It's New Years Eve

And hopes are high
Dance one year in, kiss one goodbye...

We don't need a crowded ballroom
Everything we want is here
If you're with me
This year will be
The perfect year

Happy Holidays!

Well, it wasn't my favourite Christmas, but it was my least favourite Christmas...!

I shouldn't say that. Kris and Eleanor and I have had a wonderful week together and we got to see some of our favourite people. I spent most of my free time baking cookies and then eating said cookies. I tried to give them away as gifts, but Eleanor decided she really likes gingerbread.

You thought the Cookie Monster was a blue muppet? Think again!

What?

We went down to the Empress Hotel to check out the Christmas tree display that raises funds for BC Children's Hospital. I tried to get a photo of Eleanor in front of the big tree in the lobby, but Kris wasn't being a very cooperative photographer or photography subject, but it was fun nonetheless!

You were supposed to get the tree, my love!

...close enough.

We tried to honour Kris's Lithuanian heritage by abstaining from meat on Christmas Eve and eating 12 courses of cold fish for Kūčios dinner.

We cheated. It is sushi.

We didn't do a ton of gifts, mostly because we don't have a lot of money, but also because we received the best gift two weeks ago. And because Eleanor is still too little to know what's going on. Her cognition is getting much better, but she still has no idea what's happening at Christmas. All she knows is that Daddy is home a lot and that makes her sooooo happy.

We bought her a tea set, which she absolutely adores. We let her open our gifts to each other and even re-wrapped a couple of gifts she got for her birthday so she could pull the paper off more prezzies, but the tea set was still her favourite. 

I've spent the last couple of days pulling tiny tea cups out of my shoes and sorting fake teaspoons from real ones when I wash the dishes! Speaking of shoes, Eleanor's "fairy god lady" came to the rescue and bought her a fancy new pair of kicks. 

This is her "listening" to Jessa's pre-recorded version of The Little Engine That Could

Eleanor's physio recommended she wear shoes with more support as she still over pronates when standing. And when you think about it, she's only really been able to stand for 6 months... Not very long at all. She's not overly concerned, but thought proper running shoes might help. Check out these bad boys.

Totally coincidental that they match mine (I bought these back in August as my post-marathon shoes. Now they are my post-pregnancy shoes!), but awesome nonetheless.

We were invited to lots of lovely dinners on Christmas Day, but Eleanor caught a little bug from her playgroup and started waking at 3:30-4:00am again. It makes her so tired and cranky around dinnertime that we cancelled our plans. It's just not worth it. She gets so miserable and then Kris and I get tense and bedtime is harder and she sleeps terribly and we start the cycle all over at 4:00am! We have trained my parents over the past year to have early-bird family dinners and we can get home for bedtime and everyone is happy, but that wasn't an option this Christmas as everyone is away at a family wedding. Daniel and Ruth - I love you to bits and am so excited that you are getting married today but...can I have my family back?!?? I miss them.

Oh and because Kris thinks this is hilarious, I have added some photos of me rocking my favourite gifts - moon boot slippers and some kind of weird poncho/blanket/wrap (thanks Trudi and Jessa!). It's been my uniform for the past few days and may see me through the rest of my pregnancy. See you in April, any sort of fashion sense!!

With a kid in my tummy and one around my ankles...

This Is 30 (going on 90)

Terrible 2's

I don't know what it is. Maybe it's because she is now officially two. Maybe it's because she's been off the Mitotane for almost a week (officially - we didn't stop it completely until we got the results from the PET scan, even though we were supposed to stop it three days prior... semantics, really ;-). Or maybe she is just a jerk.

I think it's probably a combination of the first and second options.

Eleanor has been extremely resistant to everything lately. She fights putting on clothes, getting out of the tub, eating, sleeping, NOT digging through the garbage... you name it, she has got a problem with it. Welcome to the terrible two's! She seems to be playing the angle that she has a lot of catching up to do, so she is EXTRA fussy and controlling. When I don't want to tear my hair out, I feel bad for her. She is still so limited with communication and movement that it's hard for her to express what she wants (or doesn't). It must be terribly frustrating, but I'm frustrated too! I spent longer getting ready for a stupid walk today than actually walking! And momma-bear is getting FAT and needs to walk! Oh wait, it's pronounced "pregnant". Right.

But all of us needed a walk today. My poor dog is seriously neglected these days. I do my best to exercise the snot out of her, but it's getting harder and harder to meet her needs. She had a bad belly yesterday and pooped in my car (while driving, so there was very little I could do) and again in the living room. Like a ninja. On my freshly cleaned carpet. Ugh. But rather than get mad and frustrated, I acknowledge her bad belly and the unfortunate change to her routine and strive to make her life more comfortable. Just like I strive to make Eleanor's tantrums more bearable. Yes. Patience is a virtue I covet, but unfortunately lack.

