Diagnoseversary

When I sit down to write a blog post, I often wonder how much of our lives to put out there. How much do you really want to know? What parts of my life should I share?

What may seem trivial and mundane to a reader might be a momentous occasion in our household. Do I bother to chronicle the lemonade ice cream, courtesy of President’s Choice, we tried for the first time this weekend? (It was heavenly—pink and creamy and so tart that your cheeks suck in and your eyes squint at the mere thought of swallowing it. Mmmm.)

Do I mention that the adorable baby Crocs Hubby snatched up at the Dollarama keep falling off Avie’s feet. As tiny as those shoes are, they are still too big for her!


Should I mention that we have already had a record strawberry haul, in that this week alone, Monique and the girls have picked (and then proceeded to eat!) three mixing bowls worth of berries?


Do you really want to know about Brooke’s sniffling the other night that kept both her and I awake until 1:30 a.m.—or how I’ve lost my maternity leave paperwork amidst a growing pile of bills and invoices and other things that are on ‘to be filed’ list? (Aw, man....I was supposed to look up that Service Canada access code again today. Ah, crap!)

I guess that’s what’s great about blogging. I can keep track of what’s important to me and you can choose whether or not you want to hop along for the journey.

You may have noticed that this is my 100th post. I’ve really been toying with what I should write for this post, as I thought it should be a reflection of who I am or what this blog is supposed to represent, what it has become and what it will come to be in the future—but, let’s face it, I just don’t have the introspective quality or the energy to be that philosophical. It’s a pretty shallow pool o’er here.

But, fittingly enough, today is her diagnoseversary. (I did not coin the phrase myself, I stole that word from someone on the DisBoards. I'm adding that to my personal dictionary, for sure.) A year ago today, Hubby and I were faced with our worst fear—our child was sick. She had cancer. She would need to undergo major surgery and an intense chemo treatment schedule. Her hair would fall out. She would lose weight. Turn pale. Feel tired. Catch every illness under the sun. She would have to make weekly trips to the hospital. She would need to take nasty meds that would make her puke.

I won’t lie to you. The thought of that day still makes my stomach queasy. I hope that the vividness of the day will begin to face, but I don't think I'll ever really get rid of the fear that the cancer could come back. Although each passing scan makes the next more bearable, I know I will never be able to put that notion completely out of mind.

It was a year ago, but I remember it as clearly as if it had just happened. I remember catching "My Sister's Keeper" on the movie channel a few days before, and crying uncontrollably as I watched one sister battle renal cancer and the other insisting she would give up her own kidney if her sister would just continue to fight. The tears were many more than is typical for me in watching a movie. It seemed an omen, to me. A sign I could not shake.

I remember bathing the girls with Hubby one night before the tests began and telling him "You know, this might be the last time we have healthy kids," as he poured bubbles over their heads to laughter. He told me I was being paranoid--and blamed it on that movie I'd just seen and some residual post-partum emotions.

It wasn't. It was mother's intutition. I see that now.

I knew something was wrong. That's why I called the doctors to begin with. And, I knew it was more than just a UTI. I'm glad I followed my gut and went to the ER that night rather than wait until September for an ultrasound. It didn't let me down, although it sure as hell gave me the scare of my life.

No, I won't ever be able to forget that early Wednesday morning, when I received the call. An ultrasound spot was available at noon at CHEO. Could I make it?

Well, I wasn't about to miss it.

I had just bought popsicles at Wal-Mart, when I got the phone call. We had gone out after Avie's immunizations to buy party hats for the twins' party that weekend. We were about to go home, but as the appointment was in an hour and a half, I just decided to go straight to CHEO.

I remember thinking that my popsicles would never make it in the heat and I would come back to a gooey, melted bag of groceries if I didn't act quick, so Brooke and I sat in the parking lot and devoured as many popsicles as we could. I threw the rest of the box out when we got to the hospital.

