Email # 9

Hi everyone,

I feel like I say this everytime, but it really has been a while since I last emailed an update.  I'd like everyone to know that though we do try to communicate what's happening, you are always welcome to ask us at any point as well.  We 100% do not mind talking about it, to anyone that is interested / curious about our situation.  The truth of the matter is, the first few months since the last update in February were uneventful.  We were also aware that we would be having appointments and test results coming up, and decided to wait until we had something to say...

 

SO...we were between appointments with Endocrinology and Opthamology, weekly treatments were going well, and we were anticipating MRI #7 - scheduled for May 2012. Well......the MRI got pushed back, and pushed back, and pushed back....for no other reason than scheduling - sometimes these things take time.  So we waited, and in the time before the MRI came we met with the other departments and got the all clear - things are looking really good with her hormones, and her vision is on track (but will be monitored closely).  However, when we finally had our MRI, the results were not quite what we had been hoping, nor what we had expected.  Paul and I definitely needed to take a bit of time to ourselves, which will also explain the delay in updates.  Please keep in mind, that though it has been two months since her MRI, and we are ok, this was probably the worst we had felt, and is the hardest Evie Update I have had to write since the very first one I sent out, almost 2 years ago. 

On July 10th Evie had her 7th MRI, and three days later we recieved the results.  As I sat in the very familiar conference room in the Blue Pod, I listened as one of our four Neuro-Oncologist's explained that Evie's tumour had grown, and was no longer being classified as stable (to explain: Evie's last two MRI's in Feb.'12 and Nov.'11 were "stable" - however upon closer examination, the team concluded that in a year long period, since Aug.'11, her tumour had still grown approximately 5% in mass.....which means that even though a small growth over a year long period, a growth none the less = not as "stable" as they thought).  What was just as upsetting was that the team had not yet come to a decision about what the results would mean for the future of Evie's treatment.  The following two Fridays Paul, Evelyn and I made our way to SickKids for our scheduled treatment appointments, but also to have meetings with the Doctors.  On July 27th we were told that Evie's scheduled chemo treatment that day would be her last for a little while.  The plan her team has come up with is as follows:

- As of July 27th, Evie has been on a 3 month hiatus from treatment. 
This means that we have not been going to the hospital each week, and aside from a routine Port Flush (simply cleaning out her port-a-cath line to ensure no infection) on September 7th, we are on this break until approximately November. 
- Evie will have her 8th MRI around the end of the 3 month hiatus. 
This has not yet been scheduled, but the plan is that it will be scheduled on time, sometime near the end of October...experience tells me that it will likely end up being sometime in November.  Either way, Evie will go back to SickKids on October 19th for another Port Flush.     
- Evie will begin a new chemotherapy protocol based on the results of her 8th MRI. 
There is no definite plan at the moment, but Paul and I have been told to prepare for a more toxic approach to Evie's treatment.  Whichever protocol is decided, we are likley looking at another year of treatments.  

 

When I spoke with her doctor last Friday (at he check up for Port Flush), he reassured me that they are not making any decisions just yet, and are looking into chemotherapy options for Evelyn. Upon his assessment of her that day, he said he is happy to see her progressing and meeting all of her milestones. She was a charmer, she spoke to him, sang songs and answered his questions, she showed him how she gives Mommy her needle, and even made him wait as she announced that she had to go pee.....all in all, it was a good check up.  We're currently half way through our "chemo break".  In all honesty, it was a big adjustment to make for us...not going every week.  That might sound crazy, but we have found comfort and reassurance in our weekly visits.  It is a part of our routine, and to be honest, Evie enjoys a lot about her days there.  Paul and I were concerned abou her memory + age = too quickly forgetting and as a result, not cooperating with the process.  We were wrong.  She was happy to go, happy to see some familiar faces, she made no fuss about her needle - she did great.  And now Evie has a new routine to keep her busy.....daycare!