Anyway, we struggled through the excessive layers of clothing, the assembly of the stroller and the awkward elevator ride and the three of us enjoyed the craziest, windiest, wettest walk of the year. Because of Washington State's protective, older-brother-like hug around Victoria, we rarely get big breakers rolling in, but today the sea was arching and crashing! Atia and I got smoked by a wave that crashed over the sea wall along Dallas Rd. Eleanor was safely ensconced in her bubble, eating Goldfish and pulling off her shoes. The wind and the rain and the sea were so loud I couldn't hear her protesting. When we turned away from the ocean, I realized that our idillic (though blustery) walk was over. Thankfully it was long enough to keep Atia quiet for the rest of the morning and give me an excuse to eat cookies while I write this!

Tomorrow we head out to our last doctor's appointment of 2012. We saw oncology on Monday and did a bone-age X-ray as well as some blood work and tomorrow we see endocrine. Hopefully everything comes back normal. Her puberty-like symptoms continue to baffle all her docs and they, like us, are just hoping they all go away and she can resume looking like the normal toddler she is. We are just super thankful that this holiday season is so much less dramatic than last year's PICU stay. I'll take quick clinic visits over that debacle any day!

12 Days of Christmas - Eleanor style

18 months of Mitotane
11 random nodules
10 percent survival
9 days intubated
8 rounds of chemo
7 months in hospital
6 months of blood thinner
5 milligrams of cortef!!
4 dozen(+) vomits
3 yucky surgeries
2 heart stoppages
and a toddler that's cancer-free!

Merry Christmas everyone!!!

A Thrill of Hope, The Weary World Rejoices

The news we have been waiting for for 18 long months has finally arrived. There is no evidence of disease in Eleanor. She is officially cancer-free!

I don't know what else to do, so I am writing.

I am spent. Every fibre in my being is exhausted. I want to be elsewhere. I want to be in the stratosphere, looking down on this crazy world. I want to drink more booze than I ever have, EVER, and find myself in a ditch in a city I've never been to before. I want to wrap myself in the deepest, darkest, bear-like winter hibernation.

And I'm so happy! I've received the best possible news that any cancer mum could every hear! My daughter has beat her dragon into submission! She has officially kicked cancer's ass! She is one of THOSE kids now!

I can't believe it. I can't believe it. I am THRILLED, but I can't believe it.

Yup, definitely thrilled.

I think my desire for darkness stems from how bright her future suddenly is. Suddenly I can see how poor her diet is and the desperation to make her eat SOMETHING seems rotten. Suddenly I can see her trotting off to kindergarten. Suddenly I can see a world free of constant monitoring, constant medications. Suddenly her life looks LONG and FULL and so much more than I ever would have thought possible. It's heart-poundingly terrifying and wonderful.

I know her life will be hard. She could still relapse and her genetic condition means she will very likely face cancer again at some point. But that could be 100 years from now (Li Fraumeni is also linked to longevity), or never. She could just grow up normal.

Very intent on our game of "I Spy"

Opening birthday prezzies

We are blessed. We have been truly blessed to receive this news. I honestly believed we would never hear the words. But Eleanor continues to defy all the odds and rewrite textbooks and constantly prove everyone (including me!) wrong. She's a special little girl, that's for sure.

The baby awakes. I must pull myself out of my desire for sleep and rest and continue to parent my seemingly healthy toddler! And thank you for your kind words of support and for sharing in this joyous moment with us. The outpouring of love we have received via Eleanor's Facebook page and by phone, email and text is overwhelming. It is wonderful.

9:06 am

It is birthday Monday here in the Goudie household. At 9:06 am Eleanor officially turns 2 years of age.

My little bear.

My turkey sub.

My heart, my world, my everything.

We had a wonderful weekend full of friends and family. We partied non-stop and she loved all her new toys and kissing everyone who would let her. It's funny how every cancer-kid gets labelled a fighter, but Eleanor is really more of a lover. But she's also a fighter, so don't get any ideas!

Eleanor was remarkable in her efforts to keep up, especially after a crappy couple of days in Vancouver. Her PET scan was a bit of a disaster. She was symptomatic when she woke up Friday morning and didn't get any better as the morning went on. We couldn't give her any glucose as it would interfere with the scan. Her blood sugars remained low-ish after the scan and she struggled to wake up after the anesthesia. We had an incredible team of nurses from Children's helping us out and they decided it was in her best interest to recover at the hospital and have endocrine give her the go-ahead to go home. We took a short ambulance ride from the Cancer Agency to Children's and she happily devoured all the food we put in front of her. It took a long while to get her blood work sorted and the seal of approval from endocrine, but we finally left the hospital at 2:45pm and headed home on the 5:00 ferry.

At 7:57 am this morning, we officially got the call to stop her Mitotane. Her oncologist hasn't even reviewed her scan from Friday, but the verdict is that this drug is causing her more harm than good. The harm being her delayed development/growth and her hormones that have swung from androgen to estrogen. The Mitotane also inhibits her steroid, so she is on a higher dose than she should technically be.

I don't know what to think. Kris thinks it's good news. She doesn't need it anymore! Hooray! Huzzah! I'm feeling a little more pessimistic, a little more confused. I guess we will know more when we speak to him directly on Wednesday.

