Fighting The Dragons

March Madness

2012-02-28T18:18:00.001-08:00

I know it's not March yet, but I'm already warming up. I'm doing some neck rolls, I'm shaking out my arms, I'm jogging in place, maybe throw in a little one-two punch and run up the steps of the Philidelphia Museum of Art... I'm getting ready. Are you ready for me, March? 'Cause I'm coming for you! Oh yes, it.is.on!!

That stupid NG tube is coming out.

It sounds so simple, right? Just feed your damn baby. Well, we do that, and she eats pretty well. She's up a whole kilogram since we were discharged. The problem is not her eating or even her fluid requirement (800ml/day), it's the stupid Mitotane. She has to take it to live, but it's so hard to get in her.

Yo, mitotaaaaaane!!!!

It's an orphan drug and we can't get it in a kid-friendly compound. It's only effective when ingested with something high in fat and they've found that high-fat dairy products are the best. We have made the first step and switched from 4x in a 24hr period to 3x in a 12 hour period, but now the real test comes. We have to give it to her in a spoonful of yogurt. Her absolute favourite food is coconut yogurt, and then we are going to ruin in it by mixing in a crushed pill. 3 times a day! Oh, the agony! She's never going to trust me with food again.

But it's time. By the end of March that tube that has been plastered to her cheek for the past nine months will be a distant memory. It's going to take work and persistence and it's not going to easy, but I'm ready to try. Start saying your goodbyes, tube, 'cause your days are numbered.

Cue "Gonna Fly Now"

(And yes, I know "march madness" is a college basketball thing, but I'm taking creative liberties here. I'm allowed. My kid has cancer.)

New App

2012-02-27T22:15:00.001-08:00

I'm testing out the Blogger app. It seems to be okay, but I am skeptical on picture placement.

Best buds. Especially when food is involved.

Death (and other happy things)

2012-02-24T10:53:00.001-08:00

Graveyards are funny places. I was wandering through Ross Bay cemetery yesterday in attempt to let the babe sleep, when I felt myself compelled to find a certain tombstone. I had found it once before and had a good, sad laugh about it, and at that moment I had to be near it. I had to see it. I had to know it. I love the feeling of being gently pulled. "Come down this path. Look right. See? I'm here. Say hi. Go down that way. Someone else is calling you." Maybe that's crazy talk, but cemeteries do that to me.

Anyways, I found her. Eleanor Elizabeth Gray. 1900-2001. Sure, the last name is different, but this Eleanor Elizabeth lived to be 101 years old! I love that she had a long life. I hope it was happy and that she is now at peace. I hope my Eleanor Elizabeth also has a long and happy life but we never know how our lives and deaths will be. Wandering through the cemetery really hit that home. There seemed to be as many long lives as those cut short.

Today is a dear friend of my father's funeral. He passed away last week and I have been unable to write about it because it is so sad. He was my dad's first friend when we moved to Victoria 30 years ago. They bonded through rugby and his wife and my mum became close and I grew up with their kids. We played together every weekend while our dads played rugby and when they got too old for that, we played while they coached. Either way, every Saturday, rain or shine (mostly rain), we were at a rugby match. I was always a little frightened of Tom. He was really a man's man - big, tough and mean. As I grew older I realized its not him that's mean - its coaching that makes ANYONE seem mean. All that yelling and screaming from the sidelines...yikes!

When Tom was diagnosed with cancer 10 odd years ago, it was devastating blow to the entire community. He had malignant myeloma, which wouldn't give him much a chance. I remember running into his two beautiful daughters quite soon after his diagnosis, and how angry and sad they were, but how incredibly mature and composed they seemed. We were still just teenagers, but they had such a strong, fighting spirit, they seemed so much older, so much like Tom.

I don't pretend to know what his fight was like. There were times when it was awful, and I am sure he wanted to quit. 10+ years of fighting a debilitating and cruel disease, but he kept going. He is our hero, our tent pole, if you will. His fight inspires us to keep going, to go forward every day. His case was, in a lot of ways, hopeless, but he defied all the odds and survived. He lived to see his eldest daughter married. He was able to walk her down the aisle. That's pretty awesome. Every time we talk about Eleanor's future, we reference Tom. He should have died a long time ago, but he fought hard and long and was able to receive new treatments that prolonged and improved his life. I pray that the same can happen for Eleanor. I pray that his lovely family can find peace in this tough time. I pray for my dad - he was also Tom's doctor and is taking this pretty hard.

As I have written this, the sun is threatening to emerge and shine through this miserable, rainy day. If rain on your wedding day is considered bad, then sun on your funeral can only mean good. I hope it is as good as it can be, for everyone.

or: How I learned to Stop Worrying and Love the Bomb

2012-02-23T21:53:00.000-08:00

His tail catches my attention. It's long, black and rat-like. My heart seizes as I focus on his square head, lowered, but intent, and his beady eyes. As he approaches, I try to remain calm. I look for his owner, who is just far enough away to make me completely unhindered. I try to breathe, but I can't. I pull Atia in close and hold her lead tightly around the stroller handlebar. "Come on, Atia!" I try my best to be jovial, to emit confidence and hide my fear, but as the dogs come face to face, I am in full blown panic. Tears spring to my eyes, my throat tightens, my heart races.

I.just.can't.

The dog goes behind me and I push the stroller, I pull Atia, I squeeze my eyes shut. I hope we are out of the woods.

I can see it all in my mind's eye. They always go for her hind quarters. She will retaliate and be off her centre so they can go for her neck, her face, her eyes.... The sound of dogs fighting, Atia squealing, people yelling - I am the loudest. Blood will burst forth from her flesh, covering her auburn hair. Hear me! Don't hurt her! Please don't take her!

I.just.can't.

I hate that I am one of those people who think pit bull bans are a good thing, but I am terrified of them. I want to love all dogs and blame the owners, but I have been burned too many times by bad dogs with good owners. Atia nearly lost her eye to a pit bull, and in the climate of my life right now, I.just.can't. I see them in the park, running free, and every time it plays out like the above: shaky, dizzying, terrifying.

It's not just dogs that give me anxiety. So many things keep popping up and threatening my little family. I keep a tight leash and try to stay calm, but sometimes it gets out of my control. I feel terrible about the closed door that friends and family keep knocking on and I keep firmly shut. Sometimes it gets too hard and I.just.can't.

It's getting better, though. It's getting better all the time.

We drink from sippy cups now.

(and yes, I am going to see someone about the anxiety)

Laughter may be the best medicine

2012-02-17T22:04:00.001-08:00

I'd be lying if I said this past week has been easy. It's been hard and terrifying and overwhelming. My husband and my family have all been incredible in keeping my spirits up, but nothing will make you feel as good as baby giggles. Check these out...

http://www.youtube.com/watch?v=YtFqW-L5xv0&feature=youtube_gdata_player

For Beth

2012-02-17T12:44:00.000-08:00

Eleanor is happily starting to feed herself. After a week+ of only eating white food, she has started eating real food again. Yay!

Trying out her right hand

Also using her left

Busy, busy, busy

What's going on back there?

Yeah...

She might also be teething!

Happy Anna Howard Shaw Day!

2012-02-14T22:36:00.000-08:00

Ah love. Love is a glass of red and your husband allowing you to eat half of his double chocolate cookie and the crumbs in the bottom of the bag. Mmmm cookie crumbs...

Eleanor's Valentine's Day was fairly uneventful. We went shopping with Granny and I put her in the "seat" in the grocery cart for the first time. I wiped it down 80 times first, and she loved it, especially when we pushed her away and let go of the cart. Yah, my mum has had four kids and I have one and we still make terrible parenting choices. But her face! Oh, her face! She was in heaven. We stopped at Noodle Box for lunch afterwards and she had a completely white meal. White rice, bean sprouts, tofu and chicken. So much white food, but she really enjoyed it! I haven't fed her rice since the hospital and I must add it to our menu plan. She was all about it. We met Kris after work and went for a walk. It got cold really fast and she began to get ornery, so Kris carried her the rest of the way home, wrapped up in all her blankies. I had flashbacks to June and one of our last family walks before this all started. Eleanor got ornery then as well, so Kris carried her. It was warm and we didn't have a hat for her, so Kris wrapped her in a receiving blanket.

You can see how fat her tummy was and her face and neck were so swollen. My poor little bear. I know every parent thinks their kid is the smartest/best looking/funniest thing ever, but looking at her today, peering over her daddy's shoulder - wow is she every good looking now. I suppose it's the dichotomy of where she was to where she is now. I thought the same thing in August, but when I look at photos of her then, she still looks so cushionoid. I definitely have parent-goggles on when I look at her.

She went to bed peacefully, wearing her big cousin Bea's old pyjamas, and hopefully she will sleep through the night. She has been waking up and staying up in the middle of the night and it is pretty wearing on all of us. Two night ago, I finally got her back to sleep after three hours of trying, and then I noticed she had rubbed her NG tube loose. It wasn't out, but the stickers had given out and it was just hanging off her face. Ah! Panic! I had to manoeuvre myself very carefully so it didn't fall out, wake up Kris and stick it back down with his help. It is a two-person job AT BEST and we did not do a very good job. The tape was practically in her eye and pulling it slightly downwards. Thank God for the nurses at the Victoria General oncology clinic. They fixed it up later that day and her eye stopped drooping. Ugh. Another parenting fail. We are working hard to get rid of that tube, but it's going to take a few more weeks at least.

Speaking of removing things, we have gotten the green light to remove Eleanor's central line! It's handy to have for blood work, but she only needs blood work once or twice a month, so her docs have agreed to take it out! She will be able to have normal (and frequent) baths! And go swimming! And we won't live in constant fear of her pulling it out and bleeding to death! Hooray! It's very exciting to think that we will be able to enjoy our baby girl without all these foreign objects coming out of her, and it will make us a little more relaxed leaving her with other people. We never do that.

Oh my, I have gotten sidetracked. And I should get back to my husband. And his cookies. It is Valentine's Day after all. Regardless of romantic love, I hope all of you are enjoying love and being loved by every special person in your life.

Yesterday

2012-02-11T20:43:00.000-08:00

Just a quick update on yesterday's visit. I know I haven't been posting much lately, and it's kind of fitting with the rest of my life. It's all just one hot mess at the moment. But yesterday, ah yes, yesterday. We went to Vancouver to discuss Eleanor's future with her oncologist. I had sent my research notes in advance so we could talk about different treatments and any other doctors or hospitals that might be of interest. It was a calm and cool meeting, but the response the doctors gave me was exactly the same as it has always been: the nodes are too small to be successfully removed and the chemo she has already received is the only protocol proven to clear up his cancer. I was in full agreement with no more chemo. My research had told me the same thing. But why not surgery? There are 11 in her lungs, which still gave me hope - that's not that many. Dr Schultz pulled up the CT scan to show me, and they are shockingly small. Like, blink and you'd miss them. And they are everywhere. There is no real pattern. If we chose to operate, there is a really high chance that they wouldn't be able to find every single one, and it's very possible that there are smaller ones we can't see. The analogy provided was of ground pepper. When you crack pepper, you get big bits and small bits and some so tiny you can't see it, but you can taste it.

There is also a concern that the blood clot we have been watching in the tricuspid valve in her heart is not actually a clot - it might be cancer. In her heart. Gross. The thrombus that was growing from her tumor was so long, it reached all the way up her vena cava to her heart. And while the were able to remove the tumor and the thrombus in its entirety, it is very possible a piece of it attached itself to the opening of her heart. There is no way to know as there is no way to get it out. So even if we pushed for the thoracic surgery, she still might have cancer. In her heart. Gross.

Of course, it is possible that all these areas of interest are benign and harmless which is pretty much where we are keeping our heads at the moment. We have to believe that our strong, healthy daughter will continue to grow and take her Mitotane, and that will be enough. Otherwise we are just waiting around for the cancer to grow again and take her away from us. These are the thoughts that make my life a hot mess. Not very productive.

Anyway, I know many of you will write back to this saying that we need to fight harder, to which I say, we are. Mitotane is a powerful drug against this cancer, and the rest is up to Eleanor. She has proven the doctors wrong at every turn, so why should she stop now? I have faith in her and I hope you all do too.

Stability and Calm (while I was crushing her palm)

2012-01-30T22:20:00.000-08:00

I haven't written. I thought I would but I have been shrouded in crankiness. I can't shake this funk I'm in; I just feel sorry for myself. I'm not working, I'm not running, I'm just not myself. It will pass, but it's hard right now.

Blah-di-blah-blah. Enough about me.

Eleanor had a slew of tests last week. In two days she had 10+ tests and imaging done. It was exhausting, but she handled it like a pro. The only tests that she "failed" were her hearing (she would NOT tolerate the earbuds in her ears) and her enoxoparin levels (the tech used the wrong blood vial). All in all, it was a huge success and we learned that there has been absolutely zero change in her condition. There is no evidence of any hormonal activity and there is no growth. Same as last time. This is good-ish news. I was a little worried that because we saw recession in September and no change in November that we might have seen growth this time around, but we didn't. And that is good. I guess. It's not bad, that's for sure. I am putting together a list of doctors and cases for a so-called "second opinion", but it's a bit bleak. My shining lights have all had setbacks. They're not out of the game, but they're not exactly huge stories of hope, either. I am hoping that their doctors can add insight into Eleanor's case and maybe we can find a thoracic surgeon who is crazy enough to operate on my daughter and she will become cancer free and we will all live happily ever after, amen. We will meet with our good doctor next week to discuss our findings, and this should quell some of our anxieties.

Back to the drawing board. In the meantime, we wait.

We eat eggs

We get night-time neck zerbers

Lots of zerbers!

We bend...

And stretch

And rock one leg-warmer

We eat jammy toast

High-lar-i-ous!!!

We are pretty good.

Adventuring

2012-01-25T22:52:00.000-08:00

Eleanor is having her first sleepover at Ronald McDonald House! While Kris has spent many nights here, Eleanor always stays at the hospital, and I stay there with her. But this trip is different; she is not being admitted. We are just here for routine tests and imaging and then we will be on our way home. I'm trying not to completely panic, and Kris has set me up for success with her medications, but it is a lot to do all alone. Oh, did I not mention the part where Kris had to stay behind to work?!?! Because he did and it sucks. No, it's great. Another one of his apps is being featured on the app store, and that is good, but it means this trip is S.T.R.E.S.S.F.U.L.

Eleanor is such a sucky baby. She goes into hysterics if I turn my back. How am I supposed to organize all her meds, prepare her food, fix her formula, feed both of us, dress both of us and have everything we will need for a full day out? And then do it all over again the next day? Many have done it before me, and many will again. I think this is where I say to me (now here listening), "suck it up, princess. Get it done."

And that is how I am going to get through the next 48 hours. Put my head down and get it done. I just hope she sleeps tonight.

I hope I sleep tonight...

I'm going to get that done now.

Perfect

2012-01-23T21:31:00.000-08:00

It's been hard trying to find time to update the blog. My daughter has been holding on to me and refuses to let go. I lay with her to nap, I sit next to her and watch her play - I can't turn my back without her screaming. I get it; she feels lousy. Her counts are in the toilet and she's cranky. It's cool, but it doesn't leave me much time or energy for anything else!

We've had a busy and boring couple of days. We've been back and forth from the clinic, getting transfusions. Eleanor's blood type is O-, which is a much desired type as it is universal. Anyone can receive it, but only O- can receive O-. Last week they had to fly the platelets over from Vancouver as there were none in all of Victoria. This meant we had another day of waiting around for four or five hours.

PLEASE, if you CAN donate blood or blood products, DO SO!!! Eleanor has had 30+ transfusions and she is only ONE of THOUSANDS of cancer patients. Check out www.blood.ca to find out if you are eligible.

It has been dullsville around here. I don't feel comfortable taking the baby out or exposing her to different people, and the snow last week really shut us down. The most interesting thing I did was go for a walk. Seriously. I wrote a couple of blog posts, but they were so incredibly boring, I couldn't bring myself to post them! She had a couple of beautiful moments over the weekend. She is a rolly-polly little monster, which makes diaper changes challenging. Before she would roll up on to one side, but now she goes all the way over... and keeps going! It's nice to see her succeed in something physical, as she has been held back by her body for so long.

Another fun development has been her speech. I have been watching her closely for signs of deafness over the past little while. She was visibly startled by Kris a few weeks ago, and it was the first time I had really seen her hearing loss in action. I was acutely aware of her lack of consanant sounds when she babbled. After humming all morning on Friday, she suddenly started saying "mumumumum" followed by some "ba ba ba ba"-ing. It was pretty exciting.

