the incident

"The Incident" used to make me think of LOST.  Season Five finale, did Juliet detonate the bomb?  Did Jacob reallly get pushed into the fire?  by Locke?  I know, I know, I'm crazy...but let's face it...it was a great finale, and a pretty awesome TV show.  However, after a brief email-ersation, "the incident" will now bring me to Friday September 30th.  So let me explain "the incident"...

This day was to mark the 2nd dose of Evie's new chemo drug, Avastin.  It is given via IV drip, every other week.  This means that instead of quickly zipping through the clinic, we have to go through the longer process that we were first introduced to last fall when Evelyn was first diagnosed.  We check in, play for a while, get called in to the "Blue Pod" for assessment, go back and play (and typically make a stop at Timmy's for tea #2 of the day, plus some "balls", aka TimBits, for Evie, then wait to be called into the IV room, then moved into the Day Hospital for the duration.  

The day was going so smoothly - the IV drip was to be given over a 60 minute period this week, bumped up from 90 minutes on the first dose.  It is standard practice with this drug, that vitals need to be checked every 15 minutes during the administration, which is usually a pain...what toddler wants to be poked and proded and bothered with every 15 minutes?  This however, was the very first time Evie has managed to sit still and stay calm while having her vitals checked: blood pressure and pulse are always the worst...she hates the arm band and the finger thingy.  I credit her nurse, Laurie, with this, she was very attentive, calming, and had some pretty awesome noise making animal toys attached to her ID necklace.  When Evie was younger, by the time we made it into the Day Hospital for her IV, she was worn out, and would usually sleep in her stroller for the entire duration of her chemotherapy.  This meant that I would relax, sit on the couch, eat my lunch, and watch some TV.  Having a toddler is much different.  She is now walking around, back and forth, and keeping up with her while pulling along an IV machine, well, it's not so easy.  I typically sit with her on the hospital bed, play with toys and eat snacks.  This is what we were doing yesterday, until she got a little restless, and wanted down.  I'm not exactly sure what happened, but all of a sudden she was screaming and grabbing her chest, I grabbed her hand away and pulled back her shirt and saw that her needle was coming out of her port, blood trickling down her chest, tears streaming down her face.  It was awful.  I immediately paged the nurse, and when I told her what happened she quickly ran away and came back with four other nurses.  I then had to hold Evie down as she cried, and struggled, and resisted, as they tried to re-navigate the needle back into her port.  Once again, awful.  I didnt realize the danger involved if chemo drugs are administered interstitially...it can make the skin swell/can cause rash or allergic reaction/can actually burn the skin...I didnt know.  At the time, all I knew was my daughter was bright red, sweating, squirming, looking at me through tear filled eyes, likely wondering why I wasn't helping her, picking her up, stopping these nurses from "attacking" her.  

So I ultimately became shaken after the fact.  Everytime someone would come in the room to check on her afterwards I would ask them, "Is it dangerous?"  Just about every time, I got a "No, but it could lead to _______ (fill in the blank with one of the previous mentioned complications).  This just made me more and more anxious. I tried to call Paul, but didnt reallly want him to know how upset I was, so when he said he was a bit busy, I let it go .  Not wanting to burden anyone else, or make a mountain of a mole - given the crisis had been averted - I rocked Evie back to sleep, and sat quietly for the next hour and a half, quiet with my thoughts, my worries, my fears, waiting to go home.  

Yesterday reminded me of the seriousness of what we're doing.  I think it's easy sometimes to, not forget, but maybe dismiss?  Chemo is part of our routine, it's something we do, it has become habit.  I know and understand the process, the expectations, in general the results.  I go the the appointments, I do my part as best I can.  I mother my baby.  It's when something not planned, a deviation to my schedule of events, it brought me right back to last October, it brought back my fear, and my upset, and my anger.  Anger is one emotion I have little use for - I spent a lot of time angry, could hold a grudge with the best of em, but it has never helped me.  But for a brief while, last fall, I needed it. I think I needed to feel that initial anger, to realize that it wasn't going to help, that it was much better to get past it as quickly as I could and move forward.  