It helps to have a wonderful social media machine at my side and constant birthday messages flowing in for both Eleanor and myself. And a hot London Fog that was left in mailbox :-) I really am a very lucky old lady!

The Secret Posts: part 6

Written November 8, 2012

Finally got my date for the anatomy ultrasound. It's on the 22nd and I will be 19 weeks on the nose. I was checking the mailbox obsessively for weeks but I guess I missed the notification. They mailed it out six weeks ago! Oh well. I have the date now and I can breathe a little easier once it's done. I guess because we've run the course of having a sick child, I am stuck in this mentality that ALL our children will be sick. I just want to see a skull with a brain inside it and two arms and legs and a closed spine. And please, no more cancer.

Edited November 30 - I had the date of my ultrasound moved to accommodate Eleanor's most recent scans. It was actually yesterday on November 29th.

The Secret Posts: part 5

Written October 18, 2012

Atia hasn't gotten into our bed since I went into labour with Eleanor. Looks like her spidey-sense is tingling!

The Secret Posts: part 4

Written October 16, 2012

My genetic test came back negative for Li Fraumeni. Small sigh of relief. Kris still hasn't done his blood test, but the geneticist was pretty confident that nothing abnormal would show up.

Baby is nearly 14 weeks. It has a heartbeat and I'm pretty sure I have felt him/her grooving on occasion. Eleanor continues to pile-drive her sibling which always makes me smile. Sibling rivalry! They start so young... Exhaustion and dizziness are my two constant compadres so I am upping my iron. I hate taking so many supplements but I really feel better with more iron. As the second trimester dawns I will hopefully start to feel a bit better - I am definitely feeling better than I did with Eleanor, and I am sleeping WAY less now - so woo hoo! Let's keep this party going!

The Secret Posts: part 3

Written September 15, 2012

Well, I'm out. Out of the marathon, that is. After two weeks of intense nausea and fatigue that was preceded by two weeks of hospital nonsense, I am officially throwing in the towel. I am sure I could of physically if I really committed, but mentally I am a million miles from being able to cover the distance. It's too much for me. Someone else might be able to, but not me. Not this time. I am slowly accepting this. I am embracing my growing belly and super sore boobs and moving forward.

We've finally sorted out the genetics conundrum, which was not easy. I spent a lot of time quietly mulling it over and Kris didn't. He didn't want to think about it all, God love him. I feel very blessed to have a partner that I truly understand, even if we don't do things they same way, or see eye-to-eye all the time. So I helped him work through it and we have come to a decision together that we can both live with. There is no question that we are keeping this baby. I am staunchly pro-choice, but it doesn't make sense to us that we would terminate a life when we have fought do hard to save another. We are keeping this little nugget, no matter what the future holds for him/her. If s/he turns out to have Li Fraumeni, we will deal with it the same way we have dealt with this. If s/he turns out to have some other condition, then we will deal with it and love him/her with all our might.

We are growing our hearts by growing our family. I feel like I might burst. And I love it.

The Secret Posts: part 2

Written August 30, 2012

We met with a genetic counsellor yesterday. We weren't supposed to, but when I saw Jen the day prior, it got me thinking that we should. We filled out forms back in December to get requisitions for a p53 blood draw. We never got the reqs and put it out of our minds. The geneticist said the likelihood of either us having this mutation was slim, so why bother with a blood test to prove what we already know? Well, now it's not just me and Kris who need to worry, it's this little embryo tucked in my belly that has a million question marks all over it.

Our options are these:

1) Do nothing. Continue down the same path we are on now, which assumes that Eleanor's Li Fraumeni is a mutation that lives in her and only her and everyone else will be cancer-free forever and ever, amen.

2) Do the blood test. It will take 6-8 weeks to get the results, which will probably be negative, and continue down the path laid out in Option 1.

3) Push past the notion that WE are carriers and check to see if our GONADS are carriers. It is possible that my eggs and/or Kris's sperm could have a mutation that creates cancer babies. It's extremely rare, but still possible.

If Option 2 or 3 comes back with evidence of a mutation, we have a 50% of making more Li Fraumeni babies. They could do an amniocentesis at 16 weeks gestation and determine once and for all if this little dude or chick in my tummy is the same as Eleanor. Then we decide what we want to do - terminate or do this all over again.

But if everything comes back clear, and I have a healthy pregnancy and a healthy baby, this child will be the closest genetic match to Eleanor. I am desperately trying to get her oncologist on the phone so we can talk Mad Hatter science. He is ALWAYS asking if I'm pregnant or "are you thinking about more?" which are grossly inappropriate questions, but I know he has some tricks up his sleeve. I know he wants to do a stem cell transplant on her to see if he can erase the Li Fraumeni mutation. Wouldn't that be something?

So we have a lot to think about. A lot more than nursery colours or what style double stroller to purchase, that's for sure!