Oh, and her hair is starting to grow back. Her eyelashes are visible to eyes that are not just mine and she has a few eyebrows poking through. The hair on her head is starting to come in, but it's very much at the blink-and-you-will-miss-it stage. I guess first to go, first to grow? Her hair only fell out in November, so it might take awhile to come back. But eyelashes!

I'm going to try harder to do more regular updates, especially as my family is away in Hawaii at the moment. Well, not my whole family. Just the semi-retired and semi-retarded ones. Zing! So while the hard-working, motivated members of my family are hanging out on this beach....

... they get to hang out on THIS beach!

Ah, it's not fair. But at least the snow has melted!

Snow is for suckers.

First Day

2012-01-13T22:08:00.000-08:00

I don't know why I thought it would be bad.

We arrived home on Wednesday evening to a clean house and Kris had a glass of wine and Malteasers waiting for me. He had laid out an assortment of Eleanor's toys on her mat. It was practically perfect. Eleanor and I went to bed early (I can't remember when I have been more tired) and slept for 12 straight hours. We spent the first half of the day curled up in bed together. We have never been out of the hospital when her blood counts were this low, so I felt a bit protective and didn't want to push her. We ventured out in the afternoon to my parents' house to celebrate my sweet niece's fifth birthday. I took the coast road over, and I drove slowly so I could take in the Olympic Mountains in all their snow-capped glory. As I came around to the east side of the island, looming in the distance and bathed in milky, winter afternoon sunlight was Mount Baker. Everything around me was grey, but there in the distance was the most spectacular sight I had ever seen. It was glowing like a beacon, leading me back to the place where I grew up. It made me so happy. We had a great time at Bea's tea party. Eleanor shrieked in delight at her big cousins and ate cupcakes and had lots of cuddles with her doting granny.

Today we had a clinic appointment. It was at 9am, so I was a bit fussed to get out the door in good time. Kris made me porridge with some cooked apples and sent me on my way with a cup of tea. As I drove towards downtown, this came on the radio:

Yes, Joni! Yes!

I have started to hate the way I am writing and feeling lately and the lyric, "talk in present tenses" suddenly clicked something in my brain. I want to exist in present tenses. Let's not dwell on the past, we won't worry about the future. I will just be here, now. And enjoy milk and toast and honey (or oatmeal with apples).

Unfortunately, the blue, red, green and gold faded over the day. Eleanor needed a red blood cell transfusion which took about three hours to arrive and three hours to administer. It made our day really long, but we came home to our super clean house and dinner on the table, and suddenly there were owls by night, by candlelight, by jewel-light and everything was right in the world.

It's not scary being home. It is wonderful to be home. I love this place. I love the mountains and ocean outside my door. I love my angry dog even when she takes revenge on Eleanor's toys. I love my crazy husband. It is really good to be back.

Last Night

2012-01-10T23:07:00.000-08:00

Tonight is our last night at BC Children's Hospital. Today is exactly seven months from Eleanor's diagnosis and our first night at this hospital. Tomorrow we go and start the rest of our lives. I am so sad. Unbearably sad. Every time I find myself alone, I am crying. I am replaying every moment, every milestone, every high and low of this journey and my heart beats and breaks every second.

Ga-goom

crack

Ga-goom

crack

Ga-goom

crack

The thought that keeps bouncing around in my head is loud and mean: Is there something more I could have done? Up til now I have been really good at not placing blame on myself or our GP or anybody who saw Eleanor in the months leading up to her diagnosis. Now I am fraught with the notion that I should have pushed harder. I didn't know that there are pediatricians on call in the hospital at all time. I didn't know that if I had gone to Emergency at the first suspicion I had, she would have had tests run and maybe we would have caught this thing before it spread to her lungs. I didn't know. I thought Emergency was for paranoid people and broken bones and wounds that won't stop bleeding. I wish I had known more. I wish we had more time.

Our time in the hospital is over, which means her first line of defence is over. And very rarely are they able to catch these things the second time around. I am crazy about this kid. She falls asleep wrapped around my arm, with her little feet resting on my leg and her little face an inch away from mine. Every night. I love her. And she might be taken from me? How can we be finished this part? Where is her reprieve? Can't she get SOMETHING for enduring seven months of chemotherapy? All she gets is a pat on her smooth, shiny head and a "See you later". No remission, no lasting success, nothing. She gets to wait for a miracle. She's had a lot of those, and it looks like they are running out, too.

Everything is fleeting. We weren't supposed to get this far, SHE wasn't supposed to get this far. Her heart was in such bad shape when we came in, the doctors weren't even sure how it was working. They had never seen anything like it. She nearly died. Her heart stopped twice in one day. Removing her tumor gave us these last seven months, and there has been so much joy in our stay here. Yes, it's been scary, but having these amazing doctors and nurses hold your hand when your world crumbles around you is a deeply personal and sacred thing. The staff here have not only healed Eleanor's little (big) heart, they have also healed mine and Kris's. They listen to your fears and strife and make it better. There is no promise of anything grand, it's just quiet understanding and hope.

HOPE

What is a world without hope?

And that is what Eleanor has to come away with, I suppose. We have hope. The doctors have hope. It's still too scary to look forward, but I can't waste anymore energy looking back, either. It hurts so goddamn much. We will all have to take it day by day, and find ways to slow the breaking of our hearts.

Say goodbye.

Hello.

Birthday Pics

2012-01-09T22:55:00.000-08:00

Here are a few photos from Eleanor's birthday party last month. I am a little late. Just a weensy bit!

Eleanor and big cousin Bea

She adores her

Eleanor's first painting! Best gift ever.

My big brother and his beautiful children

The End (of chemo)

2012-01-08T22:24:00.000-08:00

Eleanor had her last bag of chemo today. She has officially completed this segment of her journey and we will go home this week to "normal" life. She handled this last round like a champ; she ate lots of food, she was mildly pleasant to be around and she didn't throw up once. Eight rounds of grueling chemo that once knocked her on her ass, and now she doesn't even blink. We are so proud of her.

Her oncologist seems optimistic about the coming months. We will come in for scans and if the nodes come out of their dormancy (he doesn't think they will for awhile), then he has a few ideas up his sleeve. There is definitely the possibility of more chemo, but a different cocktail of drugs. Surgery is another way to go, as is a cord blood transplant. Our oncologist has done some pretty far out stuff with degenerative brain diseases, and I think he is quite interested in pushing the boundaries with Eleanor.

As for us, returning home is fraught with complications. Well, maybe just for me. I'll get back in touch with work and see about employment. It's been so long since I have used my brain for anything other than caring for the baby; I wonder how long it will take to switch back on. It was a B- brain at best before, and now it is moldy and old. It's definitely more of a D now. This transition is going to be tough, confusing and scary but also exciting. We will get to be a regular family for a bit with no more hospital stays in the foreseeable future. That's pretty great. Maybe Eleanor's eyelashes will grow back... Maybe she will start crawling... Maybe her NG tube can come out... Oooooo the possibilities...

I am trying to look at all the positives of our situation. A lot of the families we have gotten to know are also finishing up, but their prognosis are much more palatable than ours. It's hard not to get jealous or angry or discouraged, and I think Kris and I do a pretty good job, but somedays it so hard. We ask ourselves ridiculous questions like, "why couldn't she have leukemia? Or a Wilm's tumor? Or ANYTHING less rare?" But it is silly and futile and distracting from our ultimate goal of giving little Eleanor the best life possible and all our joy and love. Anything less is a complete disservice to her. So we focus on the positives and enjoy every minute with our little bear. Even when she is a juiced up, teething, 'roid raging bull, we still love her.

Most of the time.

We are taking offers if you are interested.

Heigh ho - it's back to chemo we go

2012-01-05T21:38:00.000-08:00

The beginning of each round of chemo is always a bit chaotic, and this round is no exception. For the first two days Eleanor starts with two hours of pre-hydration. She then receives cisplatin over a six hour infusion, followed by a two hour post-hydration. The etoposide runs the same time as the post-hydration (through a different line), and that means blood pressure checks every 15 mins. That goes on for an hour, and then she gets a little break, but six hours after the completion of the cisplatin, she gets a drug to counteract the effects of cisplatin (primarily hearing loss). This drug (I want to say sodium bicarbonate but I think that is table salt... something like that) is extremely nauseating so she gets ativan, benydryl and an extra dose of ondansetron. She usually wakes up for the administering of the ativan (it goes under her tongue) and so instead of this combo knocking her out cold, she is weirdly wired and simultaneously stoned. And it's usually around 4 or 5 in the morning. This is why I don't write much when we first get into hospital!

Eleanor does not care too much to be back here. I think she got used to the outside world and all its foibles, and she is thoroughly unimpressed with "arm hugs" (blood pressure checks) and vaccinations (RSV - one in each leg. Absolute torture), not to mention all the nasty aforementioned chemicals they pump into her. She's been pretty grouchy today and I don't blame her. She's up half a kilo in fluid and has had horribly interrupted sleeps/naps. We had lots of nice visitors and yummy food brought to us, so that made it a little better. At 6:30 I started to put her down and the music therapist came in and offered to play. Eleanor loves her, so I said sure, maybe some bedtime music. Erin played Eleanor's song quietly and slowly. I don't know if she does that for all the kids, but she wrote a song for her - makes me cry every time she sings it.

Eleanor sat there, transfixed as she always does, until the very end when she started bobbing and reaching for the guitar. She loves strumming that guitar and banging her little tambourine and shaking her shakers... girl's got rhythm! Erin then broke out all the old favourites and Eleanor grooved along with her. It wasn't the lullaby I had hoped for, but she did go off to sleep fairly easily afterwards. She is now sprawled sideways across the bed (our bed - I guess I will be sleeping on the floor?) and totally peaceful.

We have been offered a chance to leave after she finishes chemo on Sunday. She doesn't do all the nasty stuff she used to, so our attending GP seems to think she could ride it out at home. While this would be amazing (only FIVE days in hospital?!?), it does open a can of "what if" worms. If she gets a fever or sick while we are home, we would have to go into Victoria General, and not back to Children's. I like that her doctors are here and they know her. It takes a lot out of me when I am constantly explaining every detail of her illness to a new doctor or nurse. I think for that reason alone we will stay put. We will go home when her counts start to rise and all her tests and scans are complete. Yup, it's that time again! Time to see exactly what is going on inside her little lungs aka Mummy's Gonna Have a Heart Attack Time! We still have at least a week to live with our heads firmly underground, so we won't worry about that until we get there. I am giving myself more fun things to look forward to - only one more week til 30 Rock starts up again! Then it's all Tina Fey sass until May. Can't wait.

I have no way to end this post, so instead of me taxing my brain, here are some super cute photos of our break over Christmas! Enjoy!

Resting in ICU (yes, I took the gown when we left. Best jailbird/crazy person gown EVER!)

Playing with a very generous birthday gift from one of the other families on the ward

Opening prezzies Christmas morning!

Napping on Granny and Grandpa's bed, Christmas Day

Enjoying a glass of red with her God-Lady

Chocolate bikkies and watching cartoons with Daddy...

Daddy was super tired from all night meds. Bless.

Out in the stroller!

Cuddles with her big cousin Bea

Bye Bye 2011

2011-12-31T21:58:00.000-08:00

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

2011-12-28T22:04:00.000-08:00

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

2011-12-18T19:02:00.000-08:00

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

2011-12-17T11:55:00.000-08:00

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...

2011-12-14T21:50:00.000-08:00

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

2011-12-10T23:47:00.000-08:00

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

2011-12-10T23:40:00.000-08:00

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)

2011-12-04T22:29:00.000-08:00

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

2011-12-02T22:44:00.000-08:00

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

2011-12-01T10:41:00.000-08:00

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

2011-11-29T21:11:00.000-08:00

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

2011-11-24T21:48:00.000-08:00

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

2011-11-22T21:27:00.000-08:00

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.

2011-11-21T23:09:00.000-08:00

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

2011-11-17T21:04:00.000-08:00

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

2011-11-14T21:18:00.000-08:00

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

2011-11-13T23:35:00.000-08:00

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!

2011-11-08T21:09:00.000-08:00

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?

2011-11-07T20:59:00.000-08:00

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!

2011-11-04T20:23:00.001-07:00

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

2011-11-04T15:43:00.000-07:00

Baby E and Baby L had a playdate

Monkies!

Baby L is very advanced...

She tried to teach Baby E about sharing!

Round 4 or 6 (but who's counting?)

2011-11-01T23:37:00.000-07:00

We are back in hospital after an amazing week at home. Some very much needed R&R occurred and I feel like I can take on anything. Apparently, Eleanor does as well. She was quite feisty in the day clinic today, and balked at all the nurses attempts to get her blood pressure or temperature. She used to be really agreeable for that kind of stuff, but after a week off, she is very direct and quick to express her annoyance! She handled her doxorubicin and etoposide like a baby (meaning she handled it like a fucking superstar - there is no such thing as "just a baby" in our world) and is sleeping peacefully. Our transition back to institutionalized life has been nothing short of amazing. Everything went smoothly and stress free.

On the ferry

Baby girl looked pretty cool in her Chuck Taylor's today. It was also the first day she was willing to bear weight on her legs. I don't know if the two are related, but it was shocking nonetheless!

Jen came by for dinner, which was lovely. We see each other virtually everyday, but because she was away for a week, and then I was away for a week, it feels like we haven't seen each other in ages. She brought me back my notebook that I bought just before the baby was born so I could record any poignant moments in it. I wrote Eleanor's birth story, and then didn't write again for six weeks, and then one more time to record all her symptoms the day we went into hospital. I gave it to Jen to keep track of all our meetings during those first chaotic weeks, and then promptly forgot about it. She returned it to me tonight, and it is so weird to see everything in writing. It has become a living, breathing document of her life and her condition, but not intentionally. I suppose this blog is as well, but there is something about the written word; it shows so much emotion and tension. Just the way the words are scrawled across the page gives you a glimpse into how Jen or I was feeling in that moment. There are words capitalized and emphatically surrounded by asterisks, like the phrase, "IT IS SURMOUNTABLE", and you can feel the joy when small victories are achieved: "Bone scan negative!" It's such a cool thing to have all of it in one book that also shares her birth story. I can't bring myself to read that just yet. It took me months to get over it, and to stop marvelling, "That happened. That really happened!" and I don't want to start that all over again.

I think my favourite part of it (and the reason I bought it) is the quote on the front cover:

She's turning her life into something sacred: Each breath is a new birth. Each moment, a new chance. She bows her head, gathers her dreams from a pure, deep stream and stretches her arms towards the sky.

Pretty, no? Or maybe it's just a literary interpretation of me doodling hearts and unicorns jumping over the moon in my proverbial notebook of life. Yup. I'm feeling that good.

Home

2011-10-29T23:28:00.000-07:00

Home is sweet.

We came home on Tuesday evening, and it has been pretty awesome. Kris had the house all set up and ready for us which relieved so much stress. It makes such a difference to come home to a lived house rather than an empty one. Eleanor is visibly happy with the situation. She's so great.

But what would a trip home be without a few unscheduled visits to the hospital?!?

Last trip home was fraught with hiccups (broken feeding pumps, broken feeding pump bags) and so far we have been lucky. Four full days without an incident! Woo hoo! Until today, when she sneezed (I kid you not) out her NG tube. Oh, Eleanor. You silly little bear. We phoned the pediatrician-on-call before heading into emerg, and thank God we did. She arranged for us to go up to the pediatric ward and have the nurses there help us, rather than sit in the emergency waiting room all evening. The nurses were sweet, but were not very familiar with the procedure on an infant, and it was all a bit tense. We didn't bring any of the band aids we normally use to stick the tube to her cheek, and the ones the nurses provided didn't work very well, so they put layer after layer of tegaderm (clear tape) in an effort to get this stupid thing to stay put. She looks pretty silly, but it's in the right place and staying put and that is all that matters.

