Clean up, aisle 4

It took a little longer than expected for Eleanor to get over her line removal surgery. We realized after the fact that she should have had an extra steroid administered during the procedure to help her body deal with the stress of recovery. Because we didn't do this, she had a small adrenal incident last week. It wasn't too bad, but enough to make Kris and me tear our hair out (hence this post). We met with a new endocrinologist this week and she confirmed it for us. She is also helping us get to the bottom of Eleanor's pubic hair situation. She might be suffering from something called precocious puberty, which is a result of her body being exposed to too much testosterone. She seems to have swung too far in the opposite direction and is now producing too much estrogen. It's not a huge deal if we catch it early; she just needs a shot once a month to keep it in check. But if she does enter puberty, her bones will fuse and her height will be extremely stunted, so we have added estrogen to her looooong list of things to test in her blood work.

Speaking of blood work, we tried to do her first draw without her line. It didn't go well. It took four people to restrain her and the lab tech was unable to get any blood from the only vein she could find. We are going to try again this week. Keep your fingers crossed for better veins!

On a cheerier note, Eleanor had her first bath without her line tonight. It was a high note after a long couple of weeks of stress.

So yeah. It was pretty awesome. We have also started physiotherapy again and she is already getting more confident with her gross motor skills. She was showing off in the tub...

Away she goes!

Shoo flu, don't bother me

I caught Eleanor's bug this week. I'm on the mend now, but had to spend a few days in bed. I'm still feeling pretty worn out, but I wanted to share this video of daddy/daughter monkey business. Enjoy!

Easy like Sunday morning

She's not well; something is definitely off and I have no idea what it is. She has thrown up her mitotane repeatedly which she hasn't done since her chemo days. Her bowels have been quite loose, but I wouldn't call it full blown diarrhea. She is just off.

I woke up at 1:30am last night to the sound of her being sick. We changed the sheets and cleaned her up as best we could and attempted to settle her back down. She was agitated and irritated and pulled her NG tube loose. She hasn't done this in MONTHS, and I thought I could get it back in. I failed. I made her throw it up. Shit. We immediately started to panic about her fluid levels. She was already low for the day and we had banked on the overnight feed to catch her up. I phoned the hospital to voice my concerns. I told the pediatrician on the phone about her fever last weekend, her surgery and her subsequent difficulties. The pediatrician asked me "why did you take her central line out?", and I couldn't immediately respond. Maybe it was because it was 3am and I was covered in baby vomit, or maybe it was because I don't really know why we took it out. I looked at Eleanor - so naked without her NG tube and her line - and felt so helpless. She's got no immune system, no adrenal response, no vascular access and now no tube. "She's done chemotherapy?!?" I offered the doctor meekly. That was good enough for her. She assured me Eleanor wasn't in adrenal crisis and we should come in in the morning to replace her tube.

We did, and she's having a monster nap now. We are running fluids like mad trying to get her caught up. I hope it helps and she can kick this bug. I hope it doesn't escalate into something yucky. I really hope she feels better soon.

Here's my vulnerable, naked-faced baby this morning before we went into hospital. I know I am biased, but she might be, hands down, the best looking kid I've ever seen, in the whole wide world, ever. Again, I am a weeny bit biased. Just a little. Tiny bit.

Before & After

Or after and before, as the blogger app won't let me load the photos in chronological order!

And then everything changed

Yesterday was an exhaustingly huge day. We got to the hospital two hours before her procedure and I stood in front of the parking meter for a good three minutes trying to calculate how long we would be there. Four hours was enough, but sometimes Eleanor's quick blood work check-ups take that long, so I plugged in six hours and hoped we would be out of there sooner. We watched the educational, "so-you're-going-to-be-cut-open" video and chatted with all the nurses. Because I would be with her til she fell asleep, I had to put on my Operating Room scrubs. This all took about 45 minutes, so then we waited. Alix and Jo were there as Henry was also getting his line out, but Henry is a year older and has no patience for bobblers. He also knows his limits and went down for a nap. Eleanor was all jacked up and excitable so my attempts to make her nap were not fruitful. At 12:40 (her scheduled operation time) her surgeon came in and briefed us. Then another hour passed. We were finally taken to the OR, and it was a little freaky. For Eleanor's last surgery, I think she was too young for me to come with her. The hospital has a policy about kids under a year... Hmmm... I don't really remember...

Anyway, we waited in the holding area and Eleanor was showing off and charming the pants off the other patients. The anesthesiologist confessed that he wasn't 100% comfortable working on a) a child so young and b) a child with such a checkered past of anesthesia, so he was bringing in back-up. He was so apologetic about Eleanor's condition, which always makes me uneasy. Please look at her before you apologize or try to make me feel better as she is pretty clearly awesome. I'm just saying...

