Stanley Park, Melanie and Paul

Frankie and Nick with a Beluga Whale in Stanley Park

Frankie and Nick with a Beluga Whale in Stanley Park

“38.9 degrees” She says after taking the thermometer from his mouth.

Nick’s brown eyes are luminous and wet, like the reflection of a full moon on silver water. We are back on 3B the oncology ward, and there is a roaring streptococcus infection in his CVC (central venous catheter). When his fever started on Monday at 11PM we were kicked off the new big ward with the coat hooks. As I was packing our room I jokingly said I would rather stay.

“Our staff are not trained to deal with very sick cancer patients.” Then we better get outa here.

Last weekend while Frankie and his Dad were here our niece Sherri, her hubby Mark and their son Curtis invited our boys to feed a Beluga whale at the aquarium. Mark’s brother works at Vancouver’s Stanley Park Aquarium and we got a back stage pass.

Nicholas sat down a lot. His face was either screwed up in a grimace, or with an expression of one who had a world of weight on his shoulders. It breaks me to see a kid the age of eleven with that on his face. Outside of the hospital his sickness is massively obvious. I’m freaking out because he is more ill than I know. And I wonder at the fear I believe he hides.

When Nick moved schools he made a friend who is a girl.

“So, she’s your girlfriend.” I said.

“Mommm, she’s NOT my girlfriend!” I guess eleven is too young to call her that.

Melanie has phoned Nick at the Ronald McDonald House and the hospital. Her parents, who met Nicholas when he was at school, but I’ve just met now, drove their daughter to Vancouver to visit Nicholas.

Her mother tells me, “Melanie was devastated when she found out he had cancer. She prays for Nicholas every night before bed.”

I left the room to Nick and his little blonde friend with the big blue eyes. She was busy unwrapping and setting on his over- the- bed table little figures she had molded out of colored wax.

“F-ankie!” Paul pronounces it the same way Nick did when he started to talk. Three year old Paul does the Chemo Lurch down the hallway toward my fourteen year old son. In the way of children receiving chemotherapy, especially really young ones, Paul walks awkwardly. Instead of moving his arms for balance as he runs, he holds his arms out in front, like Frankenstein. And he puts so much effort into getting around, yet he moves in slow motion. My tall boy lets Paul slam into his leg. He reaches down and touches the little boy’s smooth head. “Hi Paul.”

Paul has wrapped his arms around Frankie’s leg. His mother Pam grins. “You’re such a great guy F-ankie.” Frankie blushes. We parents find tender amusement in watching our kids interact at the House. Frankie is a gentle soul – I wish this heartache wasn’t happening to him, too.

Wednesday April 28, 1999

Nicholas and Frankie

Nicholas and Frankie

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No Troubles When Riding A Horse

 

Step upon my troubles

Lean On Me

April 18

Stepping into the hallway at the House I had to chuckle at the tumbling pile of shoes outside the door of Charlotte M’s room as the whole family of four children and husband are now visiting. Little Nicky M is still gravely ill.

Later, in Nick’s hospital room I gave up trying to keep my eyes open and napped on my cot next to his bed. My cousin Charlotte and her hubby Gerry brought their liveliness in the afternoon. Nick’s giggles lifted the fog in my head. In the evening while the video “Mighty Joe Young” played, a flickering blue and white light on Nick’s face, I thought about the other Moms from 3B, the oncology ward.

Shelley, she smiles so easily. A youthful mother with her arms full of baby Aidan – you could never mistake he is a boy. Just months old, he lost part of his liver to a tumor. Like bookends, I always find her near Leanne. She is less inclined to smile but that might be because of her daughter. Angela is in the awkward teenage phase and should be thinking about lip gloss and boys, not myeloid leukemia (AML) and hair loss.

Shelley and Leanne have been cast into this frightening world of childhood cancer without a husband, no partner to lean on when feet become like lead. Heather has a husband that looks like “Fabio.” In the hallway he appeared one day, our eyes following him as he strode past, the hair falling halfway down his back.