The Secret Posts: part 1

Written August 20, 2012

It is a cooler and slightly gloomy Monday. Eleanor woke at 4am, screaming. It was so loud I thought she would never settle. Kris brought her into bed and she immediately snuggled into me and fell asleep with my arm wrapped around her. It was wonderful, except I didn't go back to sleep. I had to pee and my hips ached from lying on my side. I'm only 5.5 weeks in and already some of the symptoms I experienced later in my pregnancy with Eleanor are coming out to play. I managed to squeeze in 40 minutes of dream-filled sleep after she woke up an hour or so later.

In order to minimize suspicion, I am getting my blood work done at 7:30am and Kris is at home watching the baby. It's so different from last time. Last time everyone in our families knew before I was 8 weeks. It was so hard to keep our mouths shut. Kris told cab drivers, coffee baristas, bartenders...pretty much anyone who would listen. Now we are telling noone. It's a nice feeling, keeping it private, but there are still a lot of butterflies. I'm not thinking long term at all. I am literally taking it day by day. If it turns out to be viable (God willing), then I will start making plans. Until then, I will just relish in how good my jeans fit when I pulled them on this morning. Haven't worn them in weeks and am delighted in how comfy they still are. No early bloating for me! Long may it last.

THANK U

We've gotten such sweet messages from all our friends around the world and I want to say a huge, heartfelt THANK YOU! We are very excited to be growing our little family, and a decision this major didn't come without careful consideration and a lot of worry, so it's wonderful to hear positive feedback! I was nervous to come forward and tell the world (up til now only a few friends and family knew), but I am thrilled to have "outed" myself. Well, maybe I'm just thrilled that I finally got to see the babe and it looks SO NORMAL.

I have been terrified that something would be horribly wrong with little Chewbacca/Chewbacqueena (we don't know the gender). It was a huge relief to be able to see 10 fingers, 10 toes, 2, legs, 2 arms, 2 kidneys (and no abnormal growth around them), all the bones in all the right places and 1 brain encapsulated by a GIANT GOUDIE HEAD. Eleanor showed us at her ultrasound that she was all Barry. She had my exact profile, complete with ski-jump nose, and she looks more like me every single day. This nugget, however, looks very little like Eleanor did, and the giant cranium suggests it will look much more like daddy. Exciting, but weird. I realized then (and this probably sounds stupid) that this baby is NOT Eleanor. It's a whole other person. A whole other healthy-looking person, but you know what? Even if baby comes out with something unforeseen, I'm okay with that.

I've lived the past 18 months in fear. I'm scared of my daughter's disease, scared of her dying and scared that our next child will have the same mutation and live a cancer-ridden life. Gradually this last fear has faded. I understand that Eleanor having Li Fraumeni was an anomaly, but what if our other children developed or were born with something else? What would become of us? I met a very nice mother who told me that she was stopping at two children because both her kids and her husband had bad, sometimes life-threatening food allergies, and they were all allergic to different things. She found mealtimes so stressful that she decided two was enough. Her thoughts stuck with me and I wondered if I should stick to one child because my one child is so complicated. I realized that that was just fear talking. Sure, this baby could have something wrong with it, but you know what? I am a really good mum to a sick kid. I mean, I don't toot my horn very often, but I got this. This is the best job I have ever done and I frigging love it. So if Chewy develops ADHD or is on the Autism spectrum or has diabetes or WHATEVER, bring it on. I'm going to love him/her no matter what and make sure s/he has the best life possible. I'm not scared anymore.

I have been writing a few musings-type posts over the past 20 weeks of my pregnancy and I will post them up later tonight. I have dubbed them "The Secret Posts", like a secret song at the end of a cd. You all remember cds, right? Anyway, they aren't really Eleanor related so I always feel a little weird posting them, but if you feel so inclined, they will be there.

Oh, speaking of Eleanor, I don't think she is at all aware of the baby we keep talking to her about, but she can sign "baby" and she can also pile-drive my uterus like no-one's business! Sibling rivalry may have started already!

November Rain

November always makes me listen to more Regina Spektor. She's got enough Russian sombre-ness and catchy pop-ness that balances out the darkness of November. And on days like today, when the sun seems to be brought in on the wind and waves, she seems especially poignant.

This is how it works
You're young until you're not
You love until you don't
You try until you can't
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath

No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else's heart

Pumping someone else's blood

And walking arm in arm

You hope it don't get harmed

But even if it does...



You'll just do it all again

Love you already, baby Goudie...

And on the radio
You hear November Rain
That solo's awful long
But it's a good refrain

Hi.
Can't wait to meet you mid-April!

November Scans

After much back-and-forth between Children's, we got Eleanor's scans completed. Whew! Originally we were looking at three days over there with one appointment per day, but we were able to whittle it down to only two days, one night. It made for a long couple of days, but hey, it is always a long couple of days! It was really nice to only have one night in the hotel though.

Eleanor and I left at 5:20am on Wednesday morning to first pick up Granny (our travel companion for the trip) and then to head out for the 7am ferry. Eleanor was supposed to be NPO (nothing by mouth) for 8 hours prior to her 11:15am scans, but I raised my concern to the nurses in day surgery because of her hypoglycaemia, so we were able to modify it a little bit. She could drink milk when she woke up (she had 3-4 ounces) and could drink clear fluids (apple juice, popsicles and water) for an extra hour. It didn't help much. We checked her blood sugar before sedation and she was dangerously low. I was honestly surprised because she had been in such good spirits travelling over on the ferry. She wasn't shaky or crying or symptomatic at all. 

