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. 

Evie Update #15

Hi friends!

Guess what?!  This email has good news...and I'm so excited to share it with you!

Evie had MRI #11 on Tuesday April 30, and on Friday May 3rd Dr. Bouffet told us something we have never heard before: "Her tumour is smaller".  Pardon me?  What did you say?  Wait a minute...Smaller? Smaller.  Smaller!  Her tumour is smaller.  And when I say smaller, I mean, a pretty significant amount. No measurements needed (though I did jot them down), it's clear in the images....her tumour is at least 15% smaller since her last scan (in January).  Shocker!  

Paul and I went in to this appointment expecting something entirely different.  With all the bad news we received since her last scan, all mentioned in my last email, we were sort of prepared to hear more bad news.  How could all of these bad things happen and it not be a bad scan?  Just goes to show you....you never really know with this stuff.  Even the good news took a while for us to fully process.  I actually dont think it was until we started telling friends and family that we allowed ourselves to fully celebrate.  Hearing the reactions of those closest to us, the ones who have supported us for so long, hearing their voices and seeing the looks on their faces - we knew this was something to be really happy about.  Thank you for reminding us it's ok, and only fair, to celebrate the good news, just as much as we mourn the bad.  

This means we are in a good place with Evie's treatment right now.  She is still continuing her bi-weekly appointments for therapy at Bloorview, as well as her bi-weekly chemotherapy appointments (currently mid way through cycle 5 of 8).  Many of you have asked, but yes, we continue her chemo protocol to its end.  She has quite a few follow ups in June and July, and I suppose her next MRI will be in either July or August.  So as always, we take it one step at a time, and hope that this MRI is a sign that something is working.  Only time will tell. 

Can you believe there is more good news? 

On April 13/14 we celebrated Evie's 3rd birthday.  She is looking more and more grown up everyday, no part of her a baby anymore.  Isabelle is going to be 9 in the summer, how did that happen?!  

Last weekend we gathered at Fort York for Meagan's Walk.  This was our third year participating and clearly our most successful as a team.  Evie's Team looked awesome in our purple shirts - all 55 of us!!!!!  As of this morning - because apparently the donations are still filtering in - Evie's Team has raised $10,303.93!!!!!  

EVIE'S TEAM 2013: Siobhan, Mary Anne, Hannah, Arlene, Morgan, Jack, Carly, Lucian, Rebecca, Lee, Alex, Lily, Georgia, Crystal, Josh, Barb, Heather, Jon, John, Starla, Eddie, Murray, Corey, Coral, Derek, Hudson, Carol, Jeff, Kiera, Jenn, Brian, Trevor, Taylor, Bill, Sharon, Nana, Nannie, Abby, Adam, Micah, Chris, Emma, Matthew, Maggie, Kristyn, Jenny, Jak, Maya, Paul, Isabelle, Kristine and Evie, Anita, Peggy, Ashely.....plus two in utero.

To everyone that joined us this year, and to everyone that donated to our team - THANK YOU.  Not only have you supported Pediatric Brain Tumour Research,  but you have supported our family.  I'm very sorry that our team missed the big HUG - we werent the only ones, but it still was a bit disappointing.  For us, Meagans Walk has become more than the fundraising, more than the 5km (3km?) walk, more than the hug.  It really is a day for us to be with others going through what we are going through.  To connect with other brain tumour families outside of clinic.  To perhaps give our family and friends a window into the lives of these families.  This is our other support system, these are the people that have lived what we live, and we are as connected to them as we are to all of you.  You have all made this event more and more special to our family.  THANK YOU - and we would love to have you all back next year. 

Paul & Kristine

for the Bebo Blog

The following post is a guest blog I wrote for bebo mia - a Toronto based Fertility/Pregnancy/Parenting company. 