Then we went through to the OR and there were a lot more people then the three or four I was anticipating. It looked like a car factory. I had been told that the procedure was really simple and at Children's they do it in the clinic, yet here we were in this giant room with tons of people and machines. Eleanor stayed nice and calm and I let her snuggle my arm while they administered the anesthetic into her line. She dropped off to sleep and I was quickly escorted out of the room, out of surgery and found myself back where we had started faster than I knew it. I quickly got changed and ran downstairs for a coffee. Whenever Eleanor is NPO I feel so guilty about eating or drinking so I often go without. But I'm free for twenty minutes so COFFEE!!!

And then everything changed.

As I was waiting in line and regaling all my adventures to Kris on the phone, I recognized the man in front of me. "Graeme?" He turned around and with a big smile and said, "we've got a boy". I paused for a second - of course you do - Spencer!! Spencer is a year older than Eleanor and started his battle with a brain tumour a few short months before our journey. Kris and I had become quite close to their family as Kris and Graeme were on the same work-3-days-hospital-4-days routine and Eleanor and Spencer took turns being the most barfy/complicated/adorable babies on the ward. The Tucks are basically a better version of ourselves, and we adore them. But then I realized what he was talking about. His beautiful wife had had their new baby!!! A brand new baby boy...

All of a sudden the vision of the scary OR disappeared. The memory of telemetry IV poles and sleepless pukey nights and death down the hall and all the horrible things that happen in the hospital disappeared and was replaced with LIFE. With LOVE. With sweet, newborn babies and warrior women and proud papas. Terrified screams turned to tiny baby mews. Harsh florescent light became sunlight behind closed curtains. All that is wrong in the world is suddenly right. Spencer is a big brother. Spencer, with his excellent prognosis, clean bill of health, long eyelashes and ladykiller grin, now has a baby brother.

I am so far beyond thrilled for them, I don't even care about Eleanor's surgery, I just want to run up and snuggle this new creature. I eventually regained composure and dutifully collected my distressed daughter. She immediately fell asleep in my arms and I gushed to to Alix about Jenn and the new baby. When E wakes up, I made a break for the mother babe ward. Seamus is an angel. He looks exactly like Spencer, and I am instantly overwhelmed. It's like seeing Spencer reborn, new and tiny and perfect.

Babies are so incredible.

I drag myself and my fussy baby away and return to my car. No parking ticket, but it was over six hours in the end. Eleanor slept hard and long. She slept for 13 hours overnight and has napped 3 times today.

Seamus's birth changed the whole day for me. It no longer was just about the end of treatment, it was about the transformation of the relationships we have forged. It was serendipitous that I ran into Graeme and that Henry was having his line removed the same day, but the whole experience left me sad - we will never again all be seeking refuge in each others rooms in 3B. We will never again all walk laps of the outside deck with a babe in arms and an IV pole in tow. We will never again trade stories over a late night cup of tea (or wine. Thanks Alix!). We will all go back to our respective corner of the island and live our lives. We will trade Facebook messages and hope that our long term follow up appointments coincide, but we will never again share those moments. Not with each other anyway. Maybe that's the way it is supposed to be, or maybe I'm totally wrong and we will all remain close. I don't know, and I don't know exactly how I feel, but I am definitely feeling it strongly.

Covered in feelings, my friend. Completely covered.

Goodbye Stranger

Eleanor is scheduled to have her central line removed tomorrow. Even as I write that, I am full of doubt that it will happen. Having your line taken out is a big deal; it means no more blood work, no more transfusions and no more chemo. It means she is done her active treatment. She will have routine blood work once a month, and they will have to poke her to do it, but no more dressing changes, cap changes or heparin-locking. She is no longer "high risk", so when she runs a low grade fever (as she did on Sunday), we don't have to rush into hospital for antibiotics.

This is a milestone I thought she would never meet.

After our first trip home in August, I met a young girl in the clinic who was having her line taken out. She was woozy from anaesthetic and climbed into the lap of the doctor I was speaking to, clutching a plastic baggie that contained her line. The doctor gave her a big hug and congratulated her on being so brave. I immediately burst into tears; it was so fucking sweet. The doctor turned to me and said, "she will get there one day, too". I hated her for saying that. She didn't know Eleanor and we had just found out the week prior that, despite all our efforts, the cancer had spread. Obviously her line was never coming out because the chemo wasn't working and she was going to die. Or so I thought, at the time. I thought that when you have cancer, you go through a regime of chemo and you either go into remission and become the cutest, pig-tailed little girl in your doctor's lap or you die. With your line in.

But here we are - the night before her line removal surgery and a relatively clean bill of health. Even with her lung nodules, she's thriving.

