Evie Update #22

Hey gang,

Still there?  Who knew I neglected updates this long...eesh.  I'll try and make this one a quickie....but I must say this explains why I was getting so many questions!

Where we left things last March after Evie had surgery, we knew Evie needed to start more treatment but her team definitely took their time deciding what the best decision was going to be.  Given Evie had previously tried 4 other protocols, it was time to maybe think outside the box a little bit.  After much discussion, we agreed to a new line of treatment on a trial basis, which started in May.  The chemo itself is meant to be very low impact on her daily life: its a liquid that we give her orally at home every morning.  It does not compromise her immune system, and it has maintained a fairly normal quality of life. 

Now being eight months since she started, I can say that Evie being on this drug has not been all roses and sunshine.  It's true, she has been able to go to school and her activities, she attended camp and even went to her first full weekend at Camp Ooch in the fall (!!!) but there have been difficulties.  As this drug is very new, it is very closely monitored.  This means I'm at the hospital a lot with Evie, and she is being monitored with a whole bunch of tests to see how the drug is working including x-rays, ECG's, and Echo cardiograms - all part of her new routine.  This would be on top of the other regular follow ups with her other departments.  There have also been side effects.  Most notably, Evie developed a skin rash.  It started over the summer, and gradually got worse throughout the fall.  We had been treating it with a few different creams as it got worse, but eventually it was decided that the best course of action would be to "pause" the chemo to give the rash a chance to clear up.  The long and the short of it is, even though the rash cleared up off treatment, she still needs to be on chemo, so after a few weeks we restarted the chemo.  As expected, the rash is returning, but at least we have some measures in place already, and don't need to wait to treat it with topical creams.  Hopefully we can keep it to a minimum.

Last week Evie had her 21st MRI.  The results may be a bit skewed because she was technically off treatment for 4 weeks leading up to the scan, it's hard to know really.  The team has let us know that it looks like there has been slight tumour growth since her last scan in October.  They are encouraging us to stick to the course with this new drug, at least until we can scan again in April.  By then we'll have a better idea if this is the right course of treatment....so, it's not the best news, not what we are hoping to hear, and as often is the case, it's a bit of a waiting game. 

There are really no other changes or updates about Evie - she's doing well, she's in SK, she loves being a Spark, and is currently in ballet and swimming....both of which make me busy weekend mornings but are very fun to watch. Isabelle has hit her stride this year and is doing really well at school, and at cheerleading (yes, this is totally a thing, and it's pretty fun to watch) - and she loves it. 

One last thing I'd like to share.  A few weeks ago I was asked to speak at a Neuro Science Conference at SickKids.  I was on a panel about Optic Pathway Tumours, alongside a surgeon, Evie's Ophthamologist, and Evie's RN on the NeuroOnc team (she has been our main point person for the new protocol Evie is on).  I was asked to shed light on the patient experience, our family's journey...so I refer to my roll as the "fluff piece"....cause really, when you're surrounded by this bunch...ha.  The conference was today, and I did my thing.  As a part of my speech I showed a video, and I thought I'd include the link and share it with you (so click that).  The full speech can also be found on my blog if you're so inclined. 

That's it for now.  The next few weeks are bound to be busy, but we'll be sure to keep you posted!

Paul, Kristine

Isabelle and Evie

"and though she be but little, she is fierce"

#fightlikeagirl

#runwithrockstar

#eviesteam

Are you strong enough?

Today I cried on public transit.  Sitting in my seat, my body harshly jerking forward every few blocks, the sun pouring in through the window beside me.  Tears filled my eyes, and gently rolled down my cheek.  Hiding behind my sunglasses and unable to stop it, I cried, and nobody noticed.  Their ignorance, it almost gave me permission to feel the way I felt, and let my guard down.  To not hold back, and reassure myself that it will be ok - but to just feel, and hurt, and cry.  To feel that raw emotion, that sadness.  The hot tears on my cheeks, with sniffling nose and even the lump in my stomach.  I felt consumed. 

