WTF Who is this...?!?

OhmygodOhmygodOhmygodOhmygodOhmygodOhmygodOhmygodOhmygod...

I can't believe it. I kept spying on her on the way home from the hospital. I peered into her car seat when I should have been watching the road. Is this real? Is this really happening? I feel like I am driving home a newborn babe; she looks so delicate, so fragile, so beautiful.

We took out her NG tube!

Hi!

I'M FREAKING OUT!!!

She's had that tube for over TEN MONTHS and now it's gone! Bu-bye. Sayonara. Auf wiedersehen. We went to the hospital to have it replaced, but after talking with the doctor, the nurses and the dietician, we decided to leave it out. We can go back at anytime to have a new one put in if we need to, but we all felt this was the best way to move forward. She eats so much and is starting to eat a good variety of foods and she has mastered drinking from both sippy and regular cups so why not give her a chance? Meds might be a battle, but they might not. She has been taking her Mitotane in yogurt and pudding for the past few weeks and we were TERRIFIED to try that. So terrified that I couldn't even tell people; I was so scared I would jinx it. But she is doing it! Sometimes she has chocolate mousse with her breakfast, but hey, if that's what it takes!

I'll tell you what's weird, though. I thought she attracted a lot of attention with her tube. I always heard people whisper when we walked by or saw their pitying glances and I was very open with people who had questions. But walking her out of the hospital WITHOUT the tube - I had four different people stop me and an old lady kissed her. Is that normal? She does look super cute today and I was carrying her sack-of-potatoes style (lying on her belly across my forearm), but that seems a little excessive. Maybe we were giving off a "new baby" vibe and people were drawn to that.

Anyway, here she is in all her tube free, normal baby glory. Geez it's been a long time coming...

Eating my meds...

Mitotane Face!

Sidetracked For A Good Cause: part 2

In light of me leaving my kickass job as a fundraiser at Free The Children and because Eleanor is so gosh darn boring these days - what, with her good health and sunny disposition - I thought I would highlight some awesome projects and causes that I feel are important.

Remember to wear your jeans this Thursday!

This Thursday is Jeans Day in support of the BC Children's Hospital Foundation!

I remember my first Jeans Day way back when. We were told that we could only wear jeans: no cutoffs, no dresses, no skirts. So naturally a few people decided to break the rules and were promptly sent home from school. My good friend Julia was one of the offenders. She wore cutoffs, but not scary Coachella-esque, cut-to-there cutoffs. Just normal, middle of the thigh cutoffs with a pair of cap-toed sneakers and a plaid shirt as it was 1994, after all. Right in the middle of the grunge heyday, though that fashion could easily still be rocked today... yikes. I am old!

Anyway, it struck me as dumb that we got hung up on exactly what kind of jeans to wear, and that was the memory that stuck with me about this fundraiser. It wasn't until last year when I saw a pin at my local Thrifty's that I even knew what foundation Jeans Day benefited. Now I know that supporting the BCCH Foundation will help build a new hospital that will provide state of the art care to children like mine. So please, wear your Canadian Tuxedo or cutoffs or jeggings this Thursday. Give generously and wear your button with pride. And when people ask you, "Dude, why are you rocking a denim vest?" you can tell them you are wearing it for Baby Eleanor!

For more information, check out their website or find it on Facebook.

My name is Eleanor Goudie, and I approve this message.

Sidetracked For A Good Cause: part 1

In light of me leaving my kickass job as a fundraiser at Free The Children and because Eleanor is so gosh darn boring these days - what, with her good health and sunny disposition - I thought I would highlight some awesome projects and causes that I feel are important.

The first one I want to feature is pretty awesome. I'm a sucker for BIG projects with lots of bang for their buck. They require a ton of organization to keep all the moving parts in order and lots of blood, sweat and tears. This project is no exception.

Ladies and gentlemen, I give you the Oilympics Charity Hockey Tournament!

This crazy group of people are about to take on the Guinness World Record for worlds longest game of hockey. The previous record is 243 hours and they are aiming to play for 254 hours!

That means 10 days of hockey, 24 hours a day - and all proceeds will go to support life saving equipment for PICU and cancer research at the Alberta Children's Hospital. They have a big fundraising goal of 1.5 million and they will need your help if they want to reach it.


Please support this event any way you can!

The game will be played from May 6 to May 16, 2012 at the Chestermere Recreational Centre just outside Calgary, AB.

