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!

Back To School

Well, not really for us, but it's that time of year. It's a lovely time of year. I find myself speeding through school zones only to realize, "oh shnikes! I can't do that anymore!" and I curse myself repeatedly to slow down, slow down, slow down. It's easy to spot a school zone early in the morning or at 3pm, not so much around 11am!

There must have been a hundred schools between the pool and my house as I cruised home this afternoon, going 30km/hr regardless of school zone or not. I sat at the crosswalk by Willows and watched the new crossing guard chat with a couple of mums and their offspring as they safely crossed the road. One kid was getting a piggyback ride, one was on a scooter. They were ambling, in no real rush to get anywhere, enjoying each others stories from the day. I smiled when they looked in my direction, as tears flooded my face and sobs choked in my throat. It's so simple - this school-run business. It's the most basic thing to do; everyday the kids get picked up from school. Some go by car, some on bikes with their impossibly small helmets protecting their precious brains, some on scooters, some on foot. Some have parents pick them up, others go with babysitters, friends, grandparents. But it's the same ritual for nearly everyone and it's the same experience that everyone has - let's get from point A to point B and share something about our day. It makes me weak in the knees to be able to witness something so simple, so universal... I see these families, and all I think is "me too!"

I want what you're having.

Today I am thinking a lot about our friends who are at SickKids in Toronto. Lina's big sister Frieda was supposed to start kindergarten today, but because of Lina's surgery, she's had to skip it for a little bit. Lina's surgery was hugely successful; they were able to remove 95% of that stupid tumour and she's not paralyzed! Not even close! So I think Frieda is happiest to spend this time with her doting parents and her baby sister rather than in the schoolyard. Bless them all. And there's plenty of time for school-runs when they get back to Squamish (hopefully soon!).

This time last year...

just babies...

fighting cancer... 

No big deal. Hurry home, Lina!

My brother was married over the weekend. They had a very intimate service with just family and it was officiated by a dear family friend, Joe*, who also did our wedding. I spent a good deal of time chatting with his wife, Jill*. She was diagnosed with breast cancer a few months back and had surgery to get the tumour removed. I understood that that was all the treatment that was needed; she had caught it early enough and everything was fine. She revealed to me that, no, chemo and radiation were elective and she has chosen to go ahead with these nasty (but effective) options. She had her first chemo this morning and I can't stop thinking about her. Chemo sucks. It knocks the snot out of you, and it affects everyone differently. It's a long road and no one fully understands what you're going through unless they have done it themselves. I wish I could offer more words of support or encouragement. I wish I had some magic thing to say that puts it all in perspective, but I don't. I met a new cancer mum briefly when we were leaving 3B in Vancouver. She held the door open for us as we flounced out, beaming with pride at how wonderful our daughter was and how much everyone loved her. The woman asked us, "are you going home?" to which we babbled on about how we were just visiting and we had been there, but we weren't there anymore...and she just stared at us, like we weren't even real. I glanced down at her daughter who was hooked up to an IV pole via her arm and I asked how long they had been there. "Since last night". My heart broke. Her five year old daughter had leukemia and they were waiting to find out if it was ALL (very treatable, high success rate) or AML (baby killer). Again, I tried to muster some words of encouragement. I told them they were in the best place, that the staff were unbelievable and they would both be looked after really well. I searched my brain for what I would have liked when I was first waking up in hospital, so I hugged her. I'm not one for hugging strangers, but it was all I could offer, from one mother to another. I whispered "it's going to get worse, but it will get better. Eventually". So Jill*, if you are reading this, it will be the worst, but it does get better. Eventually.

Andrew and Allie's wedding was lovely. The weather cooperated for the most part and a good time was had by all - especially little Eleanor, who partied til 8:45! Kris and I were shocked. Normally she craps out around 6 at these kinds of things, but she sat up at the table and happily munched her cousin's garlic bread while the speeches went on. She was doted on by everyone, which probably helped keep her content. Girlfriend loves being the centre of attention! I'll sign off here with a couple of photos from the evening. It was a lovely way to say "Adios" to a pretty long, hospital-filled summer! Happy Autumn everyone!

*names have been changed to protect privacy

Bizarro Eleanor

We had the strangest experience yesterday. We went to the beach and Eleanor had fun. She refused to wear her hat and she played. She didn't bury her head in my shoulder and look miserable, she giggled! She ate sandy Goldfish crackers and squealed in delight! She even crawled around a bit! It was the strangest thing. She seems to be...happy. I don't even know who this child is. She's had brief periods of happiness before, but girlfriend has been consistently happy since we got home last week. It's amazing.