I can still smell that scent of hospital cleanser and Purell that permeates the halls of CHEO, as we entered 'the train room' (radiology) for the ultrasound test. I can still envision the discoloured Sesame Street characters peeling off the wall of the ultrasound room, the crooked bird mobile swaying lazily over Brooke on the table. I can remember thinking that I should go to the dollar store and buy some new vinyl stickers and give them to reception to brighten up this fading room.

Time seemed to stand still in that dark, quiet room. Just the sounds of jelly being squirted, quiet giggles from Brooke, noisy snoring from Avery and the clicks of the machinery as the tech twisted knobs and tapped keys. I can still see the surreal flash in Hubby's eyes as his darted over to mine and we communicated silently our daughters' slumbering bodies.

This is taking too long. What is he looking for? Something's wrong, isn't it?

I can remember swallowing hard when Jerry, the ultrasound tech turned to us and told us to go back to ER and wait for "someone to come talk to you about the results there." That didn't seem like normal procedure to us. If there hadn't been anything, it would have been a "You'll get results next week. Have a good day" instead.

I can still feel my pulse quickening as we fairly flew to ER, anxious to find out anything. I can still see the nurse at reception shake her head at me. With a newborn who had just been immunized that morning, she wouldn't let me into the ER waiting room where we might pick up an infectious disease. I went around to the front entrance of the hospital with Avery, while Hubby and Brooke stayed behind.

I can still feel the knots in my stomach, the plastic handle of Avie's carrier cutting into the flesh of my upper arm, the plushy fur between my fingers of the monkey I bought in the gift shop, just knowing that this monkey would be hanging from a hospital bed.

It couldn't have been more than 20 minutes. I had time to pick up a magazine and a granola bar, trying to force myself to read and eat to keep from staring at the numbers tick by on my cell phone. I remember the wild look in my husband's eyes when he came looking for me. The breathlessness of his words, the way he cradled my eldest in his arms as if he would never let her go.

I can still hear the sounds of the rolling office chair scratching around on the floor as we wheeled around the waiting room trying to keep a bored two-and-a-half year-old busy, while waiting in agonized impatience for the doctor to arrive. The way the door opened and he slipped in and closed it quietly behind him. His young face, pained with the thought of having to tell us that news. The hesitation in his voice.

I wonder if we are the first family he has ever had to say that to?

I can still feel the prick of the tears that began welling in my eyes as he spoke. I remember trying desperately to suck back the tears, while Brooke wiggled in my lap. And, most of all, I hear her little voice, as she turned around to pat my cheeks with her tiny, warm baby hands and told me "Don't cry, Mommy. Don't be sad."

Those memories won't ever go away. But, they needn't be the only ones that are tied to this diagnoseversary.

This day also marks the day when we started to cure my daughter's illness. When we found and removed the tumour that would have eventually killed her. This day was the beginning of a completely different perspective on life for us. I like to think that this day changed our lives in a good way--we are better people for having undergone the dark days that followed the diagnosis.

And it has just been a year. We are very fortunate--some cancer patients are on treatment for years. Leukemia treatment plans, for example, can last as long as three years--that's an insane amount of time for families to carry such burdens. Three years? Can you imagine how financially, emotionally, physically draining that must be for everyone involved? I can't even fathom it.

Brooke only underwent chemo for six months. She never had radiation. She never had any blood transfusions. She never had any hospital admissions. She never caught any of the illnesses that are typical with low-immunity systems. Overall, she had it easy.

And, the biggest blessing of all? She has graduated into the post-treatment clinic just after New Year's. The hospital visits are fewer and farther in between. Brooke is beginning to forget the nurses' faces. Today, she is cancer-free.

I think I'll toast to that.

Making a difference

Every May, Hubby participates in the CN Tour--a cycling and walking event that raises money for CHEO (Children's Hospital of Eastern Ontario) and the local Candlelighters chapter (an organization that provides financial, emotional and medical support for families with children suffering from cancer). He's probably cycled in this yearly event for the past four or five years.

