Sidetracked For (or Sidelined From) A Good Cause: part 3

I am trying to transition Miss Eleanor to one nap a day. Her schedule got all messed up when we went to Vancouver, and she started having short morning naps and long afternoon ones (they used to be about an hour each). Suddenly I saw my world open up - one long nap meant two long periods of awake time! We could do so many things in a day, see so many people... It played out in front of me like a movie: early morning run, adventure walk/hike/swim with the dog, lunch, nap. I'd get housecleaning done or make dinner or bake (things I never have time for now). After her nap, we could have a playdate or grocery shop or swim or just play! We could pick up dad from work. Dinner. Bedtime would be easier. Everything would be coming up roses! Oh, how glorious life would be with only one nap!!!

Alas, it was not to be. I pushed her hard this week to adjust, but she's just not ready. It came crashing to a head today, which makes me generally feel like a terrible mother and unbearably sad and hopeless. She was too tired to finish her dinner yesterday and went to bed early. She woke up a lot in the first few hours of sleeping and at 1am she was up, ready for action. I begged and pleaded with her to go back to sleep and she finally complied at 4am. She woke up for the day an hour later. This wouldn't be such a big deal on any other Sunday, but there was a very special fundraiser on today that we had to miss because she was screaming for sleep by 9:00am.

The Sole Sisters running group held their 5k & 1k KidsRun today to support the Victoria General pediatric oncology program. I am a HUGE supporter of this because the clinic here has been an incredible part of Eleanor's healing. They have a part time oncologist and nurses who only work clinic hours, but if they could get the funding, they could merge with the pediatric ward and have in-patient treatment. This means families wouldn't get split up between the island and BCCH in Vancouver when they need chemotherapy. It would remove a huge burden for island families who are already going through the worst experience of their lives.

This was the 3rd annual KidsRun and I am continually amazed by Mena Westhaver, who is the captain of the ship. Mena has been organizing Sole Sisters for the past 7 years and she routinely gets 300+ women out to train for various races in Victoria. I cannot even begin to imagine how she keeps everything together! In addition to their training, they also do a lot of fundraising. Each year they pick a couple of "cubs" and help ease the financial burden for the families of these very sick children. Eleanor was selected this year and we are so grateful to be the recipients of the funds that were raised. I really wanted to attend today's festivities and show these women how much we appreciate their efforts and to show them how great Eleanor is doing. The only photo they had of her was this monstrosity from the day she was ex-tubated.

Poor baby bear.

They deserve to see what a happy and healthy child she is turning in to!

But because I had a dream of the way napping could be, I ruined it for everyone. I am sorry that I couldn't make it out with my little family, especially because I believe so much in what you are doing. So from the confines of the four walls of Eleanor's room (because I am writing this during 2nd nap), I thank you and I applaud you. You ladies (and Mena especially) are an inspiration and I hope that our paths will cross soon. Thank you for doing what you do!

If you are interested in Sole Sisters or would like to find out more information on their annual KidsRun, click here and here.

And I quote...

Eleanor had an appointment at the clinic in Victoria today. Well, I thought she did. We went out to the clinic only to find out we DIDN'T have an appointment. We did, however, get some very good news. Very, VERY good news. The final report from her scan came in and it said the following...

"The identified lesions appear less conspicuous than previous study. A number of the nodules identified on the previous study are no longer visible on today's study.

IMPRESSION:

The lung CT suggests decreasing conspicuity of multiple peripheral lung nodules."

Italics, bolding and underlining added by me. For good reason. I AM FREAKING OUT!!!! SHE IS GETTING BETTER!!!

I know this doesn't mean she is cured. I know this doesn't change much, but it is so nice to celebrate a WIN. A real, honest to God, WIN. It's not just status quo. It is not "unchanged" or "the same". It is BETTER. And that feels pretty damn good.