Dolly's well-being was of most concern

Everyone got a bit excited about the reading and endocrine came by to help out and finally it was decided she could have some sugar water and if her levels came up enough, she would be fine. She would also get some glucose through her IV once she was out. This seemed to satisfy everyone.

We are OK!

I took her into the CT area to get sedated, and it was really sad. I forgot how awful it can be without an IV already started. When she had her central line (or an IV), they would inject some white stuff into it and she would be instantly knocked out. Without an IV, she has to be gassed. It seems like that wouldn't be too bad, but it's awful. They have to hold the mask really tightly around her face and she screams and fights like no-one's business. It smells terrible, too. She finally went limp, but her little mouth was still agape like she was in mid-scream. Poor bear.

Anyway, it went off without a hitch. She was typically cranky when she came to and was STARVING. She gets a stress dose of cortef any time she is put under, so couple that with the fact she hadn't eaten since 6pm the night before, and you have one hungry girl! After attempting and failing at getting popsicles and sugar water into her, they finally let me feed her. She isn't supposed to eat for 6 hours or something ridiculous after sedation. She's never made it more than an hour. She scarfed down a cup of cheerios and a piece of banana bread and was back to her happy self! We got her dressed and went round to the oncology clinic and the wards to drop off some cookies and say hi to all our old friends. It was so great to see everyone and Eleanor was a champ. She was in the best mood! I was marvelling at her the whole day because she was so happy! I literally bawled my eyes out on Friday night last week because I was so exhausted from looking after a child that spent the entire week SCREAMING at me. And then this child who can't stop smiling and playing and flirting... It was a huge change in demeanour and she was in the hospital! Shouldn't she be more miserable? Whatever. I am just happy that she is happy! Granny and I were pretty tired by this point, so we made our way to White Spot where Eleanor enjoyed her first Pirate Pak. She had never eaten dinner in a restaurant before, so it was a really nice moment. I couldn't believe that we finished up at 6:30pm. Girlfriend had been going since 5:00am with only one short nap in the car. Mental.

Granny and I are busy colouring, Mum.

We got to the hotel and all of us crashed pretty hard. Granny offered to help put Eleanor to sleep, so the two of them curled up into bed together. It was pretty cute, especially since my mum FREAKED out when she found out Eleanor and were bedsharing when she was an infant and again during her treatment. It's pretty nice to have a sweet child sleeping next to you after all, hey mum?

Thursday started off very relaxed. We woke at 5:30 and chilled in the hotel until Eleanor's nap around 8am. We got our day started after that and headed over for a quick shop at Ikea. When in Richmond...! We got to the hospital for our appointment with Dr. Doom and Gloom (Schultz) at 1pm. He came in pretty bleak and was very concerned about her cortisol levels. Apparently they were off the chart. My hands started to sweat and my pulse raced. Her body doesn't produce cortisol so if it was high, something else in her was producing it... And then I realized that they must have drawn her blood AFTER they gave her the stress dose. Whew! We were both relieved to figure that out and his mood was much more jovial. He even used my phone to text Kris (who was frantically texting me) to let him know everything was fine. Cute. And weird. But cute.

Basically everything is the same as it ever was. Lots of tiny spots on her lungs that are unchanged and nothing in the tumour bed. He is quite concerned with her breast growth. They showed up on the scan as boobies. No weird growth, just normal prepubescent boobies, but obviously not normal because Eleanor is not even two. He really wants them to go away, but nobody has an explanation as to why they are there. Her puberty stimulation test came back normal, but her estrogen is elevated. Our new plan of attack is to do a PET scan, which is similar to a CT scan, but radioactive. If any tumours are in her body that are a) new or b) in an area we haven't checked before or c) malignant (I'm looking at you, random spots in lungs!), they will light up. If anything lights up, he would like to send a surgeon in to chop them out. If nothing lights up, we can assume that a) there is no evidence of active disease in her body (!!!!) and b) the Mitotane is causing her to grow boobies. If we are lucky enough to have the latter (and oh, God, I can't even let myself ruminate on it because OHMYGOD what if my daughter is cancer-free? What if I am not constantly looking over my shoulder and wondering is this her last birthday? Is this her last Halloween? WTF?!?!?! Shhh.... don't think about it now....), we would look at stopping the Mitotane fairly soon. This is not something to be taken lightly and Kris and I are very apprehensive about it. But if all signs say that she is fine without it...

ANYWAY. We must not get hung up on the what ifs. We must first get through the PET scan, which should be in a couple of weeks time. It means heading back over to Children's and more NPO mornings, but we are a pretty well-oiled machine now, so it won't be too bad. And it means we get an extra chance to see all the people we missed this time around! I'm just keeping my fingers crossed that it won't be on our birthdays. We celebrated last year in hospital, and it would be nice for it to be at home this year. We will hear from the hospital soon about when this will be happening. For now we will be enjoying our time at home as family and celebrating another successful set of scans!

