Bye Bye 2011

I've always loved the time between my birthday and New Years. I get three full weeks to reflect on the past year and think about the year ahead. I'm not big on resolutions, but I do like looking forward. In the past four or five years, I've strived to make each year bigger and better than the one before it. It went a little like this...

2007: got an agent, landed a TV role, got engaged
2008: got married
2009: got a dog, changed careers, ran a marathon
2010: moved cross country, got promoted, had a baby
2011: watched said baby battle cancer

So tonight I am saying goodbye to the worst year of my life. See ya later, it's been a slice. A slice laced with arsenic. I wrote a long post that got pretty morose, so I replacing it with the good. And there is a lot of good.

We finished the year with a lovely day. Eleanor and I met up with her cousins and her cousins' cousins and went for a walk along the beach. It was crazy to watch Bea and Jack and their cousins (on my sister-in-law's side) wander down the beach, looking so grown up. When did they get so big? Jack is almost 8 years old. How did that happen? Anyway, the big kids wandered and explored and climbed on the Cadborosaurus, and the dogs wrestled and swam and I watched with Eleanor strapped to my chest. We had a family dinner of spaghetti and the baby ate some, but was clearly exhausted from her day out and skipping her afternoon nap. She went to bed and Kris and I are watching old episodes of The Extras and eating cookies. We have a bottle of champagne chilling for midnight, but I suspect we will be opening it early. It's already past my bedtime! It's been a good day and tomorrow should be another one.

I feel blessed with days like today. I am very lucky to have my family around and a beautiful beach to visit and love to come home to. When I look back at this year, I feel incredibly sad, but there were some amazing moments. I remember when Eleanor first smiled after surgery. She was back in ICU after a short stint up on the wards and was back there for chemo. Her smile was radiating out of her whole being, and I responded the only way I can when she does something amazing - I open my mouth really wide and raise my eyebrows, like I could absorb all her happiness into me through my face.

See? Super HAPPY birthday!!

And there have been so many moments like that since her tumor was removed. These past six+ months have been incredibly hard, but it has been such a joy getting to know my baby and watching her grow. In so many ways, my life is great. But in one big, crappy way, it is a living nightmare.

I guess for the year ahead, I want focus on the positives in my life, and hold onto them with everything I have. I think that's probably the best I can do. I think it's the best we can all do.

Happy New Year!

Blue Christmas

We are home. We survived Christmas. And we are exhausted.

It's been a crazy ride over the past two weeks. Emotionally, Kris and I are spent. There was too much reality in our last little hospital stay. We saw what the future holds if we stay in Victoria. The hospital staff are really nice and they aim to please, but they are nervous and clueless about oncology patients. We were warned about this at Children's, but it was a shock to have to tell the ER nurse "no" repeatedly to a rectal temperature check. No means no! By the end of our stay, I was itching to get out of there. In the pediatric ward, the nurses have four or five patients each (as opposed to two at Children's) and they all have viruses or some other scary bug. Definitely not cool for my immune compromised baby. The pediatrician agreed and got us out of there pretty quickly.

The days leading up to Christmas were sad. I got a letter from the government telling me my EI claim had been rejected. Apparently you can't piggy-back them? I didn't think my mat leave would interfere, but apparently it does. Kris and I shut ourselves in the house and tried to get in the spirit of things. We watched Christmas movies, listened to Christmas music and decorated every inch of our house. We put Eleanor in her gingerbread jammies and waited for the blues to lift. On Christmas eve we went in for blood work (a condition of our early discharge) which dampened the mood further, so when Eleanor pulled out her NG tube at 9:30 that night, we were ready to throw in the towel. Screw Christmas and the horse it rode in on. However, things started to look up when we were in and out of the hospital in ten minutes with minimal fussing. I couldn't believe our luck. Last time we had to do that, it took almost an hour.

Christmas morning was nice - Kris and I bought a few small things for each other, and Eleanor played happily with her bounty. We did a Christmas lunch over at my parents and had a lovely time. We enjoyed a rousing round of Yankee Swap, or Christmas Swiping, as the kids called it. I suppose it is not totally in the spirit of the holidays to steal presents from one another, but boy oh boy, was it ever funny! My mum had done a huge feast that everyone enjoyed, including Eleanor! We sat her up at the table and she ate everything! Turkey, potatos, celery in white sauce, turnips, salmon (for the pescatarian - me). It was like a Christmas miracle. Every other time I have fed her meat, she would throw up violently, and now she puts it back like her dad! She is now demanding food all the time, and her double chin is reemerging, but in a good way. This has lifted our spirits considerably, especially as we count down the hours til we return for round 6.

But wait! We're not going back tomorrow! In light of our impromptu ICU stay, we have requested to spend New Years at home. So we are now going back next Wednesday! I am quite excited about this extra little time. Eleanor is so much fun right now. She's babbling away (especially while eating; her manners are terrible!) and she's becoming really mobile. She's reaching and rolling with no problem, except for getting tangled in her NG tube. I keep hoping she'll pick herself up and start crawling, but she is still pretty weak for that. I just love who she is becoming. She's got so much more courage these days, it's hard to believe she was so sick just ten days ago. The happier she is, the better Kris and I are.

