Our 3rd email

Hi Everyone, 


I realize it has been a few weeks since I last emailed an update about Evelyn - I know there are some who are eager for an update, so here it is!

In the last emal, Evie had just started her Chemotherapy treatments - well, today marked week number six!  We have treatments every Friday and with the number of steps involved and the waiting games that come with hospital visits, we are essentially there for the day.   Evie has been tolerating the chemo really well.  Her reaction the first few days after is more neediness and crankiness as opposed to nausea - and I actually think it is a side effect of the additional medicine, not the actual chemo.  Evie is, and has always been a petite and lanky little baby, but as weight loss can occur with chemotherapy we are working hard at getting her to pack on the pounds (or ounces as the case may be). Though it's been an uphill battle, we are slowly seeing an increase in her weight.  Lucky for Evelyn this means I have somewhat reluctantly (at least at first) put my guard down as far as her food is concerned.  She now indulges in many things I was hesitant to offer, like cookies, meats, juice, and soon egg yolk and yogurt!  

Today was a big day as we also had our first check in with the Opthamology department.  There is basically no change from her last appointment: no signs of damage to her optic nerves, and therefore her sight.  Evelyn's vision is actually right on track with what they expect from a baby her age.   We are obviously very happy about this!  We can expect another appointment in roughly 3-4 months.  

Outside of her treamtents and appointments Evie is thriving in babyhood and will be 8 months on Monday.  Her teeth have yet to pop through, but are close!  She is mobile, scootching around on her bum, it's hilarious to watch.  She has also learned to art of pulling herself up, which means we have also lowered her crib!  And finally, tis the season for coughs and colds....I cant wait until she understands how to blow her nose!

Isabelle is doing great as well - she has become an even bigger help over the last couple of weeks.  She often reads stories to Evelyn before her bedtime and I find her playing with Evie.....or at least Evie's toys!  Thriving in her own right, Isabelle was awarded the R.H. McGregor Ace Award in November for "Empathy".....sadly she missed the award assembly because she was home sick!  We're still very proud, and she is none the wiser about the assembly.  

Evie's next big appointment in in early January, and I'll send out an update afterwards.  Until then, no news is essentially good news, or at least means there is nothing new to share!  We hope to see everyone soon, but otherwise have a Happy Holiday Season!

Paul & Kristine

Chemo, in a nutshell...

So you want to know how it all goes down...

So a lot of you have been asking me what exactly happens when I take Evelyn for her weekly treatments.  I thought I'd take the time here to briefly explain the process:

1) Evie and Mommy arrive at SickKids and make our way to the Sears Cancer Clinic on the 8th floor.  Once we're there we get to stand in line and check in with the lovely receptionists, Linda and Joan.  They ensure that Evie gets "in the system" and give us her paperwork, and a fancy little yellow bracelet....which we actually put on her ankle!

2) We next move down the clinic and line up to get Evie's finger poke - this is her bloodwork, a tiny little poke on the tip of her finger, and then the blood is collected, just enough to run the appropriate bloodwork.  

3) Now we wait in the clinic waiting room (which is fully equipped with numerous televisions, computers, video games, toys, and volunteers who are usually either singing or making crafts) until we hear, "Evelyn Laplante to the Blue Pod"....kind of like code for, "the Doctor is ready to see you", but then again, we're not quite there yet!  

4) Once we go to the Blue Pod, we meet our nurse, Kirsten, and get our official weekly weigh in, and then move into one of the exam rooms.  Here we see any number of people, it just depends on the week; fellows, social workers, nutritionists, and of course whichever doctor is in the office that week.  

5) By the time we finish in the Blue Pod, we usually have the results from Evie's CBC (bloodwork).  As long as they are good counts, chemotherapy is a go.  That means we go back to the waiting room and wait until we hear, "Evelyn Laplante to the IV room".

6) The IV room is where the amazing nursing staff prep the child for their chemo.  In Evelyn's case, she had a port*inserted in her chest shortly after diagnosis, so the nurse would be accessing her port.  This is basically done by pressing a needle into the port.  From there they can more easily administer medications, antibiotics, and even take bood, directly from her port.  She is hooked up to an IV, receives her Bravery Beads* and off we go...

