Evie Update #23

Happy Friday!

Life has been so busy around here, and even though our weekends tend to be just as busy as the weekdays (if not busier...), I am very happy today is Friday!

Evie is doing well, and has been continuing with the trial drug.   It's been almost a year now and is very much part of her morning routine.  Her MRI on April 10th has showed that her tumour is looking stable, and her team is pleased with the results and so she'll continue on this path.  She is still presenting several side effects that we're not super happy about, but I guess this is a case of the lesser of a few evils....a few side effects vs. tumour stability - it's a no brainer for the team...and Paul and I will just continue working on keeping side effects under control.  Evie's vision is stable, and she has just picked out three new pairs of frames - lucky girl.  Evie also continues to take her other meds daily, no end in sight there either.

Though there are a lot of tests to be done when you're a part of a trial, our days at the hospital are minimal - at this stage we check in once a month and they are pretty good about getting all the testing done on that one day.  Every three or four months she also has appointments with her other clinics, but overall we're at the hospital a lot less then we used to be. We have come to like it there...but it's great to not have to be there :)

Finally, we are just two weeks away from our annual event: Meagan's Walk.  On Saturday May 7th Meagan's Walk will celebrate it's 15th year.  Our family has been asked to be even more involved this year:  We attended their kick off ceremony, Evie and I speaking to the crowd, Evie will be featured in some promotional stuff leading up to the walk and en route, and she has been asked to be on stage at SickKids at the end of the walk - hopefully our team makes it in time!  This is a really great family day, where we are not only raising money and awareness for pediatric brain tumour research but also where we are coming together at SickKids and surrounding all the patients inside and reminding them that we care.  This is a place that has literally saved Evie, time and time again. If you ever wonder about fundraising for any cause, think about this:
Evie is currently on a drug trial. 
This drug trial is keeping her tumour stable right now. 
This drug trial is research.
Evie is one kid directly benefiting from research being done into pediatric brain tumours. 
Evie is one kid, and there are so many, many more. 

So find your shirts, pick up something purple, stock up on the doughnuts at the starting line, and walk with us:
JOIN Evie's Team here!

(you need to click the button on the right that says "JOIN" and then create or enter your username/password info from years past)

If you'd like to donate to our team, here is the link. 
DONATE to Evie's Team here!

If running is more your thing, there is a team in her honour at the Sporting Life 10K on Mothers Day: join the team #runwithrockstar when you're filling out the online registration.  Registration closes on Sunday April 24th - that's in two days!

One last thing to share before I go...

Fiona Faith Laplante was born on Tuesday March 15th at 1:45am.  At 6lbs 12 oucnes and 19 inches long, she is a lovely little thing that has immediately found her place here.  She'll be the youngest member of the team this year! 

xoxo

Paul and Kristine

Isabelle, Evelyn and Fiona

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

#fightlikeagirl

#eviesteam

#runwithrockstar

that time I was asked to speak at a Neuro Science Conference...

A few weeks ago I was asked if I would be interested in speaking about Evie, and our family's journey at a Neuro Science Conference being held at SickKids.  Apparently there was going to be a panel on Optic Pathway Tumours, and in addition to the Surgeon, Ophthamologist and NeuroOnc RN speaking, they wanted to add a patient perspective....and thought I might be a good fit. So, that's what I did this morning.  I thought I'd share my presentation here.

NEUROSCIENCE CONFERENCE 
THE HOSPITAL FOR SICK CHILDREN
TORONTO, ON
TUESDAY JANUARY 26, 2016

My name is Kristine, and I’m here today with my husband Paul.  We were asked to participate on this panel to share a bit about our daughter Evie.  Anyone that has met her can tell you she is not shy, but instead of bringing her today, I asked her to help me make this video.  I’m hoping this will give you an idea of who she is, beyond her medical charts, and  also give you some insights into the way in which my 5 year old makes sense of her cancer diagnosis.