I hope you all had a lovely holiday season, and may all our New Years dreams come true!

Heavy Heart

Tonight I am praying for the family next to us who just lost their son. I am so sad for them.

Abide with me; fast falls the eventide;
The darkness deepens; Lord, with me abide;
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me.

Swift to its close ebbs out life’s little day;
Earth’s joys grow dim, its glories pass away;
Change and decay in all around I see—
O Thou who changest not, abide with me.

I need Thy presence every passing hour;
What but Thy grace can foil the tempter’s pow’r?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.

I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness;
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.

Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies;
Heav’n’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.

PICU island-style

Ugh.

That pretty much sums up the last 36 hours, but for more details, keep reading...

In the wee early hours of Friday morning, Eleanor started pooping a lot. Because she had been particularly difficult to put down, I didn't think much of it; I just changed her diaper and went back to sleep. Every hour she would let out a little moan, I would change her diaper and go back to sleep. I was aware of how heavy they were, but she sometimes has big poops. No big deal. I did notice around 5:30am she looked really sleepy while I changed her, but I figure the events of the night were tiring and she was just sleepy. Kris came and got her around 7:30 and was planning on taking her for a walk so I could sleep. I rolled over and excitedly went back to sleep. SLEEP!

Ten minutes later he came back in a panic. "We have to go the hospital - she won't sit up". I'm not going to lie, Kris says this kind of stuff a lot, and I have to figure out a way to calm him down and let him know everything is going to be fine, but this was different. I got up, got dressed and away we went. I phoned the oncology clinic to let them know we were coming, and that Eleanor wasn't well. We rushed out there. By the time we reached the hospital, she was completely lifeless in Kris's arms and was having trouble responding to his voice. Her colour was awful and her skin was very mottled. The staff in the clinic were amazing. They took one look at her and said, "She has to go to Emerg" and showed us the way down. They were incredible. Going to Emergency sucks. It is slow and tiring and terrifying, but when you show up with your own nurse AND doctor, you get results! She was immediately taken into a room and they began a bolus of IV fluid and her emergency stress dose of hydro cortisone (which we somehow remembered to bring. Go Team Goudie!). They took her temperature and it was 38 degrees. I was stunned because she has never had a temperature that wasn't a neutropenic fever. Her blood counts were great two days prior - how could she have a fever? I kept begging them to give her Tylenol but she needed blood work done first. In the fifteen minutes or so that we waited for blood cultures, her temp climbed to 39.5. Poor little bear was so out of it. She was lying on her sleeper, completely exposed and looking so vulnerable. She could only roll her head a little from left to right. When they pricked her finger for blood gas, she barely even flinched. Where was my roaring, angry animal? She had been replaced with the sickest little baby.

Once they got some antibiotics and Tylenol and ibuprofen into her, she started to perk up, and we were out of Emergency and up to the PICU in about an hour. As the day progressed she got better and better, and by about 4pm she was back to about 90%. I decided she was too "good" to be left alone for the night, so I opted to stay in PICU family room. If she had been more out of it, I would have gone home, but she was far too aware of what was going on to be left with the nurses! She was really sleepy all evening, but couldn't get to sleep, thanks to all the steroids she was getting all day. At about 8pm, our nurse brought in a bed for us to sleep together. This usually works, but God almighty she was ANGRY all night long! I think a lot of it was to do with hunger as well. Steroids make you hungry, but we couldn't feed her until her sodium levels came down.

Oh right. Her sodium levels were through the roof.

We are still unsure of why this all happened, but basically what we think is that Eleanor got some kind of tummy bug that caused the diarrhea, which caused her to lose a lot of fluids. Your adrenal glands help regulate sodium levels in your body, but we have been systematically shutting down her remaining adrenal gland, so she gets a lot of steroid supplements to do the job instead. We also give her extra salt in her feed. Somewhere along the line, this got all out of whack, and combined with the loss of fluid from the diarrhea, it sent poor Eleanor into Acute Adrenal Crisis. This is my thinking anyway. They aren't entirely sure WHY it happened, so we are just treating what DID happen.

She will stay in PICU until her sodium levels chill out. It dropped quite a bit overnight, but they don't want it to drop too quickly. I am hoping we will be out on Monday, but I have no idea. So far there is no talk of going back to Children's, which is nice. We would really love to have Christmas at home with our family, but we really just have to take it one day at a time. I am taking today off. I had an awful night with a hungry, angry baby so Kris is looking after her today, and I will go back tonight. I am looking forward to a big nap and a shower so I can feel human again. It's been quite a day.

Thank you all for your support and well wishes. She is doing much better and I am hoping there is no lasting damage from the fever/fluid loss.

Oh, and this is what Eleanor looks like when I am trying to get her to sleep...

I am ANGRY!

And this is when Kris does it...