7) As Evelyn is receiving two chemotherapy drugs, Carboplatin and Vincristine, we are then moved to the "Day Hospital" (another wing on the 8th floor), and given a private hospital room to enjoy while her treatments are administered.  Another nurse devoted to Evelyn comes in and administers first the Vincristine (as it is a singe syringe, referred to as a "push"), and the hooks up the Carboplatin (as it is an IV drug that is administered over 1-2hours).  Once it is hooked up we are on our own, in our little room until it is done, at which point the nurse comes back, unhooks everything, and we're free to go home!

Port: a special IV line placed completely inside the body, when IV therapy is required over a long period of time.  It consists of two parts, a chamber (called the port), and a thin flexible tube (called the catheter).  One end of the catheter is attached to the port and the other is inserted into a large vein leading towards the heart.  A port can typically stay in place for months, or even years.  

Bravery Beads: This is a special program created by the Women's Auxiliary.  Children are able to collect a different bead for every procedure or event incurred during their treatment at SickKids (a light blue bead for a Clinic Visit, a gold bead for a trip to the ER, a star shaped bead for Tests/Scans, etc).  When finished their treatment, they will have collected a necklace (or necklaces) full of beads representing all of their accomplishments and their unique to their journey.  For more information, check out www.sickkids.ca/womensauxiliary.  There is also a company, Bravery Hearts, that creates unique jewelry, and the profits go towards the Bravery Beads program!

The first 7 days

Hello again, 

So it has officially been a week since Evie was diagnosed.  So much has happened, it's still somewhat hard to believe.  We wanted to first of all thank everyone who has emailed or called - your warm wishes and support have meant a lot and greatly helped us.  You have all confirmed what we already knew: we have an amazing group of family and friends to rely on.  

Evie was released from Sick Kids on Thursday afternoon and is now considered an out-patient within Haematology/Oncology.  On Wednesday morning she had a minor surgery to install a device called a port in her chest that will facilitate the administration of her chemotherapy treatments.  She will have the port for as long as her treatments are needed, and though it may sound rough, it actually makes the process less painful.  Not wasting any time, Evie had her first chemotherapy treatment on Wednesday afternoon.  As mentioned before, it is a low dose / high frequency treatment plan, consisting of a combination of two drugs, with the addition of an anti-nauseant.  All in all, Wednesday was a big day for Evie.  

Now that we are home we are trying to get back to normal - at least the new normal.  The plan now is quite simple: we continue to monitor Evie, return to Sick Kids weekly for her treatments, attend appointments as necessary with other departments (ie. opthamology check up in December), and most importantly stay positive that the Chemotherapy is doing it's job.  It does make you feel somewhat helpless, but as my Dad keeps reminding me, "We have no reason to think chemotherapy wont work.  Don't give up on something before you even give it a chance".  

Evelyn is happy to be at home, she definitely missed her big sister!  She is doing well, happy as ever, though I think she got a little spoiled having both parents to herself!  She is venturing further into the world of solid foods (still detests carrots!) and has managed to figure out how to move more on her own....despite traveling backwards instead of forwards!  

Once again, thank you for your overwhelming love and support, it means the world.

Paul and Kristine

In Patients

Rounds start at 8am every Morning.  You get the choice of particiapting, which basically means standing at your doorway and listening and observing as the entire medical wing staff gathers and discusses your child and their diagnosis.  The list things about her very matter of fact-ly.  Female, 6 1/2 months, heathy until sudden onset rotatory nystagmus, hypothalamic optic glioma diagnosed after extensive testing and MRI scans 3 days ago.  Was it really only 3 days?  Could my daughter really be summed up just like that?  What about her smile and her bright blue eyes?  You forgot to mention that she recently learned to sit up all by herself!  These things were not important, not to them, not yet anyway.  Evie was just another patient in the wing, another chart, and another test.  But as her parent, I refuse to accept that.  She is so much more than what they see.