And every year, the same scenario plays out--he forgets he's signed up for it until about two weeks before the event and then he makes a half-hearted effort to raise funds. He often ends up getting a few donations, but the bulk of it is a self-donation he makes as a result of feeling guilty for not canvassing enough. He generally raises a few hundred bucks, but never anything significant.

Not 2011. This year, cycling the 70km for CHEO and Candlelighters means so much more than it has ever before. The tagline for the event is 'Help Kids with Cancer.' Uh...yeah, as you can imagine, we're pretty emotionally tied to that one.

Over the course of this past year, we have been on the receiving end of the support offered by these great organizations. The programs. The compassion. The thoughtfulness. The respect. The amazing staff. Words are simply not enough. Both organizations have been behind us 125% during this whole process. We've seen how the money they raise is actually spent. We've seen how much more is needed. (Trust us, there was a period of time, we wondered how we could afford to purchase one of those expensive, but oh-so-wonderful blanket warming machines. We so desperately wanted to get one for Ward 4North!) And, in the end, we know how much these deserving organizations appreciate our help--in whatever form we can provide it.

Although it is a big fundraising event for CHEO, it's not the only one--but, the CN Tour is the premier fundraising event for Candlelighters. Last year, the event brought in over $570,000 for both organizations, which is fantastic--but the need is great. So, once again, the goal for this year's event is blowing last year's total out of the water!

This year, with Brooke as his inspiration, Hubby decided to set a CN Tour goal for himself. His team's fundraising target was $2,000 and Hubby's personal goal was half of it. $1,000 seemed a far reach, but he was determined to make it--even if he had to donate the remainder himself, he was determined to see it through!

Well, here we are a week from the event and he's at $1,150! We are so proud of him.

Of course, every bit counts, but this year, it feels good to say we've done our best to make a significant contribution (or at least a genuine effort to make others aware of how wonderful CHEO and Candlelighters has been to us and to many other childhood cancer families in our community). We feel really good about being able to give back to these organizations that have helped us so much this last year.

Anyways, all this to say, that we've set a new goal for ourselves! We are trying to make it to $1,500 by the end of the week. So, if you haven't been completely tapped donating to your own personal causes and have a spare $10 to give to a good cause (tax receipt supplied, of course!), please check out Hubby's site: CN Cycle for CHEO. We would be most obliged!

And, if you are interested in participating, it's not too late to register or volunteer! Lots of races (cycling, walking or in-line skating) to partake in and lots of good, old-fashioned, kid-friendly fun (think bbq, Little Ray's Reptiles animal demonstrations, moon bounces, clowns, face-painting, Craz-E-Crew stunt show, magic show, slides, etc.) that will take place at the Canadian War Museum parking lot (at the Lebreton Flats) during the races and afterwards. You can even bring along the family dog. Definitely not an event to be missed!

Hubby will be cycling the 70km on the morning of May 1st with his team from work. B, Avie and I will walk in the Family 5km. Well, the girls will be waving like royalty from the fine comfort of their little red wagon, while I'll be the one hoofing it, but it'll be fun nonetheless. Hope to see you there!

Dear 2010...I'm done with you. Bring on 2011.

So, it's nearly a week past Christmas and the usual end-of-the-year chaos reigns in our household. Overflowing recycling bags of shredded wrapping paper and packaging has been stacked in the garage; leftover turkey and ham is dwindling in the fridge; batteries have been drained, recharged and drained again; Moon Sand packages have already been emptied onto the kitchen island; fresh bubble bath bottles have been added to much-needed soaks; snowmen socks have been ceremoniously added to the laundry basket for the first time; Ferrero Rochers and cashew cans have been opened; gifts that needed different sizes or working parts have been returned or exchanged; wrapping paper and cards for next year have been purchased at 50% off; and my new Xmas morning slippers have already fallen apart. Santa was good to us once again. I hope he was to you, too, dear readers!

I'm still in the midst of my holiday hiatus, soaking in the simple bliss of time at home with family and loved ones, watching the magic and wonderment of children that sparkles with the snow this time of year, and carving out childhood memories and traditions for my girls to cherish, so I'll make this a short post.