Sleep, sleep, sleep...

Please Stand By.... Technical Difficulties...

I really wanted to post photos from Eleanor's birthday, but I am having trouble with Photo Stream. It seems my favourite software update from iCloud is letting me down. It only "streams" if I am on the hospital network, so I have no new photos. Very frustrating. Rest assured that the little party was a huge success, and Kris made sure all the kids and parents on the ward had cake and pizza. Apparently it doesn't matter what your age, everyone loves ice cream cake!

On Monday we left the hospital. There were many tears shed, and not all of them were mine or Smelly's. We are home for 2+ weeks, but it still felt like we were leaving forever. I have embraced my institutionalisation-ness and have come to think of Eleanor's doctors and nurses and social workers and physio therapists and occupational therapists and volunteers and cleaning staff and porters as family. I've spent so much time with these people over the last six months it pains me to think of a time when I won't see them every day. The more time we get at home, the easier it will become, but it's still a scary thought.

But we are home now and it has been great. We are looking forward to a family Christmas and hopefully some lovely memories. Eleanor is fast perfecting her lunging face plant, and it feels like she is very close to crawling. She is definitely showing interest in moving and she is getting much stronger. Hopefully she will continue to lunge and NOT face plant!

In the mean time, there is lots of holiday cheer to celebrate in, and I hope you are all enjoying time with your loved ones!

Happy Holidays!

Birthday

Full moon + Lunar eclipse + Eleanor's first birthday + my birthday + six-month anniversary of Eleanor's diagnosis + my "lady" times = one fucking emotional day.

But it was pretty awesome. We had a great party. There were party hats. I love party hats. And ice cream cake, the number two reason I had children (the first is singing loudly like it's my job). I will post more tomorrow, and hopefully I will have some good photos too. Lots of lovely people in our lives.

So blessed.

First Comes Love

To my daughter on her birthday,

One year ago today, you were born. One year ago - it seems like both a fraction of second and an eternity ago. It was drizzling at 3:30am as your father and I climbed into a taxi and headed to the hospital. I was wearing my fuzzy pink bathrobe under my coat and my sheepskin slippers, and your dad carried a bag full of clothes and nonsense that that never saw the light of day in the hospital. I must admit I thought little of you for the eight or so hours I laboured. My brain couldn't correlate the pain with another being sharing my body. It just felt pain. It wasn't until I started to push that I began to think of you. I thought of the kicks and rolls in my belly and how your nose matched mine on my 20 week ultrasound. I thought about your eyes. Would they be blue like your dad's? Mostly though, I just wanted to hold you. I wanted you where I could see you.

My memories of you emerging into the world are skewed. My mum (your granny) was able to film it beautifully (ie: not graphically. Very PG). In the video you were immediately placed on my chest, only your umbilical cord was incredibly short, so you ended up on my belly. I cradled my arms around you and said, "hi baby". So deep and insightful, I know! It's all a bit hazy in my mind. My first clear memory of you, YOU in all your awesome baby glory, was when our eyes first met. It was after they had cleaned you up and I reached for you, and in that instant, you knew me. All 7 pounds, 5 ounces of you KNEW me. They tell you that your baby can recognise your voice, but I no idea how powerful a look could be. It was like love at first sight, but the truth is, dear, sweet Eleanor, is that I have loved you long before I met you.

I loved you from the first second I saw your dad as a life partner. I loved you when I peed on three Dollar Store pregnancy tests that all came back negative. I knew they were wrong. I knew you were there, and I loved you even then. I loved you when the word "pregnant" came up on the fancy digital test. I was hooked when I saw that tiny flicker of your heart on my early ultrasound. I loved you when you came to me in a dream and revealed you were a girl (and that poo can go all the way to one's neck - thanks for the heads up!). I loved you when we saw you lounging at 20 weeks, with all your beautiful bones on display. I loved you when you decided you only wanted to kick one spot, high up underneath my ribs. If I concentrate, I can still feel you hammering away there. I loved you then, and I love you now.

I have heard it said that giving birth is like seeing your heart jump out of your body and start walking around. This seems especially true for you. While I don't think we look alike, you have inherited all my features. I could see from the moment you were born, what with a head of dark, dark hair, big almond eyes and a ski-jump nose that you were undeniably my child. As you've grown, you are becoming your own little person. Your little down turned mouth always makes you look a little grouchy, a little bitchy, a little angry. It just relaxes that way, and while this could be seen as a fault, it just makes your smile that much more dramatic. Your whole face changes when you smile. Your whole BODY changes when you smile. You vibrate. Your joyous energy is palpable. You've taken to putting your hands on your knees and throwing your head back when you smile, flashing your three teeth (two top front, and bottom left - aka Ol' Chomper) to whoever is delighting you. Your smile is magic, my little bear.