 

The news of Evie's tumour growing (again), and then hearing that we were going to be taking her for treatments for at least another year, is what made everything so difficult for Paul and I. We really did expect better news. We really did feel blindsighted by what we had been told. The protocol explained to us is very different from what we are used to, and the timeline is essentially the same as what we had originally heard almost 2 years ago. It felt almost as if we had made no progress. It was a big slap in the face. But now that the dust has cleared, and we've had time to be upset, and time to re-evaluate, and time to think, we can once again see the bigger picture. Everything being done is being done in her best interest, and if something isnt working, well then we should stop and try something else, keep looking for something that will work. PLUS: Evie has been doing so well - and has changed a lot in the timeframe the doctors had been specifically looking at (Aug.'11 - now). She had started a new (somewhat experimental) protocol last September, and since then she started walking, talking, gaining/maintaining weight. She learned to talk, her hair has grown immensly currently hitting her shoulders in wispy blond curls. Today she is a typical 2 year old, running around, singing songs, demanding jelly beans (but she "no like the coffee ones"), brushing her teeth constantly, using the toilet, and always asking people if she can give them their needle (Ok, I know that's strange to most of you, but for a kid who get's a needle almost every week, it's pretty normal, and pretty cute). 

 

In other news, Isabelle has turned 8 and started third grade, and Paul is back to school for a few weeks as well!  Both are loving school and the routine it is providing....both have already complained to me about homework!

 

I will be sure to keep everyone updated as the next few weeks/months should be giving us some more insight into Evie's treatment. 

 

Take care, and lots of love,

 

Paul and Kristine

ps.  WE ALSO WANT TO SAY A BIG, HUGE THANK YOU TO EVIE'S TEAM!  To all of you who participated in Meagans Walk this past May, we thank you.  Our team grew from a mere 5 people, to well over 25, and we managed to raise well over $6,055.00!  More so, we were so honoured to have such a great group of friends and family walking with us, and not only supporting us, but all the other families with children with brain tumours.  I am proud to have been walking beside each of you this year, and proud to have been walking for Evie and Stella.  I hope that we can continue walking with each of you again next year.    Oh, and no, I have not got the picture of our team yet.......gah!

Following the rules

For 21 months now I've been following the rules. 

I let go of the freedoms given to many new Moms on Maternity Leave.
In fear of getting too sick, I largely stopped taking my baby to playgroups and activities.
I let my life revolve around doctors, appointments, and chemotherapy.
I woke up early every Friday and packed snacks, diapers, toys, and books. 
I religiously kept charts of height, weight and blood counts. 
For six months, as was required, I kept a log of all food consumed, including any fattening agents (butter, formula) mixed in. 
I paid over $1,500.00 to park our car, and likely consumed the same amount in Tea and Timbits. 
I have spent my Fridays in a small, albeit, private room. 
I eventually chose to put my career on pause.
I depended on the help of my family endlessly.
I arrived on time, if not early for every appointment.
I brought my entire medical binder everywhere.

Every rule I was given, I followed....and it's been no use.  Today the rules have changed, or perhaps it's just that I've been playing the wrong game all along. 

It doesnt matter how good I've been, how good she's been, how good we've all been.  Sometimes it just doesnt work out in your favour.  There's no reason in particular, I mean, if there were, then someone should be able to tell me why it happened in the first place.  I'm tired of playing.  I want to flip the board upside down and yell at someone, tell them they have cheated me. 

Today, every fear that I had so long ago has flooded back to me.  I am feeling overwhelmed.  I think it's probably worse than the first time.  I know more now.  I've been doing this for a long time.  We've been doing this for a long time.  She's been doing this for a long time.  Too long.  Longer than anyone, doctors included, thought she would. 

Today I let myself react the way I felt I couldnt so long ago.  I cried.  I shut everyone out.  I ignored as many people as possible.   I was irrational.  I was angry.  I was sad.  I was confused.  I was emotional.  I was selfish.  And it felt really, really good.  It felt real.