 

VIDEO OF EVIE'S STORY

I have told Evie's story a lot.  Over and over again really since the day she was diagnosed.  I told it when I had to call friends and family members and explain to them what was happening.  I've told it to various doctors, nurses and medical professionals who all want to hear it from my perspective while piecing together her diagnosis.  I've told it to strangers, who have become friends - families I have met in clinic -  and as I recited it, I watched as they compared notes in their heads to their own experiences, their own story.

For the record, I had a perfectly normal pregnancy.  Evie was born, at home, on purpose, surrounded by family and midwives. The first six months can be described as perfectly normal - we never had any reason to suspect something might be going on. 

It was on October 28, at six and a half months old, my husband Paul called me to come and look at her eyes, which he said were shaking.  24 hours later, and after spending 12hours in the ER here at SickKids, we found ourselves being admitted to the 8^th floor, and were told “they had found something”.  In that moment I felt instant relief….hadn’t we been there so they could tell us what was going on, so they could find something?  I was so naïve, I had no idea.  In the days that followed, we learned that something meant tumour, and that tumour meant cancer, and that cancer meant chemotherapy.  I also remember these words specifically, and these words are important, because they are words that I held on to for the next few years:

Benign

Slow growing

Non surgical

Non life threatening

Our goal is to keep her from losing vision

This is how Evie’s tumour, her Hypothalamic Optic Glioma – Optic Pathway Tumour – was described to us.  These words held a lot of stock, and I knew right there, this is bad, but it’s not the worst of the worst.  We were thankful for that.

Evie began treatment, and we were introduced to the various other clinics that would also be required to follow Evie: in particular Endocrinology as her tumour was near her hypothalamus, and Ophthamology because it was along her optic nerve.  She would also be getting MRIs every 3 months.  In total, Evie is now seen by 5 clinics here at SickKids, and 2 at Holland Bloorview.  So like most families, we have been balancing appointments from day one.

Treatment wise, that first protocol, Carboplatin + Vincristine, only lasted about 15 weeks before we had to stop due to a suspected allergic reaction.  From there, Evie started Vinblastine, and then moved on to Avastin – both protocols were cut short when they failed to stop her tumour from growing.  At this point, Evie had been on treatment continuously for almost two years, and it was decided that a short hiatus from chemotherapy might actually help to stimulate a positive reaction.  So we agreed that we would give chemo a break for a few months. 

It was during this brief hiatus that Evie began to get sleepy.  It happened gradually over about two weeks – she just seemed to be really tired, and basically ever day was sleeping more.  We talked to her team, we had her checked out, and couldn’t find anything.  By the end of the second week of sleepiness, we were getting quite concerned.  I had nothing new to report to her team, but when she hit the 18hour mark of sleeping, waking only to use the bathroom, we called rank and hauled her back into the ER.  It was simultaneously comforting and discouraging to see her oncologist there, agreeing that something was wrong.

It turned out that two things were happening: Evies tumour continued to grow, and this growth was blocking off the natural passageway for CSF to drain.  Evie spent two weeks in hospital, had a shunt inserted, and then a tumour resection.  Those two weeks in hospital were probably the toughest we’ve had.  This was also the first time I became confused by the words I had first clung to: her slow growing, non surgical, and non life threatening tumour had just become emergent, had grown fairly fast it seemed, was now surgical, and felt pretty life threatening in that moment.

I often describe being an inpatient as being in the SickKids Vortex.  You’re in the middle and your whole world is spinning around you, with very little, if any control. You know there is a whole world out there somewhere, but it is completely irrelevant at this point.  You’re just holding on, as best you can, hoping to make it out to the other side.  When you’re here, under such circumstances, your life almost stands still….and that in itself can be a difficult thing as a parent, when you also have the pressures of work, bills, and other children – of everything your life was before, in addition to this huge thing that your life has become. 