I remember the day I went for my 20 week ultrasound like it was yesterday.  Like many expectant mothers these days, I really wanted to find out if we were going to have a boy or a girl.  It seemed wildly important to have this piece of information...as soon as possible.  I thought that once I knew, I would be better prepared for the baby...I could set up the nursery according to gender, I could eliminate half the names floating through my head, and I could more importantly tell our friends and family so they could also prepare....and buy the right coloured cute things babies need.  You can probably already tell, I’m a bit of a Type A.  I like to be organized, I love making lists  (they usually have handmade check boxes beside them), and I love schedules….these things just make sense to me.  So despite really embracing the miracle that is pregnancy, and fully trusting the process of baby growing….I kind of figured – well, this is something we can easily find out….so why not?  In fact, I really needed this fact to ensure I had it all figured out.  I thought that knowing the gender, I would be prepared for parenting my baby.  And soon enough, a sea of pink flew throughout my house.  

Throughout my pregnancy I felt great ...I really did.  It helped that I had a very uncomplicated pregnancy, classified by one of my midwives as “boringly normal – which we like”.  I seemed to float through week after week with ease, gaining modestly, eating and sleeping well and feeling great.  At 40 weeks and five days, I went into labour, and within a few hours my daughter had arrived.  Evelyn was born at home, surrounded by family and midwives on a beautiful spring day in April 2010.  The labour and delivery had gone smoothly, and she was a perfectly respectable 7lbs1oz and 21.5 inches long.  

Over the next six months I watched my little baby grow...shamelessly in awe of everything about her.  I couldn’t get over how perfect she was, her tiny little feet, her big blue eyes and her reddish blond hair.  I quickly fell into the groove of mothering a newborn, had diapers and nursing down pat. My Ergo was my best friend in the daytime for housework, and I could easily fold my stroller one handed.  I watched my daughter meet milestones, and recorded them diligently in her baby book.  I wasn’t perfect, but I did feel like I had it figured out.  It all felt so natural, and I remember thinking on more than one occasion how lucky I was to have such a perfect family, and such a great life.  That’s how things felt – perfect. 
When they first told me, “We found something” my initial thought was – great.  I mean, we had been in the ER at SickKids for over 12 hours…..they had been running tests and not telling us anything all day….wasnt the whole point to find something?  I guess I didn’t really understand the magnitude, but honestly, how could I?  This was not in the plan, I was not prepared for this, and this was not supposed to happen.  As much as we fear the worst, in the moment that the worst is happening, I think we are all so blindly naïve.  Perhaps it’s a subconscious defense mechanism we all have, some kind of self preservation.  I never imagined that “something” meant tumour, or cancer.  Yet there it was.  Evelyn was diagnosed with a hypothalamic optic glioma – a Brain Tumour.  It was October 29, 2010 and Evelyn was 6 ½ months old. 

That diagnosis – brain tumour – changed everything.  In the course of a week, Evie had her first hospital visit, her first surgery, and her first dose of chemotherapy.  We walked the halls of the hospital a little like zombies as a parade of Oncologists, Surgeons, Therapists, Social Workers, Nurses and other specialists took turns “informing” us on our daughter.  We were learning a lot, a lot about someone we thought we knew everything about.  Though we didn’t quite realize it, we were also being thrust into a whole new world.    

It’s funny how something can be so devastating, and life changing, and horrific....and then over time become almost normal.  Evelyn turned 3 two weeks ago.  She is still receiving chemotherapy, and in the past two and a half years since her diagnosis, she has also had 3 surgeries, 11 MRI’s, 4 CT’s and dozens of appointments with the five departments that follow her at SickKids.  That world we found ourselves in has also grown, not only to include another medical team at Holland Bloorview Kids Rehabilitation Centre, but a support system of families we have met along the way, as well as many wonderful organizations who are dedicated to helping us, and our children. 