Heather, tall with curves and blonde hair to rival his tells me, “When he’s in a good place, it’s great.” One parent sits on each side of six year old Melissa’s bed.

“He’s trying to stay clean, but then he disappears for days and I can’t count on him to be here.”

In three months I’ve met the little girl’s dad once. Melissa keeps the covers pulled past her nose, just her blue eyes and smooth head visible on the pillow. This is a relapse of Wilmes Tumor, a kidney already taken and a vicious chemo protocol in hope to stop an aggressive cancer.

“When is your husband coming back?” Leanne and Shelley ask me. We stand in the hallway outside the doors of our children’s hospital rooms. It’s like a gathering of neighbors in an apartment block, except the nurses walk past with squeaking shoes, and instead of cooking, the odors are of medicine and sickness.

“Soon.” I know how lucky I am to have FH’s support with the dial of a phone.

April 23, 1999

I’m wearing my “Mounties Marathon for Nick” T shirt as I stand at the six burner gas stove with a sizzling chunk of “Chicken Fried Steak”, Carol F’s recipe (she’s looking after our little dog Miss Daisy), hanging from a fork over a cast iron frying pan. In front of Rob M I place a plate of green beans, creamy mashed potatoes and a piece of steak in rich gravy. This is a covert operation because his wife Elaine has him on a closely watched “balanced diet.” As I cooked, Rob hovered exclaiming how “wonderful that smells,” so FH, Frankie and I invited him to our table.

Rob and Elaine’s son Isaac is receiving treatment at Children’s. It wasn’t a wonder when Rob began to lose weight as Isaac is having a tough go of it. Unlike me, some people don’t eat as much when they worry.

Elaine sent Rob to see a doc. “He was falling asleep any time he sat down.” Then the unbelievable news: “Rob’s got cancer too.”

“Go slow with that Rob,” instructs FH. While Isaac gets chemo at Children’s Rob receives his treatment at the British Columbia Cancer Agency. The outline of each bone is visible in Rob’s hand as it goes from plate to mouth. His stomach may revolt at the unfamiliar contents.

FH has left to spend the night with Nick at the hospital and Frankie is downstairs playing video games. Jennifer and her daughter Kimberley load one of the two dishwashers.  From Prince George, Jennifer has a son and a husband who looks worried sick when he visits.

To cover their bald heads Kimberley wears a funky felt hat and Jennifer a brightly colored scarf. Kimberley is receiving treatment for leukemia and Jennifer has had a double mastectomy. We have two same family/same time diagnosis in the Ronald McDonald House. What are the freakin’ odds of that?

Jennifer squeals as Kimberley, almost as tall as her mother, flicks soapy dishwater at her.

“How do you support your child through chemo while you also receive treatment?” Jennifer and I are alone in the kitchen.

Running a finger under the scarf along her neck Jennifer answers me, “You just do it. And you count on your family and friends to help. We can’t do it alone. Besides, what is the choice? Give up? My kid won’t give up, so I sure as hell can’t.”

The House That Love Built

The House That Love Built

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A Good Lad in Queen Elizabeth Park

It’s a drill we know – warm skin and pink cheeks equal new antibiotics that hang from the IV pole. The pump whirrs behind me as I stand at the window. We’ve been moved to Ward F – the Hilton. The view from Nicholas’ bed is of the tops of trees among the stately houses in this area, and mountains in the distance on a clear day.

There are coat hooks! I’m really excited about being able to hang Nick’s housecoat and sweater and having somewhere to put my belongings.

Each day this past week Bridie, Nick’s teacher, appeared in his doorway and she wouldn’t take “No” for an answer. “C’mon love. You don’t want to repeat grade six.” While she settles his work book on the table that fits over his bed I gather my own notes. I use this time in the school room to write my letters on a computer so I can print them. Propped up in bed, a little prince among pillows, Nicholas has his head over a book, pencil in hand and Bridie with her slight English accent tells him, “There’s a good lad.””