Push-Pull

I get lost in memories sometimes. As we approach Eleanor's one year cancer-versery, I think a lot about this time last year, except I can't remember this long weekend. It certainly didn't feel like a holiday as I was tearing my hair out in stress and in the thick of some sort of sleep training. We had conquered her going to sleep in her crib, but I couldn't get her to sleep for more than an hour or two without feeding. I tried to soothe her without giving her my boob, but she would scream and scream and scream so after a few weeks of fighting (and frequent "she's fine" trips to the doctor), I gave up and fed her on demand. I was so tired by June, I would wake in the night and wonder which child was up - I was convinced I had twins! So yeah. I don't remember last year's May long weekend.

I find my mind wandering back to a simpler time. It was May 2008, and Kris and I had travelled out from Toronto to do some wedding planning and for him to meet my brothers. We all stayed at my parents and had an incredible weekend, playing with my niece and nephew and having barbecues. It was a near perfect time, but even thinking about it now, it gets foggy with bad memories. Bea was the same age as Eleanor is now, and it hurts my heart to think of it. I didn't think of Bea as a baby; I thought of her as a little girl. She ran around, playing soccer and keeping up with her older brother - hell! She kept up with all of us! Sure, she didn't have a lot of words, but she was way older than Eleanor seems.

Oh, hi baby Bea!

I dread when people ask me how old she is. They usually guess between 9 months to a year. She is little. She doesn't walk or talk. Her hair is short. It exacerbates this push-pull feeling I have all the time. Yes, we should be out in the world and meeting new people and experiencing new things! No, we should stay close to home and trust the familiar things to protect ourselves.

I'm trying. I'm trying to live normally when our lives are so far from normal. It is infinitely easier and enormously harder the further we get away from sick. I'm fully aware of the corked bottle that is my existence, and being aware of it makes it ok, right? Walking around, crying behind my sunglasses is fine because I did the laundry and fed the dog and went to Eleanor's playdate.

Sometimes after she gets her midnight propranolol (which is usually much earlier because I can't stay up til midnight), I put her back to sleep by burying my face close to hers and wrapping my arms around her. I hold her like she is my teddy bear. I hold her close and because she is basically asleep, she stays asleep. My face is smooshed into the mattress and my mouth hangs open so I can breathe and I focus all my energy on NOT drooling. I do this because if I let myself breathe normally and deeply, I will breathe in her babyness, her softness, her fragile frame. Tears well up in my eyes and my throat contricts. I will wait for the mattress to swallow me up because I will not be able to resurface from that feeling of her fragility and innocence.

She is so perfect right now.

When I am not dwelling in the past, I think to the future. I think of all the experiences I want to share with her to help guide her choices. I think of her having nightmares and crawling into bed with us. I think of her slamming doors and telling me she hates me, that I'll never understand her. I never will. I'll never know what it is like to have her disease, her condition, her future. "Future" has become such a daunting word, an intimidating idea. No one knows what the future holds, but they can catch a glimpse if they look the right way. I don't want to see it. Those moments of childhood that seem so recently passed in my own life are so elusive for her. What can you do? I can just love her. Hold on to her and love her. Let her go and love her. Love her then, love her now and love her tomorrow.

Love you, bear

And so on and so on...

Ahhhh home. A glass of wine, an ocean breeze from an open window and a baby sleeping soundly in the next room.

I can hardly move, I am so tired. I shouldn't be this tired; Granny was an absolute STAR in Vancouver and kept working tirelessly to keep both me and Eleanor happy. I did this trip (with even MORE tests) on my own back in February, so how can I be that tired? I don't have an answer. I'm just exhausted and this exhaustion is clouding all my feelings.

Eleanor had her CT and MRI scans today and the preliminary results were incredible. We were waiting for Dr Schultz (E's oncologist) to come back from radiology, and one of her old GPs walked by and gave us a big thumbs-up and said her scans were excellent. I was chatting with our dietician at the time and both her and my mum clamoured that this was great news! I couldn't even think about it. Dr Schultz waltzed in a few minutes later and before the door closed, he said the scans looked good. The radiologist said the two nodes are unchanged from last time. Oh great! Wait...what?!? Two nodes? Last time there were eleven! My facial expression was set to stunned so he pulled up the old report and reassured me that he would follow up with radiology to find out for sure what is going on. Either way, she is still stable, but there is an inkling, an eensy, weensy chance that she might be...better?!?!?!