Before being discharged, Evie started her 4^th protocol.  Though higher in toxicity, TPCV did shrink her tumour, and was the first protocol that Evie was able to fully complete.  It was however during this time that we discovered that Evie had lost vision in her right eye. This was the next instance of me as a parent holding onto words I had been told:  the goal of her keeping her vision was slipping away.  Vision loss is one of the things I struggle with, though I am reassured by her doctors, and by her, that the way in which she sees the world is simply her normal, it is so difficult for me – I find eye appointments to be some of the most challenging – they are a reminder of what is being taken from her.  I often leave feeling defeated.  Sorry Dr. Reginald…

Last May, after almost a year and a half off treatment Evie started a Phase 1 trial.  A few months prior she suffered a shunt malfunction, and then an MRI showed more tumour growth, prompting the search for the next step in her treatment.  This is where we are now in her journey.  It’s hard for me to say how it’s going, but I think it’s fair to say we’re not yet seeing the results I was hoping we would. I’ve been pretty honest with my team about my concerns, and expectations, but, as one oncologist said to us years ago…this isn’t easy peasy medicine…fair enough.

Evie currently takes her chemo every morning at home, along with daily aspirin and synthroid.  Every three months she gets a lupron injection.  Her vision has remained stable, as she explained, one good looker, one bad looker.  We feel fairly lucky with Evie a lot of the time.  She is happy, and understanding.  She genuinely enjoys coming to the hospital, though admittedly doesn’t love every test she needs to endure. She believes that she is coming to visit and play as much as she is to be assessed.  Watching her interact with her team is hilarious to me – I’m not even sure she needs me half the time.  She is cooperative, and that alone from a five year old helps a lot.  As she gets bigger, she understands more and is able to tell us more – which also means I need to tell her more.  I’m expecting to have a few difficult conversations with her.  

Even though we’re not there yet, I’ve realized that even when you’re done treatment, you’re not really done – there are “aftershocks”. Complications, side effects.  Even yesterday I got a call from her therapist confirming assessment results telling me that Evie scores are far below average.  So these are the kind of things that I think make any diagnosis harder on a family.  The initial diagnosis sucks.  And then, very often, it just doesn’t stop there.  That sounds super pessimistic, and I don’t mean it to, I mean it more realistically – as a parent you need to be prepared for things to change a lot, all the time – but at the same time, it’s not really anything you can be prepared for.  I watched those words fade – and the reality of that was hard.  I completely understand that she doesn’t have an aggressive form of cancer….but this slow growing tumour….it’s been slow and steady, and that doesn’t feel great.  

For now, we keep on keeping on.  A lot of this, though I do stand by the fact that it sucks, has also been normalized.  I know that there is little we can do to stop her eyes from deteriorating right now, so though they make me nervous, I’m happy with the words “no change”.  I also like to think that Evie’s oncology team might be as frustrated as I am sometimes – they’re just more professional about it.  I think that alone, is encouraging to us because she’s proven to be a challenge – and I’ve noticed that the doctors here seem to step up to challenges.  Though I wonder how many kids get to plan E, we’ve never been told they’re out of options.  

Evie has grown up here, right in front of us.  Not quite what we imagined her life would be, but it’s all about what is her normal…and this is it.

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

Evie Update #19

It's beginning to look a lot like Christmas...!

Well....the last six months have been a little crazy, but I'm finally able to sit down and share with you once again. 

Shortly after our last update, Evie's team made their 5th appearance at Meagan's Walk raising over $10,000 this year for Pediatric Brain Tumour Research.  This is a very delayed THANK YOU to our ever-growing team.  We think you're all pretty great, and are very lucky to have you in our lives....it takes a village.

Over the summer Evie got to attend her first day camp with Camp Ooch. For two weeks in July she got on a bus, traveled to camp for the day and had an absolute blast. 

The end of summer and the start of the school year....Evie is now "a Junior" (her hip short form for Junior Kindergarten - ha!).  The girls started the school year at their new school (because by the way, we also had to move over the summer and bought a house!).  The school is working out really well, we have met with them about considerations Evie requires, and they have been great about helping us where ever they can.  Currently her needs are minimal, but she does have a vision itinerant teacher who works with her once a week.  After recent assessment with her Occupational Therapist at Holland Bloorview,  and similar notes from her V.I. teacher, Evie will be receiving additional therapy to work on a few "developmental building blocks" come the new year.