I yawn. At 5am I was at the bus depot in the Ronald McDonald House van with the Canucks shark emblem to pick up my friend Heather W. She arrived with a suitcase full, as much as she could carry, of gifts from home. Gail and Brian R were here for a quick visit earlier in the week, and they brought boxes. Two of my co-workers, Mel and Jay and their wives Gwen and Alice, have also visited. Packages arrive for Nicholas almost daily. We are told of the fund raisers and kids selling cookies and juice from the road side.

And all the prayers… prayers for Nick to heal. I sure hope God is listening.

Saturday April 17

Heather and I, with beautiful sunshine warming our backs, push Nick in a wheel chair up the long hill to Queen Elizabeth Park. We watch an artist sketch a woman’s portrait. There was a time when this quiet activity wouldn’t have kept Nick’s attention for more than a minute, but today he watches the artist attempt to capture the lovely tilt to the mouth of his subject.

Mother Nature herself paints this day with the tender colors of spring, and she swirls a breeze that smells of the snow caps on the mountain peaks and the yellow sun. There is a bright liveliness in the people who pass by us, their vitality a stark contrast with my son’s sickly white pallor and the slouch of his back in an old wheel chair too large for his wasting body.

My cold heart warms to see him lift his chin to the sky, and the sun kiss his face.

Heather and a Good Lad at Queen Elizabeth Park

Heather and a Good Lad at Queen Elizabeth Park

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Mounties Marathon for Nick

Nick shuffles off the elevator into the lobby of BCCH (BC Children’s Hospital). A nurse from the ward bumps his heavy IV pole with the multiple pumps over the crack between elevator and floor.Mounties Marathon for Nick

Over the busy din in the high ceilinged room applause ripples from the group of RCMP members dressed in shorts and matching T shirts. Flash bulbs pop making Nick squint, as he stands awkwardly, embarrassed by the attention. People, their curiosity piqued by the assembly stop to look and BCTV with a massive camera film his suddenly shy smile.

A tired but elated group of Castlegar RCMP arrived this afternoon and a few days earlier than planned. The crew of ten RCMP and auxiliary members took turns running 624 km from Castlegar to Vancouver, over mountain passes, through 3 nights and 3 1/2 days – a solid 84 hours of steady moving.

Motor Home with Banner

Motor Home with Banner

They rested in shifts inside a trailing motor home donated by a Castlegar business. On the back of it hangs a hand drawn banner of a blue sky, a bright yellow sun nestled behind purple mountains and green trees in the forefront surrounding a blue lake. At the bottom of the picture is an outline of the province of BC. Above the drawing in huge letters is “Mounties Marathon for Nick.” The same image is on the T-shirts the police are wearing. The drawing was one picked from many submitted by school kids from our area.

One man steps forward with an offered hand and Nick extends his. The group drifts around my family, we shake hands and accept hugs, everyone wipes at wet eyes.

“Nicholas, on behalf of all of your friends, old and new we want you to know how proud we are of you.” He is given a get well card almost as tall as he is, signed by the dozens of people who gave so much effort to make this monumental event happen.

Nicholas’ smile widens when he is presented with a beautiful plaque with the RCMP emblem as a commemorative to Nicholas and “Mounties Marathon For Nick.”Mounties Marathon for Nick

FH is taken aside by a friend of ours who is an auxiliary member. “I’m shocked. No one was prepared for how sick he looks.”

Nicholas and I are watching TV in his hospital room. FH and Frankie have gone out to have supper with the group from Castlegar tonight. This morning the media picked up on “Mounties Marathon For Nick.”

We watch the coverage on the news as the RCMP is filmed running beside the Trans-Canada Highway through the Fraser Valley. Goose bumps cover my arms. I can’t believe the wonderful things people are doing to help us. I’m so homesick I want to cry.

Patients and their families, hospital staff and people from the Ronald McDonald House (House) have stopped by Nick’s hospital room or phoned to let him know he is a “Star.” His smile is sleepy.

April, 1999

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Things to Know About a Bereaved Person

About A Bereaved Parent or anyone who has lost someone they love.

Lonesome by TwistedPixels

Lonesome by TwistedPixels

I listen more and talk less because it takes something really significant to make me want to interrupt what you’re saying – the little stuff no longer matters.

