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