Evie has also now been Off Treatment for 14 months...crazy right?  Her medical routine now is as follows:

Port Flushes: every six weeks

Endocrine, Neurology and Physio appointments: every six months

Neurosurgery: annually

Occupational: was every six months, but Evie will be starting back on a weekly basis in January.

Ophthalmology, and MRIs: every three months

MRI #16 was in October.  It's taken me a while to fully understand the results and I've had many conversations and asked many questions.  What we know is that her tumour has not grown, but it has shown a change.  It's currently unknown whether the change visible in this scan is a technical flaw (entirely possible) or a sign of tumour activity (also possible).  We'll have a better idea after her next scan, which should be sometime in January. 

Evie's last Eye Exam was in early November and though the results were the same (as previous exams in the last 6 months), she complains often about her eyes hurting.  With no real explanation, it was decided to keep the eye exams every three months to make sure nothing is missed.  In the meantime we're working with her on trying to better describe exactly what it feels like. 

Over the summer Evie, as a Wish Kid, was asked to be a part of a campaign run by Sofina Foods as a new corporate supporter of Children's Wish.  We shared with them photos, drawings and Evie's story.   A few weeks ago our family was invited to their head office where we were surprised with a party in her honour.  It was so special for the girls, and humbling for us.  Evie's wish planning is underway...

And....yep, that kind of sums up Evie in the last six months!  The rest of us, we're good too.  Isabelle is doing really well at her new school, now in English and learning the clarinet - she was both "excited and nervous to be the new kid".  Paul and I are loving having a place we can call home and somehow find time on the weekends between kids activities to paint and debate (sometimes endlessly) which projects "need" to get done.  It's all coming together....and though I love (LOVE LOVE LOVE) the holidays, we can't wait for BBQ season to have a big party!

Until next time...Happy Holiday, from our family to yours :)

Paul & Kristine

Isabelle and Evie

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

Evie Update #18

Spring has sprung.....finally....I think?!

Well.....no news is good news, gang!  Since my last update, Evie has had follow ups with everyone, and she is right on track.  Her most recent scan was in March (MRI #14) and it looked basically identical to the previous one....which means her tumour is stable.  So, for now, it's more of the same: daily meds at home, routine follow ups every few months, port flushes....life off treatment :)

Now, just because we're not schlepping back and forth to SickKids doesn't mean we've been any less busy!  The past few months have flown by it seems!  In February we officially registered Evie for JK next fall.  In March she began one on one swimming lessons (yipee....I no longer have to get in the pool!), and gymnastics (parent and tot.....so this one I do participate in).  Both activities are going well. Evie loves the pool, and she is actually getting everything out of gymnastics that I had hoped for: it is increasing her balance by challenging her on the trampoline, and it is building her coordination and strength on the bars and beam.  

April has come and gone, which means our little girl grew another year older: Evie turned 4 on the 13th.  She had (in my oppinion) an amazing birthday weekend, celebrated with an Arts and Crafts party with her friends (read: paint, markers, crayons, cake, feathers, beads, balloons, glue, glitter + 10 kids in my house...), lots of food and family.  Her big sister even chose a special birthday present for her: Evie got her own American Girl doll that looks just like her.....and let me tell you guys for those that don't know, this is a big deal....haha. It was a good weekend, I made sure to stop and take it all in...for these moments just continue to speed by. 

Meagan's Walk is this Saturday, and Evie's Team is doing a great job!  I'd again like to invite you to join us or donate - we'd be happy to have you with us! I'll be emailing some info to our team this Thursday evening....so to all those joining us, keep an eye out!

A bit of an update for MW fundraising: The charity pool tournament and raffle organized by my cousin Jenn was a huge success.  They raised over $2,400 for the team and far exceeded their own expectations!  The hall was busy, the prizes were awesome, and above all else there was an overwhelming vibe of caring, kindness and support from all those we met.  Evie, not surprisingly, made her way around the hall and spoke with just about anyone who would listen!  Evie is just old enough to now really understand things about her treatment and her diagnosis, but one thing we feel that she has always known and felt is that she does in fact have a whole village around her.  I may be jumping the gun, or being presumptuous....but mark your calendars people...this event will likely be back next year!