One thing that is a little unsettling about our pretty awesome home visit is Eleanor's inability to go to sleep in the evenings. The first couple of nights were okay; she took a little while to settle and needed lots of time to hug my arm, but would eventually go to sleep. The last two nights, however, have been maddening. She shows all the sleepy signs (yawning, eye-rubbing, general fussiness) but the second she gets placed in her crib, she is wide awake. I bent over her and allowed her to hold my arm for 45 minutes and I don't even think she blinked once. It makes me incredibly frustrated, so I passed over bed duty to Kris. He's very patient and sits in her room and stares at her til she sleeps. It takes awhile, but at least he doesn't get as mad as I do. Patience is a virtue I do not have. She just fell asleep, and he came in here to express his concern with her. We both agreed that it is probably the high dose of steroid that is causing her to fight sleep. The doctors keep her on the stress dose as it would be harder on her system to wean her down and up again for each round of chemo. Kris looked so small and frail in the doorway. My heart broke (and is breaking again as I type this) when he said, with sloping shoulders and heavy heart, "I feel so bad for her". Even when she isn't getting chemo she still has side-effects from other meds to contend with, and still has to get tubes shoved down her nose and it can't feel very good. She is super-human in so many ways, but she is still only 10 months old. I feel bad for her, too.

But that said, our visit has been great. She is active and happy and never cries during the day and naps well and is in loooooooooove with her dog. They have become fast friends when Atia realized that Eleanor was like a human lollipop with changing flavours. Mmmm coconut yogurt in the morning and sweet potato and chicken in the evening! Who could ask for anything more?

Early mornings with my girls

I Want Security

2011-10-23T21:36:00.000-07:00

Eleanor has a new security blanket. It's my forearm. No other part of my arm will do. No one else's arm will do. She will not sleep without it.

I'm fortunate in the fact that her hospital crib puts her at waist level, so I am not forced to fold my body in half whilst allowing her to snuggle with said arm. It's still not that comfortable. I usually end up leaning over her for a good 15 minutes while she slowly nods off. She likes to absentmindedly stroke my arm with her right hand while pulling it closer with her left. She smacks her lips and rubs her tongue over her gums (and lone tooth*) the whole time. I know she is asleep when the smacking stops. It is only then that I can begin my escape, and I ultimately go too quickly and she wakes up. We usually end up repeating the whole process two or three times.

I suspect it is a behaviour that has developed from the fact her nursing came to an abrupt stop. She probably still craves some skin-to-skin contact and has come up with this as an acceptable substitute. I have to say that I am also finding weird ways to be close (see previous post re: lying in her crib). I miss having that cuddle time too, but this arm-fetish is bizarre. I know when she is tired because she will contort herself in my arms to find my skin, and then her little hands just stroke away. It's almost like she is trying to put me to sleep - There, there, Mummy. Shhhh...

I sometimes feel like my heart is going to burst I love her so much.

*Great shot of her lone tooth

My little jack o' lantern

Mantra

2011-10-21T22:41:00.000-07:00

I don't know how to pray. I've been trying for months and I am not very good at it. I try and think my prayers through in my head, but ultimately become distracted. I have tried mumbling them to chest to no avail. I have tried going through them while walking, but I end up coming up with blog posts or Facebook statuses instead. You know it's bad when you start praying in Facebook statuses...

I have this belief that prayer shouldn't come from just spoken words, that it should be an all-encompassing cataclysmic event. Your whole body should vibrate with your requests and hopes and dreams and shoot them out into the universe. Yoga and running long distances can often drum up that sort of response with me, but it doesn't happen very often.

On my run yesterday I tried to think my way through my prayers. As usual, I was falling short and getting distracted. I wasn't going very far or very fast so my body wasn't helping the situation. I decided the best way to get my point across was by simplifying the whole process. Rather than thinking out long, drawn out thoughts, I boiled it down to one word: remission. I chugged my way up Queen Elizabeth Park, each syllable punctuated with every step: ree-mish-shun. All the way over to Shaugnessy, I kept it in my head: ree-mish-shun, ree-mish-shun. By the time I came down Angus and back towards the hospital, I was flying faster and faster: REE-mish-shun, REE-mish-shun, REE-mish-shun. My hip flexors were aching and my lungs were burning. I am very out of shape, but the dream of that one word was enough to keep my feet moving and my legs churning. It drives everything I do. I want it so badly for her.

She's turning out to be such a lovely child - so long as Kris or I (preferably both) are in her sight line. She's chatting away and playing games and full of chuckles. She definitely still has a hearty, masculine laugh from all the testosterone she was exposed to - no girly tee-hees around here! It's really fun to see her grow. I have taken to climbing into her crib with her and snuggling. I close the blinds so the nurses won't think I am nuts... though it's probably too late for that... But it's hard to get our cuddle time in, especially now that she has stopped nursing, and she has been hooked up to a mega-IV pole for the past two weeks and is virtually bedridden as a result and I miss my baby. So I climb into her bed. As I was laying next to her last night, I couldn't get over how old she looks. Her eyes are those of a toddler. It's crazy how much they change. She's still very much a baby, but I can see what she is going to look like in a year's time. She's growing up.

We are waiting for her blood counts to come back up before a short home-visit and then on to the next round. She's taking a little bit longer this round, so we are just taking everything day by day. It's been a very good week.

An Open Letter to Katelyn V.

2011-10-17T15:28:00.000-07:00

Dear Katelyn,

I wanted to take this opportunity to address an issue I have been wrestling with for quite some time. I want to apologize. I was not a very good friend to you.

When your mum was first diagnosed, my world was rocked. She was the most vibrant, youthful women I had ever met. She could have easily been one of those women who pretended to be your older sister, but when people gushed over her appearance, she would smile modestly and accept the compliment. She was probably the closest I had been to cancer, and I couldn't deal with what that meant for you. I'm close to my mum, but you guys had a pretty crazy bond. It was like you shared the same brain sometimes. I knew that her cancer would be a devastating blow to your family, but you - being so delicately sensitive - would take it worst of all.

I remember being in Victoria, getting ready for my wedding and talking to my dad about her. I remember how he sucked in his breath and shook his head when I said eleven tumours had been removed from her legs and it had spread to her liver. I knew that this meant her prognosis was terrible and I was devastated, but still hopeful that you would come out for the wedding. When you informed me that you had to stay with your family during this difficult time, I was pretty mad. Well, disappointed and mad. I selfishly wanted you to be there and felt that you could take the four days away and it wouldn't affect your mum that much. I didn't know, I didn't understand and I am sorry.

I came down to see you shortly after I returned from the West Coast. I wasn't sure what to expect when I saw your mum, and to my surprise, she seemed much better than I thought she would! She was laughing and looked the way I remembered her to look. She was weak, but she was still Sandy. Your poor dad was a mess, and he got so angry at the thought that I wouldn't have any protein with my dinner (you were having a BBQ). God, he is a sweet man. I was so frustrated that your family was bending over backwards to feed me and some cousins and grandparents when we should have been looking after you. I showed up empty handed. I didn't know, I didn't understand and I am sorry.

Summer turned into fall and fall turned into winter. Kris and I settled into married life. I toasted Sandy's success of having a glass of wine at Christmas with several glasses of my own, but I never told you that. We got a dog. I changed careers. I found excuses to not go and see you. I would attempt to visit when you popped into town, but I would go begrudgingly and whine about the lack of notice. I told myself I was still mad about the fact you didn't come to my wedding but I was scared of you. I was scared of the burden you were holding. I was scared that your mum would die. I was scared of what that would do to you. I didn't know, I didn't understand and I am sorry.

It was springtime and I was sitting in my office at FTC, one month into my full-time volunteer gig when I got your text saying Sandy had stopped chemotherapy. Hot tears flashed into my eyes and I went to the bathroom and bawled like a baby. Every wall in this bathroom was a mirror, so everywhere I looked I saw this shame-filled woman. Why are you crying, shame-filled woman? Because Sandy was going to die and I was thinking of all the things I should have done for you and your family. I don't even think I replied to the text. The second text came through the next day saying she had passed with grace. I immediately started making plans to come down to her celebration of life party. I threw off the shackles of my shame and I was going to be there for you. I cried pretty much the whole way down in the car but I told myself it was good to get it out before I saw you. Not so much. I saw you before you saw me and I started crying again. I made a quick pit stop in the bathroom before I attempted speaking. It didn't help. I don't know what I said but I know it was all wrong. I kept telling your sisters how gorgeous they looked and thanking Heather for all her old bras. I know. I cringe just thinking about it. I remember the look on all your faces so clearly. You and your sisters really did look wonderful, but there was a hardening in your features. This experience had taken a toll on you, but you were all still standing, still smiling. I almost couldn't believe it. I think I had thought that if your mum passed, you would die too. You would simply somehow cease to exist. I didn't know, I didn't understand and I am sorry.

I realize now that I made your mum's illness and subsequent death all about me. I couldn't deal with how you would feel, and I pulled away from you. I didn't know what I could do to help, so I did nothing at all. I still feel terrible about all of this, and I really want to apologize. It took me going through my own harrowing experience to realize how ridiculous I was. I am sorry, and you are in my thoughts and prayers often. I truly hope you can forgive me.

I am writing this as an open letter because I know there are many people out there who, like me, are paralyzed by these types of situations. There is a sense of powerlessness for bystanders who care so much, but are unable to act. And to them I say, it's okay. Cancer is fucking scary. When cancer affects someone who is loved very deeply by another person, it is a really hard thing to process. On the one hand, there is a person (Eleanor, Sandy) who is fighting an uphill battle, and on the other hand is the primary caregiver (me, Katelyn). How do you deal with two breaking hearts? How can you possibly make a difference in their life? It's pretty easy. Send a note. Drop by with a coffee. Say you care. Don't be afraid. Be compassionate. It's normal to be scared, but we don't bite. Kindness is always appreciated.

Oh, and if you still can't, I don't hold grudges. Katelyn, I really hope you don't either.

All my love,

Kate

Kate Squared - circa 2005

Battle

2011-10-16T22:14:00.000-07:00

I'm feeling very tactical these days. Every day feels like a battle. I have all my fellow generals and lieutenants around me and each morning we make a plan for how we will see out the day. All through the night she was showing signs of discomfort and irritability by coughing and crying. Morphine boluses were administered and we readied our troops for the morning. She struck first with an unprecedented attack. Whilst in the middle of a diaper change, she started to throw up. After she settled down, I picked her up to comfort her, and boom! She threw up all over me. It wasn't much, so I held her close to me, only to feel my abdomen grow hot and wet. Hmmm. It seems the first vomit was a decoy to make me forget about putting a clean diaper on her! She had peed all over me and the floor. We regrouped and anticipated her main siege. We were waiting to see her temperature rise and when it did, we promptly attacked with antibiotics and Tylenol. The battle was swift and we came out victorious. It seems as though we are winning at the moment, and she has been sleeping comfortably (no cough-cries, no vomiting) for almost four hours. Hopefully this will continue overnight, as this captain is pooped!

Crappy war-analogies aside, nighttime is not my friend. Maybe I am too deep in battle-mode and my body won't let me rest. Maybe I am eating too much pumpkin pie too close to bed. Or maybe it's just tough to sleep with a snoring baby. Man alive, she is noisy. Her mucousitis is back in full force and it causes her to have very raspy and apneatic breathing. It really hurts her so she wakes up crying and takes a long time to settle. Her nurse and I are all over it tonight. She saw how I didn't get any sleep last night and is ready and waiting to jack up her morphine, if needed. I'm hoping that we will both rest easy either way.

I hope this stage of the war is over soon. I miss my baby girl. She is hiding underneath all this sickness and morphine and I want to see my smiling, happy girl again.

We Day

2011-10-13T22:01:00.000-07:00

What a day!

My fabulous husband took the reigns today in the hospital, which allowed me to attend We Day. We Day is the annual signature event for Free The Children a.k.a the thing that we all work so hard for every fall. It's a pretty big deal and this is my first year that I haven't done it. My goal was to be back at work by Labour Day, but the universe had other ideas! Anyway, I was lucky enough to be able to attend and it was amazing. I shed a few tears as I entered Rogers Arena - Gate 2 brings back so many memories of tearing my hair out about Registration - but quickly composed myself as I looked nuts. Much to my delight, I ran into a few former coworkers almost immediately. I realized that I hadn't thought through what I would say to people. Usually I try to plan it out and have a standard statement I can easily regurgitate, but I was so excited to be there, that I really didn't think about what to say. So the first couple of people I saw I kind of awkwardly stumbled through Eleanor's condition. It was a little like starting to sing without a proper vocal warm up, and what came out was a "mee may myy maaah moh moooooo" of baby cancer nonsense. I got better at it as the day went on.

We Day 2009 was my best We Day. I was the Issues lead for the Honoured Guest team. This meant that any one with a problem came to me. It was awesome. It consisted of me delegating tasks to others and passing off problems I couldn't solve to the official Issues team. I spent most of today in a similar capacity with Amy, who was heading up the Volunteer team and solving most of their issues. We escorted sponsors to where they needed to go, scrounged/stole pizza for hungry volunteers, and used any excuse to go down to event level to the cue line! We met Mia Farrow, rode in the "party elevator" with the guys from Hedley and got a "whaddup?" from Shaq. I got to see everyone I wanted to see AND felt like I was a part of the day. It was pretty awesome, and I am now beyond exhausted. Everyone kept inviting me to the after party and I was sorely tempted, but I am like an over-stimulated child, and need to sit quietly before bed.

I really don't get out much.

Today was probably the longest anyone (aside from me) has spent with the baby. I have been out in the evening when she is sleeping, but I rarely go out during the day. I don't think I am a crazy control freak, but the previous statement kind of proves otherwise. I can never seem to find a good enough reason to leave her royal smelliness, and she has really bad separation anxiety and that gives me anxiety. It's the worst when I return to the hospital and I can hear her screaming when I get off the elevators. It's not so much the crying that bothers me, it's the thought of the poor person doing everything in their power to shut her up - and failing. Today wasn't like that. Kris got her to nap and she only cried when he left to get lunch. Not too shabby. They were happily watching baseball and chatting up the nurse when I returned. And laughing. She was giggling away. God, I missed her. But she's doing pretty great, and it's pretty evident that Kris can look after her just as well as I can. Whew. I said it. Can't take it back now.

Hmmm....

On that note, maybe I'll get out for a run tomorrow...

Obsession

2011-10-10T20:46:00.000-07:00

I am obsessed.

I have a deepest, darkest secret. I am living vicariously through other people via the internet. The defensive part of me yells, "So what?! I live in a hospital. My life is on hold. I have every right to snoop through details of other people's lives". But then there is the sensible, compassionate side that reasons "I know what I am doing is wrong. I really should mind my own business. This is the last time."

I can't get enough of war stories, of families that have gone through or are going through similar situations to me. I am especially obsessed with the ones who have finished treatment and have gone home. I have been repeatedly creeping these people who I spoke to all of three times while they were in hospital. Their beautiful daughter had a tumour that turned out to be benign and they went back to their perfect, beautiful life. I'm not "friends" with them on facebook, but dad doesn't have any privacy settings, so I am free to look through the virtual window into their idyllic existence. Everything about them emits a rosy glow, even their goddamn cat. I hate them. I love them. My shrink is going to be hearing about this one.

This obsession is not a new one.

When I was seven, I started taking jazz dance classes. There was a girl in my class who was so good at dancing and so pretty and everyone liked her. I never had big self-esteem issues in school; I didn't have trouble making friends, I was confident enough and generally people liked me. But something about being in a class, wearing spandex and not being able to joke my way out of a Running Man or a Roger Rabbit or jazz runs made me nervous and this girl made me crazy. I wanted to be her. I wanted to dance like her. I wanted to be as pretty as her. I wanted to have her older sister (who was even prettier and an even better dancer) and her mum and drive away in their black Nissan Pathfinder. Then I would be the most popular, the most flexible, the most beautiful... I would be the best. When going through some choreography, the second row had to come forward and make a line with the front row. Naturally this girl was in the front row - so everyone could follow her. Also because she was short. I quickly realized that this move would make me stand right next to her. The class moved through the steps and paused for further instruction. I stood there, taller and awkward as hell next to the coolest girl I had ever met, and do you know what she did? She hugged me. She hugged me and said something to the effect of "Aw yay! You're with us!" and then her fat sidekick hugged me too. I felt like a million bucks. It was the single greatest moment of my life - at that point, anyway.

Curiosity got the best of me a couple of years ago and I looked up both her and her sister on facebook. They were both barefoot and pregnant and still dancing, but not nearly as beautiful as I had remembered. I wonder if they remember me, and what they would say about me if pressed. Did she me as an equal? Were we friendly and I never noticed because I was too busy worshipping? Or was I just that creepy girl who stared at her all the time? I'll never know, and I don't really care. I guess that's what it comes down to. I could "friend" these perfect people with their healthy children that nearly walked down the same path as me, but what's the point? I don't really care. Just like this dancer-girl, I wanted to be them for a short time in my life... I want what they're having, but what I am having is pretty good too. Take a look through my window....