I appreciate the daylight outside even when it’s cloudy or raining or snowing because I’m healthy enough to be outside.

“Simba” the courageous cub in the Lion King movie reminds me of my son.

I’m better with my own company for extended periods of time because I no longer fear being alone.

Holidays and Sundays make me sad.

I know the difference between an acquaintance and a friend.

I don’t have much patience for whiners.

A ringing phone at night stops my heart from beating.

For the newly bereaved – I’m bereaved. Not sick, and not contagious so please come by and visit me.

God is listening. His plan isn’t mine, but I feel that He does exist; He has to, or how do I continue without believing I will see my child again?

I care more about those I care about because I know that nothing stays the same.

Toy Story makes me cry.

Dreamy Path by TwistedPixels

Dreamy Path by TwistedPixels

I think about when my son got to Heaven and met my Mom and Dad.

When you mention my child’s name I’ll be grateful you were thinking about him.

When I travel I take my time, stop and marvel at the sights because I see a fragile world that changes in an instant.

I’m again grieving the death of my parents, or my friend, or relative who died years ago because this loss dredged up the old.

I won’t let much time go by without phoning you to say hello.

The tragedy of a complete stranger touches me.

I see a bird, or a rainbow, or the sun set and I think about angels.

Call me if you’re going to be late or I’ll worry.

When I say “I’ll pray for you,” I really will.

I love to sit on a park bench and watch children play, or teenagers tease one another, or a couple hold hands, so much that I have to be careful people don’t think I’m weird.

I stop myself when I begin to whine about something trivial because I remember when he was hurting and frightened, yet he asked me if I was OK.

Nicholas 1999

Brave Nicholas 1999

Photographs by http://twistedpixels.ca/index.html

Lucky Nicholas and Frankie Goes Fishing

April 1999

Nicholas left his Easter Bunny with a small nibble out of one ear. I ate the remains and then didn’t like myself for the rest of the day. We’ve had a day pass to the House. My boys always had a bath before bed, every night, and Nick hasn’t been immersed in water in a long while.

“Mommmm, I don’t want to, I’m tired. I just want to sit.” The dark circles under his eyes and his ‘I can’t believe you’re making me do this’ expression has me rethinking the idea until I brush my lips across the fuzz on his head and my nose wrinkles at the odor. “Nick, you smell nasty. It will be a quick swish in the suds and then you’re done. Besides, you’ll feel better.”

He rolls his eyes but lets me help him into the steaming tub of bubbles. “Ewww, it’s warm, Mom.”

I turn on the cold water tap and let a thin stream fall from the faucet. Careful not to get the dressing of his central line wet I run a wash cloth over his frail body. Bones poke out at angles and new scars in various stages of healing mar his skin. My eyes begin to tear.

“I don’t feel so good.” He mutters.

“OK. I’m done. Let’s get you out.” He struggles to his feet and leans heavily on me. The water seems to have washed away the little strength he had.

“Mom!” Wrapped in a towel he begins to crumple to the floor. On my knees with my arms around him I ease him down and now he sits with his legs crossed. His face is the color of a snow bank, his eye lashes are a dark fan across his cheek, when he lifts his eyes to mine he’s smiling.

“I think I fainted. Did I faint? What do you think? There was a noise in my ears and then I was looking down a tunnel and you sounded far away.” He’s impressed.

“Nick! You scared the crap out of me!” The familiar buzz is in my ears and I’m kicking myself for the temperature of the bath water.

Frankie and his Dad have been home for two weeks. On the phone Nicholas tells his near-faint-in-the-bathtub story and then hoots when his brother says they went fishing and he caught a Dolly Varden. “Awwww, I wish I’d been there!” We find out ‘Miss Daisy’ (our little dog who resembles a large grey rat) is staying with Dennis and Carol F. and has been to the vet for stitches and a drainage tube in her right hip for some mishap she’s had.

Members from the Royal Canadian Mounted Police detachment are running the 624 kilometers from Castlegar to Vancouver to raise funds for our family. They set out early on the morning of the 2nd and taking turns at running have crossed over the first two mountain passes of Nancy Greene and Blueberry Paulson. Trailing behind the runners is an RV with a huge banner hanging from the back of it – “Mounties Marathon For Nick.”