That's it for now....Happy Cinco de Mayo - now time for a cerveza ;)

Kristine

The night it all changed...

I have told Evie's story a lot.  Over and over again really since the day she was diagnosed.  I told it when I had to call friends and family members and explain to them what had happened.  I've told it to various doctors, nurses and medical professionals who all want to hear it from my perspective, party so that they know the "what" and the "how", but also to look for discrepancies, and clues about the "why".  I've since told it to strangers, who have become friends - the families I have met in clinic -  and as I recited it, I watched as they compared notes in their heads to their own experiences, their own story. 

Evie's story is simple really.  She was perfectly happy and healthy...until she wasn't anymore.  She was six months old when we had our first family of four trip to Whittamore's Farm.  She was six and a half months when she was diagnosed with a brain tumour at SickKids.  Just like that - it all just changed.

Those of you who were there, for the beginning and for the first two years will remember that Evie had nystagmus.  I explained it as best I could, but to say her eye was shaking...well, to understand you really had to see it.  The doctors referred to it as rotatory nystagmus: her eye shook in a circular (but not fully circular) back and forth, like the way you dial a rotary phone...just, well, faster...and non stop.  I guess it's not the easiest thing to understand. 

It was during bath time on October 28th, 2010 that we first noticed the nystagmus, though we surely did not know it by this name.  I remember clearing the table after dinner, getting the dishes ready when Paul called me to the bathroom and asked if I had noticed her eye.  As we looked down at our little girl, still cradled in the tub by a mesh bouncer, we watched as her left eye shook rapidly.  I tried to downplay it, partly because I was just too naive, too ignorant.  Probably because in that split second, the thought of something actually wrong was not even possible.  But Paul knew better.  He knew things I didn't.  Not to say that he thought the worst then and there, nor would he have known what the worst could even be, but he knew it wasn't right.  After talking about it for a few minutes, I did what any Mom would probably do.  I called my Mom.  Once she admitted that she really didn't know, and didn't really understand what I meant, I made the next New Mom move.  I calmly took advantage of the system we have set up, and called TeleHealth.  And then, while on hold with them, I sat down at my computer and googled. 

You should never do that.  Don't self diagnose.  You'll drive yourself crazy and become a total paranoid hypochondriac.  Funny thing is, what I found when I googled, was basically right.  But there I was, naive and ignorant, and dismissed my findings of neurological problems, because...well, that was way too serious of a thing to even have happen.  As if.  Once TeleHealth ruled out any immediate danger, and suggested I take her to the doctor in the morning, I felt better.  Not great, but better.  Worried.  I felt worried. 

I know we tried to go to bed normally that night, but the worry did take over, and I couldn't.  I wasn't sure what was wrong exactly, but by then I was convinced it must be something.  Evie seemed fine, she was happy, nursing well, no different really.  But her eye just hadn't stopped shaking.  And the more I watched...that pit in my stomach grew.  Now, I am awful at describing things sometimes.  I can't explain how food tastes, I just can't make the connections.  I had this feeling that it would be just my luck that I would take Evie to a doctor in the morning, and not really be able to explain what was happening, and when they looked, it wouldn't be happening anymore.  So, in fear of looking silly, I took two videos on my phone.  I made sure to capture her eyes in close up, so that there was no mistaking what we were seeing.  These videos proved to be really helpful to the medical team, who all gathered around my phone to watch - but they might not have been necessary, because the shaking was still happening when they checked her out the next day.  And it continued to happen for years. These are the two videos from that night...the night it all changed.  

Evie Update #17

Well...six months since my last update seems a little inexcusable doesn't it?  Let me take a minute and rewind...

At the time of my last email I let everyone know that Evie's most recent MRI was good news, her tumour appeared smaller, however her vision had been affected.  We were dealing with the reality of her vision loss, picking out glasses and trying to enjoy the ends of summer, all while on cycle 7 of her chemotherapy protocol.  

