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!!!

THAT girl

It's all becoming a little too familiar. We bring our own meds, we administer them ourselves, we draw conclusions before the doctors. And yet, we can't seem to get it right. We were JUST here six weeks ago! She keeps crashing and her body fights to hold on. Her electrolytes go crazy and she becomes dehydrated and she spikes a fever. And it comes on so fast. She was fine Wednesday morning. Totally fine. By Wednesday evening she was a little cranky, but she's Eleanor! Girlfriend has MOODS and FEELINGS and she is going to let you know about it and she wasn't that bad. Then Thursday morning arrives and it all goes haywire. Her respiratory rate was really high and she was a horrible grey colour when she woke up. We doubled her steroid and gave her breakfast. She happily ate a piece of toast, blueberries and some Cheerios. She snuggled on Kris's lap and when I picked her up 15 minutes later, she was boiling hot. Kris and I had a laugh about how hot he is (ha.ha.ha), but when she didn't cool down after a minute or two of being out of his hotness (again, hilarious), we took her temperature again. It was 37.7, which isn't technically a fever, but it was close, so we gave her Tylenol and prepared for another hospital stay.

It was a long day. We went by endocrine first and quickly discussed a plan with them and then went to oncology to do her monthly blood draw and see a pediatrician. Unfortunately everyone else in the hospital wanted to see the pediatrician so we spent most of the morning waiting. When he finally arrived we hooked up an IV and gave her more Tylenol as her temp was waaay up. The IV was a bit of a disaster. She was really dehydrated by that point and her veins were not cooperating. After trying and failing for 40 minutes, they gave her a sedative to stop her jerking away every time they poked around. Yeah. Even though she has three people holding her down, she still needed a sedative. Crazy. She has so many bruises as a result. Anyway, they ran high doses of steroids to be repeated every six hours and started her on two antibiotics to be safe. Her fever wouldn't quit for the first 24 hours which is crazy to me. Usually Tylenol does the trick, at least for a little while! Not this time, though. The docs began to lean towards some sort of virus rather than an infection at this point, but she had no other symptoms. When the fever finally broke, it became clear to everyone that she's not sick. She's just routinely bring crippled by adrenal insufficiency.

She's THAT girl. That one who will always be sick. That one has to be extra careful all the time. It's no different from that kid allergic to everything or that kid with asthma, but it is frustrating as hell to have a kid who wakes up threatening to die.

It's not even the big C! This has nothing to do with her cancer. Well, the cancer made her this way, but it's not making her sick. When I talk to the doctors or nurses or even other patients, I don't bother mentioning cancer. It's just adrenal insufficiency. Straight up.

I met with her endocrinologist again yesterday and we are shaking things up. She agreed that two hospital stays in two months is too much. So we are doubling her florinef which will stop her sodium dropping and potassium skyrocketing. And we are switching her onto a different steroid (cortef) which shows up as cortisol in your blood, so we can track her levels. It's given three times a day, which mean we will have to wake her to give it to her, but it will mean shorter periods without 'roids in her system (good thing). And if she still has too many highs and lows, they can hook her up to a pump that delivers it 24 hours a day. I balked at this suggestion initially as it conjured up images of feeding tubes and feeding pumps and IV poles and awfulness, but in actual fact, it is a tiny subcutaneous catheter that would be in her belly. The pump is a little waistband (smaller than a fanny pack) that hooks up to the catheter. She showed me a toddler wearing it, and I would never have know if she hadn't told me. It looked like it was part of his cargo pants. Apparently they use it for people with diabetes all the time and she started using it on kids like Eleanor who can't get their levels normalized and keep running into trouble. I don't know if we will do it, but it's pretty cool...

This post is all over the place, I am afraid. If you have made it this far, congratulations! And I am sorry I didn't edit it. I just don't want to. I am taking a much needed break from the hospital after 48 straight hours. I know I did 48 straight DAYS this time last year, but we've had it really good for a long time now, so 2 days feels like forever. We are hoping to get discharged today, as she is doing fantastic, but we might have to stay another night to make sure the steroid-weaning process is going well.

And then we leave Monday for her six-month post-treatment scans in Vancouver. Oh right. That other condition. THAT cancer...

It's hard to keep track sometimes.

Joy.

That is all.

Monkey Girl

We had a good physio session yesterday. Good? It was great. Fantastic. Stephanie brought this blue foam box for Eleanor to climb over as I had been lamenting over how much she likes to climb on the printer, the dog, her scooter and gives me a heart attack every single time. So enter blue box! It is totally unassuming, but the second Stephanie put it out, she was all over it. Up-down, up-down, over and over and over again. She couldn't get enough of it. So this morning we decided to add to the fun and push it up next to the couch.

I put Dolly on the couch for extra incentive

Up!

Dolly comes down

Dolly goes right down

Once more unto the breach, dear friends

Once more!

Big push

And we are off!

Hi Atia

Hi Mummy

Going...

going...

gone.