Newlyweds

Three days old

Meeting big cousins J and B for the first time

Co-Sleeping through rough nights

Wearing her "boyfriend's" pjs

Who likes their num-nums?!?

Nap time with daddy

You are perfect to me

2011-10-08T11:16:00.000-07:00

Eleanor is getting her cisplatin today. Her oncologist looked into alternatives, but found nothing that could fight her cancer in the same way.

She will almost certainly become completely deaf.

She will have the deaf voice (if she even speaks) and will need hearing aids. We will learn sign language.

It's a hard adjustment. Kris and I are again mourning the loss of the life we had hoped for our daughter. We were both athletic and artistic, and there is a bit of sadness that she won't be able to experience those things the way we did. That said, my high school drama teacher was stone-deaf and he had impeccable comedic timing and rowed for Oxford. It's not the worst thing, it's just a new and unexpected thing. At this stage, we just want to give her the best chance at survival, and if this is the only way to do it, then so be it. We will adjust.

I am also adjusting to how big she has gotten. Not in size, necessarily. I keep calling her The Incredible Shrinking Baby because she has lost so much weight and no longer looks Cushionoid. But she is growing up. She sits beautifully. She babbles. She is highly interactive. She won't eat unless she feeds herself and, much to my displeasure, she has weaned herself. I always said I would breastfeed until the baby got tired of it. I would have had no problems if she wanted to nurse til she was two, but she had other ideas. I have tried for the past three weeks to get her interested again, and she will have nothing to do with it. She is done. I am starting to get over it. It's been hard. My baby is growing up, and that is awesome. She is progressing, developing, getting better. And for that, I am happy. But if you had talked to me a week ago, I would have been in tears. I had no idea that it would make me this emotional. Emotional seems to be the name of the game these days. I can't help but feel different. Everything is changing and I am just holding on for the ride.

sleepwalking through the all-nite drugstore

baptized in flourescent light

i found religion in the greeting card aisle

now i know hallmark was right

and every pop song on the radio

is suddenly speaking to me

yeah, art may imitate life

but life imitates t.v.

'cuz you've been gone exactly two weeks

two weeks and three days

and let's just say that things look different now

different in so many ways

i used to be a superhero
no one could touch me
not even myself
you are like a phone booth
i somehow stumbled into
and now look at me
i am just like everybody else

I miss her. I miss my baby. I miss being the only one who could feed her, comfort her. I love who she is becoming, but I miss who she was. And she was stuck for so long, I thought she would never change - she would always be this four-month-old trapped in a nine-month-old body. So many changes.

But with all this, the time has come and I have ordered a "Cease and Desist" against the breast pump. It's over. No more. I can't take the abuse; nobody should have to go through what I went through. It's not right being pushed and pulled every which direction, or being squished into uncomfortable places. I am beyond relieved to be rid of the constant groaning and moaning that I put up with for far too long. I'm free at last!

Blessed

2011-10-06T22:08:00.000-07:00

Sometimes it's hard to have your prayers answered.

My living, breathing, sitting miracle.

2011-10-05T22:32:00.000-07:00

You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life. - Steve Jobs, 2005

What a week! We are back in the hospital and settling back into our routine after our adventures at home. Our time at home was pretty wonderful. It was incredibly stressful and fraught with emotion, but on the whole, it was great. By Monday morning, we were in a "normal" groove. We woke up early, and Kris brought the baby into bed with me. I organized the baby and the dog and set out for a walk while Kris worked from home. It felt just like old times, and it was deliciously ordinary. Well, it was until her feeding pump started beeping and I had to unhook it from the stroller to figure out where the error was coming from. It was while I was sitting on the sidewalk with a bag of breast milk in one hand and Eleanor's nasal gastric tube in the other that I realized no matter how ordinary our life looks on the outside, it is changed forever. We are not normal.

We got back into hospital yesterday, and had an unexpected visit from Eleanor's oncologist. He informed us that they were going to hold the cisplatin due to her extreme hearing loss. I bristled, and he asked me point blank, "if she survives this, do you want a deaf daughter?" and I was speechless. I had geared myself up to fight, but I realized I wasn't prepared to make this decision at all. I don't know a lot about cisplatin, but I do know that the modifications we made before didn't do anything to fight her cancer. With the cisplatin and the proper doses of the other drugs, we are now seeing results. So do we put our faith in the doxorubicin and etoposide and hold off on the cisplatin for now, or do we forge ahead and ruin what is left of her hearing? We don't know what lies ahead; we only know what has happened previously. Kris and I will be meeting with Dr. Schultz again on Friday to discuss next steps. We have a lot of thinking to do.

On the plus side, my soul was deeply replenished by a fundraiser for Eleanor last night. It was so amazing to have such amazing people from all stages of my life under one roof. It was phenomenal. A huge thank you to my incredible coworkers for organizing it and to all the beautiful souls who came out to support. You are all superheros. Thank you, thank you, thank you!

Baby - she was born this way

2011-09-28T22:47:00.000-07:00

Well, the scans came back showing some improvement! We're not in remission, but there was definite progress and shrinkage of the lung nodules. The full report hasn't been written up by radiology, so our oncologist couldn't elaborate too much, but so far so good. He seemed pleased with the results, which is also promising, as he is notoriously pessimistic. Another plus is Eleanor's kidney function. It is back up within normal range, which is pretty awesome. Go, kidney, go!

There is talk of modifying her chemotherapy down the road, specifically the cisplatin. Apparently her hearing loss is putting her in the range where they have to make changes. I'm not entirely sure why - at this point, who cares about hearing loss? I just want her to survive. But there must be some other reason beyond deafness for the modification. We will wait and see, but I will keep pushing for the cisplatin. Anything that makes her barf that much is bound to be helping!

We also got a preliminary report back from the geneticist. While our oncologist didn't go into details, he did say that they found a mutation, and we have every reason to believe it is Li Fraumeni. Our bodies are always developing anomalies, but they have a whole bunch of resources to stop tumours growing. Eleanor doesn't have that. Her condition makes it very hard for the body to stop growing tumours, so any occurrences will continue to grow out of control. This means the risk of developing another solid tumour cancer in her lifetime is very likely. I am told it will not affect her treatment, so she has the same odds of beating this as someone without this condition, but it means lifetime supervision and Kris and/or I could be carriers as well. We will have to be tested at some point. I have to say, it's pretty handy to have a genetic counselor as one of our closest friends! She has given us tons of info already, so it has made this revelation a little more palatable.

I am quite happy about the regression of the mets in her lungs. It really is great news, and yet I can't help feeling a bit down. Genetic conditions are hard to wrestle with - I now know why they have counsellors to help people deal with them. We made a cancer baby. That's kind of sad. Well, not sad... A little sweet with a little sour, I suppose. A cancer baby with the biggest smile and the cutest feet and the most ridiculous lone tooth and the most expressive eyes and the prettiest fingers and the softest belly and the fattest cheeks... okay, a little sour with A LOT of sweet!

Naked

2011-09-28T10:52:00.000-07:00

I just dropped the babe off at her CT scan. I held her in my arms and kissed her cheek as she slowly dropped off to sleep. It was much more gentle than the last time, where she instantly turned into a rag doll. They anaesthesiologists ushered me out of the room and I walked the long walk back to 3B, alone. It's amazing how incredibly exposed and naked I feel without my baby in my arms, without her IV pole to maneuver. I put on Kris's sweater and hug my arms around me to feel less alone. She'll be back very soon, and results will follow. I have every reason to believe the results will be good - so why do I feel so scared? I guess I am reliving everything that went wrong last time: the GP avoiding telling me and getting so upset that she transferred our file to someone else; the shock of not 3 or 4 nodes, but 10 to 20; the offer of stopping treatment (again). We put all of our faith in the "big girl juice" and it was all leading up to today. Now we wait and see.

Goosebumps

2011-09-25T15:34:00.000-07:00

The inside might be as black as night/ But at the end of the tunnel there's a light!

We are through the woods. Eleanor's white blood cells haven't just rebounded, they have skyrocketed (as they tend to do because she is so amazing)! I love my baby girl. She's got some kick ass bone marrow that is almost as resilient as she is! Another plus - her blood pressure is within normal range... This is a very strange occurrence that no one can quite figure out. Hers has always been on the high side, even with medication. It came down, so they held off on the medication, and three days later, it's still down. Amazing. Hopefully it will stay down and we will have one less med and one less worry!

Resting comfortably

We've had an interesting weekend. It's been very busy on the ward with every bed filled and nurses calling in sick. Everyone is tense. Eleanor had a rough night on Friday, and I was up til 1am battling her NG tube. It clogged and when they inserted a new one, it clogged again. They finally got one to work and we both passed out. She woke up at 4am to be sick, and I called the nurse to help me change the sheets. I rang the bell and no one came. I rang it again and the charge nurse came in. She had a no-nonsense approach to the situation and Eleanor was changed and back in bed in no time. Our nurse came in shortly afterwards and noted a glazed look in Eleanor's eyes. She asked the resident to come in and take a look, to which the charge nurse replied "She's breathing, she's fine. Katie (the resident) has more important things to deal with." It was pretty tense, and when I went out into the hallway a few minutes later, there was a crew of doctors and nurses gathered around room 14. A new admission, it seemed.

The next morning, I walked by room 14 and all the blinds were drawn and there was a note on the door saying "Rest needed. Please check in at the nurses station". Not a big deal, but there was something unsettling about it. There were lots of stressed out people in the playroom and the parent's lounge. Later that afternoon, Kris was chatting to our nurse about the new family in room 14 and how he wanted to introduce himself. Our nurse nixed the idea as the patient in that room had passed away that morning. She told us it wasn't an oncology patient and it was expected. And that was all. Someone died two doors down from us. There was a dead body with a grieving family in the room down the hall. I didn't leave the room yesterday.

Death is the only thing certain in life. Hospitals are often where death occurs. I know this, and yet, I feel safe from death in 3B. Kids die in ICU. Kids die in surgery. Kids die at Canuck Place when no other treatment is available. Kids don't die two doors down from where I live. But that's what happened. I don't feel safe. I know Eleanor is far from death right now, even if her prognosis gets worse. She's not going to die tomorrow, or next week, or even next month. So why is she two doors down from someone who died?

I managed to coerce Kris into staying with me til late last night. He went to get water from the kitchen around 10pm and ran into another dad. They started chatting about the events of the day and then froze when they heard music coming from the playroom. It was a toy that Eleanor loves - a little piano that plays three different classical music songs when you press the keys. It also has a rattle and is small enough for her little hands. They heard it play two songs and then went into the empty, dark playroom to find it. The second they walked in, it stopped. No one was in there. Kris's arms prickled with goosebumps and the other dad just smiled, "It's not the first time" he said nonchalantly. I didn't sleep much last night.

I ain't afraid of no ghost...

The logical explanation is that the toys shifted in the toy box and that was enough force to make it play, but it all feels a bit weird. I hope the family that lost their child yesterday are at peace. I suspect they are as the world feels much calmer, much quieter today. I said a little prayer for them as I watched my daughter "puppy-dog" sleep last night. She twitched like she was chasing bunnies, but was still peaceful. I am thankful for the peace. But I will never, ever let them put us in room 14.

Ever.

Fever

2011-09-23T14:48:00.000-07:00

Eleanor's fever is persisting. Every time I think it is under control, it pops up, seemingly out of nowhere. She had blood cultures done when it first spiked three days ago and they put her on antibiotics right away. That didn't seem to work, so they put her on a new antibiotic and have done more blood cultures this morning.

We never had a thermomater in the house when I was growing up. My mum and dad used to just feel my forehead to judge how sick I was. It seemed to work for them, but I thought they were crazy to rely on intuition. Now that I have experienced my own child with a fever, I get it. Her whole being is consumed by fire. Her breath is hot and ragged. Her head is sweaty. Her skin is scorching. Her cries are laboured and are never ending. It seems so exhausting. I hope these antibiotics work for her. She hasn't slept much this week and she really needs to rest, God love her.

She is getting better, despite the fever. Her blood counts are rising again, which will help her fight off whatever is ailing her. Every now and then we see glimmers of a happier girl, and it eases our worried minds. She loves playing peek-a-boo with her dad's hat and has started showing an interest in that again. It's better than her playing with all the tubes! She has a really bad habit of pulling on them when she is high on morphine. I turned my back for a few minutes the other night and this is the mess she created...

Such a junkie!

Sound of Silence

2011-09-21T20:22:00.000-07:00

Sweet, sweet sleep.

After 24 hours of continuous crying and moaning and struggling to manage secretions, baby Eleanor is finally resting.

What an ordeal.

I watched the hours tick slowly by last night. I alternated patting her bum, stroking her hair and resting a heavy hand on her tummy. Nothing worked. I tried rocking her, but it compromised her airway. I held her upright and bounced her, and that seemed to work, so at 2am I put her in the carrier and bid my own sleep goodbye. She fell asleep almost instantly, so I swayed her back and forth for almost an hour. It brought back memories of our first night at BCCH and I had to keep her quiet to keep her alive. I swayed for eight hours that morning; last night was nothing compared to that. Anyway, I swayed for almost an hour, but I learned pretty quickly that there is nowhere for vomit to go when she's in the carrier. It was all over both of us. I got us cleaned up and put her back in bed. Exhaustion was starting to get the best of me and I shed a few tears to the nurse and she got the resident to come talk to me. The resident said the same thing as the nurse and the same thing as our oncologist - the pain team are unwilling to administer anything to her until the morning. We would just have to wait.

It gets a bit hazy after 5am. I must have dropped off for a bit, but I am unsure if Eleanor slept at all. I think I just tuned out her persistent crying. I woke up a little after 7am and got us ready for her CT scan and waited for the pain team. As our appointment time came and went and there was no sign of anyone, my frustration levels escalated. Apparently her mucousitis would have interfered with the scan of her lungs, so the powers-that-be cancelled it. Fine, let's just get her pain sorted out. The CMI was eventually hung at noon and did nothing. The decision was finally made to turn it up at 6pm and she stopped crying almost instantly. She smiled at the nurse and drifted off to sleep like a little angel. Unbelievable. What a day. I'm going to bed.

Oh, but before I do, a big thank you to Yung for dropping off some yummy tea and sympathy, Jean for the care package (I would have starved today if it wasn't for the Lara Bars and chocolate!) and Jen for the herbal tea and help with my lasgana. Thank you ladies! You made today much, MUCH better! Little rays of sunshine in an otherwise gloomy day!

Lucky 13

2011-09-20T23:47:00.000-07:00

Today is Day 13. Today is her "bottom out" day; the day her counts hit absolute zero.

We woke up late and had to hustle to her audiology appointment. It went poorly in more ways than one. The first part was tough because her hearing is very clearly going. It is just the high frequency range she can't hear, but she will need extensive speech therapy to be able to pronounce "f", "sh" and "tss" sounds properly. The second part of her test was a struggle because she clearly was starting to feel lousy. She fell asleep the moment I placed her back in her bed.

We had lots of visitors, which was nice. Eleanor was quite courteous for the most part, and her nurse and I were patting ourselves on the back. "Look at how low her counts are!" we exclaimed. "She is doing pretty well!" which really means we are doing well. And no sooner had we decided that she wasn't going to need CMI (continous morphine infusion) than she went south. Fast. She has been moaning for the past six hours and she spiked a fever. They gave her some Tylenol and she has been getting hydromorphone every two hours. She'll start CMI in the morning. She seems to take some comfort from being held against my shoulder. I guess gravity helps keep the mucous down. My clothes are covered in it. Her whole body is hot. Her breath is hot. Can you hear me sighing?

It could be worse. I wrote a post while we were in ICU about the breast pump ordeal. Well, the woman I was "sharing" the pump with is back in hospital with her now-three-month old baby girl. Her daughter is not doing well and they are being flown to Edmonton tomorrow to wait for a heart transplant. My heart breaks for her and her family. Edmonton is far and transplants are scary. Nancy, if you are reading this, I pray that Abi will thrive and that you, Jamie and Hailey will find the strength to get through this next chapter. If Abi has one-tenth of the gumption and determination that her mother has, I am sure she will be fine.

Right. So much for my early night. It has taken me almost four hours to write this as Eleanor has been unsettled since I put her to bed. Tomorrow is Day 14 and today will be distant history, until next round, of course.

Near Miss

2011-09-16T22:29:00.000-07:00

Be still my beating heart!