The dilemma I'm having is that this is real - it's not a game.  At the end of the day, I essentially have to follow the rules, but does that mean that I am going to get the results I want?  Absolutely not.

Not so alone.

Saturday May 12, 2012 - Meagan's Walk

Today was the 11th annual Meagan's Walk, supporting Pediatric Brain Tumour Reasearch.  For those of you that either have found this blog, or know us personally, you are well aware of this event, however for anyone else, Meagan's Walk is a 5km walk that begins at Ontario Place, and weaves its way through the downtown streets of Toronto, finishing at SickKids Hospital.  As walkers arrive at the finsih line, they line the four streets surrounding the hospital, hold hands, and symbolically hug the building.  The giant hug is followed up by ceremonial speeches from participating families, sponsors and the founder, Denise Bebenek, and continues with a giant BBQ. 

This year, our family walked.  We walked for our daughter, for Evie's Team.  We walked in support of all the families with children that have been diagnosed with brain tumours, that have lost children diagnosed with brain tumours.  We walked alongside forty of our friends and family.  Evie's Team grew eight times bigger this year.  Evie's Team raised six times more than last year.  Evie's Team represented! 

When I walked in Meagan's Walk last year, I felt very overwhelmed.  It is a very surreal thing, to realize that your connection to this child, whichever child, who is affected by a brain tumour.....is simply one of many.  They may be the only one in your life, but they are not alone in this.  I guess that can be read in a somewhat negative way, but it's not what I mean.  I am not trying to simplify, or take away from how special these little ones are....but I more so want everyone else to realize that it is a far too common thing.  Last year, depsite not knowing anyone else at the walk, I finally felt like we were where we belonged.  I felt like for once, we were not the outsiders.  This year, as I watched Evie's Team hug the hospital, and saw the tears in their eyes, the smiles and sadness on their faces, I felt like maybe they got it.  They were the odd ones out, surrounded by people like me.  Still belonging, because they all share one thing in common, but still a little like they didnt.  Perhaps a little like I have been feeling for the past 19 months.

I'd like to think that all of our team members had a wonderful day, one that they will remember fondly, one that they will realize is helping and changing the future.  I had a really great day.  I got to look around and see the faces of so many people that love us.  I got to meet with our team, combine our efforts and raise a big chunk of cash...$6,055.00!!!!  I got to hold hands with my best friends, and look together upon the Hospital in support of all the families within.  I got to stand, surrounded by "my people" and remember that we are not alone, at least not today. 

all but one

A little while ago I noted that the more time that passed, the less frequently we seem to get support from our community.  In the beginning, there were lots of visits and phone calls, offerings of food and general help.  I would send an "Evie Update" and within minutes would have replies flooding my inbox, my BlackBerry beeping as each message came through.  I would always read each persons message immediately, excited and touched by the outpouring of kindness and support.  Over the past 18 months, this has faded.  We are not in need of dinners anymore, and yes we still get phone calls from our friends, but the calls are not about Evie, just about life.  Thirty plus emails became ten to fifteen, which then became four or five. 


It has been four days since I sent out my last email update about Evie's progress.  In four days I have had one reply - and though it was an incredibly sweet and thoughtful email, it came as a result of me noting that it was the first time that I did not have any replies. 


Dont get me wrong, I get it.  This whole thing has been normalized, it happens over time.  I know that everyone still wants to know how she is doing, and are satisfied to read the emails, absorb the information, and then move on with the next thing on their to do list.  It's the same way that I make plans for tea and playdates "as soon as we're done with the chemo appointment".  I know it has nothing to do with a lack of caring. 


I suppose even this far down the road, replies give a bit of validation.  They make the effort taken to write the emails, to include the little anecdotes about Evie growing (and not just all those appointments), worth it.  Sometimes it's just nice to hear from someone, and to get that reminder...


