Category Archives: Cancer

These Are the Days of our Lives: Hospital Style

I’ve been sick. A raging cold – sore throat, cough, headache, ache-y bones and general whininess. Not a big deal. Except when your baby happens to be in hospital undergoing chemotherapy.

Then it’s a huge deal.

But my body decided I needed to be sidelined. Daddy and Grandparents stepped up. I should be grateful. I am grateful. But it was also miserable not being there when she wanted Mama and I had to sing lullabies over the phone.

Last night I was finally back where I belong! Where I most, and least, want to be: in the oncology ward of children’s hospital. Just in time for another emotional roller coaster ride. Cause that’s how it goes these days.

Any illusions I had about long stretches of boredom during this experience have long since been obliterated. We have very little uninterrupted time in the day. Or the night. There are more people and procedures and poking and prodding than anyone should have to endure.

But this latest ride had an upswing. At least, as far as my daughter was concerned.

B has developed steroid-induced diabetes because of the meds she’s on. This has ushered us in to the wonderful world of glucose monitors and sub-cutaneous insulin injections, which isn’t as fun as it sounds (and it sounds horrible). After many days of screaming fits, freezing spray and restraining hugs, she decided it wasn’t that bad, and now merely complains and insists on choosing the exact spot for her needles.

Her blood sugars have been quite high. Consistently too high at night. As frustratingly unpredictable as her appetite. Revealing quickly to all involved that you can’t force my girl to do anything, least of all, eat.

While waiting for her bone marrow biopsy results they’ve put a pause on chemo, including steroids. Those results will determine the next step, so we might as well wait. Just one day, perfectly logical, why not.

Since her blood sugars have been extremely high this past weekend they’ve been treating it more proactively (read: more insulin). What they didn’t anticipate was her extremely quick recovery to normal blood sugar regulation. That, plus an even smaller appetite (without raging steroid hunger in the mix).

I stood my ground on the fast acting insulin. With her blood sugar already low and refusal to eat more than a few bites of dinner, it just didn’t make sense. I’m learning to stand behind my instincts as a mother. Even with professionals in the mix. The nurse herself seemed hesitant, so that sealed the deal. “Blame me” I told her, as she paged the endocrinologist again. “Tell them I won’t allow it.”

I should have questioned more. Or maybe it’s just one of those things. Her blood sugars have spiked overnight more than once, so a slow acting 12-hour insulin didn’t seem like a bad idea.

It was.

Thankfully they are monitoring her closely. I’m so grateful that they repeatedly stab her with needles while she sleeps – how bizarre is that sentiment? Her alarmed nurse woke her up to drink a large glass of juice and eat a snack. It took cajoling, but she is a fan of her new nurse (a man – which she finds fascinating) so she came around.

After the next poke, 15 minutes later, she was woken again with more urgency. We were relieved she was still responsive.

He came back to the room dumping handfuls of Halloween candy on her lap. I’m sure she heard the angels sing. After a week on a strict diabetic diet this midnight candy feast was like a dream come true!

She sat up in bed, cramming chocolate and gummies in her mouth as fast as she could, a huge grin on her face and a suspicious look in her eye.

Brent is now her favourite nurse. Ever.

I didn’t find this quite as fun as she did.

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So here’s us, living up to our unofficial family mission statement: Never a Dull Moment.

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A Good Cancer Day

Today is my birthday.

Today my little girl started a new chemotherapy drug.

Today we cut her hair off, because it is going to start falling out soon.

This doesn’t seem like the recipe for a good birthday. Or a good day. Or even a tolerable one. I was fully prepared to let this whole ‘celebration’ concept slide. Not really feeling it. My smiles are pasted on, replicas of the real thing; polite reflexes to communicate my real appreciation for the ridiculous amount of support pouring our way.

There’s nothing like cancer to awaken the selfless impulses. Not the saintly ones forged in empathy, discipline and hard-won maturity. The parenting ones that roar to life in fear and desperation. I barely blinked when we cancelled our Christmas trip to Disneyland, and our 20th anniversary getaway to Mexico, and postponed my writing projects and school aspirations. I happily camp on a mat on the floor beside her bed. I hardly remember to eat or wash or go to the bathroom. Life and death is in play, and the world has narrowed drastically.