I breathe in, I breathe out and I can't think of it again. Not now. Maybe later.

For now I think about how great it was to see all our old friends at BCCH. Poor Eleanor doesn't remember anyone/thing, so she was thrust into a lot of "strangers" arms. I chided her along with encouraging comments, "you LIKE this nurse/doctor/dietician/anasthecian/volunteer/chaplin/cleaninglady/starbucksemployee. They helped save your life!" It was met with varying degrees of success. I had a wonderful time catching up with all her old buddies. It's been a long, long time!

We also called in to see my brother in his new place. Eleanor was a little unsure of him at first, but quickly warmed up:

Why yes, it's a very good cracker.

Oh hey mummy!

Check out my tummy, uncle anj

Oh! You have one too!!!

Adorable. And wonderful. And yeah.

Willful Ignorance

Ignoring tomorrow's scans and stress and thinking about our trip to the petting zoo last week. Enjoy!

It's been a long time...

I've been distracted.


Truthfully, I feel a little weird posting about the normal bobbler stuff we have been experiencing lately. That, and we are due for scans next week which makes me nervous. Nervous and distracted. But I don't want to talk about that. I don't want to anticipate or dwell or even think about it til the weekend.

For now, I am apologizing. Eleanor is boring. She's a happy, movin', groovin' bobbler. Though she seems to be cutting molars, which is ill timed because I CAN'T THINK OF ANYTHING EXCEPT HER SCANS!

I'm scared. Her last hormone levels came back normal, so I shouldn't be scared, but one of Eleanor's little buddies is having a hell of a time right now. His cancer just won't stop growing and his case isn't that different than ours. So I'm scared. And it doesn't help that Kris's photos are running on his iPad next to me and there are so many scary sick photos of my baby that I have never seen before. Did she really look like that? She's alabaster white. Ghostly, with scary sunken eyes. So many lines running out of her body. Did that all really happen? I don't want to go back. I like it here. I like that people think I gave her a buzz cut instead of worrying, bumbling questions that ultimately come out as, "what's wrong with her?"

So yeah. It's been two weeks since I posted. Here is a quick snapshot of what has been going on.

I attended an incredible event for Eleanor. It was the wrap party for the Sole Sisters running group. They have over 300 women that train for the Times Colonist 10km run/walk. The woman who started it 7 years ago is a superstar. She is an incredible woman who gives so much of her time to help others, it is really incredible. Organizing a group of that size is no easy task! Everyone single one of those women have different needs, different goals and different reasons for taking on the challenge of a 10km, and she has to accommodate every last one of them. Every year these women bring a toonie or a loonie for a designated "cub"; a child with health challenges that could use some extra funds. This year, Eleanor was one of their cubs. It was so wonderful to be a room with so many lovely people, and I am excited to join them in their next endeavours (RVM half marathon in the fall?!??!).

Eleanor has started gaining a lot of strength. As I was wrestling with her for a diaper change last week, she pushed past me and sat up. She sat up all on her own. She had never successfully transitioned from laying to sitting, so I took a bunch of photos that don't really capture the emotion of the moment, but they are pretty cute.

Sittin' on the dock of my diaper...

Watchin' my train roll away...

ooooo....

Granny got back from her trip to Ireland and Eleanor was thrilled to see her. She loves her Granny.

More strength means more skills. Her army crawling is starting to take her places, which is both awesome and terrifying. I was hoping that because she is so late to the game, maybe she won't get into trouble. Not so much, but it's a nice thought! She's also able to pull herself up to standing, but only from sitting on my knee.

Spot the monkey

Nice up-dog, little bear!

First time standing by just holding hands!!

Yarg. I will have to save the rest of the photos for another post! To sign off, I will leave you with another video. We are excitedly embracing the warmer weather and had a wonderful day down at the beach with the ladies of the family. Here are Eleanor and Bea engaging in their favourite game (with a little help from Auntie Trudi!). I think Eleanor would do this all day if she had it her way!