an update

Dear Gabrielle,

I finally have a quiet moment to update all our friends and family about you.  You are sleeping peacefully beside me and your dad and brothers have gone out to run some errands.  Three kids make for a very busy household.  The house is a disaster, I still haven't fed myself or had time to get showered and dressed.  At least I had time to have my coffee and wake up after a pretty busy night with you!  Amidst all the chaos, I wouldn't trade it in for anything.

We got a call from the BMT doctors and your date for your surgery is March 7th.  Originally we were told the 28th but now I get you home for another week.  You will have your central line put in first.  We will stay the night in hospital with you and the next day you will start your 10 days of chemotherapy.  Once the chemo is done they will give your body a day's rest and the next day will transplant.  Once your white blood cells come back up to a normal count we will all go home.  I was very upset when I was told that they had made a mistake on the dates because a big part of me wants to just get started so that we can get it over with.  Another part of me was so relieved to be able to put it off longer so that I can keep pretending that nothing is wrong.

Your brothers are so in love with you.  You are one lucky gal!  Michael continually wants to hold you in his arms and when he does he lays so still.  You should see how proud he looks to have you all to himself. The other day, the boys wanted to put you in the tiny baby stroller but I had to save you from that.  Thank goodness they aren't in charge around here, who knows what kind of activities they'd have you involved in!  Your big cousin Anna had to explain to James that he wasn't able to marry you because it was against the law. James was heartbroken as he had planned all the details of the wedding.  He even planned your outfits and the dinner you would have!  I told him that instead of marrying you he could look for a girl who had some of the same qualities - calm, tough and beautiful:)

You will be in the hospital for roughly 6-8 weeks best case scenario.  I can hardly bring myself to think about it without getting emotional.  We are going to make it through this Gabrielle and we will be by your side every step of the way.  Stay strong and brave like you have thus far.   Our hopes with this transplant is to get rid of your old cells and give your body some new cells that work more efficiently.  We hope these new cells will give you the opportunity to come home and enjoy the rest of your life the best way possible.

We love you Gabrielle.

Mom

Home Sweet Home

A week ago, Gabrielle was finally able to come home after 10 long days at B.C. Children's hospital.  On the final day of rounds with the doctors, and after they gave us the word that we were discharged and wished us luck in the stem cell transplant, I once again got very emotional as I thanked them for all their care and for making Gabrielle healthy again.  I can't tell you how grateful I am for these guys and how much I liked all of them.  They're amazing.  While Gabrielle was in the hospital, Regan and I took turns staying the night at home with the boys and the hospital with Gabrielle.  We want to make sure that we keep life as 'normal' as we possibly can for James and Michael who don't quite understand the realities of what we're faced with as a family.  This month has been birthday-o-rama month with kiddy birthday events almost every weekend. With the busyness, James and Michael have been able to attend a couple, but have missed most. The picture, though, shows them at their friend Lilly's pirate and princess party.  James loved dying his hair green.  What a bad looking dude!

Can you guess who took this picture?  Yes, Regan of course!  In true style, Regan and Uncle Ryan as well as Gabrielle were watching a hockey game in the hospital and claimed that Gabrielle really really liked it.  She does look rather content.  I wonder how long the three of them watched the game for?  Is Gabrielle going to be an Oilers fan like her dad?  Hmmm...we shall see.

It was quite challenging playing with her and keeping her 'active' while she was attached to IV's, oxygen and had her feeding tube pouring out her nostril.  Tummy time?  A little difficult I shall say!  I was so nervous I would pull something out every time I picked her up out of her crib.  I guess I kind of got used to it by the end, but I tell you, as soon as those nursed unhooked her from everything I was the happiest mommy ever!

While Gabrielle was in the hospital, the four of us went to visit a place no family ever wants to go to: Canuck Place. What an amazing place, full of caring people, and it should be a great resource to access when we need it.  They want us to come and stay a couple of nights as a family before we head back into the hospital for her transplant so that they can get to know Gabrielle.  They offer pediatric palliative care.  What?  Wait a minute.  Me?  Us?  Are you serious?  I must still be in denial.

James thought it was the most magical 'castle' ever with art rooms, toy rooms, music rooms and a cool 'volcano' room that consisted of padded walls and floors and big balls and gymnastic equipment to run and go crazy in.  It took Michael maybe 5 seconds to clue in that he could run as fast as he could into the padded walls without getting hurt.  Something tells me that they'll have fun on our family 'vacation' to Canuck place sometime in the near future.  Sometimes I wish I was 19 months and almost 4.

I can't tell you how good it is to have my baby home.  It was very hard for me to come home to bed and not have her in our room with us while she was in the hospital.  It felt very empty, I felt very empty.  On the nights I would be home without her, Regan would stay at the hospital.  I had my bed all to myself, however, I very eagerly welcomed James to sleep with me.  I am going to savour every minute of every day with her at home.  We only have 10 days until she is back in the hospital.