During this first year of your life, you have been completely dependent on me and your dad. Often at night I will bring you into my bed and try to comfort you as best I can. Lately though, I have been getting into YOUR bed and having you stroke MY arm, and it feels almost like the roles are reversed. Perhaps we are also dependent on you. Love is a two-way street and your love keeps us unbelievably happy. Our hearts are constantly growing to accommodate all this love we have for you, and sometimes it hurts. Sometimes we need to feel your soft hand on our cheeks to ease the pain. Sometimes we need to hear you chuckle over a bouncing balloon to help the stretching of heart muscles. It is truly amazing how big you have made my heart.

I love how you are instantly calmed in my arms. I love how you instantly calm me.

It wasn't puppy love I felt one year ago. It was a deep-seated, old love, a kindred spirit kind of love that I felt. You were always there, so it was the most natural thing in the world to love you, baby girl.

Happy Birthday, birthday buddy. I look forward to many more with you.

Love you always,
Mum

Eleanor's Weekend (in pics)

We had a more promising conversation with Eleanor's oncologist this weekend. It wasn't new news, but it was positive, and gave us a lot of hope in our hearts. As one of the fellows (who has been following her since that first fateful day in June) said to us, "let her continue rewriting text books. She has been doing it for the past six months".

So with faces and hearts slightly upturned to the cool winter sunshine, I will continue my regular scheduled programming of making fun of my daughter, "Cribs"-style.

Welcome to my crib! That's my girl Jenny and my old man hanging out with some of 'da bears. We go way back, me and my crew. Stick around to see how we roll.

Friday is always a happening night in the ward. Celeb spottings are  frequent.

Hey! It's the dudes from Happy Feet!

My boy Rocky likes to chill in 'da crib

What up, Rocky?

Ahh the playroom. I have ALL the toys in the playroom, even if my favourite ones are the ones attached me.

Me and my old man in the playroom. 

Too much love, man!

WAY too much!

Sometimes I like to put on some nice threads to impress the boys...

Sometimes they don't notice.

Check out the sweet rims on my ride! Love hitting the open road.

At the end of the day, I like to just put up my feet and watch some Baby Einstein. Dad likes it too.

Thanks for visiting me here at my crib on 'Da Crib Avenue!

Decisions

I keep opening up Blogger and thinking of things to write. I start posts, and don't like where they are going, so I close the browser. I think of a new angle, a new topic and try again. Nothing seems to be getting past a few sentences. I wanted to write tonight about how cute Eleanor was going to sleep. How she fought me for hours with her smiles and wiggles. How I climbed into her crib to see if she would settle. How she passed out the second I picked her up and held her next to my heart. But it all seems a bit weird. I don't know what to write anymore, and I am not sure if I want to write it here.

Decisions.

This is Eleanor deciding to take over the whole bed.

I had very clear intentions when I started: I wanted to keep a record for her to read when she got big; I wanted to keep family members (near and far) abreast of her situation, because Lord knows I rarely answer my phone or texts; I wanted an outlet to express myself creatively during this time and this medium always makes me check myself. I mean, I can't write poems about unicorns and rainbows if people are reading it, right? But now I feel my intentions getting blurred. The more I write, the more it becomes a stream-of-consciousness that doesn't make sense or go anywhere good. I feel increasingly private. So I am left pondering what do I do now?


I could always write privately and then decide later if I want to post them. It would give you a whole afternoon of distraction at work. You'd be all like, "Oh, I should get this and that done. Work, work, work, I am very important and busy. Hmm let me just check Kate's blog for any updates... Whhhhhaaaaaa?!??!? 25 posts?!?!? Screw work! I am going to read this instead!"

Or I could just muddle through and document my world going dark... See!? There is that stream-of-consciousness nonsense! Where was I going with that thought? IT DOESN'T HELP ANYTHING!!

I guess I haven't thought this all the way through. I thought maybe by the time I had finished I would know the answer.

Ruminate. Think. Tomorrow.

Thanks

I just wanted to say thanks for all the words of support and encouragement that have been pouring in over the last few days. I have been reading your messages, emails, texts, comments etc. and both Kris and I truly appreciate it. I am finding it difficult to respond to everyone individually, as I still don't know what to say, so I thought I would take this opportunity in this medium to say, from the bottom of my heart, thank you.

After Eleanor's counts recover from this round we will be heading home for an extended break over the holidays. We will come back in the new year for a final round and then come up with a new strategy. Kris and I will be spending much of our time searching out alternatives for her therapy. I think a few more opinions couldn't hurt, and if nothing else, it will offer piece of mind.

This isn't over. We aren't done yet, however I don't feel like fighting anymore. Fighting cancer is like engaging in guerilla warfare, or the war on terror. The enemy is too elusive and doesn't fight by your rules. There are no rules in cancer. So now we just hang on and experience all that is happening. I guess I was doing that all along. I like to think I am in the trenches with her, but she is the one fighting, and she is far from finished. Bless her fierce little(big) heart.

Thanks again.

No Words

I've had words bouncing around in my head for the past 36 hours. Words and thoughts and feelings and when I open my mouth - nothing comes out. I'm a bit stumped, and quite unsure how to proceed, so bear with me, and I will do my best to bare with you (emotionally, not physically).