It took me a while, but once I was ready to become involved in the community I had found myself in I was shocked by a lot of what I learned.  Brain tumours are more common than you think, and they were popping up all around me…it’s like once I became aware….I noticed, my eyes were opened.  So that’s what I want to do – I want to open your eyes.  This kind of thing, cancer, brain tumours – they happen…all the time.  Brain tumours are the leading cause of cancer-related death in young people (under 20).  On top of that, there are over 120 different kinds of brain tumours.  They key to making treatment effective is research, and lucky for us, The Hospital for Sick Children is home to the only Brain Tumour Research Centre in all of Canada.  

Meagan’s Walk is an annual event that supports Pediatric Brain Tumour Research and SickKids. It was created by a Mother, who lost her five year old daughter to a fatal brain tumour.  Their goal is simple: to create public awareness about Pediatric Brain Tumours, and to raise money to assist in further research. How do they do it?  With hugs.  Every year participants gather together for a 5km walk – the destination?  SickKids. Together, we stand, hand in hand, forming a giant hug…a circle of hope around the hospital. It’s a pretty powerful message to everyone inside, and it’s a pretty awesome thing to be a part of.  Meagan’s Walk is doing it too….to date they’ve raised 2.7 million dollars for Pediatric Brain Tumour Research, and the walk is getting bigger every year.  The great thing about Meagan’s Walk is that not only are they doing such great work for such a great cause, but they are truly there for the families they are working to support.  They are in touch, they are friendly, they are welcoming, and they are ready and willing to help us. They are an amazing group of volunteers.  They are worth knowing about.  They are worth talking about.  They, and the kids they are helping, are worth supporting. 

www.meaganswalk.com

http://my.sickkidsdonations.com/TeamPage.aspx?EventID=114594&LangPref=en-CA&TeamID=358418

Evie Update #14

Hi friends,

It's starting to look like Spring has Sprung......and we're thrilled!  Spring is a new beginning....and after this past winter, our family is totally ready for that. 

As far as the medical goes, the past few months have actually been fairly quiet....which is fantastic.  Evie has started her 4th cycle of this chemotherapy protocol, which has a total of 8 cycles.  She is still tolerating it well, though we have started to notice some things; Evie's hair is thinning (on this protocol thinning is quite normal, and she is not expected to lose her hair completely), and she is suffering the effects of her 4 day at home meds a bit more, on a slight delay.  Evie is able to take her meds at home with ease, it really is incredible how cooperative she is about it, even when being woken up at midnight and constantly commenting "this medicine tastes yucky",  however the week afterwards, she is a bit grumpy, a bit tired.  She seems to get through it, and she makes it easier for us to as well. 
We had an unsettling appointment a few weeks ago with a new SickKids clinic.  Upon careful review of her last MRI (Jan. 24th), it was discovered that Evelyn suffered a small "silent" stroke.  As you can imagine, this was not easy to hear.  Everyone has had so many questions, mostly along the lines of "when?" and "how did it go unnoticed?"  I'm going to say it right now - tread lightly here people.  Paul and I were devastated to learn this news, and there have been many feelings of incompetence and guilt that have followed.  Just try and think about this, nobody knew.  The time frame we have been given, is "sometime between MRI scans" - because the stroke didnt show up in November, but did in January.  During this time period, Evie was under the care of many health professionals, and I have talked to all of them.  The signs we would have perhaps noticed were simply weakness in her left arm, specifically in regards to muscle tone.  Well, as many of you will remember, when Evie came home from the hospital in November she was so weak she couldnt sit up unsupported, and had to essentially re-learn everything.  I have gone over her records with her therapists at Holland Bloorview as she was in therapy every day, and never once did any of them note a weakness in her left arm, at least not any more than in her right.  This is precisely what makes it "silent".  Really, it's kind of incredible that this has happened and we really arent seeing any effects.  Moving forward, it does mean we have more to watch out for.  Evie now takes aspirin daily to thin her blood and reduce the chance of another stroke.  We now also check in with the SickKids Stroke clinic.
We are now waiting on follow ups with Opthamology (April), Endocrinology, NeuroSurgery, Stroke Clinic (all in June), and her 11th MRI (hopefully in April or May).  With therapy, Evie sees Physical Therapy twice a month, but has graduated to once a month for her Occupational Therapy - incredible.  Chemo is still every two weeks.  In between all of this, Evie has started swimming lessons, and in a few weeks will celebrate her 3rd birthday!  Pretty crazy how time flies. 
I will leave this email by again reaching out to you, our amazing friends and family by reminding you that Evie's Team is participating in Meagans Walk 2013.  We invite you to join our team and support a great event - it really is a lot of fun. 
You can join in the fun, or make a donation here:
 Join Evie's Team
Support Evie's Team
As always, thanks for the love and support,