Highlights of this Christmas:

• Watching Avie learn how to clap. She now claps for anything, anyone, anytime. Love the accompanying grin that goes with it!


• TSO concert with my Hubby.


• Christmas Eve Day cookie baking with B.


• Getting Mike Rios' Christmas card and trying to explain the nudies to my mother-in-law.


• B setting out milk and cookies for Santa and a carrot for Rudolph. (Hubby's first time drinking the milk and eating the cookie. He left the end of the carrot and some credible crumbs as evidence of his handiwork. I wrote a Santa letter to the girls. It was too much fun!)


• Brooke jumping around, saying 'I knew it! I knew it!' every time she or anyone else opened a gift. Grandmaman pulling B around the living room in the sled.


• Brooke actually hugging and kissing the box with the 'Singing in the Bath Ariel' doll in it (given to her by Grandpa and Grandma Louise).


• The kids' faces and shrieks of delight when Hubby set off the Christmas Day fireworks. Awesome!


• My jewelry box handmade by Hubby.


• Grace's Christmas Day 'bumpy' candy skirt and her cool hightops. Very chic.


• Rich shovelling the wrapping paper off the floor with his new snow shovel.


• Dylan's expressively unimpressed face when he received underwear as a present.


• Jackie's delicious Boxing Day crepes.
  
• Avie learning how to crawl--well, crouch and scout, anyways. She's never the same place I left her!


• Playing WTF with Hubby, Jax and Bren and answering some of the raunchiest and thought-provoking questions I've ever been asked.


• The kids and Brooke's new doll (dressed in it's tiny rubber boots, of course) on the sledding hill.


• Avie folded in two on the floor, falling asleep while sitting.


• Snapping photos of B's first venture on her new skates today. She may have wobbled like Bambi, but she was a terrific sport!


• And, the best one--Brooke's last chemo treatment on Dec. 20th and the resulting 'WINNER!' medallion she picked out of the Medical Day Unit's treasure box.

Lowlights of this Christmas:

• Christmas slippers that fell apart precisely 1 hour after I put them on my feet. Shame as they are so comfortable! Damn you and your poor stitching, Giant Tiger.


• And, tonight---B is once again at CHEO.

Apparently, my eldest daughter has started her own Christmas tradition--injuring herself every Christmas season. No real worries, people. She fell down and bumped her head, leaving a half-inch, and seemingly very shallow, gash behind. Might need stitches, so Hubby has taken her to the hospital.

We had a blood test yesterday afternoon, so we know her numbers are very high this week and she is at no risk of infection, which is good. Still, we called ahead and ER staff have currently placed her and Hubby in an isolation room. I am waiting to hear more details.

Deja vu from last Christmas. At least this year, we are better prepared. Certainly helped that Santa brought B her very own Netbook, pre-loaded with her favourite movies and websites. Sigh.

As wonderful as Christmas has been to us (I didn't even mention the rest of the pressies Santa brought all of us!), I'll be happy to have this humdinger of a year behind us.

Merry Christmas, folks! May 2011 bring you all the joys you deserve.

Update for January 10, 2011: I never got around to editing and posting the previous bit during the holidays, but I thought after this morning, I ought to.

I was on here, listening to my playlist when, Brooke asked me to play 'her' song. (It's a song we attributed to her upon her birth. Part of the birth video Hubby made years ago. It's on the playlist. Reader challenge: Can you guess which one it is?)

Anyways, she said she wanted to dance to the tune. So, I whipped out the camcorder, keyed up the song and she started twirling around. It was beautiful--until her legs slid out from underneath her and she toppled into a sidetable! I put the camera down, thinking she had just bumped herself and would need a kiss on the boo-boo, but when I saw the blood droplets on my little klutz's shoulders, I did what all mothers do. Raced her to the washroom to get a better look and get a washcloth to stem the flow of blood.