No Words

Kris often uses the expression "No words" when I send him photos of Eleanor looking amazing, or doing something cute or just generally being awesome. He claims that this was the first thing said when the astronauts landed on the moon. I thought it was when they saw the first earthrise from the dark side of the moon, but when I looked it up, it was not said on either occasion. I think our memories are stemming from a clever ad that has forever been implanted in our heads by some corporate conglomerate, like Nike or Apple. I really want to link this quote to something profound, but for my intents and purposes, it will have to stand on its own.

I have no words.

Eleanor's oncologist wants to stop chemo after this round. He thinks the 7 rounds of platinum drugs (carboplatin and cisplatin) is too much for a baby, especially if she is not responding. Her hearing and kidney function are indicators that her body is not tolerating it well and there has been very little change in the lung mets. Apparently we have gotten to the point that we are causing her more harm than good, and it's time to stop.

What does this mean? Our options are pretty slim. They are unwilling to "cherry pick" her lungs because the nodes are too spread out. There are a couple of drugs that aren't frontline drugs that she could try, but there is very little chance they will do anything. They will scan her again after this round to see if anything has changed, and I am hoping they will do a biopsy to see if these nodes are active or not. They could be scar tissue, but nobody is really deluding themselves with that possibility.

My daughter will always have cancer. She won't go into remission. She won't live a long and healthy life.

A spouse who outlives their partner is a widow(er). A child who outlives their parents is an orphan. There are no words for a parent who outlives their child.

Yup.

No words.

Love you so much, little bear

Bedtime

Eleanor is becoming her own little person. The further she gets away from her last round of chemo, the more her personality shines through, the more her idiosyncrasies show and the more we realize who she is.

She is a jerk.

I like to think of it as the golden doodle rule. The golden doodle is a dog created through the simplest principle: take two dogs with good qualities, mix them together and they will make a super-dog. It will have the personality and good looks of a lab, and the brains and non-shedding coat of a poodle, all in a 50lb package. Sounds great on paper, but what you actually get is a giant, stupid, often ill-tempered and odd looking dog. And the non-shedding aspect (the main draw for this type of dog) is just as variable as any of these other traits.

When two people get together and decide to make babies, they delude themselves into thinking that their babies will inherit the best of them. We certainly did. Eleanor was supposed to have Kris's hair and Germanic sensibilities and my eye-shape. Instead, she inherited Kris's fussiness and Restless Leg Syndrome and my pig-headedness and general douchebaggery.

Oh Em Gee she is a handful.

It has taken us (on average) two hours to get her to sleep every night. The caterwauling and shrieking starts around 5pm, and we try to get her into bed before the actual tears start to flow. She sleeps in our bed because you can't sleep train a baby with so many dangerous tubes coming out of her body, and when she gets angry, you KNOW she's going to be yanking on one of them! So she is fully indulged and in our marital bed. Once she gets into bed, she takes F.O.R.E.V.E.R to actually to get to sleep. Tonight was no exception. She flailed about for an hour until I finally pulled her onto my chest. Her fatigue and general weakness made her unable to resist my shushing and I could feel her little body start to yield. Yes! Gravity for the win! I slid her back down onto the bed and pulled her in close. My heart melted a little when her quick breaths started to slow down, and it broke completely when her big, dark, not-brown eyes opened wide as a last-ditch attempt to stay awake. They hovered there for a second - open and alert - before slowly closing for the day. Ah, evolution. It took everything in my power to not smother her in kisses.

I lay there for a moment with her wrapped up in my arms, and contemplated my escape. Don't wake the beast.

Her body twitched and she let out a little sigh. Puppy dog dreams of chasing rabbits.

My heartbeat next to hers and all her baby glory.

What was I saying?

Right. I've got to get away.

Where was I going? And in what hurry?

I'm here.

Let sleeping dogs lie.

Fun with Apples and Atia

I sat down to enjoy an apple after our morning walk

Eleanor decided she wanted some too

Atia got jealous

Okay, Atia. I see you!

Hi puppy!

Hmmm... awkward

How about your own piece?

And one for the puppy

Ah! I got it...

Problem solved!

Ever since Atia became a raw food/no kibble dog, she insists that I share my fruit with her. She really likes apples. Apparently so does someone else. It's ironic because not only does Kris HATE when I eat apples, but he is also allergic. Poor Kris had to withstand the above open-mouthed, apple-eating fiasco. And being married to that homeless looking chick. Poor, poor Kris...

Oh, right. THAT cancer.

Eleanor had a very easy round of chemo. She did not throw up (much), she did not spike fevers. She did not need a continuous morphine infusion. This is essentially a good thing, but it left me filled with dread. The only other time she had an "easy" round, the cancer spread. Science will tell you that the two are not mutually exclusive, and I appreciate that, but it offers me little comfort given our past situation.