“What’s that Dad?” He sits on a chair by one of the phones in the hall at the House. Nick listens for another minute then says “I love you too,” and hangs up.

“Dad said all these people want to help us because I’m a cool guy and they’re our friends.” For a minute he is thoughtful. Then a huge smile begins to grow, his thin cheeks rounding into little pale balls. “I guess I’m pretty lucky, eh?”

Frankie's beautiful fish

Frankie’s Beautiful Fish

For the Love of a Cat

Nicholas has been moved back onto the oncology (cancer) unit 3B of BC Children’s Hospital. He’s been an inpatient more than an outpatient since our arrival January 26. I’m not sure why he is moved around the hospital, but when he ends up back here it seems he is the most sick.

Daily blood work follows a sharp incline in “creatinine” which shows his kidneys are struggling with the tsunami of dead and dying cells from the last round of chemo. This high volume in his blood stream has pushed his blood pressure through the roof, but I’m looking at one of five units of platelets running through his IV line. To get rid of the excess fluid they force open the pipe lines with a “water pill” – proper term is “diuretic” – “Mom, I have to pee AGAIN!” The diuretic is potassium friendly yet the potassium is flying out with the urine making levels “dangerously” low. He needs to eat crushed potassium pills with Jell-O but there is this ongoing problem with the fierce expulsion of any food that passes his lips.

The “chemo lurch” has been joined by the “chemo slide.” The infusion of noxious chemicals has ended, but as they cycle through his body and permeate his cells, the destruction is just beginning. This is what the doctor meant when he said to Nick, “You’re going to get a lot sicker before you get better.”

I have a new medical term in my growing vocabulary. “Nutripenia” means there is a decreased amount of good cells to fight infection. I love what chemotherapy is doing to Nick’s leukemia and hate what it is doing to Nicholas.

“Mom, can Richard come for a visit?” Nick sits up in bed, his eyes are bright.

“Awww Nick, Richard is a cat and I don’t think that he would be allowed in the hospital”

My son chews on this for a minute. “But, he’s a clean cat. He washes himself every day.” I want this sick kid to have anything he wants, he sees it in my face, so he quickly adds, “Well, then can we sneak him in?”

God, please bless the furry little creature that brings such a huge smile to my child’s face.

“What would Richard think of all this? Maybe he would be scared and run away down the hall.” Hopefully Nick will think it through.

“I could keep him in my bed under the covers. Nobody would know he was here.”

“Hmmm, Richard under the covers.” I’m going to dream along with him. “Yeah, he does love to cuddle.”

“He sure does.” Nicholas lies down again, a little less happy, kind of sad now. “I really miss him Mom.”

“Can you see the face of whoever pulled back the covers of your bed and saw Richard in there?” C’mon Nick, imagine your happiness!

He laughs. “Oh wow! That would be so funny!”

Sunday April 4/1999

Nick & Richard the cat

Morgan

Rain streams down the windows, but the kitchen of the Ronald McDonald House is warm. Its evening and the children who are out of the hospital on a pass are upstairs sleeping. I’m sitting at one of the pine tables with a few of the other parents, sipping a cup of tea. We are quiet with our thoughts. This morning at the hospital, while I sat with Nick in his room, I heard that a baby was rushed off the ward to ICU. I’ve just learned that little Morgan died today. She was the only child of a very young couple. A few weeks ago I spoke with her mother, a pretty girl with long dark hair. She told me her daughter was struggling.

Steps cause us to look up. Morgan’s mother and father shuffle in, looking dazed and pale. They fall into pulled out chairs at a table just inside the room, and sit there, not saying anything. I hear the refrigerators humming, the air moving through the vents, my own breathing. Both of my hands are wrapped around my now empty cup, my eyes cast downward – I don’t know what to do. A few glance at the couple but no one speaks or moves.