There are a few updates since then, and the one I would like to share first is the happiest:  on October 11th Evie finished her TPCV Chemotherapy Protocol.  This means, she finished chemo...and has been officially off treatment for three months now.  Incredible right?  I understand that many of you know this, but as I had never emailed, I really wanted to make sure this news was in the forefront.  It was a bit of a surprise to us, we had been told to expect to start another protocol, so I was definitely not prepared.  You need to understand, after going to the clinic every week for three years, it's an adjustment to just stop going....but a pretty great one!  

The end of chemo means that we now only go to clinic every 6 weeks for a port flush (as she still has the port in her chest, and it needs to remain clean and infection free).  Around those 6 week appointments, we still have follow ups with all other clinics, and she still remains on all medications that have been prescribed.  In November we saw Neuro Surgery, and they are happy with her progress.  In December we saw Endocrinology and they said Evie is growing wonderfully and have no concerns currently - she is still taking a thyroid medicine every morning.  We only see the stroke clinic once a year, but for them she is on aspirin daily.  She had an MRI on December 20th and her tumour is stable - as the first one since the end of treatment, this is great news!

With her recent vision loss, we have seen Ophthalmology a few times since the summer in an effort to stay on top of her vision changes.  Evie picked out two pairs of glasses in August, and though it took me a bit of time to cope with it, she actually loves wearing them....not surprising, the girl loves to accessorize.  Also not surprising, she prefers the more expensive pair (Ralph Lauren - ha!).  Our most recent eye appointment was this past Friday.  It was a three week follow up to an appointment she had just before Christmas.  These two appointments revealed and confirmed a bit of bad news.  On top of having no vision in her right eye (what we found out in the summer), there has been a decrease in vision in her left eye.  We were given a prescription, and Evie's (once protective only) glasses are now corrective.  She actually smiled very big when she put them on yesterday with her new lenses, which is great, but this has been another big pill to swallow.  Evie is still taking a medicine that aims to protect her optic nerves ("it tastes horrible") so hopefully it's doing something.  Outside of SickKids, we are still working with the CNIB, and the Low vision program, and we are expecting much assistance in the next few months as we register Evie for Kindergarten!

Evie's PT and OT are also going really well.  She has been cleared to visits just once every two months.  I have found support from her PT, more than I ever expected.  She is a great insider to Evie's health care, but outsider to her SickKids team.  She is great to talk to (even if only for an hour every two months), and is always happy to see Evie.  We have seen Evie's improvements ourselves too.  She is now running, and jumping - though anything but graceful.  She can swing on the monkey bars, and last week surprised me a lot by her active participation at a Circus School birthday party.  

The past few months have also been full of things other than appointments - believe it or not!  We have been connected with so many wonderful organizations.  Our family was invited to Great Wolf Lodge for a holiday party, we got to stay overnight and enjoy the madness of that place....we all had a great time! Evie is almost old enough to participate in Camp Ooch events too, and this morning I filled out paperwork from the Children's Wish Foundation of Canada - Evie get's a wish! 

I want to say thank you to all of you.  It's very humbling to write these emails and realize that at update 17, and over three years, we have all of you around us.  Our  community is constantly expanding, from family, friends, coworkers, acquaintances, other cancer families, medical health professionals...and friends I had long lost any contact with.  Please know that it the darkest of times, when the tears flow, and things seem horribly wrong - it is this community, that keeps us strong....well, that adorable squinty smile helps too.  We are terribly grateful for both.  

One last note....Evie's Team is up and running...by now you know the deal, so if you want to come join us or donate, just click the words!

xoxo,
Paul & Kristine

Isabelle, Evie

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

When the colours change

For as long as I can remember, Fall has always been my favourite season.  I love the how the air feels fresh and crisp.  I love the watching the leaves gradually change colours.  I love the cute outfits I get to wear, the boots, the jackets and scarves.  Following suit, Thanksgiving is my favourite holiday - think about it, it's pretty much the only one that doesn't involve gift giving....it's about family and eating.  I'll admit that I likely first loved the fall because it meant my birthday was coming, and as a kid, birthdays are a pretty big deal.  Either way, I loved the fall then, and I love the fall now.  Mostly.