But this is no short term crisis. Life doesn’t begin after cancer. Life is right now. Two long years stretch ahead of us. And they will be different, hard, with all sorts of frustrations and heartaches. But if we’re going to make it through, we’ve got to live.

Today had it’s hard parts. Kissing my son goodbye with the vague promise to see him “sometime this weekend.” Holding my daughters arms and legs down so the nurse could hook the IV up to the tubes in her chest. Catching a glimpse of her cropped hair, looking shorn and strange.

But it was still a good day. Today I took a break. I woke up in my own bed, snuggled my son, talked to my big girls, ate a casserole for breakfast (so much better than granola bars and pilfered hospital food). Today I enjoyed a visit with a friend who just happens to specialize in cool haircuts, ate ice cream for lunch and hugged my husband. Today she felt good, her counts were up, the nurse hep-locked her IV and we got to explore the far reaches of the hospital, including a huge empty stairwell. Today I howled like a dog and laughed and sang and listened to the echoes without ever checking the clock, or worrying about the next thing to do, or feeling silly for acting like a child. Today I lay beside my daughter and listened to her breathe until she fell asleep. I can’t remember when I was more acutely aware of how precious each moment we have together is.

I suspect cancer, for all the many ways I abhor and despise it, will also make life sweeter. As long as I remember to live it.

So here’s us, on the brink of death, like every other human being on the planet. We just notice it more.

 

 

 


That Terrible Twist that Changes Everything

Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.

In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe. We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified.

Was it God?

Or something less mysterious, some faceless force?

Chance?
Biology?
Cancer?

I blame Leukaemia.

Our 10-year-old daughter has it. Our tiny, charming, iron-willed sweetheart has this disgusting disease.

She wasn’t sick that day, the morning before we got the call, just infuriated as I forced another routine blood test on her. Screaming and betrayed by it, as usual. Then happy as a clam 20 minutes later, also, as usual. Everything seemed normal that day. She hadn’t been sick. We had no warning, no foreshadow, just a punch in the gut when we least expected it.

I’m writing to make some sense of all this. It’s moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but you can’t remember what. The fog. I feel like that – all the time.

They kept asking us “do you understand why you’re here?” Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this. But I need to know we’re helping her, somehow. Even by going through the right motions in the right way.

We must looked stunned and stupefied. Which, of course, we totally are. But I’m hoping it plays as competent and calm.

There are already sparks of hope in the story, hints of Providence and amazing wonderful generous people all around us, holding our world, and us, together. There will be more, I know. I’m grateful. I’m making a list.

But I don’t need to write about that, not now. Maybe not ever. There are already lofty, inspiring stories out there aplenty. After all, kids with cancer = sentimental goldmine.

Which, you know, kind of pisses me off. I’m so sick of being brave and inspiring and wise. Since I’m actually weak, scared shitless, and incredibly ordinary. In thousands of ways I cleverly conceal. Because who wants to be known as the mom who just fell all to pieces and swore in front of her kid (and in her prayers, and on her blog) and yelled at her shell shocked husband for sleeping too much and not helping out enough?

Well, not me. That’s for sure.

So I’m writing to process, to make sense in my own mind of all that is happening so quickly. And hopefully get through it with less yelling and falling apart, and more loving my family.

The best I can at least, because it is happening so fast. And I’m pretty sure when this stuff happens we’re all weak, scared, and incredibly ordinary in the face of it. That’s life.

Right now I’m hoping that they can surgically implant a tube near my daughters heart, so that we can pump powerful drugs right into her bloodstream. The sooner the better. That’s right. Two days ago we were planning for Halloween and tonight I’m praying for chemo to start ASAP. Surreal.

Feel free to follow this journey in my blog, but don’t expect the pretty version. So far this experience is raw and exhausting, yet somehow closer to the pulse of life than usual, with gusts to boring and mundane. A bizarre mix. That’s life.

Our daughter, meanwhile, is the hero of the story. As usual.

So here’s us, in the well staffed, cheerfully decorated hell that is children’s hospital.

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