I’m amazed this young man and woman are here, not hiding upstairs in their room. There is courage in being in this room. All of us are almost strangers, thrown together, our sick kids a bond we share. Where is my courage? I get up, my mouth is dry as I walk over to Morgan’s mom and dad. I’ve never seen agony as in her eyes looking up at me. His mouth is a thin line, lips pressed tightly together, as if holding back his insides. I sit down, reach out and put my hand over her balled fist on the table. “I’m so very, very sorry.” Fat tears fall from her squeezed lids.

Behind me a chair scrapes the floor, and another, footsteps approach and soon everyone is gathered around Morgan’s family. The words begin to come. She talks. He talks. Haltingly they tell the story of their little girl’s last day of life on this earth. A box of tissue is passed around.

I lie in my cold bed trying to comprehend that children, mere babies die. If I were a house my foundation is cracked, the whole structure shifting, unstable and questionable. I raise my arm, fingers reaching for the ceiling, and ask, “Why?”

In the morning Morgan’s mother and father pack up and leave Vancouver without their baby. I’m thinking about the two of them as a couple with this terrible grief, losing the most precious thing in their union beside their love. Will their love be strong enough to carry them through? I hope so. FH (my husband) and I struggle. Always have – even when we had two healthy children.

Baby's Hand

Remembering Nicholas and My Facebook Family

Norm's Spider web

A photo by Norm W

Facebook has done something wonderful for me.

Our relationships are a bit like the gossamer threads of a spider web. That’s me in the middle, where the threads lead to and are most abundant. The people who have touched my life somewhere along the corridors of time, either directly through me or someone I know, are the multitude of filaments that fan out around me.

Facebook lets us touch a person we don’t live near, who came into our life for a reason, or a season, and now we move in different circles, out in the periphery. But there is a connection. In my world, yesterday’s special anniversary was the conduit for an explosion of cyber space hugs, smiles, tears, and remembering.

On the anniversary of my son’s death, thirteen years ago, I posted a picture of Nicholas. Through my post, memories of Nicholas, and the way he made people feel, stirred inside the hearts of the people in my Facebook family. A bright river of meaningful words flowed: memories of silly him that make me laugh; poetic and spiritual prose that make me cry, and from those new to my life, who never met my son, a soft, comforting touch.

Email, or messenger, or texting would never have been able to bring so many people together. Following are just a few messages.

~ I miss him too. I remember the first time I met him. And my mom asked him what his name was and Nick said my name is Gloria. I will always remember my little buddy.

~The good thing is…the end of the story HERE… is NOT the end of the story!!!! Much more beauty, joy and love than we can ever begin to imagine…is waiting… just in the “next room”.

~ Miss you so much Nicky

~ “Come on baby with me were gonna fly away from here. Out of this curtained room, and this hospital grey will just disappear. You were my best 12 years”
Don’t cry because it’s over, smile because it happened!
Nick, I never got the chance to know you, but you sound pretty awesome! Until we meet- may your rest be peaceful!

~ Your young man taught me one of my greatest life lessons the day he left Calgary (Alberta Children’s Hospital) for home….with a big smile on his face he said don’t cry I am ok! (I remember) Our two boys, Thomas and Nicholas saying goodbye to each other. (Nicholas passed away a few weeks later, and Thomas six months after).

~ His angel wings are the flutters you feel in your heart every time you think of him.

~ I wrote this the weekend after Nick passed. (January 2000 (“K” was 14 years old)).
I can’t believe that you are gone
Sometimes I even forget
You were always the one cracking jokes
Making people laugh
It’s such a mystery
How the people who least deserve it
Are taken from us
But as time slowly passes
As much as I am sad
I will be at peace
Knowing that you are now in a place
Where you feel no pain
Even though I can’t see you
I know that you are there
And every time I hear the sound of laughter
Or see a person smile
I will think of you
And the joy you brought to so many people
You will always have a place in my heart
And you will never be forgotten ♥

I think the really awesome thing is that in an effort to comfort me, Nicholas’ mother, in the sharing of hearts, the words posted on my Facebook page were a respite to everyone who visited.

Thank you

Nick and his sled

Remembering Nicholas, with his GT snow racer on a moon lit night

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