For more information or to donate, click here for their website or find them on Facebook at www.facebook.com/HockeyMarathon

For Granny

I tried to capture Eleanor and Bea's play date but it is really hard to get a 1 year old and 5 year old to sit still! Especially when they are in the midst of a push-me/pull-me game - which I am pretty sure isn't a real game, but they played it anyway!

#sad

I quit my job today. They have been holding a spot open for me and today I stepped aside. It's over. It's not you - it's me. Let's remain friends.

Sigh.

I was there two years (three if you count my mat leave), which is nothing, really, and yet I was able to accomplish so much, learn from amazing mentors, meet incredible world changers, pillars of peace, heads of state, the Dalai frickin' Lama!!! I LOVED my job. I loved being part of a huge movement of change. I am really sad that it's over, but I know it's the right thing to do. I feel like I am owed this time with Eleanor. I am entitled to enjoy her when she is not sick. I put up with a year of stress and worry, catching her vomit with a puke tray (or my hands), stroking her fevered forehead, whispering in her ear "it'll be okay" and never believing it and now it's my turn. I get to reap the benefits. I get to hear her giggle and watch her smile and grow. Sure, we have no money and it is totally impractical, but it's the only thing I can see myself doing right now. In a few months down the road I will start thinking about work again, but for now I'm going to get my cuddle on.

It's a sad day, though.

Thank you to Dalal, Erin, Russ and Caryl for your guidance and knowledge. Thank you Amy and Matt and the whole development/donor relations team for making me laugh, even during We Day madness. Thank you Vancouver office for welcoming me with open arms. Thank you, FTC. This job was so much more than just a job to me. I'll never forget my time there.

She Offered Stability and Calm...

This is what "stable" looks like:

Nice News

We went out to see our new endocrinologist at the hospital yesterday and were delightfully surprised to see one of the fellows from Children's there! She is doing an elective here on the island and made sure to come in and examine Eleanor. We make fun of endocrine all the time as all of them are kind of nerdy and socially awkward, but they followed Eleanor with such care and compassion that we truly have nothing but love for them. Karine is a sweetie and took a vested interest in our baby girl - she even did a presentation on her!

Anyway, it was especially good to see her as she had nothing but good news for us. Eleanor's testosterone and DHEAS levels are still negligible (means cancer is more likely to be negligible too) AND her estrogen and bone age came back normal! No precocious puberty after all! They think the breast buds and pubic hair are both side effects of the Mitotane, and will be reversed once she stops taking it. Kinda weird, but they aren't worried so we aren't going to worry! We really like not having to worry, especially with her scans coming up next month. It send like everything is where it should be and we can continue living our "normal" life.

Like figuring out how to stand up. Nice normal things.

It's all fun and games til someone calls the police

Easter dinner was a huge success. Miss E was hamming it up for her uncle and grandparents, showing off her new skills (she can say "hi") but got a bit fussy waiting for food. Granny gave her the phone to play with, which she thought was hilarious.

Literally two minutes after I finished recording that video, Eleanor continued to mash the key pad and a 911 operator came on the phone! I guess if you press enough buttons, you call the police?!? I hung up immediately, which made Kris exclaim, "murderers hang up! Never hang up on a 911 operator!" They called back and were quite nice about our questionable choice in toys. If you listen to the video, you can even hear my mum saying "Don't let her dial 999!" which is the English/Irish emergency response number. Oh dear...

Dinner went off without too much drama, but there was certainly a lot of chocolate!

My little imp

Hi

I am the chocolate queen!

Happy Easter!

Good, good, good Friday

To celebrate Good Friday, and the fact that Eleanor's cold is dissipating, our little family went down to Fisherman's Wharf for fish and chips. Eleanor didn't think much of the fish, but she loved the coleslaw and lemon wedges! I am not sure if lemons are an acquired baby taste or if that is a result of the chemo affecting her taste buds. Either way, she was really into the chips too, but only the ones doused in vinegar. Kris was so proud.

Two peas in a pod - hating the sunshine.
"Ah! Natural light! Get it off me!"

Adjusting...

Fisherman's Wharf has a bunch of resident seals. It turns out, I am the one in our family who likes them the most.

Especially the lazy ones

So lazy!

Ahhh...

Waiting for our lunch

Chips were a hit!

Happy Easter to those you celebrating!