As stressful as the day was, it could only last so long.  By the time we left the hospital Evie had moved on and happily waved goodbye to the nurses.  My nerves were eventually calmed, with a little help from a bottle of red wine, and the company of a good friend.  But despite feeling better by bedtime, it is clear in my head that I had perhaps forgot, or chose to neglect for the sake of myself and my sanity, that my daughter has a brain tumour.  Chemo is not just "a Friday activity" as we often joke it is, it is a treatment, the only treatment we have right now, to hopefully save and restore our daughter's health.  It is serious business.  It is her life, and she is mine.  I hope I can remember this moving forward, and not have to be reminded by another horrific "incident".

   

the kindness of strangers

Today I was given a gift for Evelyn from a woman I have never met.  She has never met Evelyn either.  In fact, aside from a presumably short conversation with my parents over used furniture, and an inquiry into my Mom's t-shirt, she knows nothing about us. What she does know is that the people who gave her an old unwanted tea cart have a granddaughter with a brain tumour.


I hate that this is currently something that defines my daughter.  She is so much more that that.  She is a happy little girl.  She is strong, and brave.  She is walking and talking.  She is tall, blonde and blue eyed, nothing like her Mommy.  She is quiet, smart and funny, just like her Daddy.  But, no matter how many facts and adjectives I can come up with, she still has a brain tumour.  A brain tumour that is continuing to grow, continuing to take up more space, and define her further.


I worry that other people will forget all the things that she is, and label her solely on her medical diagnosis.  I worry that they already do.  I don't want Evelyn to be all of these wonderful things "despite having a brain tumour".  I dont know what lies ahead for her, but I dont want people to expect less from her, or even be more amazed at her accomplishments.  I dont want it to define her.  I dont want people to look at her that way.  I just want them to see her.  I dont want the tumour to be a factor at all.....but unavoidably, right now, it is.


A kind woman brought a gift to my parents for their granddaughter.  A cute little pink outfit, capris and a t-shirt that likely wont fit for another summer or two.  This gift has come at a time when it was greatly needed.  10 months after her initial diagnosis, and one day after receiving some negative test results, we were reminded that people are thinking of her, and of us, that they care.  As time passes, I realize that we are not the center of attention.  We are not on the minds of our friends and even family as often as we might have been last fall.  Everybody moves on, and though they dont forget, we become less a part of their day to day.  I wish we were able to forget in the same way, but it doesnt work that way.  We dont have that luxury.  I know we are in everyones thoughts, and I'm not trying to imply that we need to hear from everyone, from anyone.  But as a Hypothalamic Optic Glioma has become such a normal part of our day to day, a simple gesture from a stranger is a welcome reminder that we are cared for.  This little gift has reminded us that our friends and family are still thinking about us, and are likely having just as hard of a time.    

Email # 6

Hi there, 

It has been another couple months of change around our house!  Since I last wrote to all of you a lot has happened - life is ever-changing I suppose.  Just about 9 months into the process, next Friday July 29th marks the 35th Chemo Dose...Evie's treatment is scheduled for 70 weeks, which means we will officially be half way there!  This is a milestone we have very much been looking forward to, and we will celebrate by taking off to the cottage for a few days.  We cant wait!

We celebrated Evie's 1st Birthday on April 13th and were once again overwhelmed by the love and generosity of our friends and family.  So in case you didn't hear it then, we Thank You.  As many of you know, we participated in Meagan's Walk this past Mothers Day.  Not only did our participation result in $1,200 in funds raised, but it provided me an outlet I didn't know I greatly needed.  This event really touched me, so much in fact that I felt compelled to write them an email of gratitude.  This started a chain reaction:  my email and a few photos of Evie and our team were then published in a Meagan's Walk newsletter, and once that was sent out I heard from a family whose son has a story remarkably similar to Evelyn.  In fact, step by step it is almost identical - this is pretty amazing as the kind of tumour they have is very rare, especially in children their age.  Their son is now 5 and is thriving.  This is just what we needed to hear, and it restored any hope that may have stagnated over the months.  