As I lie here with my baby girl slowly drifting off to sleep next to me, my mind wanders back to the night before her line was put in. We spent it curled up together in a single bed in ICU. Our nurse woke me at 4am to feed Eleanor, but she wouldn't go back to sleep. I was under strict orders to not let her cry or fuss; any stress on her over-taxed heart could have been fatal. I ended up wearing her in the Ergo and swaying back and forth for eight hours. It was supposed to be four, but her surgery was pushed back. It's so different tonight. Eleanor is calm and happy and quietly snoring as she holds on to my arm. We are at home, safe in my bed, miles and miles away from the hospital. It's really nice.

I can't wait for tomorrow. It feels like Christmas. But I won't believe it til I'm clutching that line in my hand.

Sleep tight, little bear. Tomorrow is the first day of the rest of your life.

Sunday

Gosh, what a crazy week it's been. It felt like we never stopped moving. We had a bunch of playdates and visits from Granny and a couple of doctors appointments thrown in for fun. By the time the weekend rolled around, I was happy to sleep in a bit and not do anything, which is unusual for me. Usually I am bossing Kris around, taking him on death marches (walks by the ocean) and forced family fun, but we have laid deliciously low for the past two days. It was necessary. This week coming is pretty quiet, but you never know what is going to happen!

Case in point, Eleanor had a little episode today. After our morning walk, she started to get fussy. I put her down for an early afternoon nap. When she woke, she was burning up. Her temp wasn't that high (37.5), but she was definitely warm and irritable. I took it again half an hour later and it had gone up (38.2), but still not to fever-range (38.5). I called the hospital to find out protocol as we did not want to stay overnight in the paeds ward if we didn't have to. There are so many bugs there, and she would be so susceptible to catching something. He told us they would run antibiotics in an isolation room and if her counts were decent (which they should be), we could go home. He suggested we wait an hour, and if her temp was the same, we should head in. We gave her a heavy dose of steroids, lots of fluid through her tube and by mouth and sure enough, her temperature went back to normal. It's still fluctuating a bit, but hasn't gone over 37.6 in a couple of hours.

I don't like this sort of thing happening at home. It's such a crapshoot for us and it's not an oncology thing - it's an endocrine issue, which seems a million time worse. See, we have been adjusting Eleanor's steroid. We were told that 0.8ml of prednisilone was optimal for her, and we have kept her at 1ml because last time we tried to drop it, she ended up in PICU with an acute adrenal crisis. We are nervous, but thought she was ready, so over the past week, we started lowering the dose, 0.1ml at a time. Balancing hormones and steroids seems much more like an art than a science. I'm sure it is based on fact, but a lot of it is how the patient feels. That's very tricky with a bobbler (toddler that doesn't toddle around and is still very much a baby). Try as she might, she can't communicate her symptoms very well. She is also quite a bit bigger since she last saw her endocrinologist at Children's. I'm clearly still trying to figure this all out...

She's sleeping soundly now and is nice and cool. Her breathing is even and she seems okay. Nevertheless, I am scared to leave her alone. Acute adrenal crisis is not fun. Not one bit. I hate thinking that my restlessness and get-up-and-go attitude has contributed to her health hiccup tonight, but that's probably exactly what caused it. That, and missing 0.2ml of steroid. I don't know. I'm somewhere between exhausted, bored and terrified and I'm very much looking forward to tomorrow and our clinic visit!

I would also like to do a shout-out to all my friends and family in the UK and ROI who are celebrating their mothers today. I know some pretty kick-ass mummies over there, some very new and some seasoned vets, and they all deserve a lot of love and recognition. I'm thinking particularly of Emily, Yvonne and Eleanor's great-grandmother Lily. I hope you ladies had an excellent day. You are amazing.

Bath Time

Bathing is a luxury for our little bear. Because of the risk of infection in and around her line, she only gets a full bath once a week. She loves it. In a few short weeks, she will never have to get out of the water. We met with her surgeon and anaesthesiologist for her line removal, and everything is ready to move forward. We are so excited!

Eleanor is too.

Remember when...?

It's Eleanor's 15 month birthday today. This is a pretty insignificant "month birthday" as far as "month birthdays" go. She is halfway between a year and 18 months, which I guess could mean something? But really, it does not. It seems to be standing out as something today, though. A year ago, Eleanor was 3 months old. My math skills are killing you right now, aren't they?!? But yes, the truth reveals that one year ago today, my daughter was 3 months old.

Oh, hi!

And one just for cuteness sake

She had figured out how to bat the toy that played "Twinkle, Twinkle" on her bouncy chair and was a wiggly, happy little baby, threatening to roll over and never stop. It was the last month we did the obligatory "month birthday" photos as it was the end of our happy, wiggly little baby. By the time she was 4 months old, her newly sprouted pubic hair had changed from peach fuzzies to long, dark strands, her acne had erupted across her forehead. She stopped wiggling and she stopped being happy.