After rounds, we were left alone for a little while.  Eventually we met with the Head of the Neuro-Oncology unit, Dr. Eric Bouffet.  He brought along Kirstin, who we would learn was "Our nurse", and Deb, our assigned Social Worker.  Dr. Bouffet further explained Evelyn's diagnosis, and was able to do so in a way that sounded less medical, more practical.  He explained Evie was going to receive chemotherapy, why that was the best option and what the goal was.  He explained that she would need a surgery to insert a port to facilitate the process of chemotherapy and that the surgery would happen as soon as possible.  He explained that once her port was inserted, Evie would begin Chemotherapy treatments, and we would at that point be discharged and considered Out-Patients.  We would come to the hospital weekly to receive treatments, but would then be able to leave and return to our "normal day to day lives".  My initial thought was, How Strange.  Something so serious and we were being trusted to leave, coming back only for medicine?  Wow.  A part of me wanted for them to just fix the problem while we were there, however long it took, and then send us home when it was all over with.  I was starting to realize that this problem had no quick fix.  We were clearly dealing with something bigger, a long and winding road ahead of us.


Deb, the Social Worker, gave us a binder: The cover said, "b.r.a.i.n.child", standing for Brain tumour Research and Assistance Information Network.  It was divided into sections, and included information, resources and sheets to fill in.  Though some might have found this overwhelming, I felt relieved.  It was like work: instead of a Show Binder, I had a Brain Tumour Binder.  I had room for all her appointments, all her Contacts, and Charts to fill in information like height/weight and Blood Counts.  Though I didnt know much about any of that just yet, I knew that the Binder would be a comfort to me.  Busy work.


Evie's port was inserted the morning of November 3rd, and she received her first does of Chemo that afternoon.  Upon prepping her for surgery, they allowed us to stay with her right up until they started.  A surgeon and anesthesiologist explained how the port works and the process of the surgery, all while children's programming was on the screens scattered across the room.  Port Insertion was a very common surgery at this hospital, it seemed like Evie was just one of many children receiving a port that day.  Once they were ready, they asked if I would prefer to hand over my daughter or walk her in.  Stupid question.  I cant imagine "handing her over" to anyone, for anything.  When given the choice, I will be there, and if I could have been in the room, I likely would have been.  That being said, the walk down the hall and into the sterile room was much harder than I imagined.  I suited up in the "parent coveralls" and picked up my daughter, dressed in her Hospital issue baby size gown.  She has no idea what is happening.  I carried her into the operating room, laying my baby down on the operating table.  It was all very overwhelming.  As she lay there, the anesthesiologist put her to sleep, and I turned and walked away, tears streaming down my face.  By the time I reached Paul in the waiting room I was silently sobbing.


We were instructed on where to wait, and approximately how long it would be.  The few hours felt much like the saying about a watched pot never boiling.  Time couldnt pass fast enough.  We got breakfast, and magazines, but we sat there like zombies, not reading or eating.  I jumped to my feet the minute her surgeon came in the room and told me she was awake in Recovery.  Everything had gone well, like they imagined.  Routine surgery.  Maybe for them.  An hour later Evie was cleared from Recovery and we were taken back to her room.  She got her chemo later that afternoon.  I couldnt help but think what a long day it had been for her, and for us.


On November 4th we were discharged from SickKids.  I distinctly remember feeling like we were different people from the ones who had checked in only days before.  Everything seemed the same outside, but it was all terribly different as well.  It seemed so unimaginable that after being given such devastating news, we were being sent home, with a binder and a treatment plan.  That was it.  We're going to do this, and fingers crossed, it's going to work.  Only time will tell I suppose.

day 3

October 31, 2010
Hallowe'en


We woke up this morning in our own beds, and I have never appreciated it more.  Waking up and seeing not only Paul, but our daughter snuggled up between us in bed.  It was perfect.  But all too quickly reality flooded my brain and I was forced to remember that we were due back at the hospital before noon.  We enjoyed our breakfast, packed up our bags and drove back to SickKids.