A gash on the top of her head--another one, not two weeks after the first one--about a half-inch in length and about six inches from the one already healing on the back of her head. Applied pressure, washed it with antiseptic towelette, put on Polysporin and a bandage and called Hubby. Met him halfway to CHEO, where he is now with Brooke. At least we're getting the use out of that little Netbook Hubby got B for Christmas....

B cried for a bit, but as soon as the initial pain receded, she was fine. She was more upset by the blood on her new favourite shirt ('favourite' as of two hours before when I unearthed it from the bottom of the drawer), which I promptly soaked in the sink with the washcloth. Myself--I'm still wearing my bloodied shirt. I should probably soak that one, too.

Anyways, don't know if it will require stitches, but we don't want to take any chances. (Last gash was simply glued together and bandaged, which B yanked off the next day.) Luckily, because she is an oncology patient, she is put in her own room and doesn't have to wait in Emergency with the rest of the walk-ins.

B has had one helluva 375 days! Just when we thought all of this was coming to an end, she has to go and bump her noggin. And, we are set to have her first post-chemo CT scan on Friday. So, it looks like it's gonna be one of those weeks again...Can we please get to Saturday already?!

Happy New Year, folks. Sorry for the long spiel.

Coming home

Looks like the end of this week is finally near. B's morphine drip was removed today and she has been powering through all afternoon and evening on Tylenol alone. ('Powering through' is hardly the right expression. The kid bounced back like a rubber ball. She's restless, impatient and in desperate need of a change of scenery and a walk outdoors.) The doctors deemed her ready to go home and were willing to discharge us tonight.

Hubby, however, wasn't willing to risk waking up the grumpy bear for a fifth time today. Seems like each time B falls asleep, some nurse or IV tech hovers over her, trying to disconnect her many wires or take her vitals. All very important stuff, of course, but irritating to a 2.5 year old, who hasn't napped properly in a week.

So, Avie and I will go and pick them up bright and early tomorrow morning. I'm certain Hubby and B will be glad to see CHEO in the rearview mirror, if only for a few days.

We will return on Monday to see the Oncology Clinic to discuss chemo treatments. Even though the full pathology report has not yet been released, the doctors did confirm this morning that it is in fact, a Wilms' tumour. Yeah! (Shaking cancer pompoms and cueing the victory music.) Good news is good news, after all. And frankly, we've been waiting all week for some good news, so I'll take what I can get.

Just another thank you to all of our family, friends, neighbours and co-workers for all they have done for us--be it good wishes, prayers, food, gifties, homemade cards, meditation circles, mass intentions, grass-cutting, chicken-tending, babysitting or heartfelt offers of help. We truly are very blessed to be surrounded by such wonderful people who care so deeply for our family. Brooke is a very special little girl and it brings me great joy to know that others can see the strength and spirit in her that we see each and every day.

You love her, you really love her.

And, we love all of you!

Normalcy

More than anything, I wish I could rewind life, turn back time to last week, when our little world was normal and ordinary and bordering on simple. Normalcy, however, has gone out the window and I wonder if it will ever come back. Basically, we went into CHEO yesterday to run some tests on B's suspected urinary tract infection and instead came out today with a diagnosis for a cancerous tumour on her kidney.

Were you SHOCKED by what you just read? Did the mention of the BIG C make you freak out just as much as we are currently FREAKING out? Did it STOP you in your tracks, fill you with DREAD and leave you feeling like you have NO IDEA where to go from here? Well, that's where we are right now. We are devastated. We are awash with overwhelming emotions and unanswered questions. Tonight our lives were changed forever. We heard the news that no parent wishes to EVER hear about their child.

I just got home from a long--and unexpected--day at the hospital, leaving behind two of the three people in the world who mean the most to me. My husband (who experienced cancer as the son of a survivor and now experiences it again as the father of a patient) and my sweet, innocent little girl (who hasn't the foggiest idea about any of this. She thinks she is having a nice sleepover with Daddy at the hospital. She isn't even in pain, so is a little unclear as to why she is there), who is utterly undeserving of this shitty news.