I say mostly because now when I first notice the air get cooler, and the leaves start to fall, I am met with a feeling of uneasiness.  I get worried.  Distant.  Needy.  Insecure.  Fearful.  For it is the fall that has also been the background to some of the worst times in my life.  Evie was diagnosed with cancer in the fall.  Just last year she spent two weeks in SickKids, drifting further and further away from us.  It's not that I assume something bad is going to happen in the fall, but the things that have....well, they've been pretty awful, and it's not easy to forget them.

For the past couple of weeks I have been re-living the events of last year in my head.  I can pretty much remember where I was and what was happening every day.  I think about it, what I did, how she was behaving, what her medical team told me.  I think about it all.  About how worried I was becoming, and how I felt like nobody was getting it.  I felt helpless.  I knew something was wrong, but I didn't know what.  And I really didn't know how wrong.  How did it all change so quickly....again?  How is it possible that I was being told she was fine, and I was likely just getting "carried away" one minute, and the next I'm being told she needs surgery and we're lucky we didn't wait any longer to bring her in....that it was "close".  Even those words didn't seem real until long after the initial emergency.  I'm not even sure if our closest friends and family know how close "close" was.  I'm not sure we communicated that....we were able to communicate that.

The funny thing is, as awful as it was but a year ago, everything has changed again, again. Today, almost three years to the day later, Evie had her last scheduled chemo treatment.  For the first time, she finished her protocol, and with her last scan looking stable....her team decided that this will be the last treatment.

Now...I feel like there is more to explain...things like:
- as with any cancer patient, at any time, she could require more chemo.
- she will continue to get scans, and follow ups, and will still need to take the same medications
- her cancer isn't gone, she isn't in remission, it's just stable.
...but all in all....this is good news. 

It's actually really good news.  Most parents are counting down the weeks, counting down the treatments, and I'm not different.  I have been counting down weeks forever, but as time passed, it just got harder.  The first seventy week protocol ended at week fifteen.  Re-start the countdown at sixty weeks.  A few months later, we started again.  And again.  Even this last protocol, definitely the most toxic, and invasive, though I knew the timeline, I had been lead to believe it was not the end.  I fully expected to start another one.  We, Paul and I along with her SickKids team, had those conversations.  It was approved by her team, and us.  We were on board for more chemo....seems crazy, but we were.  So I was shocked to hear them say it was the end.

I was so shocked in fact, that I found it really difficult to actually enjoy.  I told people...cautiously.  I warned that it could all change again in an instant.  I didn't send an Evie Update email.  I figured why bother, her scan is coming up...better wait to get those results before I get too excited.  I actually thought her medical team was just trying to give us a few weeks of feeling happy and treatment free.  On the one hand, so what if they were?  We should enjoy any moment that is not full of cancer, chemo, doctors, tests, needles.  I don't want to live, just waiting for more bad news, cause if I do, surely it will come in one form or another.  But on the other hand - I hate to be the one to tell everyone it's ok, just to take it back.  So I'm waiting.  I'm waiting until a bit of time passes, and we have her next scan.  I'm waiting until I feel a bit more comfortable sharing this happy news.  And even that I feel guilty about.  

I'm not sure how I can exactly truthfully be able to say that every year for the past 3 has been the hardest year of my life, but there you have it.  Is that just being a parent?  I'm not sure.  I know that I am much more thankful, grateful, and appreciative of those around me.  I can see kindnes, and forgiveness in places I couldn't before.  More than anything I can see vulnerability.  I see it in the eyes of my friends, and my family.  It's not pity, it's that they hurt too. But amidst the hardships, I see beauty.  I see the way Evie looks at things, at the world.  I see the wonder, and the amusement.  I see how she sees people, how she loves things.  She sees the colorus of fall, and it reminds me of how much I love it...I guess you do need to have love to understand loss, and you need to be sad to understand happiness.