March Madness

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

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)

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

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

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

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!

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

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.