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.

364 days

It's one year to the day that I went into labour.  I am so nostalgic.  It's to the point where I have pulled out my labour records (thanks Midwives!), and have started to re-read my entire labour.  I have already annoyed Paul with the, "Do you know what happened at this time last year?!"  He could care less that I had a contraction that wouldn't resurface for another 20 minutes.  But I do.  And let's be honest.  I hardly need the records.  That evening, in it's entirety, and the morning hours that followed are forever ingrained in my mind.  I cannot forget what has become my biggest accomplishment to date.
I always used to think it was odd that my mother knew exactly what time we were all born.  I mean, weight was one thing, but the time?  Seriously?  I am now stupidly almost counting down the minutes.  11:23am on (what was a) Tuesday morning in April.  And I can not only remember the time, but so many other little details.  I remember how nice and sunny it was on my last full day of pregnancy.  I remember staying at school with Isabelle until 5pm, crouching akwardly on a rock as she played.  I remember making Spaghetti for dinner.  I remember feeling strange, and not quite clueing into labour.  I remember how excited Paul looked.  I remember trying to go to sleep and realizing it wasnt gonna happen.  I remember staying awake all night waiting for a real sign of progressing labour (though I didnt get one until 6am).  I remember watching Paul sleep as I picked up his slack and timed contractions, lol.  Much later I remember the midwives springing into action (as Evie's cord was snugly wrapped around her tiny neck), I remember where I was (gently positioned upright on the edge of my bed), I remember the colour of the little hat placed on her head (pink!), and I remember seeing arms and legs....long little arms and legs.  I remember her birth so well, and oddly enough, the rest of the day is somewhat of a blur.  It actually felt very long.  Full of visitors.
A year has passed and so much as happened.  Babies grow so much in a year, its really incredible.  As adults much of our changing has somewhat stopped, or at least slowed down.  It is a much more gradual process, so much so it is almost unnoticed.  But babies....they evolve so much.  In a matter of months they go from cute little newborns basically just sleeping and eating, to babies who can watch and learn, to toddlers who have learned to ask, demand, anticipate and expect.
Part of me is thankful Evie has not been an early learner....she doesnt really have any words, and still insists on scootching around on her bum.  I've been blessed with my baby for a full 12 months - no time cut short!  Perhaps that sounds bad as a parent....discouraging perhaps?  I dont mean it that way at all.  I'm sure all parents can relate to the feeling of never wanting their little ones to grow up.  Babies are only babies for so long....I'm thankful for all of my days of scootching, baby babble, cuddling, and even nursing.  I fear that these days are numbered.....I'll hold on as long as I can.  

5th email

Hello again,

Once again the past few months have escaped us.  Spring has arrived and it appears that the weather may actually start to accommodate.  It has been much more of the same, kind of getting to be routine with all the appointments, but here are the highlights:

Roughly one month ago Evelyn's doctors decided that it would be in her best interest to change her drug treatments.  Despite being given 2 pre-meds, her allergic reaction just wouldnt go away.  With her new treatment plan she is now given only 1 drug (as opposed to 2), and is no longer required to take the pre-meds, and also doesn't require the anti-nauseant afterwards.  This new drug is also quicker to administer as it is referred to as a "push" (think any typical vaccine) as opposed to an IV drip - so our days at the hospital are significantly shorter.  The down side is that the treatment plan is given over a longer timeframe, an extra 10 weeks to be exact.  It is also given every week, no weeks off.  She has had 4 doses and seems to be tolerating it well.  

The new date we had been given for MRI # 2 was March 11.  Well, sadly that day came and went with nothing.  We got the call at dinnertime on March 10th - the MRI department had an emergency and Evelyn was being bumped.  To say we were disappointed (again) would be an understatement.  Thankfully it was rescheduled for only 2 weeks later, and Evie received her 2nd MRI on March 24th.  We were fortunate enough to be given the results that same day, though they were not as positive as we had hoped.  The exact words we heard were, "It seems as though the tumour is more generous than the initial scan" - a nice way to tell us it had grown.  Based on the results we were told that a change in her drug treatment would have been necessary even without the allergic reaction - so it was a good thing we had already started a new one.  Given the changes to her treatment, the plan is now essentially to wait until the third scan to see if the new drug is having a better effect.  One positive is that despite the scan showing an increase in mass, Evie is thriving as a baby.  

She was seen by opthamology on March 11th and they were happy with her progress.  She no longer squints to see things, though she sometimes turns her head.  Unless we find a reason, her next appointment isnt until August.  At 16 months I'm not sure if the eye exam will be easier or harder!

We had another trip to the ER last week - nothing serious though.  It's a bit of a shame that we need to spend an evening in the ER just to get the ok to give our little one some tylenol.  That being said, we do understand the seriousness and risk involved if she comes down with a fever, it's just unfortunate we have to put her through so much (waiting and bloodwoork) in order to provide her some relief.  