And back to giving Mummy heart attacks!

Food, Glorious Food

Food, glorious food!
Why won't you just try it?
Three banquets a day,
Your least favourite diet.

Just picture a great big steak
Is it just your 'tude?
Oh, food!
Nourishing food,
Fattening food,
Glorious food


I found this blog today that sums up our life quite nicely.

We are living off a diet of Triscuits and Cheerios. It is unbelievably frustrating, especially when she was eating so beautifully. Even fool-proof foods (like cheese!) are getting a big thumbs-down. She cut 6 new teeth in the last couple of weeks, so in return I am cutting her a little slack. It doesn't change the fact that I am still tearing my hair out come mealtime! I just hope it is teeth and not because we are taking her Prednisilone down to a "normal" range. She's just like a delicate flower; a delicate, ANGRY and LOUD flower.

We have been laying low since our hospital stay, with an occasional beach day or trip to the pool. She kind of enjoys the pool, but she really hates to be outside. She is extremely photosensitive and refuses to wear sunglasses. Girlfriend is now 20 months old and gets bored. Fast. I'm trying to show her how much more fun it is outdoors, but her face stays firmly buried in my shoulder. It's just another hurdle we face in the laundry list of our daily routine.

Everything seems to be getting harder at the moment. Eleanor is in good health, but her irritability, lack of appetite and sleepless nights are very wearing. We try to stay grateful as news keeps pouring in from other families we know and none of it seems to be good.

Day to day stuff gets really hard when bad news is all around.

I hold all the children and families of those children in my heart. Every night when I creep into Eleanor's room, I watch her perfect little self sleep and say a prayer for everyone we have met on this journey. It is devastating to hear about children fighting for their lives. Babies. Wee ones. Sometimes it gets to be too much to bear. Seeing all of them struggle and know that it's only a matter of months, maybe years, before we go down that path. We cross our fingers and our toes that Eleanor's story will be different, but all these stories hammer it home.

Cancer sucks.

Shouldn't the good moments be unbelievable when we have so much to be grateful for? Why do they feel so bittersweet? I care a lot about those kids who are suffering relapses or complications, I guess. I am greedy; I want all of them to get better, Eleanor included.

"Please sir, I want some more (children to win their battles)."

More?!??! MORE?!???

Oh, speaking of which, Eleanor is now signing! She can sign "want" and "more". Her "want" sign is really more of a "GIVE IT TO ME ALL RIGHT NOW", but her "more" is cute and precise and she knows exactly what she is saying/doing. The first time she did it was for a balloon we were playing with, and I literally ran out of the room crying and screamed, "Kris, she SIGNED!" And then I realised I probably should go back to the balloon game and give the poor girl "more" because that's what she asked for! Whoops. I'm excited to try and teach her a few more signs as girlfriend is really stuck on only saying "hi". Daddy allowed Eleanor to film herself and this is what she came up with.

"Hi" is a great conversation starter, but she's going to need something to back it up. Cuteness can only get you so far!

Running and other nonsense

I haven't been posting lately. I've been distracted. I signed up for a half-marathon and got really excited about training and setting goals and carving out a little time for me. I got so excited I signed up for a full marathon as well! This past month has been all about running. No matter how crappy my day has been, I know that after Eleanor goes to sleep, I can sneak out and take care of business. It's given me direction and focus and made me feel just plain good.

As the half approached, I started to become very aware that while I was putting in fairly good mileage, I wasn't very fast. I knew I could do the distance, but I knew it would be slower than I used to be. While that makes sense in a rational person's mind, I couldn't accept it. So during the race yesterday, I tested my pace and pushed a little too hard. I backed off and when I watched the two-hour finish time pass me by, I didn't have the heart to keep fighting. I became distracted and disheartened. I was thirsty and bored. I had a cramp. That girl's shorts are too short. That guy looks pervy. Oooh, I like those shoes...and so on and so forth. I finished 15 minutes off my PR and totally devastated.

I came home to my daughter and husband who allowed me to mope - but only for that evening. And rightly so. If I have learned anything from my lifelong obsession with musical theatre, it's that the sun'll come out tomorrow. I had trouble falling asleep and Eleanor woke up fussing just after midnight. As I wrestled with her to go back to sleep and came up short for three hours, I realised that my PR days might be behind me. Being a mum is pretty draining in the best of circumstances. Not only did I have a baby, I had ELEANOR. She's not just a cancer baby, she's a cancer baby with an adrenal insufficiency. She's seriously complicated! And she's exhausting! So my time sucked. So what?!? It's amazing that I can get out of bed every day.

So I am cutting myself some slack. I'm going to keep working towards the marathon in two months time and concentrate on finishing. If it takes me five hours, so be it. I just want to DO it. And NOW I am done moping. Officially.

And Eleanor didn't miss me at all. She partied with daddy the whole time. I walked in and she looked up like, "oh yeah, I remember you. Got any Goldfish?"

(I kid. She kinda likes me.)