Eleanor had her scans last Tuesday. I have been sitting on the results for almost a full week, quite unsure what to do with them. Her attending GP was very excited to tell me that the cancer had not spread or grown. It also didn't look much improved from the last set of scans. She was pleased about this news - this is good news! - and I suppose it is. It isn't bad news, it just isn't the news I was hoping for. The docs are taking her case back to Tumor Board to discuss her options. This is exciting for me. I like that all the brains in the hospital come together to put forward their ideas, and there are many options in front of us yet. We are not looking at this as defeat or retreat, but a recalculation.

So we packed our bags and have been shipped home to await further instruction. Tumor Board is on Thursday and I have asked to be contacted Friday with a game plan for piece of mind. I do not want to drive all the way back to the hospital on Monday with my daughter's uncertain fate bouncing around in my head. It's not safe. Especially if the weather is poor. I'm a pretty terrible driver without all that stress, and I could be a hazard to all who get in my way!

Our time at home has been pretty good. E is a little fussier than usual. She hates to be left alone, even for a second, and she seems to be uncomfortable a lot of the time. She is cutting two new chompers (well, top-left is through and top-right is close behind) which I think is part of it. I have also been frequenting ACC (adrenal cortical carcinoma) message boards to hear other people's experiences. I think Kris thinks I am nuts, and I think he might be right. While it's interesting to get more info on different drugs and treatments and the ethics of genetic testing vs. insurance in the States (that's a whole other crazy for another blog. Wow.), it's really hard to hear how awful people feel when they are undergoing treatment. E can't tell us her back hurts, or her hips hurt, or if she is dizzy or off-balance or nauseous. This brings me an immense amount of sadness. Maybe she doesn't have crazy separation anxiety - maybe she feels terrible and I help distract her from it. It's easy to help her when her counts get low and she becomes febrile and throws up the mucous lining of her gut because it's easy to see. It's not so easy when she is technically "fine" and has no obvious symptoms. I guess that is why they prescribed her a bottle of oral morphine. Poor little bear.

But on a happier note, SANTA is coming to Mothering Touch this Friday! That's right! From 2:00 til 4:00 on Friday November 25th, you can come get your photo taken with Jolly Old St. Nick himself. All proceeds from the photo shoot will be generously donated to Eleanor. WE LOVE MOTHERING TOUCH!!! Find out more here. Hope to see you Friday!

Home and Husky Kisses

We arrived back in Victoria today, and we are here for a full ten days. TEN! They have jimmied our chemo schedule so we can be home for Christmas, and it means we get some extra time now. Woo hoo! Eleanor and I pulled up to our little house and daddy was waiting in the rain, like a John Cusack movie. So romantic. Atia was clammering all over the place to get me to love up on her. She's so delicious. I forgot how soft her fur is; how knowing her eyes are; how much her neck loves to be scratched.

And I have had two glasses of wine. This is a lot for me.

Home is the best. I love everything about being home - even the cats fighting outside my window. And how cute is a little baby in a big bed(question mark - my keyboard is messed and I can't find the question mark, which also might be a factor of too much wine). So cute. Unbelievably cute. In fact, I am going to look at her again, she is that cute.

Oh, sweet Lord, she is bald.

This last round really sapped her hair, and she is a bona fide cancer baby now. Sigh. Bye, bye eyebrows. It was fun while it lasted.

More wine(question mark)

More wine!

Play Date

Eleanor had a special play date today.

We were cuddling in bed, getting ready for a nap when Elaine, her attending physician came in. We were chatting about TPN and feeds and continuous ondansetron (the usual) when "Pop Goes The Weasel" started spontaneously playing. Elaine frowned at where the sound was coming from.

"Is that a cell phone?"

"No. It's that ladybug toy. Kris brought it in from the playroom this morning. Apparently Eleanor likes it."

Apparently someone else liked it, too.

Elaine regarded me with careful eyes. "Are you frightened?"

Tears were prickling in my eyes. I looked up to stop them from falling only to see the Snoopy balloon that Camara and Anaya gave Eleanor on Saturday.

"I'm scared of everything. A baby died this weekend, and I know Eleanor is on a different path, but I still get scared. I went down to ICU to see her before she went, and it was really hard. I hadn't been down there since Eleanor was touch-and-go and I didn't like it."

"Hmmm. It's almost like post-traumatic stress..."

Elaine was cut off by the endocrine team coming in to do their daily check-in. Yes, steroids. I know, she looks great. Testosterone levels. DHEAS levels. Positive, positive, positive. Kris entered and jumped into the conversation. Emotion and reflection started to ooze into the room when once again...

All around the mulberry bush, the monkey chased the weasel...


Elaine picked up the toy. "I'll put this away" and she disappeared from the room with the happy melody following her.

I've spoken of these toys before and how they spontaneously come to life. This is the third time it has happened and they spook me because they always happen after someone dies and they are all toys Eleanor likes. While I love the idea of baby ghosts sticking around like little guardian angels watching over the kids in treatment, there is another part of me that wonders why they seem to be focused on Eleanor. I feel like  they are paving the way for her, showing her the ropes. And I don't like that. I don't like thinking that Eleanor will be one of these cherubs running amok in the playroom. I want her here, with me, alive, in the flesh for all time.