We settled back into our room, and were told Opthamology was expecting us.  We were taken down to the department, eerily quiet given it was a Sunday.  We waited in the hallway for the On Call doctor to arrive.  I have no idea how to administer an eye exam to a 6 month old, but clearly they have their ways.  Evelyn was checked out, and we returned back to our room.  The Oncologist came back for a brief visit to explain we would meet her team on Monday or Tuesday.  She was no longer under the primary care of the Neuro-Surgeons as her tumour was decided to be inoperable.  Removing it would surely result in damage to her vision, if nothing else.   Evie was now under the primary care of Neuro-Oncologists.   This team would be able to give us more information about her case.  He also granted us another leave so we could again go home, and take Evelyn out for her first Hallowe'en.  Thankful doesnt begin to describe how happy we were.  We took off faster than the day previous.  We knew all too well they would want us back soon, in fact they wanted us back that night as she was scheduled for tests early Monday morning.


Once we were home we again tried to put everything out of our minds and focus on Hallowe'en.  We carved our pumpkins and made a special baby pumpkin for Evie.  After dinner we got all dressed up to trick or treat....Isabelle was Dorothy, Evie was the Lion and Daddy the Tin Man - together they were adorable.  It was uncharacteristically warm that evening, and walking up and down the street, seeing our neighbours was a strange feeling.  In the back of my mind, I couldnt stop thinking about how drastically our lives had changed in the past 2 days, and yet they all have NO idea.  Here we are trick or treating, making idle conversation, like nothing had happened.  It was as though we got to pretend for a little while longer.  Before long we were leaving Isabelle at home with her Grandma, and heading back to the Hospital.  Not the 1st Hallowe'en we imagined, but Paul and I are grateful we got to take both of our girls out together.  It was becoming more and more evident that the small things really are what matters, take away everything else, and we still have the memories and the experiences with our family, you cant take those away from us.

day 2

Saturday October 30, 2010


Someone from the "Transport" department escorted us and our belongings from our home in the ER to what would be our new home on the 8th Floor.  We later learned the 8th Floor is dedicated mostly to Chemotherapy patients, though due to a lack of space, we were placed in the "Burn Unit" wing.  Our room was the last door on the right at the very end of the hall.  At 3am, we "settled" in, not quite knowing what had happened to us over the past few hours, or what was about to happen in the next few days.  One of the nurses on night shift introduced herself to us, and after taking Evie's vitals, explained that we should try and rest, we would be seeing more doctors in the morning.  I'm not really sure how, with all that was going through our minds, but it wasnt long before we were asleep....Paul on a blanket on the floor, and Evie and I  on the parent bed in our room (despite the Hospital Sleep Safe rules against sleeping with babies under 2).  This would be not only Evie's, but my first hospital stay as well.


It's strange how quickly you become used to the sounds and routines at a Hospital.  Nurses come around every hour to check on you, take vitals, help any way they can, or as the case may be, point out that I am not allowed to cradle my baby in bed with me.  They mean well, they are just doing their job - but I still didnt listen.  I held onto Evie that night tighter than I ever had before.  I was acutely aware of how precious she was, like holding her for the first time all over again.


Despite remembering that first day so well, the next few are somewhat of a blur.  I know we met with many doctors; Neuro-Surgeons, Oncologists, Endocrinologists, Opthamologists...basically entire teams of doctors, residents, fellows...it was a lot to take in.  As ridiculous as it sounds, we definitely used Grey's Anatomy as a background to figure out who the hell everyone was and how they ranked in the grand scheme of things.  For the most part everyone was very nice, but there was a clear air of sensitivity when anyone came and talked to us...well aside from the Neuro-Surgeons - they were all business.  We woke up that Saturday morning to a team of about 8 standing in our rooms, hovering over us.  Before I could even sit up in my bed they had begun their process.  They discussed Evelyn's diagnosis, her age, her presenting symptom, and her current condition.  It was surreal.  More talking at us than to us, they were in and out within 10 minutes.  They would be back the next day to see us again.  And as quick as they came, they were gone, we were alone, it was quiet.


