Stability and Calm (while I was crushing her palm)

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

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

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

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

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

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)

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

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