Clinic Tuesday

It's not even noon, and already it has been a huge day! We were out at the clinic today for her repeat blood draw, and we threw in an X-ray just for fun. She just needed an image of her hand to test her bone age. This will give endocrine the info they need about her suspected pubescent state. As for the blood work, I am thrilled to say it went SO MUCH BETTER! We kept her swaddled with one arm free and I played some Raffi on my phone. The tech was great and Eleanor stayed pretty calm after her initial freak out. She does not like to be restrained, but she tolerated the whole thing pretty well, even though she was beyond ready for a nap. I was convinced after the last attempt that she had bad veins and we would never get blood, but it's just not true! Blood springs eternal!!

Another great result of today was that we got her Mitotane levels back from Montreal. Mitotane levels are supposed to be monitored closely in ACC patients, but this lab in Montreal is the only place that processes them in Canada so it has been extremely tricky to execute. First off, no one knew about this lab until last month - they sent previous samples to the Mayo Clinic, but never heard back - and second of all, none of Eleanor's doctors or nurses speak French! They have now sorted it out, and the lab faxed through her results from last month. I was shocked to hear that they actually got them, these elusive levels that are so important but so difficult to obtain. But lo and behold, we got them! She's sitting at 13.4, which is a weensy bit shy of the therapeutic dose of 14. We are going to wait for the next test to get back before we attempt to up her dose. It seems to be working, so fingers crossed it is in the proper range!

We aren't scheduled to go back into the oncology clinic for another month, which is crazy, but good. It's where we should be. We go in to see endocrine next week, but that will be the last time for awhile as well. There will probably be some emergency that needs immediate attention (there always is!), but *touch wood* we will be spending way less time in clinic, and way more time living. That gives me tons of time to bury my head in the sand before our trip back to Children's in May! Hooray for denial!!

Hooray! Eleanor? Can you say hooray, too? No? Maybe next time. Shhhhhhhh...

Spring Happens

*I feel the need to apologize for this post. It has little to nothing to do with Eleanor and everything to do with me. It's what Kris and I like to call "Chatty Chatty Self-Self" talk.

The weather finally climbed into double digits today. Spring is all around and it's nothing short of magic. We are spoiled in Victoria. Spring is a blessing here. It starts in February and continues clear into June.

Magnolia trees are my favourite. In Toronto, spring drags its heels. The weather gets warmer, but rather than the scent of hyacinth and heather filling the air, it just smells of garbage defrosting. The snow melts and the world is brown, brown, brown. The trees bloom late, so the first colour that emerges is from the magnolia tree. The tree itself is understated; it's knobbly and naked without flowers or leaves. It could be any tree. But then the delicate blooms appear in soft white or electric pink and the tree comes to life! The petals are large, but they seem so fragile against the still-chilly spring air. They are resilient and defiant of winter even without their leaves and usher in the new season with their pretty flowers.

And it happens every year. Spring always comes.

I had an English teacher in middle school who loved saying that. To those who knew this teacher, you know exactly who am I talking about and you know exactly where this going. To those of you who don't, I had a very interesting English teacher in middle school. He had a lot of crazy ideas for teaching, which made him insanely popular with the students, but not so much with the staff. He resigned halfway through the school year over creative differences with the administration. It broke my juvenile heart and I led a (short-lived) student rebellion in the parking lot, complete with songs and my tie around my head. I think it lasted 15 minutes into the next period, and I was back to my mild-mannered self, but a defiant anger had been unleashed, and she was always sitting right under the surface (she still is!).

That summer, news spread that this teacher who we had cherished and idolized and had taught us so much about life and love and standing up for what you believe in and waiting for spring to come, well, he commit suicide. I remember returning to school that fall and hearing the principal talk about this man's trouble and how drugs and alcohol were involved. I folded my arms across my pre-teen chest and turned my nose up to their thoughts. I looked mad, but I wasn't. I think I had made peace with my feelings long before that assembly. As much as I thought I loved him, I didn't. My respect for him had been dwindling for a long time, and suicide was not cool with me. It didn't sit right.

I'm not sure why I bring this up, my pseudo Dead Poets Society. I suppose because it happened. Shit happens in this life. My shit (save my daughter's life threatening cancer) is pretty insignificant. Days turn to weeks turn to months turn to years. Things change, but not really. I guess that's why spring seems more beautiful this year. Shit happened this year. I needed spring to come. I needed pretty flowers and ducklings and warm spring sunshine. I'm really glad that my landlord has a gardener come in to brighten the small yard out my window. It helps. Small things help.