Eleanor started to struggle a little bit today. She had restless naps today and was throwing up a bit more than usual. She was still in good spirits and loved all the visitors that came by, but it was becoming apparant that she wasn't feeling super hot. After one upsetting mucous-ejection, Kris insisted she get some pain killers. I didn't say anything; I hate this part. I know it's that time and I hate having to give my child opiates. We chatted with our nurse about getting her morphine, but she gets so itchy and crabby on morphine. They decided to give her hydromorphone, which is a hypo-allergenic version of morphine. It doesn't have the side effects and is considerably stronger.

We made dinner while we waited for the drug to be approved and sat outside her room to eat our "feedbag" salad. Eleanor refused to settle and would wake up every few minutes. I kept going in to pat her bum and help her sleep. Finally at 6:45 our nurse came in to give her the hydromorphone. It was a low dose and was set to infuse over a 20 minute period. When the machine beeped to indicate it was complete, I came back in to the room to silence it and check on the baby. Her chest was barely moving and her eyes... oh God. Her eyes were rolling around in her head. I lifted her arm and dropped it to see if she would wake. She didn't stir. I went to ring the bell for the nurse and I contemplated pulling the alarm out of the wall. No, be calm, a voice said in my head. She is still breathing. I rang the bell and a nurse came immediatly. "She doesn't look right" I heard my voice say, though it sounded tinny and far away. She took one look at Eleanor and said, "I'll get the doctor".

The next thing I know, our room is filled with nurses and the doctor. The lights are flicked on and equipment is being hauled in. Commands like "get the bag ready" and "what are her sats? Get the sat monitor on her" were being called out. I removed her foot from her new green sleeper so they could put the monitor on her and stepped out of the way. Tap, tap, tap. "Hey Eleanor. It's time to wake up!" Tap, tap, tap. "Hey little girl!" Shake, shake, shake. Nurses were standing at the ready with difibulator pads and breathing contraptions. "Eleanor?" Her eyes flew open and looked wildly at all the faces above her. A sigh. A breath of relief. From me? From the doctor? I'm not sure. It felt like the walls of the room were sighing out the tension. Almost instantly her eyes fluttered closed. "Oh no you don't!" laughed the doctor, and rubbed her tummy to keep her awake.

For the next half hour, we kept her awake. She was so stoned, but her sats were good, her heartrate was perfect and her blood pressure was a little low, but still decent. The staff reviewed the dose and why she would react so strongly to this drug. No one really knows, but they are cutting the dose in half next time, which is a big relief! What a fright we had. My poor little bear! I hate seeing her like that, all wide-eyed but not seeing. She's fine now, snoring away next to me, and is definitely feeling no pain.

Quick Clinical Update

2011-09-15T23:47:00.000-07:00

On Monday she learned how to bang a drum with the music therapist and worked her pincer grasp with the occupational therapist. She had another session yesterday with physio and OT and it's amazing to see how strong she is getting. She's not normal nine-month old baby strong, but she is getting there. She sat up for a good 30 minutes today with minimal to no assistance. Everyone on the ward is talking about her. And we've learned that she's definitely not in to rolling. I think that ship has sailed. She will have to figure out another way to locomote. Her legs and arms are very weak still, so crawling and walking will be challenging, but not impossible. She has become very vocal over the past week - probably because daddy is here and she is trying to mimic his mile-a-minute speech pattern! Sometimes she babbles away and it sounds like words. Everyone in the room will stop and look at each other like, "what did she just say?" Eating solids are still a challenge. She seems to be okay with oatmeal, but most everything else I have tried her with has come back up. Yuck.

We are in this grace period between chemo and when her blood counts drop and we are enjoying every second of it. Lord, this child loves her daddy! It's really sweet to see them together. Kris and I have felt like ships passing in the night for the past little while, so it is nice to be able to spend time together as a family, even if we are confined to the ward. It's been an incredible week with our little angel.

Chatty-Chatty Self-Self

2011-09-13T23:06:00.000-07:00

I love fall. It's a time of new beginnings and fresh starts. The crisp, clean air, the crunch of leaves underfoot, the smell of new notebooks... For the past several years, fall has meant fall race season. I love racing in the fall more than anything. All summer long, I put in long hours and mile after sweaty mile on the pavement. I burn through running shoes faster than I can make enough money to buy a new pair, and it is all in anticipation of lining up with thousands of like-minded idiots who run in circles so they can live longer. It's a beautiful thing. I love how I get faster when the temperature dips. All of a sudden my legs are lighter, my lungs are bigger and my heart sings with each step.

I hit the trails today with Krystal and for the first 3km, I was flying. I had that sense of jubilation, of freedom that I get with fall running. Then cold, hard science kicked in and said, "Hey jackass. You didn't run at all this summer, so who are you kidding? Here are some cramps and wheezing lungs. Sort it out." We cut our run short and I came back to the hospital.

Like this run, I am starting to struggle. I feel like those first few easy miles are over, and now I have to contend with some ugly stuff. I think a lot of it has to do with the changing seasons. I have not just spent a month in hospital, or even a few months. I have spent an entire season here. That is a lot to swallow. Don't get me wrong; I am happy to hold and comfort my baby girl. Seeing her smile and grow and get better is incredible - it doesn't matter where you are. But selfishly speaking, it is hard on me to be here. I'm not sick, and yet I live in a hospital. I don't have a job, I don't have a home, I don't have a husband half the time and the loss of self is disarming. I feel powerless with a loss of control. I don't decide anything anymore.

I'm not afraid. I have a very good support team of friends and family. I also have the best and brightest second line sitting on the bench, and they are the staff at the hospital. But it is up to me, really. I can fall off the pace and let my head win, or I can put one foot in front of the other and run to the next crossroad. Once I make it there, I can lift my eyes up and pick out another milestone, and set all my energy to reaching that point.

This is a marathon, and distance running is 90% mental and the other 10% is (also) mental.

1/3 + 2/3 = ...

2011-09-10T23:16:00.000-07:00

My daughter is nine months old today and she has spent exactly 1/3 of her life in hospital. Happy nine month birthday, little bear! Happy (?) three months in hospital! She spent the day with her Grandpa while mummy got out to enjoy the sunshine. He must have bored her with his stories as she was fast asleep when we returned. Nice one, Dave!

Eleanor's testosterone level dropped again, which is wonderful news. Our doctor, who was dubbed by another family as Dr. Doom and Gloom, says it is very, very likely that we will see an improvement in her lungs on the next scan. For him to say something positive is a big deal, so we are allowing ourselves a little pleasure in that. She is quite sick from the cisplatin, but that should subside in a day or two She puffed up a whole kilogram from the fluid they have to run when she gets chemo, but has been peeing (literally) like a racehorse. I wouldn't bring this up (who really wants to hear about baby pee?), but I am so proud of her remaining kidney. She hasn't needed any help flushing the excess hydration since a week post-op. Go little kidney, go!

Eleanor rubbed off the last of her eyelashes today. They have been thinning for a long time, but now they are all gone. She had crazy long, dark eyelashes which must have been part of the testosterone, because she did NOT get them from Kris or myself. I'm a little bit sad to see them go. Her hair is thinning elsewhere, but she is far from hairless, though I'm sure she will get there eventually. Then she will be my little bald bear.

Kris has finished his antibiotics and is feeling much better. He will be back here tomorrow and will stay for a whole week. I am looking forward to this as our last visit was cut so short. And because he does our laundry... so much laundry!

Laundry

2011-09-07T22:02:00.000-07:00

My support team is sick. Kris is sick, my mum is sick and this means my laundry doesn't get done. I have organised our little room so that I can hide the growing pile of dirty clothes behind a suitcase, which is behind a rocking chair. Out of sight, out of mind. Nothing in there is stinky, so no offending odours can give me away. It just keeps growing and growing.

Like my gross pile of clothes, Eleanor has been busy accumulating things of her own. I like to call it the "anything that can wrong, will go wrong" laundry list of maladies. If any parent had anyone of these things, it would be traumatizing, and Eleanor has all of them.

Cancer
Cushing's Syndrome
Missing kidney
Enlarged heart
High blood pressure
High frequency hearing loss
Blood clot in heart

She is on some form of medication or treatment for all of these, and I have recently learned that the easiest way to administer her anti-coagulant is to inject her with it twice a day. Okay. And how long will she be on this? One of the doctors mentioned 3 months. No? More like a year? Okay. And any time we are away from the hospital I have to inject it? Okay. So BP medication every 8 hours, oral chemo every 6 hours, anti-coagulant injections every 12 hours, steroids every 12 hours and don't forget her stress dose injection if she goes into acute adrenal shock. Okay. Keep adding on to that list. Heap illness on top of sickness on top of ailment in a pile behind the suitcase, behind the rocking chair. It's too bad I can't wash this list out with soap and be done with it.

On a totally unrelated, but very important note, I must say a big heartfelt THANK YOU to Natalie DeGoey and her friends at Best Buy who hooked me up with a brand new netbook! It's very exciting to use a computer again, though it is taking me awhile to get used to it. It's been a long time since I have used a computer!

Survivor

2011-09-05T13:50:00.000-07:00

We found a survivor.

Her name is Hailey. She was two years old when diagnosed. She showed the same symptoms and had a tumor on the same (left) adrenal gland. She had it removed and went through six rounds of chemo and had a couple of surgeries to remove the numerous mets in her lungs. My heart is soaring thinking about her. Her odds were so low and she is a healthy, happy, cancer-free six year old.

We need these happy stories more than ever these days. As we approach the next round of chemo, we have to hold hope close to our hearts and pray for some improvement in her condition. We've had a couple of setbacks this week; nothing major but enough to rattle our confidence. We were preparing to be discharged on Friday, when the results from her heart echo showed a clot in one of her valves. It was from her central line and moved into her heart. It's not causing any problems right now, but it does have the potential to break off and move to her lungs, which is quite dangerous. They put her on an anti-coagulant and kept her in hospital for monitoring. It's so hard not to be disappointed. Kris is taking it especially hard and has gotten himself sick over it. Well, maybe not, but either way he has come down with a cold and can't be in the hospital. Kind of a bummer as it is the long weekend and he could've had a whole extra day here.

Another setback is Eleanor's weight. She has been steadily dropping weight since she came, which is good, as she was technically obese, but now she has fallen off her percentile for height and weight. She is now being supplemented with overnight feeds and I can't keep up to her needs and they won't provide me with donor milk because she can tolerate formula and the need is greater elsewhere. I am gutted about this. I am pumping as much as I can so that they can do half breastmilk-half formula, but I still feel like such failure. It was my milk (plus the steroids) that got her so fat in the first place! Oh well. The important thing is that she eats/gets nourishment from somewhere.

These are just minor setbacks, really nothing to be worried about, but coupled with the unknown makes for an antsy mummy. Provided this coming round goes well and her scans come back showing improvement, we can bank on another six rounds of chemo. That means another nine months in hospital. Holy shit. We are approaching our three month mark, and I am already starting to lose my mind! But if that is what it takes to get my baby healthy, then I'm fine with it. Sometimes it feels like we have so many obstacles in the way, and time moves at such weird intervals, I just don't know if I'm coming or going. It doesn't help that we are stuck inside on the most beautiful weekend of the summer! Bring on the cold and the rain; at least then I won't feel like I am missing out on anything!

September

2011-09-01T22:54:00.000-07:00

I seem to have destroyed my thumbs from spending so much time on my phone. It hurts to type, but I wanted to give a quick update. Eleanor is doing much better after a fairly terrifying week. She was really doped up on morphine to manage her pain, and they have carefully weaned her off over the past 48 hours. The docs are saying we can go home for the weekend but she has to be off the morphine (check!) and back on the boob (oral feedings). The latter is a bit of a problem, as she is not super interested in eating still. Her blood counts are up and it's quite clear that she will be ready for round 4 by Tuesday. Where is the time going? It's September today! We are very quickly approaching 3 months in hospital. Mind boggling.

More ibuprofen and rest for my thumbs now...

Welcome Wagon

2011-08-29T13:24:00.000-07:00

On Kris's insistence, I had to be nice to the neighbors this weekend. A new little baby was admitted to the ward, and Kris thought the mum looked shellshocked and I should go to talk to her. Lots of women welcomed me when we first arrived and we decided it is my turn to help out. I drew in a deep breath and rapped on their door. The scene that awaited me was truly breathtaking; a beautiful girl with long golden locks sat cross-legged on the crib, breastfeeding a tiny baby. The setting sun created a halo around them - it was like a living, breathing Madonna and child. So naturally I became tongue-tied and awkward. She was very relaxed and tells me they are (not surprisingly) from Nelson. The baby has a tumor on her kidney and all the scans and such would be performed after the weekend. Total newbies, no idea what is going on or what is going to happen, so I start rambling about my experience and my sick baby. What the hell was I thinking? That poor girl. Their story is already so different from ours as we took two weeks of critical care in ICU to be deemed stable enough to be on the ward. They skipped that step entirely! I finished every sentence with "but everyone's case is different" and hoped that would ease the fear that was slowly creeping on her face. I am not a welcome wagon. I don't think I will be doing that again soon.

Since then I have been hiding in our room, trying to keep this girl from seeing Eleanor in all her distressed glory. She had a really rough weekend. Her mucousitis flared up, which means the lining of her digestive tract has been eroded by the chemo and she has meters and meters of inflamed tissue/sores. I have been sitting by her side, suctioning out gobs of mucous to prevent her from aspirating. She is on a morphine drip to control her pain and Benadryl to control the side-effects of the morphine. She has had brief periods of consciousness and she spends them crying or tripping out on her toys. It's pretty horrific, and is the exact opposite of what a newbie should be seeing. Today, however, her neutrophils are up from 0.00 to 0.02 and the secretions are subsequently improving. Just a few more days of misery and she should start feeling better. Maybe then I will try again to be nice.

Numbers

2011-08-27T21:02:00.000-07:00

Today is all about numbers. Our attending GP was quite chuffed about Eleanor's hormone levels from her last test. She handed me a piece of paper with all the numbers from all the tests since being admitted and while it may just look like a bunch of numbers, it brings me incredible joy. Basically, her levels are lower than ever (yay!) and therefore closer to normal baby hormones. While the levels dropped dramatically since removing the tumor, there is a clear rise between rounds two and three. This is not good, but it shows that the chemo supressed the cancer initially and it pinpoints the moment the chemotherapy stopped working. It also means that the cancer growing in her lungs is still acting like the original tumor, and is secreting hormones like her adrenal gland. That kind of blows my mind. Is it weird that I find the nature of my daughter's cancer fascinating?

Another number we are focused on today is her temperature. After 36 hours of discomfort, she spiked a fever. It's the first time she has ever had one, cancer or no cancer. They drew some blood for cultures and put her on antibiotics right away. She also got some Tylenol paired with her morphine, and I am told that this is a very effective pain-reliever. Now we just wait and see if anything else develops. Poor little bear. She is definitely struggling, but according to her previous numbers, her white blood cells should start coming up in 3 or 4 days and she will start feeling better. Fingers crossed that she doesn't have an infection!

Shameless Idealist

2011-08-26T12:47:00.000-07:00

Last night was eventful. Every hour, on the hour, Eleanor's poor little body would wake her up and eject everything from her system. She got a dose of Gravol at 3 and we stopped the continuous feeds. That gave her about two hours of peace. I begged the nurses at shift change to give her some relief, but they had to wait for the doctors to show up before giving her morphine. She's been quite a bit better since then, but she still can't tolerate any oral medication. I hate having to resort to narcotics to console my baby, however I am glad she is more comfortable. She is now having a snooze next to me and it is nice to hear little snore.

Before all this drama last night, I read a case study of children under the age of 20 who had ACTs (adrenal cortical tumors). It's pretty crazy stuff, but it was interesting to learn that of this super rare condition (affects 0.3 in 1,000,000 children of non-Brazilian decent), Eleanor is actually the norm. It tends to strike female babies under the age of 3 and is usually present on the left side. I also learned that it is most likely a genetic mutation, but we won't have confirmation on that for a few more weeks. This study looked at the staging and prognosis of children with this condition and was essentially a death certificate for my child. Her tumor was too big, her Cushing's too pronounced, her metastasizes too rampant for her to survive.

So I am choosing to be a shameless idealist.

Shameless idealism is one of our core values at Free The Children and was emblazoned on our staff shirts at We Day. We are an army of warriors, out to better the world. We inspire young people to join our cause and change their way of thinking. We challenge them to be the change they want to see in the world. The Merriam-Webster dictionary describes idealism as a theory that ultimate reality lies in a realm transcending phenomena . I want that now. I want to put aside all negative thoughts and throw myself behind the cause of Eleanor's survival. So what if her odds are around 15%? Why can't she be one of those 15% that pull through? Someone has to survive this; why not her? She has done so well so far, I believe she can do it.