In May Evie was given the go-ahead to start "Express Chemo".  While there is no change in her actual chemotherapy, our hospital visits are significantly sped up.  This is basically because she is given the ok for chemo each week based on the previous week's bloodwork results. In the past they would take a CBC (Complete Blood Count) each week and we would wait out the results and see Doctors for approval to get chemo that day...if the counts were too low, chemo is a no go.  So now she gets the CBC each week but we use the previous weeks results and basically go on good faith - that is as long as we have no concerns.  We then check in with her team every 6 weeks.  This has been working out really well, Evie tolerates the chemo like a champ, she is doing great.

In late June Evie met with her Endocrine Dr.  They have no concerns with her hormone levels, which once again clears us for another 6 months!  We also had MRI #3 on June 29th.  Cautiously optimistic as we have noticed Evie's nystagmus seemed to be getting better, the results were a mixed bag of sorts.  Evie's tumour has grown again, an additional 3mm, however the growth from MRI #2 to MRI #3 has slowed (compared to MRI #1 to MRI #2).  This, along with the fact that we feel she is doing well, is a good sign according to her team.  It is very common for a tumour to progress before it starts to regress.  We also need to keep in mind that as Evie is on a low dose/high frequency treatment plan, it takes time.  Her doctors have decided that they would like to give her current chemo drug a few more months, as results can be delayed (she started this one 4 months ago).  The plan is to do the next MRI in 2 months as opposed to 3, and if there is no improvement, a new treatment will be decided.  We are currently waiting for MRI #4 to be scheduled, should be the end of August.  This will be around the same time she sees the Opthamology team again.

Medical news aside, Evelyn is quickly approaching toddlerhood.  She is up to 6 teeth, and she has more and more words every day.  She is sooo close to walking...we get a few steps at a time every now and then - more often in the last few days!  She clearly knows we are encouraging, as she often drops on her bum and giggles when we ask her to show us her walking!   She is growing like a weed - has almost tripled her birth weight (she is holding at 20.5lbs), and has grown over 10 inches since she was born!  With summer in full swing she has a genuine love for the public wading pools - and with the weather lately, who can blame her!

We hope you're all enjoying the summer....it might be hot but it will be over before ya know it!

Paul & Kristine

MRI #3

MRI #3

Wednesday June 29th

For Isabelle, it's the last day of 1st grade.  For Evie, it's MRI # 3.  A big day for both of our girls.  We are cautiously optimistic.  Evie's nystagmus seems to be slowing, and otherwise she is thriving in babyhood....on her way to toddlerhood actually.  

We arrived at SickKids at 8am for her 10:30am MRI.  Evie was checked in the Haematology Clinic, where her port was accessed and CBC taken.  We then moved down to the MRI department to check in.  I can't help but think how cute she looks every time I change her into the tiny hospital gown - perhaps a strange thought!  

At around 10am they called us in, ready slightly ahead of schedule.  Paul and I took Evie back, where she gets checked out once again by a nurse (who's name was Evelyn!), and where we also met her Anesthesiologist.  A few more questions and then comes the hardest part: leaving.  It takes literally seconds for the anesthesia to work, and then with a gentle kiss and hug, we walk away, told to return in an hour.  This has got to me my least favourite part of the entire process - out of all we have been through in the past 8 months, I find it terribly difficult to walk away from my baby in such a vulnerable state.  That being said, I am confident in the hands we are leaving her in - they are only there to help.  

So Paul and I spend the next 60 minutes wandering the halls of the hospital, stopping at Tim Hortons, pretending to shop, taking care of hospital paperwork, anything to distract.  When we finally feel we can head back to the waiting room, we have to wait again to be called into recovery.  The Recovery room is small, room for about 2 patients at a time, separated of course by the hospital curtain.  Evie wakes up and is like a little drunken baby.  It takes some time for her to regain full control of her body, and she is quite silly, but completely loving.  She is definitely happy to see us, and we are her as well.  