Of course, it is entirely probable that these are chance occurrences of faulty toys and it is nothing out of the ordinary.

Or...

Or maybe baby Anaya toddled her way into our room, climbed up on the lazy boy and started pressing buttons on the ladybug toy. Maybe she wanted to come say hi and play like a regular toddler. Maybe she slid off the leather seat and ran after Elaine into the playroom where she could play with the trains on the train tracks, or push a baby doll in a baby doll stroller, or pour water in the waterwheel and watch it spin...

I don't know. I don't know how these spirits work. I don't know if it is one specific person, or if it is just energy or what. I do know they are friendly and respectful. If they stand too close, you can ask them to move, and they will give you room. And I know that it hurts my heart so much. I shouldn't be afraid, I shouldn't be sad, especially for Anaya. I hope wherever she is, she is happy. I hope she is completely pain free and knows how many lives she touched. I hope she knows how much she has helped me on this journey. I hope her mum and dad are at peace. I hope they use all this notoriety for good, and create something amazing in Anaya's name. I hope they find love and happiness along the road ahead.

I really hope I never have to walk the path they have trod before me.

Day 13

I have posted about Day 13 before. Day 13 is typically when Eleanor's blood counts are the lowest and she gets fevers and mucousitis and nausea and generally keeps everyone on their toes. She requires all the resources available to her and it is a tense time. This round is not like that. She is in high spirits and feeling great. Please consult the following "I eat my own diapers" photo montage as proof.

Diapers for Dorks!

The flash makes baby make funny faces

Annnnd in the mouth it goes
(These were all clean diapers.
No dirty diapers were harmed during the taking  of these photos)

While Eleanor is feeling feisty and energetic, today was a pretty miserable day. A baby who I never met, but feel in explicitly close to, died this afternoon. Her life was short and filled with pain and obstacles. She lost her sight, her ability to move and over the weekend, her ability to breathe. Her parents made the difficult decision to take her off life support and allow her soul to fly free*.

I have been trying to find the words to express how I feel about this, and I can't. All my emotions seem to be stuck in my esophagus - just below my throat. I am pushing them down with yogurt covered pretzels and episodes of Parks and Recreation (my new 30 Rock). And being silly with Eleanor and Kris. I guess I am not allowing myself to feel too much. Death is pretty overwhelming. I feel like pretzels and comedy is a safe place for me to be. And my brain seems to have melted and I am not making much sense. And the spell check on this browser is driving me mental. It is telling me I spelt "diapers" wrong and it is making me crazy. It only offers me the singular version. Can you really not pluralize that word? There can only be one diaper? Ever? Anywhere?

Oh, weird. All the squiggly red lines disappeared after I wrote that. It's like the computer was listening. Yikes. I am not okay right now. More Parks and Rec. And then prayers for Baby Anaya and her family left on earth. And then sleep. Hopefully some rest will help my heart process these emotions.

*Context for my ramblings can be found at her mama's blog or her Facebook page.

Development!

Eleanor's development is delayed. We were warned of this when we first arrived here, and accepted it with no uncertain terms. Well, save a few. I suppose I understood "development delays" to mean "gross motor" development delays, which she already had before coming into hospital. This I can deal with - no walking or crawling until she gets better. Sounds great. What I didn't understand is the delay on everything else. Somewhere in my brain I had decided that because she was delayed physically, all the fine motor and speech and intellectual aspects would be that much better. You know, like a blind person who has incredible hearing. Turns out, it doesn't work that way. Hospitals give babies developmental delays. Period.

Naturally this leaves me only one choice. I will now go totally bonkers a la "Toddlers and Tiaras" and force my kid to excel in something completely irrelevant. So in true overbearing mummy fashion, I give you Eleanor's Amazing Development Catch-Up Show!!

It all started with some high-chair time...

Mummy was eating an apple, so Baby Genius decided she could too.

Have you ever seen such a thing in your life? An 11 month old baby eating a Granny Smith apple? Amazing!

(Nope. She was licking it. Chemo babies love sweet things and they love sour things.)

Let's move on to a more "normal" baby activity. Playing with and eating Cheerios!

I have all the Cheerios because I am an advanced creature.

Look at that brain working inside her giant brain-box...

Pincer grasp! I succeeded! I have clearly raised a child genius.

Eleanor then proceeded to put the Cheerio in her mouth. I was standing by in case she gagged, but she didn't! She chomped away on it and worked it on each side of her mouth. Every time it came by her lips, I was poised to swipe it out, but she happily went on "eating". And then she threw up. Violently. And afterwards she looked like this: 

I know. Mummy is worse than Hitler.

Alright, what about a sippy cup? Big girls drink out of sippy cups, so clearly Baby Genius can, too.

Coming in for a landing!

Say "AHHHH!!!"

What can I say? My child is a genius.