I'm going to hold out hope that my little girl will live.

2011-08-25T10:00:00.000-07:00

It's been a very busy week for us. I have been very taxed emotionally and have been processing lots of clutter in my head and heart. I'm very lucky to have had my mum in town and the Red Cross volunteers helping out while I purge myself of icky feelings. Purging has come in many different forms; I ate super spicy food; I cried at a movie; I bitched to my friends and I went for a swim at Kits pool. Swimming is the best, but that pool takes it to a whole other level. For those of you who have never had the joy of swimming in this pool, allow me to indulge you. It is a salt water pool over 125 meters long and is perched above the ocean. It has a clear view over to the North Shore Mountains and it is heavenly. I felt very Mad Men-esque as I exhaled all the oxygen out of my lungs and sunk to the bottom of the pool. I allowed the water to engulf me, cleanse me and rejuvenate me. I felt so much better afterwards.

Baby girl's white blood cell counts dropped today. Part of the reason of my funk earlier in the week was because her counts were so high, just like last time, and the last round didn't touch the cancer. I drew the conclusion in my mind that healthy baby = healthy cancer. I have since been told that this is not how it works, and her high blood counts mean her bone marrow has not been exhausted by the chemo. I asked if we could up the chemo and the doctor was vague, but she did say we will be able to go home between rounds again! And this time it might be for a whole week! I would love to get home and get my life sorted. It's very difficult to keep on top of everything from a hospital room. I wonder if I could hire a personal assistant and pay them with Monopoly money...

Anyway, Eleanor is doing great despite her immune system being compromised. She's happy and eating and working hard at sitting, but is very much interested in her feet and face-plants a lot. She is very weak. It will be a long, long time before she crawls or cruises or locomotes in any real way, but it's just me that gets upset about it. She doesn't mind at all! Bless.

Round 3 complete

2011-08-21T19:53:00.000-07:00

The wireless network is down this weekend, so I am writing this on a computer. How novel! It means that I am away from my baby, which makes me increasingly nervous. I am going to make this short.

Eleanor has been spectacular in her response to the chemo or, as her godmother put it, her big girl juice. All the doctors and nurses are nodding their heads in approval, which is nice to see. Her nausea is under control and she seems in good spirits. She's still eating and breastfeeding, but not huge amounts, so she will be supplemented with breast milk feeds through her NG tube. Yup, I'm still a Nazi about breastfeeding! I think the staff are getting sick of me as I am always requesting bottles and caps, labels, pumps, pump kits etc etc. It would be so much easier (in their eyes) to just give her formula. Oh well. I'm pretty easy-going for most things, so if I have to stick my neck out on this one, I will!

I thought I would add a photo (because I can!). Here is one of us before she started her chemo treatments.

Good night!

Braveheart

2011-08-19T16:06:00.000-07:00

Well, she survived the doxorubicin. She's so tough. There were some irregularities with her heart which concerned one doctor but not the other, so an ECG was taken. Everything came back normal, well as close to normal as Eleanor is going to get, and she is happily resting.

I had a brownie. It was as delicious and satisfying to my soul as one could hope.

Only one more scary day to go!

Doxorubicin Day

2011-08-19T11:17:00.000-07:00

Doxo is being administered right now. We didn't have to move to the cardiac ward, but she is hooked up to telemetry. It'll take about an hour. Our nurse is waiting in the room with me; the babe is sleeping. She's had a big morning with daddy.

I'm a little stressed, so I am catching up on my celebrity gossip. Can you believe Kim Kardashian wore white to her rehearsal dinner? Will her Vera Wang wedding dress be white as well? Oh, the suspense is killing me! (Please insert overly dramatic eyeroll here)

Hmmm...maybe I will get a brownie from the fridge...

Shhhhh...

2011-08-17T19:29:00.000-07:00

Baby is sleeping.

I have so many photos of Eleanor sleeping. There is something so adorable about babies when they sleep. I tend to keep her swaddled so she won't tug on her lines or her NG tube, and she looks so cute with her big, fat head poking out of her sausage-bundle body. Since being in hospital, I have learned that there are many other ways of putting a baby to sleep that don't involve falling asleep on the boob or screaming for an hour. It would appear that I have been doing it wrong this whole time. Amazing stuff.

She has been pretty tuckered out today and napping quite a bit. She started cisplatin yesterday afternoon and etoposide last night. The etoposide was annoying because they have to check her blood pressure every 15 minutes and it is notoriously difficult to get a proper reading on a baby, especially my little fatty. She did not appreciate being unswaddled and constant "arm hugs" from 10pm til 11pm. She is tolerating the cisplatin fairly well. They pump her full of fluid to help prevent her remaining kidney from becoming toxic, so she has gained a kilo overnight and is peeing constantly. Cisplatin is extremely nauseating. She has thrown up quite a bit today, but only when the drug is being administered; she's pretty good otherwise. Tomorrow is just etoposide and doxorubicin on Friday and Saturday. Still no word if we are moving to 3M for that drug, so I haven't unpacked us. I quite like our room; it's nice and big, but our window looks on to the tv area in the playroom. Oh well. It could be much worse! At least we aren't in the broom closet again!

All in all, we are feeling okay. I think our little break at home did us a world of good, and we are ready to take these pesky dragons on again. As the doctor pointed out yesterday, two rounds is still early in the game, and we have an opportunity to turn this around. Onwards and upwards, little bear!

Mañana

2011-08-15T22:53:00.000-07:00

Yesterday was Sunday and I didn't go to church. I never go to church, but it has been weighing on my mind more and more lately. I am not a religious person. A long time ago, I put my two feet on the ground, looked religion square in its stained-glass eyes and said, "no thank you". I didn't buy it. My knowledge was clouded and was mostly based from Jesus Christ Superstar and Godspell. That said, I do have a soft spot in my heart for Anglican hymns. I did quite enjoy singing my lungs out at 8am in school chapel. Nothing like a rousing hymn to get your blood pumping before class. However, my young brain connected the dots between cult and Christianity when I heard on the news about Heaven's Gate. I didn't want to be like those people who "drank the koolaid" so I decided it was not for me, and when you die, you are worm food.

But how do I continue to deny it when I hold a living, breathing miracle in my arms? Eleanor should have died that first week in hospital and she didn't. All the numbers and odds were against her and she is still here.

I hate the expression "born again", and I don't think it applies to how I am feeling. It's more like an awakening, which is much quieter than the act of being born. And (as I stated above) I was never much into this before. It's just a quiet, peaceful discovery that perhaps there is a bigger plan for us, certainly there seems to be one for Eleanor.

I have been following a blog of a mother, not unlike myself, whose daughter has a degenerative brain disease and has lost her sight and her ability to move. She is palliative and is not supposed to live past two years of age. This mother refers to her baby as her teacher, and I think that is such beautiful sentiment. I am not sure if I am there yet. I have a lot of anger in my heart still, but it only lives there because I can't handle how sad this situation makes me. I pray that I can get to that level of understanding. I pray that I can take each day as it comes with joy and be grateful for the time I have with my baby. I say thanks for every moment we have shared together. I'm not sure about any deeper meaning behind our existence but I understand the importance of NOW. The past is gone, the future is uncertain, and today is a gift. That is why it is called "present".

Maybe I don't need religion, I just need more Kung Fu Panda!

I wanted to write this post, sitting at my computer and adding lots of photos, but I am typing this as I always type these: overtired, on my phone, and in bed. I also wanted to write about all the adventures we have had while out of the hospital, but I think I will save those for another day when I am feeling blue. Tomorrow we head back into hospital to start the next phase. Tonight is for regrouping my thoughts and enjoying our last moments of "freedom".

Thanks for today.

Look at all my trials and tribulations

2011-08-12T22:30:00.000-07:00

Sitting on my sofa, watching Jesus Christ Superstar, my wolf dog sprawled at my feet, my belly full of spicy samosas, my baby sleeping in her crib.

Don't disturb me now I can see the answers
Till this evening is this morning life is fine

Heaven. Atia was so calm when I saw her. I didn't fuss her, but it was like lovers connecting in slow motion. Long looks from across the room; we approached each other with trepidation. Do you remember me, my old friend? I missed her so much. I can't wait to go for a long walk with my family tomorrow, maybe get a cornmeal muffin.

Sleeping tonight may be challenge without my Smelly in the crib next to me. I've always been sensitive to her over the monitor, but I am not used to all this space between us! Kris has offered to do the overnight meds so I will be able to rest.

I'm going to take advantage of that. I just want to see the Superstar number... Oh, how great is it to be home!!!

Mixed blessings

2011-08-11T21:33:00.000-07:00

We have a lot to be thankful for today. Although the news of the growing nodes in her lungs is devastating, we also found out that her kidney function is thisclose to normal and her heart is much, much improved. The chemo missed the mark, but if we had hit harder the first two rounds, those two organs wouldn't be where they are today. Now we are able to hit her with the proper dose (she was only on a half dose before).

Her chances of survival are much slimmer now. This is a reality we are facing, but we are solidering on for two more rounds of rock'em sock'em chemo and then taking stock after the next scans. We have the gift of today and we have the gift of tomorrow. And that's pretty much where we are at.

She sat up unassisted today.

God, I love her so much.

The Hungarian Horntail Dragon

2011-08-10T20:42:00.000-07:00

The chemo is not working. There are more nodes in her lungs. Her case is being brought to tumor board tomorrow and we will have another family meeting afterwards. Her kidney and heart are still a major concern.

Our hearts are breaking. Her angel wings keep getting bigger and are threatening to fly her away.

Please keep her in your thoughts and prayers.

Wednesday.

2011-08-10T09:36:00.000-07:00

Wednesday is here and so are we.

After getting very pumped up on Monday about our impending dishcharge, our plans have come to a complete halt. I chased down doctors and nurses yesterday to find out the results of all her scans and when we could leave, and no one had a clear answer for me. They had to talk to Dr. Schultz. Dr. Schultz had to talk to radiology. Her scans can't be interpreted easily. Okay, but why does that change us going home? It's her counts that count (Ha. Ha. Ha.) and those are fine. The only reason I can think of is that her lungs are much worse than originally speculated, and Dr. Schultz wants to have another "family meeting" to discuss her prognosis. Or maybe it's not cancer in her lungs at all, and they need another specialist working on her case. We already have oncologists, cardiologists, endocrinologists, nephrologists and radiologists so why not throw in a pulmonolgist as well? That's a thing, right?

I'm really volatile today. I can't express how angry I feel. It's not warranted for the situation, I know that, but it's there nonetheless. It's coming from a place of deep sadness and fear. But please don't try to make it better. If you see me coming, look away. Do not engage me. Do not allow me to indulge into this pit of angry despair. I will be better by Thursday.

Wednesday?

2011-08-08T21:07:00.000-07:00

Wednesday?!?! We could be going home as soon as Wednesday!?!

Unreal!

Eleanor is kicking ass and taking names. Her counts skyrocketed today which means they went as low as they were going to(which wasn't very low), and are on their way back up. She did really well during her tests today, too. She had a chest x-ray and then she was sedated for a CT scan and an MRI. When she was coming out of sedation, she went for an echo of her heart. Whew. I'm exhausted just writing that! She still has her GFR tomorrow morning and a date with the audiologist (date and time TBA). Nobody has talked to me about the results of any of these tests, and I am keeping my fingers and toes crossed that they are good.

Oh, and I should mention that when she came to, she also had a photo shoot. And she loved every second of it. That girl of mine...

Honourable Discharge

2011-08-06T10:54:00.000-07:00

It's official! We're going home!

We have been given approval to leave the hospital before her next round of chemo. I can't even believe it. We were originally told that we wouldn't be able to leave until after Christmas! We are still waiting for her counts to bottom out, which is taking longer than last time, but it looks like we can leave next weekend.

It's a daunting week to get through. Not only will she be without an immune system, but we have to do a CT scan of her lungs, an MRI of her belly (both scheduled for Monday morning), a GFR and an echo of her heart. Yikes! A lot of information will be gathered from these scans and will give us an idea of how to move forward. This type of cancer is very aggressive and our oncologist is anticipating that it has moved to her lungs. I am cautiously optimistic; she just doesn't seem like a baby with stage 4 cancer. I guess I don't know any babies with advanced cancer, but she doesn't seem that sick. Even the chemo can't take her down! Either way, we will know on Monday, and then home on the weekend!

Keep up the great work, little bear! We're so proud of you!

Blue Skies

2011-08-04T21:31:00.000-07:00

Blue skies smiling at me
Nothing but blue skies do I see

Bluebirds singing a song
Nothing but bluebirds all day long

Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When you're in love, my how they fly

Blue days, all of them gone
Nothing but blue skies from now on

Summertime has finally arrived on the West Coast. I've been lucky enough to get on pass and enjoy the sunshine. While Irving Berlin may be the soundtrack ringing in my ears, it's not necessarily the song in my heart. Those blue days may be gone, but blue skies aren't as clear as they seem and the haunting melody echoes more true than the charming lyrics. As Eleanor continues to thrive and defy odds, I find myself riddled with sadness and loneliness. I have so many wonderful friends and family members but my heart is not whole without Kristopher. I miss him. I miss my dog. I miss the little home we were building with big dreams.

I moved away from acting because my dreams changed. I turned my back on what I thought was my calling and pursued a different path because I wanted it to lead to babies and puppies and sleepless nights with lots of "duddle" time. I wanted a house with a yard and an army to run with. It was a vague shadow of a dream that was drawn into focus with Kristopher's keen eye. And now it has all been put on hold. More than that, it feels like it has been ripped to shreds. It's so hard. We were getting so close to where we wanted to be and now we cling to what was, what could be and what is left of our broken hearts.

People keep asking, "what do you want? What do you need?" I want my family back under the same roof, in the same city. I need my baby to get better. It's hard to not feel like you have been kicked in the proverbial nuts everyday. Somedays (like today) I need a proverbial jockstrap. This box of Girl Guide cookies will have to suffice. That, and a "good night" phone call to my love and a deep, dark sleep.

Bursting

2011-08-03T10:23:00.000-07:00

What a glorious, extra long, long weekend. Kris took a few days off work so we could celebrate our anniversary together. It was so nice to get some extra time with him, and Eleanor loved the added attention. It also made moving back to 3B extremely easy! That's right, we are back to "normal"! Well, the Parent's Lounge is still quarantined and all my food is in there, but aside from that, normal! What a crazy week, but as I said, having Kris around over the weekend made it so much better. We even made it out for an anniversary dinner!

I must interject my thoughts here and draw attention to some very special people. Last night I got a "poppy-inny" from an old, old, old friend from elementary school, Natalie. She came by with a bag of delicious food, and I panicked as Eleanor was trying to get down for the night, and I wanted to get some alone time with Kris, and she simply gave me a hug and didn't fuss and off she went. I am in love with this girl, especially as all the food that was given to me last week (thank you Steph and Yung!!!) is currently behind a sealed door! Anyway, Kris and I run off into the night and decide to go for dinner. We can't afford it, but it's our anniversary, so we indulge. We're halfway through our meal when an old, old friend from high school pops over to say hi. Graham is a lovely guy who helped me with my fundraising for the NYC marathon two years ago. He regaled us with stories of his next endurance challenge and gave us big hugs and off he went. Well, when we went to pay the bill, the waitress informed us that an old friend had taken care of it. That poor waitress. I burst out crying (and am starting up again as I type this) and pretty much fell apart in the middle of the restaurant. My heart aches from these acts and I wonder how can people be so good? I think of all the good people in Mocute's Lithuanian church in Toronto who don't know Eleanor, and yet they held special masses just for her. I think of a patient of my dad's who got her church to do the same thing. I am overwhelmed by how much love and support a tiny being can receive, and how Kris and I, who are really just two douchebags standing in her shadow, can also be the beneficiaries of such incredible love and light. Some days it is too much for my broken heart to take.

Eleanor has been great. More than great, in fact, she has been super. Her oncologist was lurking around the ward yesterday and didn't even stop in to see her. What's there to say? She's perfect. Her counts are still super high today, so we get another day out. I'm on my own, so I have no idea what to do. Hmmmm... Anybody want to play?