Back to monkey business at 5 in the morning. I think she is happy to be home!

Whoops!

So somewhere along the way, Eleanor never got booked to go back to Children's. She is supposed to go every 3 months to get a chest CT scan and an abdominal MRI to check for any changes to the spots in her lungs or the tumour bed (recurrence most often will happen here). But it didn't happen! I was patiently waiting to hear and as November came barreling towards me, I started asking around and sure enough, no appointment was made. I have spent the last few days frantically emailing all the moving parts to make this trip happen. I have dozens of emails labeled "Eleanor's Scans" - which if I were still working would be relatively few - but now I'm a stay-at-home mum and it feels like I am very busy and important! But it's all organized and we are heading over for scans on Wednesday and a meeting with the good doctor and some cardiology stuff Thursday.

I'm kind of grateful we only had a week to prepare. It reduces the "scanxiety" by a whole truckload. I'm now too preoccupied with the actual act of getting us over there than the reason we are going over there. That said, when I informed Kris that we were going to Children's, he immediately started to panic. He seems to be compounding three months of stress into one week. Poor guy. I keep telling him/me that there is nothing to worry about right now - she's too strong, too ambitious, too... toddler to have anything wrong with her.

And yet...

She's really shrieky lately. I am nearly positive it's just Eleanor asserting herself and the start of the "terrible twos", but it's hard not to worry. She really hates her high chair. She arches her back and flails when I try to put her in. I'm guessing she doesn't like to be constrained but maybe something about it hurts her? She's also not eating very much, which I know is a normal ebb and flow of kids, but maybe not? Maybe it is just a cold. Maybe. Ugh. I guess I do have scanxiety. Maybe it never goes away. It seems the more "good" or "normal" scans we have, the less time we have before the bad scan. It will come eventually, we just hope and pray it will be a long, long ways a way.

I'm excited for the weekend, so I am just looking forward that. This week will be filler to the good stuff coming up. There is a fundraiser for our pediatric oncology department on Saturday night. I will post the info if any of you in Victoria are interested in coming out to support a great cause. And I get to meet a friend's new baby. Nothing like a new baby to make you feel all warm and fuzzy!

Hmmm. I better sign off as I can hear E stirring in her room. It's after 10pm, so this may be a sleepless night here. Better try and get some sleep in where I can!

For Uncle Stu

I was chastised by my uncle the other day as I have not written a blog post in many moons. It's true. I haven't been in the mindset to write as everything has been kind of boring around here. Eleanor is switching on more and more as each day passes. She is comfortably cruising and getting more adventurous with her movements. She attempts to pull herself up on things that seem impossible (the hinge of a closed door? A knee-height toy?) and is being met with moderate amounts of success. She has excellent stamina now. She used to tire so quickly when we would practice standing or crawl around the room, but now she could go all day. Well, at least until her next nap! Her sleep is much improved, thanks to some med tweaking, late-night snackies and pushing her bedtime a little later. She sleeps 10 hours overnight (7pm-5am) and still naps twice a day, but sometimes skips her morning nap and does two hours in the afternoon. It all seems very normal, very boring.

Her last visit to the oncology clinic revealed that her Mitotane (adrenal suppressant/chemo-type pill) levels are astronomically high. She should sit between 14-20 on their measurement scale (I think it is ppl) and her last three blood draws put her at 33-38, which is considered highly toxic and very dangerous. Her oncologists agree that these blood draws cannot be accurate as she would have severe cognitive impairment if her levels were indeed this high. So we are just shooting from the hip and keeping her dose the same and hoping for the best. It seems to be all one can do with cancer.

I have a heavy heart this morning as I have learned of two new relapses - one of them dire, the other still undetermined. It seems that all the kids we knew at BCCH have suffered relapses. I can think of two others who have not (yet) been affected since finishing treatment, and a good 7-10 that have. It's really, really hard. I know that spending seven months on the ward meant that we would see the sickest of the sick, and that there are lots of kids who have cancer that are doing great, but it's hard when the only ones you know are suffering or dying. It brings on the inevitable question of "when is it our turn?" I am on a support board for people with adrenal cancer and a whole bunch of them have passed away in the last three months. 99% of them are adults and most of them courageously fought for many years as this is a cancer that is slow-to-grow, but I have hard time hearing this.

...I don't want to think about this anymore today. It's only 9am and I can't spend my day sobbing. Eleanor gets freaked out, and does a weird laugh/cry when I do and I don't like it.

So here are some cute photos from the last few weeks!

Crankasaurus Rex after her swim

Early morning shenanigans

Late night snuggles

Daddy-Daughter time

Halloween!

Sleeping angel.