Pretty soon we are on our way home, with careful instructions for the next 24 hours.  One would argue the hard part is over, but as we move on from the procedure, we have started the waiting game.  We have been told that one of her doctors will call us either today or tomorrow with results.  

Thursday June 30th

Despite keeping my cell clutched in hand all day (and night), we did not hear from anyone at SickKids yesterday.  "No news is good news", this is what I keep telling myself, but it gets harder as time wares on.  Finally, at about 3pm the phone rang.  I had a brief conversation with Dr. Bartels, where she informed me that it appears that though the tumour has slowed down, it has continued to grow another 3mm since her last MRI.  

Hearing that it has grown again is difficult, but the key is that they believe it is slowing down - which is a positive sign. I do feel however , that they were also hoping to see more of an improvement.  I was reminded that her case will be discussed next week with the entire Brain Tumour team.  Next Friday when I bring Evie in for chemo I will find out what course of action they would like to take, and if they plan on making any changes to her treatment plan.  

This was not the news we were hoping for, nor what we expected.  I believe I said we were cautiously optimistic, but honestly I wanted a piece of good news.  It has been a long 8 months.  Paul and I are quick to remind each other, as well as others, that in spite of everything, Evie is doing really well.  She is a happy little girl, learning to walk and talk.  She can see and recognize, she remembers and mimics.  She makes us laugh everyday, and those things should not be overlooked.

Welcome To Holland

Welcome to Holland - a new perspective

Perhaps you didn't know that for five years throughout the summers of high school, I worked as an "Integration Facilitator" for the City of Toronto Day Camps.  I fell into this job last minute, by chance, and though I was unsure at the time, it proved to be a very rewarding and educational experience.  

For seven weeks I would work in an un-air-conditioned, aging school with children with special needs, including but not limited to Autism, Cerebral Palsy, Downs Syndrome, ADHD, a terribly sweet little boy who was Non-Verbal, Hearing and Visual Impairments. 

In the course of those summers I was often challenged in the attempts to integrate these children into the "Normal Day Camp" experience.  Adaptation became key.  I carried with me a whole fanny pack (terribly unfashionable I might add) of "transitional items" simply to travel from activity to activity.  I learned a lot from that job.  I learned a lot about children with special needs.  I learned a lot about children in general.  I learned a lot about tolerance and I learned a lot about myself.   I realized then how difficult life had become for these parents.  I couldn't imagine how they got through life, especially when I was having a hard time simply getting through the day.  It was nothing short of exhausting. 

I guess the reason I am bringing this up now is because something very strange happened today.  I'm actually not even sure that strange is the way to describe it.  Let me explain a little further.  When I was working as an Integration Facilitator I would attend an annual training.  It was basically a lot of ridiculous games, a guest speaker, a first aid refresher, etc.  It always included a sampling of a "pivotal" scene from Rain Man (the scene in which Charlie attempts to board a plane with Ray, a perfect window into the difficulties of transition for someone with autism), and a binder full of resources to use throughout the summer. 

Today, in what I can only describe as "fate-like", one of the handouts I have in my Integration binder, was forwarded to me within an email.  It was sent from a friend of a friend - a lovely Mother I have only met once.  She thought I might appreciate the perspective and outlook portrayed within the piece.  Not once in my years of Integration training had I read it and cried.  I remember thinking it was a good piece, a great way to try and explain the feelings a parent has when something happens to their child.  I thought I got it.  Reading it this evening, I'm starting to think that I never really did.  Or perhaps I just have a different understanding now.  I'm not really sure.  What I do know, is that I read this again this evening, and it meant something entirely different.  It meant more. 

I can't expect that others will appreciate it the same, or understand it the way I do now, unless of course you are having a similar experience.  By this I do not mean to sound some kind of "elitist".  I do think, however, that you will perhaps have some insight, as I did so many years ago.  Insight into the world that Paul and I are now living, the world where you end up somewhere you never really wanted to go. 

