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. 

Do you see what I see?

Covering her right eye.  "Evie, can you see me?"

"Yes Mama" she says as she touches my face.

Covering her left eye.  "Evie, can you see me now?"

"Nope."

Covering her right eye again.  "Evie, what do you see?"

"I see your nose, and your eyes.  I see you Mama."

Covering her left eye again.  "Ok Evie, what do you see now?"

"Nothing."

"Ok baby, good girl.  Now listen to me.  I love you.  I really, really love you.  Do you hear me?"

"Yes Mama."

"I love you Evelyn." I squeezed her tightly and let the tears fall down my face, squeezed her as
 much as I could before she wriggled her way off my lap and ran away to go play.  

It's been a month since I found out that she had lost vision in her right eye.

Like a dimmer switch, slowly fading away.

She is not scared, or at least not yet.

But I am.  I'm terrified.  It is so painfully difficult for me to imagine not being able to see.  I understand that many people suffer from vision loss.  I get that there is so many resources.  I am learning that there are many tools available to help in every which way you can imagine. But I don't care.  To me, this is devastating.  It totally sucks.  I hate it.  I don't want it to be real.  I'm angry that it is.  And if one more person tells me, "It's ok, she still has one good eye".....I think I might just smack them.

When I try to rationally think of why I am so upset about this, I'm pretty sure I know why....but what I don't get is why others are so quick to downplay it.  Are my closest friends and family simply trying to remind me that it can always be worse, or do they actually not think this is a big deal?  If you lost 50% of your vision, don't you think you would be a little concerned?  I mean, seriously...people get upset over glasses, even if their prescription is minimal.  I'm upset about ZERO vision, and I keep getting glass half full reactions.  I know they are upset, and I know they are trying to help, be hopeful.  But a big part of me just really wishes someone had the balls to just get pissed off along with me....instead of trying to make it better. 

When Evie was first diagnosed, we were told many things.  So many in fact that I was given a binder and reminded to take notes and write down my questions and concerns.   The main things I remember repeating to family and friends were: benign, non life threatening, slow growing, 60 week treatment, not surgical, maintaining vision was primary concern.  Those actually sounded comforting, manageable, less scary at the time.  However, in the past three years I have found out that benign really isn't benign if it is affecting the body in some abnormal way.  Non life threatening became life threatening and surgical a year ago when the tumour grew too large....which also proved it was not as slow as they thought.  60 week treatment has turned into 3 years and 131 days of chemotherapy.  Vision has been slowly diminishing.  Everything I was set up for.....it was wrong.  I held on to each of those things, until I had none left. 

It's not a blame game.  I do not fault any of her medical team, and I am not implying I was misled.  It's simply clearer to me now more than ever that this really is beyond our control.  We are doing what we can, but it's still totally up in the air.  It's not that I have lost hope, but I am surely disheartened.  

Evie losing her vision was almost like a line in the sand. 

This cancer, this tumour...this is no longer something that she will have "gone through as a small child, and won't remember".  It won't simply be something we tell her stories about.  It has now taken away a part of her that she will not get back. 

As if she hasn't lost enough already.

Email #16

Buckle up friends, because apparently we have hit yet another bump in our road...

About a week and a half ago we were given some news about Evie.  It was not good, and to be honest, just thinking about it causes a pit in my stomach, and tears in my eyes.  We have taken a bit of time, largely keeping things to ourselves until we felt better prepared to publicize.  I am not saying we are ready now, I certainly don't feel that way, but I also feel like I just need people to know what's going on. 

Evie's tumour, an optic pathway tumour, has now compromised her vision.  Her eye doctor has told us that the vision in her right eye is so bad, it is essentially non-existent.  This means she is unable to see from her right eye.  Her vision in her left eye is better, but is not perfect, and the nerve shows damage as well.  Evie will need to start wearing glasses, not because they will help her vision, but because we need to have a physical shield to protect her left eye (think any potential external eye injury, bumping, something being thrown, an elbow...).  We will need to monitor her closely, and do what we can to protect her left eye from further damage (ie. hats and sunglasses).  Aside from that, there is little that can be done to restore vision in this type of situation. 