Missing In Action

2011-08-01T21:02:00.000-07:00

I feel like I have slipped behind on my posting. We have been going out on pass over the weekend, and the fresh air has knocked my socks off. It's incredible how tired I have been. Even now my eyelids are drooping, and it's not even 9:00pm. Eleanor is doing great. Her counts are really high still and they should start dropping over the week. Although it's great to get this time with her while she is still feeling so good, we are a bit anxious for her to dip as the sooner her counts drop, the sooner she will feel better and the sooner we can go home! Our docs are quite anxious to discharge us and get us back to normal life, even if it's just for a few days. I'm getting ahead of myself. I need sleep tonight to look after my baby tomorrow and tomorrow and tomorrow. Sleep!

2B or not 2B

2011-07-28T19:28:00.000-07:00

So we moved. Again. We are back on the oncology unit but in 2B instead of 3B. 2B has bigger rooms and is generally used for teenagers or kids that don't require tons of monitoring (ie: not that sick). Eleanor does not fit either of these categories and we feel a bit weird here. Like all these moves, it won't be for long, so we won't get too comfortable, which means we stay uncomfortable. Great. Feeling a bit despondent, angry and tired as a result. It is unfortunate because I have had a whole lot of love poured on me this week so I should be feeling great. Maybe if the kid with the guitar next door would stop playing emo-pop-punk music I'd feel a bit better.

Eleanor is coping with this much better than I am. She's sailing through this round of chemo with very little trouble. She is throwing up a bit, but that's about it. The few times she has done it, there has always been a plausible reason. Last night, for example, she promptly threw up after tasting her first Gerber baby food. It claimed to be chicken, and it had the most repulsive smell. What were they thinking? Do kids actually eat that? I would like to feed her single protiens for her iron, but it's really tough in hospital. I have given her rice cereal and lots of different kinds of fruit but that's about it. Next time we get out on pass I will concoct something.

Oh, and another reason Eleanor is doing so well might have something to do with her new boyfriend. His name is Spencer and he's a whole year older, but she adores him. He was kind enough to lend E some pjs after she barfed all over her last pair. Super cute. She could be screaming her head off but as soon as Spencer shows up, she gets very quiet and watchful. Her big eyes watch his every move. I think it's love! He's down on 2B as well so that's making it a bit more bearable.

Not much else to report - I got most of her barf on me so I should probably change my clothes. I wonder if Spencer has an extra pair of pjs for me as well...

Oh, come on!

2011-07-25T23:27:00.000-07:00

One thing I haven't mentioned here are all the "uh-ohs", the little mishaps that have occurred along the way, the things that make you smack your forehead and exclaim "really? Really?!?". There have been quite a few. Before we left ICU, our nurse wanted to show me how to change the dressing on Eleanor's central line. A central line is a tube that runs directly into her chest and can be used to draw blood or administer drugs or fluid. It is basically a permanent IV. Anyways, this nurse is changing the dressing and it's not coming off very well, so she attempts to cut it off and snips the line clean in half. It was an accident and it was fixable without surgery (thank God), but it seemed to be a cruel joke at our expense.

Then there is her nasogastric (or NG) tube. She pulls it out constantly, and it seems to cause us nothing but problems. Like during her neutropenic phase in her last round of chemo. She was sick as a dog, and the pH from her tube was coming back funny. They sent her down to xray and lo and behold, the end of the tube isn't in her stomach at all. It looped around her stomach and was six centimeters into her intestine! Anti-nauseates can't settle you stomach if they can't get into your stomach! And just over the weekend, the stupid tube wouldn't let anything through it. They thought it was clogged and apparently the best way to unclog it is with Coca Cola. So the nurses are drawing this beverage into a syringe when they pause and ask me, "you're okay with this, right?" Sure, I say, my infant daughter can have soda pop. Why not?! Turns out it wasn't clogged, it had a kink in it. They found this out when they removed it and replaced it for (shudder) the fourth time this week.

But tonight may take the cake in crazy, crappy things. A pipe burst above room 5 (also known as the closet we once called home) and the ENTIRE WARD HAS BEEN EVACUATED. They couldn't guarantee the air quality while they are repairing it so we are all in 3M. The trouble with 3M is that it is for cardiac and respiratory illness, so everyone is put on isolation to prevent kids with no immune system catching a serious reparatory infection.

I love this hospital. I love the staff. They saved Eleanor's life and are giving her a fighting chance, but this gets a big "really? Really?!!"

Please excuse the poor grammar. I'm a sleepy bear tonight!

Normal Baby Stuff

2011-07-25T13:06:00.000-07:00

What a great weekend. It's so lovely to have a "normal" baby! She's got smiles for everyone, she bounces when she's excited and she's enjoying her adventures in solid foods. Last night when I pulled her out of the tub I anticipated a freak out, so I quickly improvised a silly game. I buried her in a stack of towels and repeated "bundle bundle bundle!" and her mouth opened really wide and her eyes looked all crazy. My heart sank and I pulled off the towels to see what was going on, and she was vibrating she was giggling so hard! I thought something was wrong! I have never seen this happy baby before. I feel like we need a proper introduction. So, hello happy baby Eleanor, nice to meet you. My name is Kate and I was mother to a very unhappy baby for 6 months. Her name was Eleanor too, but she wasn't like you at all. She had sad eyes and a swollen body and was in a lot of pain. She was a brave, strong girl and we loved her very much. That said, we are very happy to replace her with you! It's impossible to think I could love anything more than you, happy baby Eleanor. I am very pleased to be your Mummy.

:-D

Her counts are way up so she will be starting chemo this afternoon. She's 6 days off her protocol, which isn't too shabby, and she is repeating the same dose as last time. This means we can expect the same results as last time, which is (for lack of a better word) nice. No surprises this time.

It's kind of crazy that we have been here a month and a half and she is just starting her second of eight rounds of chemo. This treatment is going to take a long time. Right now it feels like we are fighting an invisible foe. The tumor is gone so we are battling the microscopic stuff and those shadows in her lungs. I have a hard time wrapping my head around the fact that those residual cells could divide and conquer other parts of her. It just takes one cranky cancerous cell to ruin a perfectly good organ. Cancer stinks. She is due for a CT scan after this round, which will tell us how she is responding and if those shadows are still there. Anyway I'm getting ahead of myself. Let's just get through today and worry about tomorrow when tomorrow comes. Today is for drooly laughing babies and to all those people who told me "not to worry - it gets better", I finally know what you are talking about! Babies CAN be fun!

Day Passes!

2011-07-23T21:37:00.000-07:00

We have had an amazing couple of days. Eleanor's counts are up, but her platelets still aren't high enough to start chemo, so the sun has been shining and Mummy, Daddy and Baby have been on the loose! Yesterday started off with a visit from Auntie Trudi, which is always a delight but was made even sweeter because she brought homemade carrot cake. I adore her carrot cake, and I have been very good and have not eaten all of it myself. Yet. No sooner had Trudi jetted off and Eleanor went down for a snooze when a few friends from work popped in with lunch from Nuba! It was great to see them and get caught up on all the new endeavors at FTC. Certainly never a dull moment, and many of their projects brought a tear to my eye. I really love(d) working there. It's nice to be proud of what I do/did.

Anyway, after lunch we packed the baby up and headed off to the aquarium. We were a bit nervous that she might be too young, but she seemed to enjoy it. We held her up to the tanks and she was mesmerized by the brightly colored fish. She especially loved all the kids running around her. A lot of them stopped to stare at her, which we figured might happen. There is really no way to hide her NG tube, so...yeah. No big deal.

We got back to the hospital at 6pm and baby girl had a hard time going to sleep, so today we made sure we got out early. We drove down to Granville Island and spent a good few hours wandering around the shops and down the seawall. Eleanor slept most of the time, which was fine with us. It was a beautiful day here in Vancouver and it was wonderful to be out enjoying the sunshine. And I only cried twice! I'm such a baby. I couldn't take the kids at the water park. I want Eleanor to be one of those kids so badly. I want her to be able to strip down to her knickers and run like a banshee through a sprinkler, but she's going to have a tube coming out of her chest for a long time. She has to Saran wrap it just to go in the tub. I'm told by the staff it won't be forever and all the kids make do, but it still makes me sad. But we had a fabulous moment when a kind woman saw E's feet poking out of the stroller and asked to see her, so Kris pulled the sunshade back, and the woman didn't even flinch. She cooed over her and was totally normal. I'm sure she could feel the relief pouring out of us.

Upon our return to the hospital, we were met by our favourite resident, the lovely Krystal. Krystal and I went to the same high school and played on a few teams together, and she has been looking after us since our first night in hospital. She has been awesome. I can't tell you how great it is to have a familiar face when your world is collapsing. After Eleanor went to bed we retreated onto the deck for some dinner and carrot cake. I feel very lucky to have so many incredible people so near by. How great is it that Krystal happens to be on her oncology rotation? How lucky am I to have Jen and Clare, two of my best girlfriends, working in this hospital and popping in on their coffee breaks? It sucks that we are here. It's awful that Eleanor is sick, but it is a blessing to have such great friends, food and days like today.

Little help?

2011-07-21T22:23:00.000-07:00

Attention well-wishers! I have tasks for you! Here are a few things Kris and I could really use.

If you find yourself by our little house near the beach:

1) Help Kris with the housework! Eleanor will be going home on passes very soon, and that place needs to be spotless. Even just half an hour to help fold laundry would be extremely helpful.

2) Food! I am very worried about Kris's diet when I am not around. I suspect it is all junk. He really likes beef stew and roast chicken.

Should you find yourself near BC Children's Hospital:

1) Food! Single serving vegetarian dishes. Fresh or frozen, homemade or store-bought, one-time portion or enough for an army, I don't mind! I will eat it all!

2) Babysitting! As you can probably tell, Kris and I are leading two separate lives. We would love an hour or two on our own on a Sunday or Saturday afternoon.

In general:

1) PRAY

2) Give blood! I had no idea how many transfusions were required for patients undergoing chemotherapy treatments. It's in you to give! There are lots of people who need it.

This has been an all-consuming experience for us. We need help and are really terrible at asking for it and sometimes we just don't have the time or energy to make plans. If you are able to provide food, simply drop it off. If we are not around, leave a note and we will make sure to get in touch with you to confirm it found a good home! If you are able to volunteer time, text us that morning and we will let you know if it is a good day.

Even writing this makes me feel like a jerk. I hope it doesn't come across as a demand, like because you are reading this you have to help. That is not the case AT ALL. I just know that there are a few people out there who would like to help but weren't getting enough info from myself or Kris.

Thank you thank you thank you in advance, and thank you for your continued support. Eleanor is feeling the love and thriving!

Flow it, show it, long as you can grow it

2011-07-20T23:33:00.000-07:00

I was absentmindedly scraping some cradle cap off Eleanor's head tonight, and when I paused to admire the shiny pink skin I had unearthed, I realized I had removed all the hair in the area as well. I am trying not to feel bad about this. She already has a large bald spot on the back of her head that has grown from a quarter sized spot to a $20 bill. Her hair is everywhere. It's on her sheets, on her gown, in my mouth and in my hands. She's on her way to being a card-carrying cancer baby. But it seems that all the hair that grew because of the excessive cortisol and testosterone is less inclined to fall out in my hands. She is going to be the only cancer baby with big sideburns and a hairy back. I kind of love the hair on her back. It's so downy soft, and coupled with her squishy fat skin, makes for all kinds of wonderful cuddles.

It crossed my mind that I should just go to town on her scalp and get rid of all the cradle cap, and if all her hair falls out, so be it. But I can't do it. Even though it's just baby hair, and tons of babies don't have hair or it grows in like Friar Tuck, I am still sad to see it go. She was born with a full head of dark hair, just like her mummy. I fully expected her to be bald, but lo and behold, out she came, a raven-haired angel. It was like a covenant between us; she was really mine. Ah, evolution! "She looks like me, so I am less inclined to eat her." As she has gotten older, it has been growing in lighter and now shines gold in the sunlight. It's really lovely hair, but it is a bit silly to lament over it. I was just taken unawares that it would go so soon.

Sweet Freedom

2011-07-19T12:13:00.000-07:00

I got out for a run last night. The Red Cross have been amazing and are sending volunteers to watch Smelly for a few hours in the evening. My plan was that they would sit here while she sleeps but she really hates sleep at the moment, and would much rather show off her new found skill: screeching. I felt bad for the volunteer, but I am relishing my sore legs today. It felt so good to hit the pavement, even if it was cripplingly slow. It didn't hurt that it was the first sunny day in weeks, either. I am holding a lot of tension in my shoulders and my jaw and running really helps to get some blood flow going and loosen those areas. I feel like a new person today!

Eleanor continues to improve. She has been happy and cheerful for the past couple of days, which is lovely, but very tiring. She doesn't sleep much when she is feeling good, as it's really hard to create a quiet environment when you have people coming in and out all day. Sad to say, but in some ways it's easier when she is on morphine! She is guaranteed to nap like a pro when she is on that stuff!

She had her GFR (kidney function test) this morning, and depending on the results, she will be starting chemo very soon. I had a long talk with her doctor yesterday about what the next few months will look like, and he seems to think we will spend less time in hospital than originally estimated. That should be good news, but the more time we spend out of hospital, the more finacial burden is placed on us. All her meds are covered while we are here, and I have been warned that they are not cheap. We have been blessed with a few grants and perks through our social worker, but we will need a lot of help. I'll have to put my fundraising skills to good use! The fellow is coming in later today to discuss what this all will look like. They did warn us that everything is subject to change, but this was definitely unexpected! Free from hospital walls! Free! That's a four letter word!

Man cannot live on Johnson's Baby Shampoo alone

2011-07-16T22:26:00.000-07:00

So I got my hair did.

I was looking forward to this all week. Finally some ME time! I thought I could get away from the hospital and be free and mingle with the outside world. And for the most part that is what happened today, but I didn't realize how uncomfortable it would make me. I struggled to make conversation with the stylist and kept bringing everything back to Eleanor. I should have realized it was awkward when she offered to get me a magazine midway through. When it was all done, I sat at the bustop and patiently waited for my bus, the number 5. A stretch limo pulled up and four dashing groomsmen climbed out, followed by a gaggle of bridesmaids and a blushing bride. They were taking photos in the no-mans-land between Granville Island and Kits. They looked so happy. Even though we had the most incredible wedding, I was jealous of this couple. They have everything ahead of them, a clean slate. How did I get here? How do I get out of here? Two number 50s have passed me but my bus hasn't come by and I have been waiting for half an hour. I do a quick search and find that I am not waiting for the number 05, but the 050. How did I misread that? And why didn't those other buses stop? I'm sitting in the bus stop! It all draws me back to my feeling that I don't belong in the outside world. The whole outing left me with a bad taste in my mouth. I'm not anxious about leaving the baby, I just don't like being anywhere but the hospital. I don't want to talk to anyone outside the hospital. You have friends and romances and nights at the pub. You have work and family and extracurricular activities. I have Eleanor and Kris. There's nothing out there for me. Maybe I haven't reached that point where I am completely stir crazy. Who knows?

If ever there was a day to escape, today couldn't have been easier. Eleanor is doing great. We have nothing major to worry about, except high blood pressure, and she's on medication for that. But no infections, no viruses, no fever. Her counts are steadily returning to normal, and it looks as though she will be able to go ahead with more chemo this week, as per her protocol. She's back to being a happy baby and it's really cool to see her doing normal baby things. Speaking of which, she cut her first tooth! It's been a long time coming, and it made a few fake appearances in the past, but it is here for real this time! I'd say "she's getting so big!" but in her case, she is actually getting smaller(losing the Cushinoid weight=good thing) , so I'll say "she's growing up so fast" instead. Little turd. I can't upload photos here as I'm on my phone, but I have some truly great photos and videos of her experience that are heart-warming. Except for the nasogastric tube in her nose, she looks and acts like a typical 7 month old baby. And she smells like one, too. Maybe I can go a little longer with just baby shampoo...

Sleepy Time Bear

2011-07-14T16:42:00.000-07:00

Teary, red eyes greet me as I enter the room. "Mummy, I'm tired." It's okay, baby girl. I scoop her up in arms and bring her in close. Sweet Johnson's baby shampoo scented hair. Plump baby arms with soft smooth skin. Perfect little hands cling to my shirt. I dry her tear-streaked cheek with my own cheek. I feel her yield and settle her weight into my arms. Has she always been this darling? I hum a little tune and her sobs subside. I lay her down in her crib and the fussing begins again immediately. Twinkle, twinkle little star Like a newborn babe, I pull a blanket tightly around her in a swaddle. Up above the world so high She instantly snuggles down and allows her eyelids to close. I stroke her soft hair and pop her pacifier into her mouth. Like a diamond in the sky Pressing my lips to her forehead, I inhale the sterilized scent of the hospital. It is fast becoming a part of her. How I wonder what you are Her eyes flutter open as I step away. "It's sleepy time, bear." And she is sleepy. A few more grunts and protests and she agrees.