Paul & Kristine

Email #13

Hello friends,

All of a sudden we're well into 2013, so I thought it might be time to update everyone again...once again, much has happened in the three months since I last wrote - that should be my first sign that I need to think about doing this a little more often.  To get everyone sort of up to date, here are the "high lights" (low lights?!)

We got to start the month of November at home, a "clean slate"...that being said about two weeks after discharge we had a day trip back to the ER as Evie was having a few problematic symptoms.  We were well prepared this time (I took my time, packed a few overnight bags just in case they were needed, made a few phone calls and even got a friend to drive us down to the ER so we didn't have to take our own car), and well taken care of, as usual.  After a day in an ER room, and visits from several of her team (including our amazing NeuroSurg Resident), she was fully checked out and cleared to go home.  We were home just after dinner, and thankfully Evie's symptoms were gone by the next morning. 

Upon our discharge in October,  we were told Evie would need to start taking thyroid medication, and so she did.  Despite being a bit of a dietary adjustment (she cannot have milk/milk products 4 hours before and after.....that means no milk with her cereal, no yogurt, no cheese for breakfast.....all of her favourites of course!), it is going well.  She has since had a follow up appointment with her Endocrinologist and they seem happy once again.  Evie is tall for her age, and her weight is getting back on track.  She has yet to gain all she lost, but is still considered to be in healthy range for her age.  Skipping ahead a bit, after weeks and weeks of tests, we have recently discovered that Evie is anemic.  This too should be somewhat of a simple fix, in that she needs to take a liquid iron supplement every day as well.  Blood work will be done to keep checking that both the Thyroid meds and Iron supplements are working - so far so good....but always more blood work. 

Within a week of arriving home, we had out first (and what would be our only) visit from our CCAC Home Care worker, and a week later I got the call that Evie was being called up to Holland Bloorview.  Evie started her rehab at Bloorview on Monday November 12th.  We had met with a social worker there the week prior and were told that they did not believe that Evie would need to be an In Patient (meaning live at the Centre), but would instead start as a Day Patient (meaning come to the Centre daily for therapy).  This is great news for our family - after living in hospital, the last thing we wanted to do was come home for a few weeks and then move out again, so it came as a big relief and we were more than willing to commute every day.  Evie's therapy would consist of daily 30-45 minute sessions with Janet (Occupational Therapy), Jennifer (Physiotherapy), Sarah (Speech and Language Pathology).  When she isnt in therapy, there is a therapeutic play room, fully staffed, that I am able to take her to (and stay, or go have a break myself).  Evie really enjoys coming to Bloorview.  I generally take Isabelle to school in the morning, and then pack Evie up and head there right after.  Her therapies are all tailored to her, so she does a lot of puzzles, plays with Mr. Potato Head, rides "her" tricycle down the hallways. Though I wasn't good about emailing, I did take a lot of pictures and videos, and I have uploaded them all to a new YouTube account.  You can watch a bit of her progress here: Our YouTube Channel.  She does her therapies, and has her snacks in between sessions.  In December Bloorview even started a toddler Music therapy session once a week!  Therapy at Bloorview is 1:1, but they made it a group program to accomodate how many toddler aged kids were currently in the Day Program - which is great because this is the normal kind of stuff that I would be doing with her....if we weren't spending our days at therapy. 

