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"