No Words

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

No Words

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

I have no words.

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

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

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

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

Yup.

No words.

Love you so much, little bear

Bedtime

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

She is a jerk.

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

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

Oh Em Gee she is a handful.

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

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

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

My heartbeat next to hers and all her baby glory.

What was I saying?

Right. I've got to get away.

Where was I going? And in what hurry?

I'm here.

Let sleeping dogs lie.

Fun with Apples and Atia

I sat down to enjoy an apple after our morning walk

Eleanor decided she wanted some too

Atia got jealous

Okay, Atia. I see you!

Hi puppy!

Hmmm... awkward

How about your own piece?

And one for the puppy

Ah! I got it...

Problem solved!

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

Oh, right. THAT cancer.

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

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

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

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

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

Home and Husky Kisses

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

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

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

Oh, sweet Lord, she is bald.

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

More wine(question mark)

More wine!

Play Date

Eleanor had a special play date today.

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

"Is that a cell phone?"

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

Apparently someone else liked it, too.

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

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

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

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

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

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


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

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

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

Or...

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

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

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

Day 13

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

Diapers for Dorks!

The flash makes baby make funny faces

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

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

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

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

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

Development!

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

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

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

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

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

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

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

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

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

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

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

I know. Mummy is worse than Hitler.

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

Coming in for a landing!

Say "AHHHH!!!"

What can I say? My child is a genius.

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

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

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

What's in a name?

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

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

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

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

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

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

There's no one like you, Eleanor, really

Eleanor, gee I think you're swell

And you'd really do me well

You're my pride and joy et cetera

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

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

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

They call me Katherine that do talk of me.

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

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

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

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

ME WANT FOOD!

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

Wish me luck!

Cancer Baby Playdate

Baby E and Baby L had a playdate

Monkies!

Baby L is very advanced...

She tried to teach Baby E about sharing!

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

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.