We are hoping this happiness continues over the weekend for my big brother's wedding. They are having a quiet, at-home service, so hopefully Eleanor will be on her best behavior. With only 20 people in attendance, it will be really hard to shift the blame! I've been having a mini-fashion show all week trying to determine what is the cutest possible dress. I even bought her clips for her hair(!), but those have been strongly vetoed by her lady ship. It doesn't really matter what she wears, I know, but I stumbled across some photos from her birthday and Christmas and wow-wee. Those are some rough photos. Alabaster white with no eyelashes or eyebrows and big circles around her eyes. Poor little bear. It doesn't seem that long ago, but she is SO FAR from that sick little girl. Even with all her hiccups and health scares, she is still not as sick as that chemo baby. So I like to dress her up and take smiley photos of her when she is looking and feeling good. It's like if I keep filling my phone/camera with good photos, it will erase all the bad. And this weekend's nuptials will be the perfect venue for sweet photos. Facebook, you have been warned!

Here's a little preview. This is her happy place - half standing, half lying down. Perfect.

6-month scans

What a whirlwind!

We were discharged from Victoria General late Saturday and fifteen seconds later we were on our way to Children's. Well, not exactly, but it felt that way. We got to our hotel Monday evening and were out the door at 6am Tuesday. We tried to make it up to 3B for shift change so we could maximise the amount of nurses we could see. We got there a bit late and they were in their meeting, so we quickly said "hi" and checked Eleanor in at radiology. Her scans took a bit longer because they did an MRI of her head and pelvis as well as her abdomen. Endocrine had ordered that as well as a stimulation test to figure out why she has pubic hair and breast buds. Once she came out of sedation we headed over to the oncology clinic to get the results. We were lucky(?) enough to run into our favourite family from Squamish. They were in for their last appointment before they head off to Toronto on one-way tickets to have a very intricate and risky surgery. I just adore Lina and her big sister Frieda so much. It was wonderful to see them, I just wish it could be in better circumstances! After waiting around for a bit, we were sent away. Apparently Dr Schultz didn't think it was necessary to see us, so we took that as good news and ran away!

Best people ever.

We made another trip to 3B before we left to say "hi" properly, and it was incredible. So many familiar, kind faces and hearts. I have such a hard time explaining how much those people mean to us. They are the best, and they were so thrilled to see Eleanor doing well. It sounds like things have been busy and a bit tough around the ward, so hopefully Eleanor's giggles and smiles were enough to brighten their day. Oh, and a number of nurses and one of the residents mentioned they have read this blog but some were concerned that it might be an ethical issue because I didn't invite you. Please consider this your invitation. I am thrilled to hear that you want to follow Eleanor's journey! It's very touching and fills me with warm fuzzies.

Wednesday was a bit tougher. We came in early for a quick, impromptu consult with a genetic counsellor. We never got our requisitions for the blood tests to find out if Kris or I am carrying the Li Fraumeni gene mutation. We talked with a geneticist ages ago and she reassured us that it was highly unlikely that we had it as our family history has no evidence of it, but we thought we would at least get the reqs and then make our decision about the blood work.

We then headed over to endocrine to do her stimulation test. They left her IV in from the sedation the day before and we hoped they would be able to use it to avoid another poke. They could definitely put things IN but they had a hard time getting blood OUT. This made the test a little tense. They had to do an initial baseline blood draw and then again 20, 30 and 40 minutes after the hormone stimulant is given. The baseline was tough to get; they had to "float" the IV out a bit to get the blood going. After her traumatic experience last week with IVs, this did not sit well with Eleanor. At all. She was seriously worked up, but it was over soon enough and she had a little nap. I switched off with Kris and went out to meet another cancer family I hadn't seen in ages. No sooner had I found them than my phone started buzzing with frantic text messages from Kris saying "COME BACK QUICK". I ran back to the test room and found Eleanor happily munching on Goldfish crackers and the nurses looking completely frazzled and freaked out. Apparently during the blood draw Eleanor screamed so hard she lost consciousness for a bit. She came to fairly quickly, but no one wanted to continue with the test. Her endocrinologist was so concerned about her, he sent us down to cardiology to get checked out.

So we went! And waited and waited and waited. She had an echo and an ECG, which I guess is handy because she is due for another echo pretty soon! When we finally met with the cardiologist, he was delighted to see her heart looking so GOOD (he had been around in the beginning) and dismissed this episode as a Breath Holding Spell and nothing more. He even encouraged us to take her off the beta blocker as her heart function was perfect.

So all in all she got an A+ from cardiology, a solid B from oncology and an F- from endocrine. Hopefully they will have enough info from the one blood draw to determine if she is in precocious puberty or not. Even if they don't, I am not sure we will be repeating that test anytime soon! I'm bummed out that Eleanor has become that kid that fights everything and screams the loudest. I know kids her age that are happily distracted by bubbles or music or toys, but none of that seems to phase her. She really hates being physically controlled. I keep thinking it is our fault as parents - that we are somehow bringing too much stress into the situation. Something to think about anyways. But hopefully she won't need any IV starts or excessive blood draws for a looooong time! Just her monthly poke and away we go! Fingers crossed for NO MORE HOSPITALS!!!