Rollin'

2011-07-13T22:43:00.000-07:00

We had some truly superlative tummy time this afternoon. We were working through some of her physio exercises, but baby girl had other plans. She rolled over! She hasn't done that in two months! Turns out her jerky limb movements aren't some morphine-induced spasm, it's just her being a baby. Great to see that she is feeling better.

I, on the other hand, feel like I have been run over by bus. I am not getting outside enough, and sleep is elusive at the moment. It seems like our nurse came in every hour last night, and Eleanor is so sensitive to him. If he so much as touches her feeding tube or her IV pole she wakes up, which wakes me up. So frustrating. It doesn't help that I stay up far too late writing blog posts or watching episode after episode of 30 Rock. That being said, I should put my phone down now and go to sleep...

Room 10

2011-07-12T23:36:00.000-07:00

We've moved again! I suspect we will move quite a bit during our stay here. Apparently we need to be closer to the nurses station so they can hear if any of her bells and whistles go off. They moved us to room 6, which is slightly larger than the broom closet/cell that we were in originally. While I was moving the crib and the cot around with the nurse, I inadvertently burst into tears. I tried to hold them back, but I couldn't help it. I couldn't put a positive spin on this tiny room with no outlets and no space for a chair to nurse my baby. As luck would have it, our social worker walked in to discuss an unrelated matter and saw my distress. She spoke to the charge nurse and had us move to a bigger room with its own bathroom. I love Pam. She gets RESULTS! So now we are settled in room 10. It's not as big as our last room, but it does have a view of the mountains and space for my very own breast pump!

Eleanor did great with all the moving around, probably because she is completely stoned on opiates. Poor little tyke was so uncomfortable yesterday that they put her on continuous morphine. It makes her sleep more than normal and she gets so cracked out when she is awake. She jerks her limbs around and has this wild look in her eyes. It's kind of weird, but it's better than seeing her in pain. She had both a platelet and a hemoglobin transfusion last night, and that has to be making her feel better. Blood products are the best. I wish I could get some - probably make me feel awesome too...

Her GFR (kidney function test) and heart echo are being scheduled for next week, and I am excited to find out how both of these organs are doing. Our oncologist thinks we will delay the next chemo treatment for another week after that so that her white blood cells can recover a little more, but we won't have to go down to ICU to administer it. She's too strong for ICU! It makes me a little sad because I am completely in love with the staff down there. It's not surprising; these people saved Eleanor's life. Sam compressed her chest when she had a heart attack, Mary pushed her through to surgery and Todd, well, Todd was the beast who carried our burden. He was a rock the whole time we were down there. I miss them.

Yep, the hospital is a weird, lonely place where unlikely friendships occur during times of great stress. I feel extremely lucky to have had such great people brush through my life, and they have been instrumental in helping us get through this. Pretty amazing folk, indeed.

Genius!

2011-07-10T18:09:00.000-07:00

Eleanor is 7 months old today! It's crazy to think that 7 months ago today I was just down the hall, huffing and puffing and swearing at all the nurses. Don't get me wrong; it was the best birthday I have ever had and my angel baby was the greatest gift I have ever received, but that labour stuff hurts! Today also marks 1 month in hospital. I haven't been home in a full calendar month, and I probably won't for many more. Aside from my dog, there is nothing there for me. My home is with my baby, and for now we live in the hospital.

She's had a rough couple of days. The chemo has hit her really hard and she is so nauseous. We seem to have figured out the best way to settle her tummy, and it involves 4 different anti-nausea drugs, 1 stool softener and an occasional bolster of morphine. I feel like it wouldn't be that bad if it wasn't for the damn Mitotane. She takes it 4 times a day and it makes her so sick. It's basically rat poison/insect repellent that blocks steroids and is only used for adrenal cancer, and since children and infants never get adrenal cancer, none of the nurses here have ever administered it or understand the side effects. So anything that is hard to explain or is out of the ordinary is blamed on the Mitotane. Her counts have also bottomed out. They should stay low for a few days and then start picking up again. The doctors are really happy with how she is doing, so we are too. It's hard when she is so sick, but knowing that the chemo is attacking the cancer as aggressively as her fast-growing cells brings a small amount of comfort.

In an effort to encourage Eleanor's development, we have been getting her up in a tumble-form seat. It's quite tiring for her at the moment, so we sing songs and play with toys to keep her amused. Then Kris thought to bring over her Baby Einstein DVDs. We have a stack of them at home, courtesy of Grandma Dana, but I must admit I was skeptical. Despite the fact that they are insanely popular and have made Disney a TON of money, I wasn't sure how I felt about putting a baby in front of the tv. Well, after spending a month in hospital that's all out the window! These things are CRAZY! It's just a video of different toys set to classical music, but it's like crack-cocaine to the baby. She is 100% transfixed on the screen the whole time! She loves absolutely loves them, and it's great to have lots of quiet activities we can do in her room. Well done, Disney! You win this round!

Long nights

2011-07-08T14:46:00.000-07:00

I do not like my daughter vomiting. I do not like staying up all night because I hate the feeling of waking to hear her vomit. I do not like that I have trained myself to delay responding to her cries, and she is crying because she needs help. I do not like blood in her vomit. I do not like blood in her stool. I do not like middle-of-the-night platelet transfusions for said blood. I do not like my heart pounding in my chest, pretending to sleep because I am so scared as they set up her transfusion with flashlights. I do not like that she refuses to eat. I do not like that her feeding tube was not in her stomach where it should have been, but instead is being snaked through her intestine towards her colon. I do not like that this could have been the reason she was so ill. I do not like that they moved it, and she is still vomiting. I do not like myself very much right now because I have been adequately prepared for this, and I am still frightened.

I do not like cancer. I do not like chemotherapy. I do not like this.

My daughter has adult cancer and I am acting like a baby. Nobody said this was easy. Everyone said it would be this hard.

But I love my husband for taking her around the hospital in the pram. I love that he filled the pram with her toys and protective sheets in case she gets sick again. I love him for giving me a much needed break. I love him for being such a great dad.

Breathe.

Everything sunny all the time always

2011-07-05T18:01:00.000-07:00

Mmmmm. The sunshine warms the back of my neck as I sit on the rooftop patio outside the ward. Children laughing and playing warms my heart. The sky is so clear, it looks like I could reach out and touch the North Shore mountains. It's like today was made for me. I can't stop smiling.

I have been overwhelmed by the support that continues to pour in from around the world. Eleanor is a popular little girl! She must sense it; she certainly soaks up the attention from the nurses and doctors and hospital staff. Her big, bright eyes watch each person who enters the room, and she coolly examines them, and deems them worthy or unworthy of a smile. Men seem to get the most smiles, much to our dismay. I hope this isn't a trend that will continue into her adolescent years!

But seriously, the support is amazing. Whether it's a card or a gift or a thought and a prayer, they are all very much appreciated. I wish I had the time and energy to thank everyone individually, and I will do my very best. My hope is that Eleanor can thank everyone herself, so I won't have to!

On days like today, however, I don't need anything. My baby girl had three solid naps, lots of wet diapers and some quality playtime. I get to sit out in the sun! Who could ask for anything more?

Sicky

2011-07-03T23:20:00.000-07:00

I was just re-reading my previous post, and I realized there is a mistake. I said that Eleanor hadn't suffered any side effects from the chemotherapy. What I meant to say was that she didn't have any heart problems or die. NOW we are starting to see the side effects of the treatment. Poor little bear threw up three times today. The first time it happened, I was so freaked out. She made these awful gagging noises which are only made worse by the feeding tube. After the third time they gave her some Gravol and she is sleeping peacefully. She looks so beautiful when she sleeps, even with her mouth hanging open and her sweaty head mashed into the mattress. My little girl.

3B

2011-07-01T20:54:00.000-07:00

Eleanor came through her first round of chemo like a champ. Granted, it was a small dose, but she didn't have any major side effects. She is doing so well that they sent us back up to the ward a day early. Great!

She is sleeping peacefully next to me after an exciting day with Auntie Trudi and Daddy. She is also receiving a blood transfusion. She's having a hard time pumping oxygen through her blood because her red blood cells are down, which means her heart rate and her blood pressure are elevated. She also needed oxygen prongs in her nose, which she hates. She claws away at the tubes and rubs her nose constantly when they are in. She's on the second hour of a four hour transfusion, and her heart rate is down. Hopefully the prongs will come out tomorrow.

I'm trying not to be freaked out. I heard the kid in the room next to us crying "it hurts! It hurts!". I happened to be sitting with a resident in hallway at the time and she was quick to inform me that it was his stomach. All I can think about is, when is Eleanor going to cry out like that? How am I going to know what hurts? How will I be able to fix it? Nothing really fazed me in ICU because everyone was in here for a different reason. Up here, everyone has cancer. Different types of cancer, but still gut-turning, angry, dangerous cancer. It's scary, and I know it will get easier once we get more settled, it's just a lot to take in today. Kris keeps saying "be strong", which is an expression I hate, but I'm clinging to it right now. I'm tired and frazzled and on my own.

Tomorrow will be better.

Bette Davis Eyes

2011-06-28T20:47:00.000-07:00

My daughter has incredible eyes. I suspect that people are drawn to them out of politeness because her cushionoid features were/are a little alarming, but her eyes are what hold their attention and get all the comments. It doesn't hurt that her eyelashes are 10 feet long either!

They have an incredible knowing look to them; she really takes you in when she looks at you. Tonight as she grabbed my nose and pulled my face close for inspection, she looked at me as if to say, "it's okay. I'm okay, and you're okay too". And then she proceeded to play peek-a-boo with a washcloth.

I don't know much about anything, but I know this kid is fucking amazing. All these kids are. We have been surrounded by such heartbreaking stories since arriving at the hospital, but the only hearts that are breaking are the ones who listen. These kids are just getting on with getting better. Heaven sent, heaven blessed, every last one of them.

No doubt she is going to get puffy and swollen again. Her cheeks will swell up and try and hide those eyes, but I know that even if she can't see me, she will still grab my nose and pat my cheek. "It's okay. I'm okay, and you're okay too."

Chemo Tuesday

2011-06-28T14:45:00.000-07:00

Eleanor starts her chemotherapy today. They are modifying her treatment even more due to a lazy kidney. While her output has been pretty good, the filtration rate of her remaining kidney is not up to snuff, so they are reducing one of the drugs by half.

Part of me is relieved that they are going to take it easy on her, especially for the first round, but the other part of me is increasingly anxious about those microscopic cancer cells that are dividing and growing inside her. It's like I can't figure out what scares me more - the cancer or the treatment. It doesn't help that they were supposed to take her down first thing this morning, and it's now after 2:00pm with no end in sight. It doesn't help my baby if I am anxious so I have a volunteer watching her while I collect my thoughts.

I have been deliberately avoiding the literature that was provided to us. This is weird for me. Up til now I have been devouring all the information the doctors and nurses have given me, but I can't bring myself to learn about chemo. It's like the assignments in school or at work that were over my head, so I would put them off or (God forbid) not do them at all. I'll get there eventually.

Eleanor has been looking great these days. Her tummy is hardly distended at all, her scar is healing nicely, the extra tissue and fat on her neck and face seems to be shrinking by the day and her acne is gone. Aside from the Elvis sideburns, furry back and Italian grandmother chin she looks like a proper baby! And she's back down from size 6 (!!!!!) to size 3 diapers. She feels great, too. She's very snuggly and less breakable. It's hard to believe she's sick at all.

I'm going to go get another snuggle now...

Moving

2011-06-26T22:41:00.000-07:00

We've been uprooted once again, and are now living in a broom closet.

Kris is obsessed with the Eleanor's numbers on the monitor. He watches them so closely that the nurse called in the cardiologist to quell his fears. She did one better; she discharged us! She still has "bratty" episodes where her heart rate drops suddenly, but it come back up as quickly as it fell, so the doctors aren't concerned. It's amazing to think that one of the things that concerned us so much is taking care of itself. Well done, little (big) heart!

We aren't due to start chemo until Tuesday, so they moved us to 3B, the oncology ward. And, as I stated earlier, we are in a tiny room. Eleanor's crib is stuffed into the corner and my cot stays folded up against the wall. When I pull it out to sleep, the nurse has to lean over me to get to the baby. It's going to be a fun couple of days. Barf. On the plus side, baby girl is free of electrodes and wires. She just has her E.T glowing toe-thing. I'm pretty sure that is the technical name of it. She's also less fussy about how she gets handled, which means her tummy must be feeling better.

I had a dream last night that she wrapped her arms around my neck and stood up on my lap. Eleanor has never been able to bear weight on her legs, so this dream left me with an overwhelming sense of longing. It was like the dreams I had when she was just a wee one in my tummy, and her tumor was just an angry cell. Waiting and wondering what she will be like when she arrives, and now anticipating what she will become. I suppose it's the same for all new parents, being awestruck by each incredible milestone their child reaches. Smelly's will take a while longer than most, but she will get there. I can't wait to feel her little feet step step stepping on my legs. Until then, I'll just enjoy her sticking her hands in my mouth and grabbing my teeth. That's something? She's such a weirdo.

Bizarre Pump Triangle

2011-06-26T10:01:00.000-07:00

I'm fighting my own dragons these days. One of them is the hospital breast pump. Blerg.

Our relationship began two weeks ago when Eleanor went in for her first surgery. I breast fed her for the final time at 3:30am on Saturday June 11. Then I met the pump. At first it was cool; we had a fairly good repor and we saw each other exclusively for a few days. Then things started to change. Sometimes when I went to see the pump, he wouldn't be there. I would wait around for what seemed like hours for him to show up. Then he would turn up in some random corner of the ICU and claim he had been there all along. I started to suspect that maybe there was someone else. We had never had "the talk" about seeing each other exclusively, so technically he could but I still was a bit shocked. We were getting along great! Why did he have to go hiding on me?!?

Eleanor was moved to a bed by the window following her second surgery. That was when everything fell apart. Turns out it's easy to get caught cheating when your women live next door to each other! Her name was Nancy and she has a three week old baby with a heart condition. I was furious, and our relationship immediately began to crumble. I was in such an emotional daze, I started seeing another pump right away - which is so unlike me. He is my go-to pump and is portable but nothing like the hospital pump. My supply and my heart began to decrease. I just didn't have the same feeling with this portable pump. Lucky for me, our time in the ICU was over and we could start fresh up in the ward.

I met someone new as soon as we had arrived. His wheels were a little rusty, but aside from that, he was everything I could have ever hoped for in a pump - and he was all mine. No sooner had we started our all encompassing affair when Eleanor shows up on the scene. Talk about drama! I now know what ICU pump must have felt like! It's tough splitting your time! I feed the baby and then run down the hall to meet the pump. I don't know how much more of this I can take. It's exhausting!

Long Day's Journey Into Night

2011-06-24T10:25:00.000-07:00

We had another conference room meeting last night. This one was planned, so it wasn't as scary as the ones down in ICU. Those ones were terrifying. The doctors would all breeze past you with their mouths set in firm lines, and one of them would gesture for you to follow. This one was much easier. Our doctors had all met at "Tumor Board" to discuss the best course of action for Eleanor's treatment and this meeting was just to fill us in on it.

We will be going through 6 to 8 cycles of chemotherapy, starting off relatively mild and extremely well supervised (back to Intensive Care). Each cycle will be about 3 weeks apart. Cancer has not spread to lymph nodes or to her bones, which is good, but there are 3 nodules on her lungs that may be of concern. We never got an accurate picture of her lungs because her heart was too unstable to risk holding her breath when she was incubated. So they might be totally unrelated, but most likely they are cancerous and if the chemo doesn't get rid of them, she will need surgery down the road to chop them out.

Good news on her heart! Her echo this week looks better than pre-operation! They keep telling us it will take 9 months to a year to go back to normal, but I have a sneaking suspicion that it will bounce back much quicker. The source of the cortisol (the tumor) is gone, and she is so resilient, I feel like her body can heal anything. Well, except cancer. She is going to need some help with that!

Chemo is terrifying. It's going to make her so sickly and for such a long time. And she can't tell us what hurts or what she wants. But I have a full four days before treatment starts to enjoy her and all her fuss-bottom ways, and we will enjoy every second!