this auto-generated response my body was in, a full on mama meltdown. Her nurse instinct kicked in, reminding me that he was going to be ok, and so was I. She said that nosebleeds were common this time of year and he wasn't in imminent danger. She also reminded me that a nosebleed was not cancer.

I knew that, the logical me understood I was overreacting, yet I really needed to hear those words.

I couldn't stop shaking and crying.
I sat down against the wall of the dining room, clutching the phone.

I had completely fallen apart.
I couldn't move, and was terrified the kids would see me.

I felt like the ball I had been waiting to drop, the one that would break our family again, finally did just that.

-

Later that afternoon, as I recounted the experience to one of my best friends, she gently said something I didn't expect to hear, "I love you and I'm worried about you and I think you need to talk to someone. I am concerned about PTSD."

Woah.
Is that what that was?

This fall has brought back some terrible nightmares, heartbreaking memories and heightened sense of worry. Anxiousness. Restlessness.

To be honest, I think it's because Brooklyn didn't have any MRI scans.
I know that sounds crazy.

The thing about scans is, while they totally suck and create a wave of anxiety, once you endure them and provided they come back NED, you feel a sense of relief that lasts for months.

Months.

This is the first time Brooklyn doesn't have a fall/winter scan. She has one whole year off. Where we are used hearing she has a clean bill of health every 3-6 months, this time we wait 12.

Survivorship, while a gift our family never takes for granted, certainly has the power take my breath away.

She's been complaining of knee, shoulder and shin pain, as well as back and stomach pain off and on for the last two months.

Guess what I worry about?
Relapse.

And guess what I talk myself down from wanting to do?
Call her doctors.

So PTSD, perhaps.
Or perhaps it's just survivorship, exploded.

Either way, I think it's time to get some help to work through it all.
Thanks to a dear friend, I am committed to doing just that.

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

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

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