Sometimes I mourn the loss of that baby, but rarely. I don't think of Eleanor as a newborn very often. When I think back to our time before the hospital, before diagnosis, I think of that sick, fat, unhappy child. The child that had nothing wrong, but everything was wrong. I remember almost every day from 3 - 6 months with pristine clarity, but ask me about her first months, her HEALTHY months, and I can't tell you much. She was lovely in the sense that she ate well and slept well enough (at least 3-4 hours at a time). She liked the stroller and the car seat and she was fairly receptive to new people holding her. It's all a bit mundane as I could be talking about any newborn.

I suppose I never think of Eleanor that way as I don't identify with her as healthy. I know her as "sick". It's not unreasonable to think that; she has spent majority of her life battling cancer, so it makes sense to think of her that way. I was blond for the first two years of my life, but have been dark brunette ever since. No one would ever say I was blond because I was born that way... and yet, I feel terrible for remembering my daughter only as "sick". She will grow and get better, and slowly the scale will tip and she will (again) have spent more time out of hospital than in. The tubes, catheters and lines will come out and she will walk and her peach fuzz will grow into long, raven locks.

And there's the rub.

Her peach fuzz is back. It's all over her pubic area and every day it gets darker. I know her testosterone levels are negligible, and that it is very unlikely to be anything, but it's like this whole, awful year is starting all over again. Every time I change her diaper or give her bath, I come face-to-face with fear, with sickness, with death, and I wonder how the fuck are we going to survive? How are we going to live through her getting sick again? What if the scales DON'T tip and our memories are only those of a sick baby?

I guess that's why we get moments like this:

I know I shouldn't complain or stress about the future. A lot of kids get sick or hurt and never get better. They never get to experience this no-mans-land time. Things just got worse for them. She is not sick right now, and I am obsessively capturing every movement on video, every smile in a picture. I even make "Voice Memos" of her babbling. I want to remember every second of the good times. We are very lucky in a lot of ways. Just really unlucky in one big one.

Here's to a better year, little bear.

Uncle Leo! Hello!!!

Eleanor is wearing a super cute outfit today, so I tried to take as many photos of her before she covers it in food. Her dress is courtesy of her big cousin Bea (as are most of her clothes), who we had a lovely lunch with yesterday. Well, it WAS lovely until I started sobbing because the baby kept hugging and kissing Bea. Oh god, it's making me teary just thinking about it. Jack was making her screech with delight by making silly faces. It may have been the loudest, silliest lunch we've ever had. Eleanor absolutely adores her big cousins, but I have never seen her express her love so clearly.

Anyway, back to today. She was playing peekaboo with her bag of apples and I caught a couple of shots, which I've posted below. I should state that she was SUPER happy, but something about her new eyebrows make her look so angry. Or crazy. Or both! She reminds me of Jerry's uncle Leo on Seinfeld when Elaine paints his eyebrows on after his get burnt off in an explosion and his doctor thinks he is being aggressive and "difficult".

We got some good news about the blood work from last week. It appears that E's testosterone and DHEAS levels are still negligible, which means her remaining adrenal and any erroneous adrenal tissue (lung nodules) are inactive. Quiet adrenals mean quiet cancer! Great stuff.

Another piece of happy news is Eleanor's little legs. Trudi had her "walking" around Crumsby's yesterday, and we were both impressed that she was taking a little weight. I tested her today by holding her upright against a chair. Once she was holding onto the seat and her legs in an appropriate position (and I found the courage), I let go. To my complete surprise, she didn't collapse. She didn't even buckle. She stayed standing and for a second looked like a normal toddler, cruising the furniture. I didn't let her stay in that position very long (hence no photos), but I am excited to try again later. Sometimes it feels like her gross motor skills will never catch up, and then with one action, she blows all doubt away. She's going to get better. She's going to walk and run and play. I love her so much. I'm so friggin' proud of her today.

Here are the photos of her sweet spring dress and angry brows.

In Like A Lion, Out Like A Lamb

She's a queer one, that Eleanor Goudie. We were out at the clinic yesterday for a routine blood chemistry check/insuflon change/ease my worried mind visit when Eleanor's temperature began to rise. She was a little off all day, but nothing crazy and I chalked it up to teething. Eleanor had other ideas and caught a little bug! They started her on antibiotics and gave her Tylenol to make her more comfortable. We were able to avoid staying overnight because her blood counts were so good (thank god!) and home we went. She was absolutely fine overnight and save some gross poop from the antibiotic, she's been fine all day! It was so weird and almost anticlimactic as it was resolved so easy. No ICU stays, no calling in specialists, just some medicine and "call me in the morning". It's so...normal. It's very stress-free and I think I could get used to this... Yes, indeed!