She's the cutest!
(She is also teething. This "drinking" is actually just her chomping on the spout.
No water was harmed during the taking of these photos)

So I am hanging up my hat and saying, you eat when you feel like eating. You drink out of whatever cup you feel like and if you're not ready, you still have your "nose hose". You have reached the developmental milestone of kicking cancer's ass. You don't have to be a genius to be the toughest broad I know. I love you, baby girl and I think you are incredible.

I also love iCloud and its Photo Stream. It makes it so easy to post photos, which is why there has been an influx of photos lately. I might get a bit carried away. I hope you don't mind.

What's in a name?

Eleanor and I have been co-sleeping again. We gave it up when she was four months old and I couldn't take the all-night nurse-a-thon. Four months meant she was a big girl, and big girls can sleep in their own bed. Now she is almost 11 months old, and we have come full circle. I can't take the all-night stand-over-the-crib-arm-hug-a-thon, so she is back in my bed. This has worked well for the past week (look at how cute we are!), but it means that typing blog posts in bed is impossible. I pass the time by reading blogs instead.

I follow a couple of blogs and all of them have a similar theme: babies. Some of them are sick, some of them are healthy, some of them are runners but they are all mothers of babies. This one particular post about naming babies had me reeling. This woman has chosen names for babies that I think are horrendous. She epitomizes everything that is wrong with L.A hipsters having babies young "while it's still cool" and living a lifestyle that makes me green with envy. That is, until I read this post about WHY she named her babies what she did.

Her twin girls are called Boheme and Reverie. Ugh. Bo and Rev. How awful, right? But she has them both backed by songs and poignant moments with her husband and beautiful quotes from Longfellow and I was sold. Those kids are going to love their names when they can explain how they came to be called them. What gets me the most is what her and her husband came to realize after they were born. Bo Rev is Beaux Reves in French, which means sweet dreams. How lovely is that? You can read the full post (along with beautiful pics of the girls) here. 

So it got me thinking, how did we get to the name Eleanor? When people ask, we usually shrug and say, "We just liked it", which is the truth, but not the full truth. It is true we liked old-fashioned names, and Eleanor was short-listed with Vivienne (deemed to butch. "Hey Viv! Get the softball gear outta the truck!") and Evelyn (pronounced eve-lyn. Too complicated when everyone would pronounce her name eh-VAH-lyn GOO-dee and she would forever be correcting them: "No, it's EVE-lyn GOW-dee". Nightmarish stuff).

But Eleanor was a front runner from the get go because of a song from a certain British invasion group - and not the one you are thinking of. We used to tell this story and everyone would go, "Yeah. The Beatles. Eleanor Rigby" and that is definitely an answer that fits, but it is not correct. It is a song by the band that didn't have "Mania" following their name, and didn't have hoards of people burning their records and then later buying them on iTunes. The Turtles wrote a song simply called "Eleanor" and the lyrics read like this: 

You've got a thing about you/ That I just can't live without you

There's no one like you, Eleanor, really

Eleanor, gee I think you're swell

And you'd really do me well

You're my pride and joy et cetera

I thought it would be pretty cool for her to have her own song, and I loved that "et cetera". It's a conjunction for all the wonderful things I feel about her, but am too lazy to write down! Perfect! People always comment on how old-fashioned it sounds, and I always reply, "If she hates it, she'll make a wonderful great-aunt one day!" I like to believe that this foresight means she will lead a long and healthy life.

And like my blogger friend, I had a post-birth naming revelation myself not too long ago. Eleanor's birth date was a very special thing for me for a number of reasons. First, she was born on her due date and second that due date happened to be my birthday. It also happens to be World Human Rights Day, which was the day chosen by the UN to observe the Universal Declarations of Human Rights. And who chaired the committee to pass such a declaration? Eleanor Roosevelt. Amazing.

Katharine: Well have you heard, but something hard of hearing:

They call me Katherine that do talk of me.

Petruchio: You lie, in faith, for you are call'd plain Kate,

And bonny Kate, and sometimes Kate the curst...

As for me, I like to think that I was named for Catherine the Great or at least Katharine from Taming of the Shrew/my favourite Cole Porter musical Kiss Me Kate... A girl can dream, no?

So, kiss me, Kate, thou lovely loon,
'Ere we start on our honeymoon.
So kiss me, Kate, darling devil devine,
For now thou shall ever be mine.

ME WANT FOOD!

I have had so many inspired ideas for posts this week and so many unreturned phone calls, and for this I am truly sorry. We are suffering from a severe case of 'roid rage. I have finally got the baby to sleep after a full day with a whopping 20 minute nap. She is sleeping in the crook of my arm, snuggled up to my chest. This would be cute if I wasn't so terrified of waking her! Kris and I are communicating by text, even though he is two feet in front of me. She is due for a set of vitals, a blood-thinner injection and a diaper change there is NO WAY she is going to sleep through all that. Steroids are making me cranky too.

Wish me luck!

Cancer Baby Playdate

Baby E and Baby L had a playdate

Monkies!

Baby L is very advanced...

She tried to teach Baby E about sharing!