Fevers may become a bit more frequent as Evie is finally teething....she cut her first tooth a couple weeks ago, and there are about 3 more that are definitely close.  I cant tell you how excited we were about this.....I kept waiting and waiting, watching all of her little baby friends with their mouths full of itty bitty teeth, Evie with her big gummy smile - now a thing of the past.  It took 11 1/2 months, but she did it.  Otherwise she is progressing beautifully.  Though she has yet to take those first steps on her own, she is getting more comfortable walking with people, and cruises around the furniture no problem.  Monkey that she is, she is even climbing in, out and over everything.  Her eating habits and weight are essentially a non-issue.  She is still a "little" baby, but is not a concern.  

As we are already more than a week into April we are counting down the days....Evelyn will be 1 on April 13th!  I cant believe this.  The past year has gone by far too fast.  Someone I know said about 2010, they cried their happiest tears and their saddest, and I think that applies to me as well.  I think this is why we are all so looking forward to celebrating Evie's birthday - she is such an incredible little girl.

Thanks again for all the support, this is still something we are getting used to and it helps to know, months later, that she (and we) are still on your minds, and in your thoughts and prayers.

Paul and Kristine

4th email

Hi Everyone, 

It seems like a lot has happened since I sent out the last update in early December!  I am realizing that January came and went all too quickly for us - and am feeling by the look of the calendar on our fridge, that February is going to do the same.  Evie has now had 12 treatments!  This means that she has officially completed what they call the "Induction Chemo" (which in her case was a cycle of 10 doses of chemo + 2 weeks rest) and now begins the "Maintenance" (which is a cycle of 5 doses of chemo + 1 week rest).  As per her treatment protocol, she will be cycling through the Maintenance chemo routine for the remainder of the year.  In the past month however Evie has developed an allergic reaction to one of the two chemo drugs.  As a result, she is now required to be given pre-meds prior to her treatment to avoid the reaction.  This ultimately means more medicine for Evie - and a very tired little girl on Fridays.  

Over the holidays we also noticed that Evelyn was tilting her head and squinting slightly.  We brought up our concerns with her team of doctors and they arranged for us to have another appointment with Opthamology - despite having them give us the all clear 2 weeks earlier.  We saw the Opthamology team in early January and were once again told that there is no visible damage.  Their only explanation is that perhaps she is finding a "null point" - a way in which she can hold her head and look around where her eyes stop shaking.  Essentially she is compensating, coping - which is good. She will be back to see the Opthamology team in March.  

Evie also had her first appointment with Endocrinology since her diagnosis.  She was given a stress test and passed!  They are happy with her development and have no concerns.  They keep an active watch on her blood work each week, and have asked she come back in June.  

On top of all this, on what was supposed to be our 2 weeks of rest from Hospital appointments and chemotherapy, Evie was re-admitted as an In Patient in early January.  She came down with a very high fever. The "rules" we were given state that once a fever passes a particular temperature we are required to call the hospital and talk to her doctors.  They requested we come down to the ER to be properly assessed.  After thoroughly checking her out they diagnosed her with RSV (Respiratory Syncytial Virus).  It is quite common, especially in babies going through their first cold and flu season - apparently 60% will get it.  In her case, the RSV caused her to get Bronchiolitis - which was explained to us as bronchitis in children that has gone further into their lungs mainly because physically they are so much smaller.  She was closely monitored and we were released four days later.  We took home a ventolin puffer and chamber, though we have not had to use it.  Once again, I can't say enough about the team of Nurses (and doctors) who took care of us at Sick Kids.  

And finally Evie was scheduled to have her first update MRI on January 21st.  Unfortunatley they cancelled on us because of her previous RSV infection - anesthesia is too risky if there has been an infection involving her breathing/airways.  We were really disappointed, especially because we only found out a day before the MRI.  We are now looking forward to her rescheduled date, March 11th.  This MRI will be the first chance to look at the state of the tumor since diagnosis - so this date cant come fast enough!  

When I look back at all I have just mentioned, it's no wonder why I feel like January disappeared!  Aside from the medical, we were busy as usual.  Evie seems to have found a love for food (fingers crossed) - or at least a love for chicken.  She is eating now, a high calorie high protein diet which seems to be working for her.  She continues to be on an upward trend - Paul and I couldnt be happier, or more relieved.   She is also the fastest bum scootcher around!  She pulls up on everything and walks along things a bit too.  Just this morning she climbed up and over a storage bin we were using the block a doorway...granted she did the up part far smoother than the over...it was sort of a thud.  Eek.  No worries, she's absolutely fine!  

Isabelle is losing teeth like they're going out of style and is also quite the scholar.  She has recently started having weekly dictés (spelling tests) and has scored perfect 3 out of 4 weeks! She thoroughly enjoyed her snow day this past week too.  

Paul and I are also doing well.  We again wanted to say thank you to all of you for your support.  As I mentioned over the holidays a friend had recorded some Christmas songs and made them available for download.  He recently told me that he was able to donate the proceeds to Sick Kids - over $300....thank you so much - it means a lot.  I also want to say thank you to another friend who kindly donated to Sick Kids in lieu of favors at her daughter's Christening.  Your generosity and thoughtfulness makes us remember how lucky we are.

Paul and Kristine