Gabrielle loves bath time and while we were in the hospital she only had sponge baths while lying on her bed.  She wasn't able to kick her legs around in the water as she does at home.  She must be so happy to be out of the hospital and back to her noisy, busy, crazy home!

Here's Daddy and Gabrielle at the end of a day cuddling on the couch.  She was just staring at him the whole time so I just had to reach over and grab his iphone (which he has with him every second of the day) and take a quick picture. I couldn't imagine doing this with anybody else but you Regan.  You remind me to focus on the positive instead of curling up into a tiny ball on my bed.  

Gabrielle; I'm so relieved and happy to have you home where you belong. We missed you. We love you. It wasn't the same at home without you.

Gratefuls

It's so easy to complain and ask dead-end questions. Complaints like "It's not fair," or dead-end questions like, "Why me?" are stupid because, in my opinion, the string of sentences that run through our minds immediately after are of low-quality and usually negative. They can - and very quickly - take us to pretty dark and lonely places that are tough to return from.

I remember hearing once that being human is like walking through a cave with a miner's cap: there may be an entire wall of gold right beside you for all you know, but if you don't stop looking at the dirt and turn around, you'll never see it. I learned when teaching perception in my Gr.12 Psych classes that researchers have validated this. By and large, we can only focus on one thing at one time. I think the illusion below is such a great example of this, how you can't see the two people and the hour glass at the same time.

So we learn about this in first-year psychology classes, but we never really stop to think about its significance in how we view the world, and how this limitation can affect us horribly or wonderfully.

That's why I like "Gratefuls" ... just rattling off a list of all the things I'm grateful for. Thoughts attract like thoughts. They snowball. And gratefuls get the positive thought-train flowing better than anything else I can think of. If we can only focus on one thing at a time, and thoughts create strings of like thoughts, take control!

And, I believe, if you do gratefuls enough (just like if you repeat any string of thoughts enough), they become who you are.

So here are mine right now:

• I'm grateful for coffee and coffee shops 
• I'm grateful for my health, and doctors and nurses
• I'm grateful for running water and toilets that flush
• I'm grateful for technology, the internet, the age we live in, and democracy
• I'm grateful for compassionate rules and programs and people
• I'm grateful for family, friends, empathy, kids, laughter, and love
• I'm grateful for the sunny day outside
• I'm grateful for my wife and three children
• I'm grateful for musicians who can compose and play magical songs and make everything seem a little more beautiful 

And now I feel a hundred times better.

~Ask My Mom How She Is~ - author unknown

~Ask My Mom How She Is~ - author unknown

My Mom, she tells a lot of lies.
She never did before
But from now until she dies,
She’ll tell a whole lot more.

Ask my Mom how she is
And because she can’t explain,
She will tell a little lie,
Because she can’t describe the pain.

Ask my Mom how she is,
She’ll say, “I’m alright.”
If that’s the truth, then tell me,
Why does she cry each night?

Ask my Mom how she is
She seems to cope so well,
She didn’t have a choice, you see,
Nor the strength to yell.

Ask my Mom how she is,
“I’m fine, I’m well, I’m coping.”
Goodness, Mom, just tell the truth,
Just say your heart is broken.

She’ll love me all her life,
I loved her all of mine.
But, if you ask her how she is
She’ll lie and say she’s fine.

I am here in heaven,
I cannot hug from here.
If Mom lies to you, don’t listen,
Please hug her and hold her near.

On the day we meet again,
We’ll smile and I’ll be bold.
I’ll say, "You’re lucky to get in here, Mom,
With all the lies you told!”

Finding A Work-Life Balance

If there's one thing I've struggled with the past five years, it's been finding the balance between working and spending time with family. Gabrielle's brought this to the forefront of my thinking. While I don't like viewing "work" separate from "life" as the title suggests (because I believe we can find work we love and enjoy), I found this TED Talk enlightening and relevant, and I hope you do too.

Happy Valentines Day

Amy,
Exactly 10 years ago today I proposed to you. We hugged and kissed and scurried off to a restaurant in Richmond and started planning the details of our 24-yr-old budget wedding and life thereafter.

10 years later I love you at least as many times more, and I'm learning to care less about the master plan and more about those who are a part of it.

Happy Valentines Day, I wish you were home tonight,

Regan.

Siblings

Happy 4-month-birthday Gabrielle!! We love you so much and love your smiles, cuddles and your beautiful and calm temperament!

We have been at the hospital with Gabrielle for 6 days today and the boys miss having their sister at home.

James and Michael just love "Abrielle"; she definitely lucked out in the brother department! Michael cuddles his little baby doll "Abrielle", while James really would like to come and live at the hospital with Gabrielle and I.

The boys came to visit 2 days ago and her face lit up when she saw her noisy, busy, and energetic brothers. James loved to stand on the chair and help the nurses. He started by giving her a saline nebulizer while talking to her whole time. This line sticks in my mind: "Don't worry sweetheart, you're ok". A future doctor in the making perhaps? It was a beautiful moment for me to watch.