Moving and Shaking

Rainbow Bright

Eleanor had her Early Intervention assessment two weeks ago and I have been dreading writing a post on it. It is a relevant part of her recovery and a big part of her life right now, but it is so hard to face. Everything is improved since last time, which is great, but because she is six months older, the numbers seem so far off. Our EI specialist wrote out the basic gist of what her full report would be and left it with me. I let Eleanor play with it and kept stuffing it into her toy box during clean up. I did not want to look at it, so now it is a hot mess. 

I pulled it out tonight because a) I'm ready to deal with it and b) the recycling is going this week.

Sorting the recycling. And her diapers, just for good measure.

So here's where my 22 month old toddler stands (sorry, sits - unless she is holding onto furniture):

Gross Motor: 8+ months
Fine Motor: 11+ months
Adaptative (play skills): 12-13+ months
Language (expressive): 15 months
Language (receptive): 18 months
Personal Social: 12-15+ months

It's not the worst, I know that. It's just hard to see that she is on par with a kid born a full year later than her for some things. I thought her gross motor would be further along, and I'm fine with where she is at. Her tumour caused incredible amounts of muscle weakness and then spending 7 months on the flat of her back being pumped full of toxic chemicals did not help her get any stronger. But the fact that her play skills are falling behind is a bit shocking. I feel like that was in my control to help facilitate. I justify it by telling myself that while most parents or caregivers teach their kids to stack blocks and colour with crayons, I was busy injecting enoxaparin and changing the dressing on her central line. Basically, I am trying not to feel bad.

And while I am crying in the corner and licking my wounds, Eleanor has been busy. Very busy indeed. I know they aren't related, but in the past two weeks, Eleanor has had a massive development surge. It's like the lights came on after that assessment and she is growing in all sorts of ways. After 22 months of absolutely no attempt at audible language except "hi" and a few "h" words, she is repeating all kinds of words. She is terrible at it. Totally lousy, but you can hear her trying to say "quack", "duck", "block", "Atia", "Daddy". It's all there, and seemingly out of nowhere. After 22 months of wondering if she was understanding or just stubborn, she is acknowledging simple commands. After a year of only being able to sit and 4 months of army crawling, she is figuring out how to cruise. Again, really bad at it, but everyday gets a little bit better, a little bit stronger, a little bit more confident.

So yeah. It is will be six months until her next assessment and I can't wait. I feel like she has already surpassed so many of these markers that she will be all caught up by April. Can you imagine? Maybe that is overreaching but a girl can dream and a baby can grow and move and shake.

And crawl all over the couch and into the sunset.

Shame Spiralling in a Tub of Cornstarch

I'm so tired. My whole body hurts from not sleeping.

We are exploring a solution to Eleanor's overnight hypoglycaemia (we give her a double dose of cortef at bedtime), but it's hard to tell if it's working because she developed a cold. She is back up on her high dose of steroids around the clock to avoid a hospital stay, and she is Hulk-Smash-ANGRY all the time. I've tried to curb her activities so we don't infect others and she can recover, but she is past the point where our house is interesting. She climbs all the furniture, throws her toys around and then proceeds to climb on me. And scream in my face. And pull my hair. It is super fun.

When I awoke to the dulcet sounds of her screaming her head off at 3:55 this morning, I couldn't contain it anymore. I had an all-out, "WHY ME?" sob-fest as I tried to rock her back to sleep. It all seems so futile. If we double her steroids, she wakes with 'roid rage. If we keep her steroids level, she wakes with dangerously low blood sugar. So our next option is cornstarch. We have to feed her cornstarch before bed and this might solve all our problems. Seriously endocrine? This is your best solution?

So I feel worn out. Worn down.

Exhausted doesn't even begin to cover it.

This is just our reality now. We will have to figure out how Kris can do his job and I can get through the day with her while we exist on very little sleep. And I curse it! I hate it! I have never been very good without sleep and I feel selfish and protective over that aspect of my life. My body needs REST! And that is where the shame comes in. I can wake at 4 to a daughter who is in relatively good (albeit complicated) health, or I can wake at 7 and be like so many parents we have met who have lost their children. It's like that expression "I'll sleep when I'm dead", but much, much worse.

Ugh.

It's 8:30. I am going to bed and praying that tomorrow is better.

So so thankful

We had a lovely Thanksgiving this year. It was really simple - just family gathering and children playing. Kris made the turkey and the stuffing so my mum was able to relax and enjoy the day a little more. Eleanor was kept busy by chasing around her big cousins and I ate alllllllll the food. It was awesome. We couldn't help but reflect on our year and what Thanksgiving was like last year. Eleanor was crazy sick and I begged Kris to stay late at the hospital with me. Henry's grandparents were kind enough to bring a Tupperware container full of turkey dinner to us from Ronald McDonald House. We dined in Eleanor's tiny hospital room, the two us squished on my cot and whispered to each other about how much our lives sucked. It was a very different story this weekend!

