Home

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

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

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.

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

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

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

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

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

Sometimes it's hard to have your prayers answered.

My living, breathing, sitting miracle.

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!