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

 

You're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Meagan's Walk 2011

"Evie's Team" registered for Meagan's Walk only two days before the event was to take place.  In those 48 hours however, our friends and family raised over $1,200 in support of Pediatric Brain Tumour Research.  I can't wait to register again next year.  I can only imagine what we are capable of with a little bit more notice!

Another Friday at Sick Kids.  I was waiting for my ride home when I came across a pamphlet.  What caught my attention was the proclamation of a giant hug for Sick Kids.  As I waited in the lobby, enjoying my rare Chai Tea Latte, I read it through and a smile came across my face.  Meagan's Walk.  It was an event.  It was a fundraising event.  It was a fundraising event for Pediatric Brain Tumour Research.  It couldn't have been any more perfect, and I was finally ready for it.  

I read it over and immediately BBM'd Paul and told him that I wanted to do the walk for Mother's Day.  As soon as I got home, our family was officially registered.  Within a few hours our team was being supported and funds were being raised.  Over the next two days we were overwhelmed with pledges and on Mother's Day we packed up and headed down to Ontario Place. 

This was quite possibly the best way I could have spent Mother's Day.  It was so special for me to be there, to be surrounded by people going through the same kind of situation that we are.  We were not the odd ones out.  It was nice to feel that way.  I really enjoyed being a part of this event and am very much looking forward to participating again next year....perhaps even with a few more team members!

365 days, 180 degrees apart

April 13, 2011, Evelyn's 1st Birthday


I would hazard a guess that I have been looking forward to and counting down the days to Evelyn's first birthday for weeks...months...perhaps even since the day she was born.  A first birthday is a huge deal.  It's a benchmark.  It's like a passing grade in what is arguably one of the toughest years of parenthood.  By your childs first birthday, you've also encountered a lot of other first; eating solids, teeth, sitting up, moving around, sounds if not words, sleeping through the night, just to name a few.  With every first you hit, you feel a sense of accomplishment, and you gain confidence in your parenting skills.  The fear of a newborn has long passed, and despite not knowing what adventures toddlerhood is going to bring your way, there is less panic about your abilities to handle it all.


With the curveball we were thrown at the 6 1/2 month mark, Evelyn's birthday has been even more of an event to look forward to.  It has been a positive sure thing to look forward to, no matter what else came up.  And now it's here.  Her birthday fell on a Wednesday, not the most rockin day of the week, but it will due.  I guess whenever you really look forward to something, there is potential for it to not live up to the hype, and though I hate admitting this, I feel this is what has happened.  I was very excited for the Birthday (Birth Day), and I wanted to really celebrate and focus on all things positive.  After such a stressful 5 1/2 months, I really wanted to enjoy the day.   I made a cake, and Paul and I purchased her first birthday present.  We had planned two parties for the weekend, one with our families and one with our friends.  I thought we had it all figured out, but what I wasnt prepared for was how differently Paul was feeling about the day.


Every ounce of my enthusiasm and excitement was countered by his feelings of sadness and regret.  Where I was happy for the day to arrive, to have a reason to celebrate something positive, Paul was stuck thinking about all of the negative that had consumed our lives.  He was upset that his baby, only one year old, had been put through so much, so soon.  Though I found it cute that Evie knew where her EMLA patch went when she found it in my purse, it saddened Paul that she was so wise to a step in her chemotherapy.  I was proud of how much we had done, Paul was more focused on the fact that we had to do it in the first place.


When we finally figured out how far apart our feelings were, the day had escaped us.  Though I am happy to say we celebrated in spite of our own feelings, to say the day was bittersweet would be an understatement.   Even thinking back now, I find it so hard to believe that we were on such different pages, but it goes to show you that everyone has a different perspective and a different way of dealing with things.  This is clearly not the 1st Birthday I expected to have when our daughter was born, but it's a 1st Birthday none the less. No matter what we felt or how we celebrated, Evelyn Marie Laplante turned one, and no matter what the next year of her life entails, we are ALL looking forward to celebrating her next birthday.