Eleanor had a visit with all her doctors at the end of September and they all went pretty smoothly. We continue to struggle with early mornings (she wakes between 4:00 and 4:30 every day) so endocrine suggested we test her blood glucose every morning. Sure enough, it's super low. It levels out as the day goes on, but she definitely wakes up a cranky-pants. I don't know how we are going to fix this; maybe we can feed her cookies in her sleep? Liquified? But I am nerding out gathering all the data! We are tweaking a couple of her meds: we've cut her Mitotane down to twice a day instead of three (I think I mentioned that before), we've added an extra florinef to boost her sodium levels and we are phasing out her blood pressure medication completely! Her little ticker is doing great and the cardiologist thinks she will be fine without it. We will do an ECG in a couple of weeks to make sure he's right(!) and then we are only on adrenal replacement drugs. And her adrenal suppressant/chemo/insect repellent (Mitotane), of course.

I posted awhile ago about Eleanor pulling herself up to standing. It has become an obsession. She no longer needs a "flying leap" type take-off; she can sit right next to the couch/ottoman/chair/side-of-the-bathtub(!) and pop up. It's crazy. Well, it's not CRAZY, it's just...no, it's crazy! I was combing through photographs of the little lady from the spring, and I have this whole series of her sitting up and playing. It looks like nothing, but I took them because it was the first time she had sat up on her own. Until April she couldn't do that and now it's October and she can pull herself to stand. Pretty soon she's going to be cruising and then comes walking on her own! Gah!

I've been taking advantage if her good health/mood/disposition and have been taking her to various baby groups around town. She's making friends! There's this one little girl who thinks Eleanor is AWESOME. She sits really close to her and they hug each other lots. I caught her stuffing Eleanor into the oven in the play kitchen and she said that yes, she was baking the baby. So cute! She's only six months older, but she dotes on her like a little sister. Sweet.

Before I sign off for the night, I want to apologize for being a little MIA over the past little while. Eleanor has kept me really busy and her early mornings make for tired nights, so I haven't had the energy to post. So here's a super cute (and super blurry) photo of Eleanor and her bestest friend, Atia.

I Heart Cortef

So things have been really great lately. She has been on Cortef for the past month, and it has made a world of difference. Little bear is full of energy and is happy. She is eating a wide variety of foods. She is packing on some weight and has outgrown her 12 month sleepers, finally. We are booked to see endocrine next Friday and I am excited to see how much she has grown.

Eating plums like a big girl!

No more pre-masticated food for you.

I don't want to eat my food.

I want YOURS!

The fall means all her playgroups have started up again, and we are keeping our days busy in hopes of sleep-filled nights. Sleep still is a challenge. Girlfriend thinks that 4am, 3:30am, 2:30am... yeah, she thinks those are appropriate times to start her day. I keep thinking if we transition her to one nap that this problem will be solved, but she's so tired by 8am, it's almost impossible. Kris and I are tweaking a few things and trading night-duty in hopes that we can all get a little more sleep!

To say she is adventurous is probably the biggest understatement. Her confidence is growing by the second and she is becoming fearless with her gross motor skills. She is still rocking her army crawl, but she gets her knees up underneath her and has a great waggle in her hips. This new little swagger means that when the mood takes her, she moves really quickly. We came home from walking the dog the other day and were preparing to head out to pick Kris up from work. I put the baby in the living room while I ran the dog into the crate. In my haste, I forgot to close the front door.

Yeah. She's a monkey. She won't stay still for anything anymore. Diaper changes were starting to become a challenge because she can flip over so quickly! I am very proud to say that I used my university education to combat the problem. My BFA is finally paying off! I channel my best Liza Minnelli and sing "I Gotcha!" from Liza with a Z, complete with hair flips and head rolls. Eleanor loves it, and let's be honest, so do I! In case you DO NOT have a BFA and are NOT familiar with the song or choreography by the legendary Bob Fosse, permit me to educate you.

She's also started expressing herself. We are getting some hints of temper tantrums and willfulness. Up until now, we really haven't had major issues with behaviour. I think she has spent most of her life feeling so crummy, she hasn't had the energy to fight us. Now that she is feeling good, it is time to catch up on all those terrible twos!

She decided she didn't want me taking photos of her the other day...

Even though the lighting was really good and she looked really cute and she was covered in the remains of a granola bar...

Her little lips quivered and started to fall...

And the waterworks started. PUT THE CAMERA AWAY AND CONSOLE ME!!!!

But speaking of expressing herself, we are working on a few words. She is babbling a lot and has some fun sounds that COULD be words if you turn your head the right way and the stars align and the SE wind is blowing at 15km/hr... Seriously though, she has added "ha(t)" to her vocab, which is very promising. She still has "hi" and she has also learned the baby sign for "dog", and that is a new favourite. The baby sign is way more fun than the ASL sign. You just pant. She loves Atia so much that she basically spends all her time panting. Or climbing on her. That's always fun. It's so great to get some communication going, though. I'm really excited to see how it comes along in the coming months.

And further proof that cortef is the best thing that has happened to our family, Eleanor has a little cold this week, but she hasn't slowed down at all. She's a total snot factory and she is a little cranky, but we are doing our damnedest to avoid a hospital stay and so far, so good! I feel like all our prayers have been answered. We are so blessed to be in this place of good-ish health. Long may it last!