On top of starting Bloorview, Evie's NeuroOncology team shocked us a little when they told us in late November they didnt want to wait to start a new Chemotherapy protocol.   We were kind of given the impression at one point that Chemotherapy would come after rehab.....but as one of her Oncologists put it, "It looked like it was working, so we dont want to stop...".  As we remember, the last time we stopped, things kind of got out of hand.  And so we were rapidly introduced to yet another chemotherapy protocol (for those keeping track at home, this would be #4).  The new regime is a bit complicated at first: running on a 42 day cycle it involves four days of chemotherapy at home (every six hours for 14 doses), followed by two visits to clinic for a dose of chemo there.  Basically we're at SickKids every two weeks either getting chemo or chemo prescriptions for home.  I wouldn't call us pro's, but by now, we know the drill.  Some doses go down without a fight and we're amazed at how cooperative she is, and some go down with tears galore....both mine and hers.  Either way, we're getting through it, one dose at a time.  This protocol is expected to be about 60 weeks long. 

Otherwise Evie had a follow up with Dr. Wong (Opthamology), and was once again said to be on track.  Her vision is what it should be for a toddler, but it is becoming increasingly more difficult to test her.  I feel that the problem is a few things, not only is she a "typical toddler" (meaning sometimes temper-mental, argumentative, stubborn...), but she also has yet to learn some of the vocabulary needed to answer the questions...I'm not convinced she can identify all of the objects, so it's not that she cant see them, necessarily....What's amazing is that since Evie had her surgery in October, her nystagmus has settled down - a lot.  I'm hesitant to say it, but it's hardly there at all.  This isnt something that was expected from surgery - so let's just call it a happy surprise.  Dr. Rutka, Evie's NeuroSurgeon has had a follow up with her as well and is also happy with her progress.  We don't need to see Endocrine, Opthamology or NeuroSurgery for six months!

On January 24th Evie had MRI #10 and the results show that the tumour is stable.  There are no major visible changes in the tumour since her post-op MRI in October.  Though I know we'd all love to hear that it is shrinking, stable is ok - we'll take it, for now.  A week later, on January 31st Evie had her last day as an In Patient at Bloorview!  She has graduated out of the Day Program and will now be an Out Patient, taking our therapy visits down from every day to once every 2-3 weeks.  I couldn't be happier - I know Evie enjoys it there, but for me, it's been a long haul, and I am getting a bit tired. 

I want to be honest and say that things have not been easy for us over the past four months.  Evie being in hospital last fall has had a lasting impact on our family, and we are slowly coming to terms with just how serious things were.  It was a scary time, and we're still walking a long road to recovery.  I like to write with an air of optimism most of the time, because we are, I am.  I have said many times, "You get what you give", so I felt I really needed to put out more positivity in order to get that back from each of you.  But right now we're 28 months into something we thought was only going to last 11, still months away from "the end".  After such a long time, it's hard to stay and feel positive all the time.  I feel comfortable saying this now because I realize who I am sending this to.  You are our friends, our family, our community and our support system.  You have all listened, cared, and been there when we needed you to.  Remembering this makes it easier for us to admit when we feel low, because that's when we have needed you more.  Thank you. 

This is an epic update, but I wanted to cram one more thing in:

Last week Paul and I were invited to attend the Meagan's Walk Gala.  It was a great night, we were seated at a table with other parents which was so nice, and also got the opportunity to hear two of Evie's doctors speak about the advancements in brain tumour research, the new Research Centre being built, and the difference Meagan's Walk and Sick Kids are making in regards to Pediatric Brain Tumour Research.  As of today, Evie's Team is registered for Meagan's Walk 2013.  We were so proud to have so many of you walking with us last year, and would like to invite you all to join us again this year!  Here is the link to join our team: Join or Sponsor EVIE'S TEAM.  This year we walk again in support of Evie, but also in support of her friends.

Paul & Kristine