Sometimes I can't exactly make sense of what happened in the past few years.  I find myself thinking, "Is this really my life?", or "How is this my life?"  But it's kind of as useless as trying to figure out how and why a six month old baby gets cancer.  And I've been down the road way too many times as it is.  I'm not sure why, or what I did, or if I did anything, or didn't do something.  It's more about figuring out what to do now that it's happened.  I think that's probably the key to a lot of life actually, it kind of makes more sense doesn't it?  Like being famous is one thing, but it's how you handle fame that shows your real character?

I'm not sure how to handle things a lot of the time.  I guess that's the truth.  I get told I'm strong, and that I do it well.  But I'm not sure they're right.  It doesn't feel strong.  It often feels helpless.  I wonder if people know that?  I'm not sure about things like fate, but it seems like I was not in control of this cancer when it came, and I'm not in control of how to get rid of it either. It's just happening.  In realtime. Whether I'm strong about it or not.

Now that I think about it, I wonder if people even mean it when they say it?  Am I strong, or do they just not know what else to say?  Is it because they don't know how they could handle it....because I guess the thing is, the terrible things in life, we don't envision them or strive to be able to handle them.  They're always a surprise, a twist, a curveball.  They just happen.  It's a lot different from the positive things, the ones we plan for, work at, achieve.  It's that instant change, that moment where something so big happens, where your life is turned upside down and everything just sort of stops - it's those moments, where you feel scared and upset, and no matter what age, like you need to turn to the closest adult so they can envelope you in a hug with the reassurance that this horrible thing isn't really happening.  Those moments apparently become defining to a certain extent.  Sometimes I think my ignorance and naivete in that arguable biggest moment in my life, got confused with strength.  Sometimes I worry that I'm not actually what people think I am, like when I find myself alone and crying on public transit.

I'm not strong.  Most of the time I'm just remembering the very basics of my existence.  Breath in, breath out.  Put one foot in front of the other.  Just keep swimming. 

Evie Update #21

Good morning friends,

It is with a bit of a heavy heart that I share with you some of the news we've received in the last few weeks.  I know that some of you have been patiently, or not so patiently waiting and asking about Evie since we left SickKids a few weeks ago, and now that we've had a bit of time, we can give you a few more puzzle pieces.

I say it that way because we don't have all the answers.  I like to email when I can give you a good idea, and though I do have more information, it's still just pieces.  Before Evie was released from SickKids post op, she had her follow up MRI.  The MRI served two purposes at that date: it ensured the Shunt Revision surgery she had was successful - it was - and it was her 3 month follow up.  As mentioned in a previous email, her last scan had shown a change but it was unclear and considered inconclusive results (they weren't sure if the change was a technical flaw or tumour activity).  This scan however confirmed that there has been tumour activity - her tumour has grown. 

With tumour growth comes intervention.  In the last few weeks we have met with the Oncology team a few times, and are having conversations about what the next steps are.  Evie will begin chemotherapy in the coming weeks.  At this point we're not sure what the treatment will be (which means we don't have details about frequency or duration), we just know that her team is exploring options.  As far as we can tell, this is a good thing.  We want them to look into as many options as possible, do their homework.  Evie has been through four previous protocols, and if the results we want aren't coming from those, it's time to dig a little deeper.  This little one's a fighter, and she'll be ready to roar.

The excitement of an in patient stay bumped up all other follow ups too, so we're being well looked after to make sure Evie stays in check.  In all honesty, Evie hasn't felt great all the time, with sudden headache, occasionally vomiting, and lack of appetite.  Everything is written down and reported (I even bought a new notebook specifically for all the current happenings so I can give her team detailed information.....not that they asked.....talk about Type A).  At the same time though, she is feeling well a lot of the time too: she's back at school, having playdates and keeping us laughing with her notoriously horrible knock knock jokes. 