I am heartbroken. I just endured the longest and most lonely car ride ever. Do you believe in pathetic fallacy? I do, now. The world wept right along with me as I drove home; Avie cooing quietly in the backseat, completely oblivious to the tears coursing down my face.

The medical story is a long one, but the short of it is this--Brooke looks to have a sizable mass on her right kidney. The doctors suspect it is a Wilm's tumour (?), which is apparently quite operable and has a very good prognosis of being cured with surgical removal and/or chemo. We meet with the encologists in the morning to discuss when the surgery is slated to take place and what the treatments will likely entail. We pray for the best. We could use your prayers, too. Thank you in advance.

The upside? Other than the blood in the urine (which is why a bladder or urinary tract infection was suspected), Brooke has no other symptoms. Her bloodwork has come back negative for whatever it is they test for in bloodwork, so she seems fine on that account. She has no abdominal pain, no fever, no vomiting, nothing else. Perhaps we have caught it in time? She's bouncing on hospital beds, giggling about party hats (it's her twin cousins' 4th birthday today--Happy Day Gracie and Dilly Dog!) and playdoh. Frankly, this toddler normalcy is what makes this whole ordeal all the more scary and surreal.

My kid looks healthy. She acts healthy. But she is not healthy. And, it is a good thing we went with our gut and brought her to CHEO yesterday afternoon, rather than wait for her scheduled ultrasound in September. They took our complaints seriously and more tests were run. Luckily, we had an ultrasound scheduled within 12 hours, but it's really never a good sign when things move that quickly.

Now, I just wish for last week, when my greatest worry was what to make for supper.

I wish for last week when the most exciting thing I had to post about was our first crop of strawberries.

I wish for last week, when I was busy planning the family bbq we were going to have this Saturday, in honour of the twin's birthday, our wedding anniversary and Father's Day.

Most of all, I desperately wish that it was yesterday and Brooke was asleep in her bed, just 15 feet away from me.

P.S.: July 17--Some of you may be wondering why we chose to relay this news in a blog post. Hubby and I agreed that making the announcement via blog was one way of avoiding having to repeat the story to everyone individually. As you can imagine, the telling of it has already become quite tiresome. So, I apologize for the rather blunt way of sharing our announcement, but there you go.

As for the latest news: A CT scan is scheduled to take place tomorrow morning, after which much should be revealed. We should know soon what kind of tumour we are facing, but it looks like surgery will be taking place early next week. As for Brooke, she is her usual happy-go-lucky self, charming both CHEO staff and other patients alike with her adorable antics.

Thank you again for your thoughts, everyone.

A city cycle for the kids

For several years now, Hubby has participated in the CN Cycle for CHEO (the Children's Hospital for Eastern Ontario). The fundraiser is in support of the hospital and all it does for our community's sick and injured children.

I can't tell you what a relief it is simply knowing that a hospital and staff dedicated to our children's health and wellbeing is so close to home. The doctors and nurses at CHEO were exceptional when B had to make numerous trips there over the holidays. I can't express just how touched I was by the stocking that the nurses gave B on Christmas Day. The stocking (filled with crayons, bubbles, stickers, candy, jewelry-making kit and a puppy dog handpuppet!) was just a physical representation of how much the people who work there care about their patients. It truly made my little girl's day! And, although we have been fortunate enough not to have needed CHEO's excellent services many times in our two and a half years of parenthood, we know that not all families are quite so lucky.

Anyways, this weekend, Hubby will once again be cycling around the city (70 km) in support of this great cause. And, in an added twist this year, he has decided to match whatever he receives in sponsorship with his own donations. Call it Baby Fever or what-have-you, but I think Hubby has been inspired by the appearance of our little cherub to give more than usual!

That said, I'm using this blog to blatantly elicit some last-minute donations from my readers. (Might as well soak my Hubby for all he's got, while helping out a great cause! ;) If you would like to donate to the CN Cycle for CHEO fundraiser (rest assured that 100% of donations goes directly to CHEO and donations over $10 will be accompanied by a tax receipt), please feel free to visit my husband's page.

Thank you for your support!!