Now wide awake, Paul and I looked at each other.  We had been informed by our nurse that we were going to be seen by a few more doctors today.  First, an Oncologist.  He explained what exactly was going on with Evie.  Her tumour was in her brain, and it's placement was putting pressure on both her Optic Nerve and her hypothalamus.  The pressure is what was causing her nystagmus.  There is concern about her hypothalamus, the gland responsible for all hormone development.  Though it was hard to process all of the information he was giving us, we tried.  Her tumour would likely be treated with Chemotherapy, though it was not cancerous.  Her tumour is benign, slow growing.  The cause is unknown.  There is no link to prenatal care, or lack thereof.  In fact, her tumour would not even have been the result of poor choices, nutrition, drinking or smoking during pregnancy (not that those were even a factor with my pregnancy).  They are unable to tell when exactly the tumour developed; possibly in utero.  Evie's tumour is rare.  It is also rare in children as young as she is, usually presenting later in childhood.   It wasnt until he finally said the words that I actually cried.  "This is serious, but it is not going to kill her.  Her tumour is not life threatening.  Our biggest concern is your daughter's vision".  It was such a sense of relief, I lost it.  Later on that afternoon the Endocrinology team arrived, they introduced themselves, asked some preliminary questions, took some samples for testing and said they would be checking in again soon.


At that point Paul and I were long overdue with some phone calls home.  Holding back tears, he called our parents and close friends.  Probably some of the hardest phone calls we have ever made.  Every phone call felt like we were breaking people's hearts.  The words we had to speak, so devastating.  So unimaginable.  Not knowing very much, it was hard to listen and answer questions from others.  Every question they had, we had as well....we all desperately lacked and wanted answers.  I will never forget how hard that day was.  I wouldnt say the shock was over, but it was the beginning of us having to deal with the reality of the situation.


The hospital granted us leave that night.  Informing us that there was nothing they would be doing right away, a plan of action would be made early in the work week.  There was no reason why we couldnt go home and sleep in our own beds tonight.  Discharge papers in hand, we were happy to head home....to have something normal, to forget for a minute what we were about to get ourselves into.  Home sweet home, it had never looked so good.

breaking the news to the masses

Hello Friends, 


On Friday October 29th Evelyn was taken to the Emergency Room at Sick Kids Hospital.  She was displaying rotatory nystagmus - a slight twitching of her left eye.  After hours in the ER, multiple blood tests and an MRI, we were told that Evie has a tumor growing on her brain (to be clear, this is not brain cancer, nor a brain tumor, but a growth on her brain).  This tumor is classified as benign, however because of the unique placement, pressing on her optic nerve, alongside the hypothalamus, it was affecting other areas of the brain - hence the twitching.  She has been admitted to Sick Kids and is currently a patient in the Haemotology / Oncology Unit.  

Evie's tumor has affected several areas and as a result she is currently being seen by a large group of doctors including Neurology (as the tumor is on her brain), Opthamology (as the tumor is putting pressure on her optic nerve), Endocrinology (as it is close to the hypothalamus) and Oncology (as the best option of treatment is Chemotherapy).  

To date we know that surgery and radiation therapy have been ruled as they are both considered to be too risky given a) the placement of the tumor, and b) Evie's age.  After being checked out by the Opthamology dept. we know that despite the pressure on her optic nerve, and the twitch she is displaying, the nerves in her eyes have not yet been damaged.  The endocrinology team are currently testing to see if there are any hormonal concerns, but have told us today that almost any issue can be treated with some form of medication.  

Evie's treatment will be a low dose / high frequency chemotherapy.  Though we are currently In Patients residing at Sick Kids, we are told that once her treatment begins we will likely become out patients and return to the hospital once a week for her chemotherapy.  Over the next weeks, months and years (to be expected) we will have regular check ins with all four departments, including frequent MRI's to determine the status of her condition.  

As for Isabelle - we want everyone to know that she is ok.  She has been given very limited information on the situation, knowing at this point only that Evie is at the hospital to get her eye fixed.  We will be telling her more as we go along, but are using discretion - please respect our wishes her if and when you are  talking to her.  