Gabrielle seems to be slowly improving. I wish she was able to bounce back as kids sometimes do, but I am noticing little differences each day. I stayed the night last night and we both slept the entire night. Before bed, she needed a new IV site, and after much poking and proding, and crying they finally were able to find a vein in her hand. It was not fun, watching them try so many times before finally finding one.

Today is a new day. I do not know what tomorrow will bring or what the rest of the day will bring. Gabrielle has taught me that we can only live in the present.

I do know that she continues to need oxygen support, saline nebs every 4 hours, antibiotics, and a saline drip to keep her hydrated. Her feeding has slowly improved, and she continues to flash the cutest, gummiest smile. She has lost weight and the doctors are concerned. The next step...an NG feeding tube will be inserted later today to increase her volume of breast milk.

Gabrielle you are the most beautiful, strong and brave little baby I know. I love you.
xx

Look At This Team

Gabrielle has been the luckiest little girl when it comes to the attention she's received here at B.C. Children's Hospital. From the day she was born she has had specialist after specialist helping her and contributing to the master plan to make her as healthy and happy as possible.

We've also come to appreciate how incredible doctors and nurses are. Not only do they have some serious skills, but they're all really good people. I just may become one of those parents who wants his kids to become doctors.

Above and below are pictures of some of the members from the B.C. Children's medical team who have been working with Gabrielle. Some key people are missing, and some were just reviewing her file that day; however, and nevertheless, she's a lucky girl.

I think every father hopes their children will view them as a hero of some sort. Especially fathers of daughters. I know I've always hoped for that.

To share something personal, I always imagined myself playing my daughters Bron Yr Aur on my acoustic guitar ... somewhere in the mountains ... with the wind rustling the leaves ... and the leaves screaming "we're alive!"



It's funny how life pans out. Sweet Gabrielle isn't able to hear leaves blowing in the wind. She won't be able to appreciate the melody of this song in the way I imagined. And that's okay. Because it just is. How could it be anything else?

I guess what I'm trying to say is that Gabrielle's my hero. I'm not hers. She's taught me more about life than I ever could have taught my children otherwise.  Life is raw. Life is.

How wonderstruck Gabrielle is by so little. Her infancy, innocence, and fragility is, in my opinion, heroic. You are my hero, Gabrielle. You knew we would name you that, for you have the strength of every god incarnate.

Wonder: what a wonderful word.

Thank you Gabrielle. Bron Yr Aur will forever remind me of you, and the wonder you've inspired me with.

Pneumonia

Hi Everyone,

Gabrielle was ambulanced from Langely Memorial Hospital to BC Children's hospital so that the best medical team available can monitor her bout of pneumonia. Gabrielle's state slipped a little bit the morning after Amy's "on the mend." Ironic thing about this condition: nothing's for certain.

Tonight she's doing well and Amy's staying over night with her. The phlegm, coughing, and fatigue, however, need to be monitored, especially with her I-Cell predisposition.

As up and down and exhausting as this all is, we're doing well. Thanks to so many of you for your well wishes and prayers.

Here's a picture of the whole family at Langely Memorial last night. The photographer was none other than the hospital's very own Dr. Benjamin Ross (Jimmy and Mickey's funny uncle).

On the mend...

Gabrielle is finally on the mend after having such a nasty cough, pink eye, runny nose, low grade fever etc. The poor little girl was not feeling well at all, but thankfully, is starting to get her colour back and looking a little happier. Her little body has such a hard time clearing all the mucus and she worked so hard at trying to cough it out. Her body must be sore.

I found this poem posted by one of the mom's who I've 'met' on our FB I-cell support group. She also has a little girl who has the same disease as Gabrielle and they live in Newfoundland. Although I haven't met her (the mom), she seems pretty special and her little girl is so adorable.

There are definitely good and bad days and as we gear up for her stem cell transplant at the end of the month, I am finding that most days I feel saddness that won't go away. I have found some amazing poems that really describe how I feel as I find it so hard to find the words to express the whirlwind emotions.


~I Chose You~

I came to this world to fulfill part of God's great plan
I chose you as my parents, knowing you would understand.

It takes someone with an unyielding faith,
strong, loving, full of grace

To understand all it takes to be me
For only you , my true beauty & worth could see

You'll laugh with me, love me, make me smile, hold me in your arms
if just for a while.

Pushed to your limits I know you will be, as together the world we teach of God's
compassion for humanity.

Such an important life changing message I was sent to bring
My help could not be just a random thing.

I needed parents who could be my voice,
So you see You were the only choice !


Thank You Gabrielle for choosing us, you've taught us more than you could imagine.



Here is a cute little video of Gabrielle a few weeks ago sitting in her Bumbo chair on the counter amidst all the mess!