So in the spirit of keeping this one brief...I'm going to remind everyone that spring is coming and that means Meagan's Walk.  After a very successful 1st year, another pool tournament is in the works, April 25th (https://www.facebook.com/events/1439863719600405).  And as always, you can donate or join Evie's Team for the walk on Saturday May 9th (team bbq sure to follow!) ...we're happy to have you!

Until next time, thank you for all the love.

Paul & Kristine

Isabelle and Evie

"and though she be but little, she is fierce"

Sleep

There's this totally super cute saying I saw on Pinterest.  It's like word art, room decor for a little girls nursery.  It goes, "Let her sleep, for when she wakes she will move mountains."

It's actually derived from a quote by Napoleon.  Except he was talking about China.  I'm pretty sure most people re-pinning that cute scripture, ordering wall decals to lay out over a crib don't know that.  And it doesn't really matter, because it's cute, and it gives you hope that one day big things will happen.  Let her sleep.  Enjoy that quiet.  Allow bigger things to develop.  Because they will.

When Evie was born, I would watch her sleep for hours.  On my chest, on my lap, in her crib, in my bed...I could watch her sleep all day.  I would watch her go through the process of falling asleep: become heavier in my arms, her breath slowing down, little wimpers every now and then.  Have you forgotten about the infant startle reflex?  It's quite possibly the cutest thing to witness.  They grow out of it of course, so you kind of have to cherish it and pay attention while it's happening....I guess thats most things with kids though right?  Sleep holds an innocence, a sweetness...and all just feels safe and right. 

Sleep though, has taken on a Jekyl and Hyde persona (personas?) for me.  It's kind of the the good, the bad and the ugly all at once.  Sleep has become something that is ya know, only ok in doses...too much of a good thing never works out, ya know?  Sleep has become a sign of something developing, of something bigger, just not something good. There is an obvious difference between the good sleep and the bad sleep, obviously. This is something that happens daily, and it's not like I'm worried everyday (ok, well maybe a part of me is worried everyday, but that's just about anything, not this specifically).  So the normal, every day night time sleep...is good.  The bad though, the bad is when she just doesn't feel well.  Her cheeks are pale, her eyes are dull, her energy level is just enough to turn over on the couch and find a new comfortable position...before falling back asleep for hours. 

When Evie was 2 1/2 years old she drifted asleep.  It happened over a period of a few weeks.  I knew something was wrong, but it was such a gradual decline it was hard to diagnose.  It wasn't until I showed up in the ER for the 3rd time in 2 weeks, with a little girl completely out in her stroller, in her 18th hour of consecutive sleep that I got their attention.  Finally there was no denying, something was wrong.  The next time the sleep started I was ready for it.  Despite not being a "normal" symptom, I recognized it.  This was her pattern, and it was starting.  She was sleeping, had no energy...and I wasn't taking no for an answer, I knew better.

And so she went again from the scary, endless sleep, to the normal, relaxing, beautifully calm sleep again.  And as soon as the transition was made it was obvious.  It was just different, and it was better.  On the inside I could slow down, be comforted in the fact that my little girl was in fact just sleeping, and not drifting far away from me. She was just sleeping again.  And I could watch her, and dream of the bigger things to come.  The mountains she would move.  

Strange thing though?  I kind of get the feeling she's already moving them.

Evie Update #20

Well...do I have a story for you....

My 4 Facebook posts, with a combined 172 "likes" and 163 comments are a pretty good indication that social media works when you need to spread the word!  Believe me when I say that I saw, and read and smiled over every well wish - when stuck in the SickKids vortex it's really great to know there are people, and lots of them, on the outside thinking about us. Believe it or not, not everyone is on Facebook (Paul included), so here is a little explanation of what has happened.