The past few days have been extremely difficult, however we are slowly learning how to deal with our situation.  We want everyone to know that Evie is not actually in any pain and in fact her demeanor has not changed at all - she is a happy, smiling, laughing, sometimes fussy, often curious 6 1/2 month old.  We are thankful that she is unaware and has cooperated with all the nurses and doctors checking in on her as we have been told we have a long road ahead of us.  In a matter of days our lives have been changed forever, but we recognize that we are also lucky to have caught her symptom so quickly and that we are fortunate enough to have access to one of the best facilities - Evie really is in the best place she could be right now, she has the best people looking out for her and taking care of her.  We are taking things day by day and would advise everyone else to do the same.  We need to focus on the good things we hear, no matter how small they may be, and we need to worry only about the next step in the process - anything else is simply to hard.    

One last note: As for communication, I am emailing on purpose.  We have had so many meetings with doctors and so many phone calls relaying information that we are already exhausted trying to keep people up to date.  We understand everyone is concerned and we are happy to email an update every week or so to anyone that wishes to be included on that list.  

Please help us stay strong for our little girl, she needs all the support she can get - and so do we.  

Paul and Kristine

the backstory...

Tuesday April 13, 2010

Once she decided she was ready, it didnt take long for her to arrive.  Evelyn Marie Laplante was born at 11:23am, on a beautiful Spring morning, in the comfort of our own bedroom, surrounded by her loving family and amazing midwives.  She was a beautiful baby, a respectable 7lbs1ounce, a full 21inches of arms and legs.  She instantly became my proudest accomplishment, and the love of all of our lives.  I can still see the proud grins not only Paul's face, but on Isabelle's as she was finally able to declare herself a "Big Sister".  For the first six months of her life, I readjusted, and enjoyed watching not only her grow, but how our family grew together.  From the moment she arrived it seemed as though this was how it was supposed to be, and all was perfect.

Fast forward 6 1/2 months...

On October 28th, Paul called me into the bathroom while he was giving Evie her bath.  He asked me if I had noticed her eye moving.  As I looked closer, I saw that her left eye seemed to be shaking.  Though we had no explanation for it, we knew it wasnt a "normal" behaviour.  I then did what NOBODY should do; I Googled.  What I came up with was a plethora of possible medical issues, none of them very promising.  I had sufficiently scared myself, and as I tend to worry and panic, I quickly closed my laptop and decided to call Telehealth.  10 minutes of Q&A with an RN and I was advised to take Evie to the Doctor in the morning.  As any parent knows, when you fear something is not right, it makes for a long and difficult night. 

As Paul headed off to work, I took Isabelle to school, and then headed to the clinic with Evie.  Thedoctor checked her out thoroughly and then left for quite sometime. When he finally returned, he explained the movement of her eyesas "nystagmus", but did not why it was happening,and was not comfortable making a diagnosis without further testing.  He handed me a referral and asked if we were able to head to the ER at SickKids.  We went immediately, arriving at 10am thatmorning.  Though I knew something was wrong, I had no idea what the next 17 hours had in store for us. 

My Mom came with me and I had called Paul at work and told him to meet methere as soon as possible.  We were admitted into theER and given a room.  Various doctors and nurses would come in and out,each time checking Evelyn's vitals and asking, "What have you beentold?".  This became terribly frustrating as we quickly learned thatwe weren't being told anything.  In the back of our heads, we totally understood that theycouldn't speak out of turn, they needed to have all the facts first, but as aparent, it's just a difficult place to be.  

At around 10pm Evie was taken for her first MRI.  It was the first "break" Paul and I had since arriving 12 hours earlier.  Despite thelong day, and the MRI, we still didn't fully grasp the seriousness of what wasgoing on.  We knew to be worried, but we just didn't know what to think,we were just naive.  We came back to the ER, and shortlyafter a new doctor arrived to speak to us.  She confused me greatly as shetold me another team of doctors would be down to speak to us soon, but wantedus to know they had found "something".  She then said it was okto be angry/upset/mad at her.  I was upset, and I believe I cried at first, but I didn't know what she meant, what had they found?  

As we again waited, I held my baby in my arms, and we all slept.  At 3am, the sliding door to our room opened, and adoctor came in.  He explained the "something" was a "growth" on Evie's brain, and asked if we had ever heard of Neurofibromytosis.  We shook our heads no, and were then admitted and moved to an In Patient room on the 8th floor.