This has meant that we have also become connected with many more people.  For the past two months Evie has been connected with Toronto Preschool Speech and Language, Low Vision Program.  They have been assessing her, and accompanied me to her appointment, and most recently followed up with me at home to discuss what steps we need to take now.  It is very overwhelming right now because there is just so much to process, to learn, to do, not to mention more assessments and meetings to take place.  Evie starts kindergarten in a year, and it is important to get "everything sorted out" before she starts....believe it or not, this makes it a

Please know that Evie can see.  At three, it's hard to get a straight answer out of her about anything, but we know she can see.  I have already caught myself being a little bit more careful with her on stairs, and following a little closer behind when she's playing...and we would of course appreciate the same cautions be taken...but at the same time, please treat her the same.  She's the same little girl and it absolutely breaks my heart to think of people treating her any differently - ever.  She's sweet, and kind, and totally adorable and she really doesn't deserve another thing to be stacked against her favour.  She is strong, but even the strongest of people rely on the love, strength and support of others from time to time.  I am confident that the community we have built around her will be exactly what she needs when the time comes.

What's frustrating, is that less than a week after hearing such upsetting news, Evie had her 12th MRI, and we found out immediately afterwards that her tumour had shrunk again.  It's difficult to express my enthusiasm here, but this is great.  It was a happy surprise.  Just reflects my sentiments in my last email, you never really know with this stuff.  I guess we just take the good with the bad - they seem to come hand in hand anyway. 

Each of Evie's other follow ups have gone well, they have been uneventful and we are on cycle 7 of her chemo protocol.  I am sure Evie's Neuro Oncology team will have something to say about the Ophthalmology results, but I also expect them to take their time reviewing her test results in combination with her scan results.  For now, we just keep doing what we're doing....and go buy the cutest toddler glasses we can find. 

Paul & Kristine

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

What's in a wish

It happened today. 

I got a phone call from Children’s Wish Foundation. 

Evelyn is being granted a wish. 

Even when I type it now, my initial instinct is to smile...but I quickly catch myself.  I stop, and I think twice.  

Evelyn is being granted a wish.  

I got a phone call from Children’s Wish Foundation.  

Children’s Wish Foundation.  

My daughter, is being granted a wish....because she deserves one...because she qualifies....because she has cancer.  

My daughter is being granted a wish, because she has cancer. 

I remember seeing the information in my binder when Evie was diagnosed.  It was under a section of helpful resources, things like camps and charities.  As I looked it over, I thought, “Oh that’s nice...but not for us”.  You see, in order to qualify for a wish, you not only have to have a life threatening illness, but you need to be three.  Three being considered old enough to express your opinion.  Evie was diagnosed in fall of 2010 – at 6 months old. Her scheduled 60 weeks of chemo would bring her to about 20 months old – still far too young to qualify.  This wasn’t upsetting; we just dismissed the whole idea right then and there and from then on, never really gave it much thought. 

Even as I watched other families I knew make plans for their child’s wish, I still dismissed it.  No matter how similar the diagnosis, I could always find a discrepancy, something that would entitle their child, but not mine.  I think in one way I just didn’t want to get my hopes up, simply to be knocked down again, but clearly I was also scared.  I was, and am scared of what it means to qualify.  I guess I’m even scared to admit to others that she qualifies as I  have kept this close to my chest for weeks now.  Something that really should have been so exciting, tweetable, facebook postable, calling friends and family...I think I’ve told two people.  I haven’t even told Evie!  My reasons for that are different, I feel she is too young right now, and we definitely do not need to rush her decision..but I wonder if it isn’t my own insecurities as well. 

I feel like I know once I tell people I will be reassured that this is a good thing...I know it is.  It’s a great thing.  I’m sure I will feel that even more once everyone knows, once the wish has been made, the wheels are in motion whatever they may be.  Evie will be excited, and she will smile and laugh and it will hopefully be something she can hold on to and remember for the rest of her time.  It will be a moment of happiness, and that in itself will bring happiness to me.  I know she will love it, and I know she deserves it.  But she just didn’t deserve cancer.   And neither did any of her friends.  And when I say friends, what I really mean are the amazing kids that have come into her life, but only into her life because they too have cancer.   Tobin, JamieLee, Jake, Kendra, Stella....they have each been granted an amazing wish, and though Evie’s will surely be equally amazing....I wish none of them qualified. 

I am not trying to sound ungrateful.  I am very excited about her wish, but there is a definite sadness as well.  It’s a reminder that my child is suffering through a life-threatening illness.  It’s a reminder that her treatment has been going on much longer than we ever anticipated.  It is also a reminder that even when we think we have reached a point of normalcy, this really shouldn’t be normal.  We are not in control, and we likely never will be.   Having a child with cancer is a reminder of that loss of control.  Every day.