Over the past month I have noticed Evie complaining about headaches.  Nothing overly serious, but every now and then it's come up and seemed to be a bit more earnest than some of the other things she complains about.  I generally give water, rest and if it persists would offer tylenol - but it's never come to that.  Time and Hydration have always seemed to work.  As January was booked full of follow up appointments, I noted down headaches and let her team know.  These headaches starting out fairly innocent, got worse near the end of the month.  On two occasions they brought her to tears, but again seemed to pass within 10-20 minutes.

Last weekend Evie woke up and wasn't well.  She threw up, and then slept all day.  So now, with a brief history of headaches, and vomiting in the morning after waking (both being notoriously bad signs for brain tumours), we took precautions and kept her home from school. And then for two days she was fine.  Last Monday and Tuesday, she was her normal self: no school, but therapy at Holland Bloorview, playing with toys, watching iPad, playing in the snow.  Nothing unusual at all. 

Wednesday morning was a different story.  Evie was not well, and was in a cycle of sleeping and then waking and vomiting almost instantly. I was told to bring her into the ER where she would be assessed and likely have some imaging done.  I spent the day there with her, and by 7pm that evening she was being admitted by the NeuroSurgery department.  Over the course of the day they had given her a CT, bloodwork and a shunt series X-Ray.  It was suspected that her shunt was malfunctioning.  We were told to expect surgery, either that night or the following morning. 

Thursday morning I woke to the entire NeuroSurgery team on their rounds, and was surprised and upset to find out the plan that day was to "observe".  Her imaging showed a potential problem, but it "didn't seem to be emergent so we're going to keep an eye on her symptoms today".  It sounded to me like it wasn't bad enough yet to fix...and I was right.  Over the course of the day though, it got worse.  Evie slept all day...very much like how she was 2 years ago.  She was awake for a few minutes at a time, and in those minutes was in a lot of pain (headaches).  That evening it was decided that she had declined a considerable amount and they no longer wanted to wait to operate.  Evie went into surgery that evening. 

I'm happy to report that surgery did the trick.  Evie's shunt was malfunctioning, and once the "broken parts" (if you will) were replaced, her symptoms simply went away....just like that.  By Friday morning she was tired and sore, but no longer suffering from excessive sleepiness or headaches. She had her routine MRI and an additional X-Ray, and aside from that we spent the day quietly recovering.  On Saturday afternoon we were handed our discharge papers.  What a whirlwind. 

We're home now and have had a quiet weekend.  It's a little strange to see how fine Evie is...if you saw her, you'd have no idea how bad it was just a few days ago.  I was talking to her today, and showing her some pictures and she really doesn't remember Thursday.  She remembers throwing up, but not the sleeping.  I had to explain she had surgery because she can feel the shaved patch behind her ear.  This is one thing I'm not used to actually...explaining to her.  Evie has always been so small, I never had to explain to her very much about her treatment.  In the last year, I've had to a lot more, and clearly it's only going to increase in the future.

It feels weird to update you otherwise, but as I said, January was full of follow ups.  She had a blip with her endocrine appointment and now requires an additional medication from them.  She also is currently back at Holland Bloorview.  She is getting therapy once a week to work with her Occupational Therapist on some "Developmental building blocks".  There is a bit of concern with her learning, not uncommon for kids with all of her medical history.  Thankfully Evie just loves "Bloorview school".  It doesn't hurt that I arrive early so she can play in the playroom!

...and that kind of sums it up...

Thanks again for your support.  We have always believed it takes a village, and it's just so reassuring to know we have so much support behind us.  Evie is taking a week off of school as part of her surgical recovery (and our lack of faith in the 20 other kindergartners), which means we will have a quiet week at home together.  I've included some pictures: Evie on Thursday (her excessive sleepy day), just prior to surgery, Evie on Friday morning, only 10 hours post op, and Evie today playing in the snow in our backyard with Isabelle.  I repeat: what a whirlwind.

xoxo,

Paul & Kristine

Isabelle and Evie

and though she be but little, she is fierce