Someone said to me not so long ago, "I just worry about asking about Evie because I dont know if you want to talk about it".  Fair enough.  For the record, Paul and I have no problem talking about it - but we in fact worry about always talking about Evie and upsetting others.  Talking about it is one thing, clearly nobody ever wants to make anyone else uncomfortable, its a touchy topic and for some people, it's difficult to deal with and to hear about.  BUT, when I sit down and write an email, it is my way of opening up the flood gates.  It is my way of starting that communication about Evie and all that surrounds her.  I am talking about it, and inviting you to listen, and ask questions, and talk back.  I'm doing the hard part, initiating....a little reciprication can go a long way. 


Just another one of those things....you dont realize how much you need something, until you stop getting it. 


To the one person that did reply, no matter what got them to do it, thank you.  I thank you so much, because I know that you love  us, and care about us, and that you sent your reply not just for yourself, but as a reminder to us that everyone still cares. 

Email # 8

Another email long overdue...

It's St.Patrick's Day...which means that since our last email update we have enjoyed Christmas, New Year's Eve and Day, Groundhog Day and Valentines Day....not to mention countless birthday celebrations, school events/activities/breaks/registrations, and of course, wedding planning.  Overwhelming would be a great word to describe the past three and a half months!

Evie has had appointments with each of her caring departments in that time as well.  In December we had a check up with Endocrinology, who again confirmed that hormone wise she is developing well and there are currently no concerns.  Early January brought an Opthamology check up, and happily her vision also remains on track.  As Evelyn gets older the process of vision testing changes, and they are able to do a more thorough exam.  This is great because it gives the doctors more information to go on to actually confirm results.  Evie will also be able to better communicate what she can/cannot see, etc.  However, I imagine the whole eye drop part will get a little trickier as she not only grows stronger, but also a will to resist!

MRI #6 was on February 6th. As usual, Paul had booked the day to come with me and Evie to Sick Kids.  MRI's remain the one thing I really dont want to do on my own.  It's a lot of waiting, and it's  also the only appointment where I ever have to leave her.  I'm thankful that Paul is able to come, and that his work is so understanding with our situation.  Despite my own discomfort, Evie goes through the process like a pro, and a short while after we drop her off, we get to meet her, all drugged and drowsy in the Recovery room.  The 6th was a Monday, and though everyone says "No news is good news"......Paul and I would much rather a phone call with results.  It never came, and I went to our weekly Friday chemo appointment looking for answers...and got them.  Dr. Bartels confirmed that Evie's tumour is stable, again.  This means there has been no growth throughout the last two scans, essentially a six month period.  This is the positive news.  

It would appear as though Evie's tumour stabilizing coincides with when her treatment plan last changed - which is great.  The new drug that was added however, was only supposed to be given short term.  We were also under the impression that Evelyn was still on a 70 week protocol, which would mean her end date would be the end of March (now). This however is not the case.  We currently have no set end date for chemo.  Our guess it that when her team changed her treatment last september, they established that Evelyn is not necessarily on a protocol anymore.  Paul and I didnt realize this, we assumed we were continuing on, but in retrospect, it makes sense....change the drug, change the plan.  We wish we put that together a little sooner.  So, as far as chemo goes, our plan is now more of a day by day, or MRI by MRI.  Doctors are happy with the results right now, and are hoping to see further stabilization, or better in the months to come.   This has been a hard concept for me to accept...I very much enjoy routine, and timelines.  However, I am now at peace with the idea of "not knowing".  Think about it, there's a lot more we dont know about what is going to happen in our lives, than what we do know....Paul and I now have no countdown, no pressure.  We go through chemo one week at a time, one scan at a time, and in the days between, are enjoying the fact that Evelyn is thriving, and happy.  We do still have moments of anger and frustration, but that's ok...we are confident that we are doing what we need to do, and what is best for our daughter long term....and if that takes a bit more time, so be it - she's worth it. 

One more thing....I wanted to invite everyone to participate in Meagan's Walk 2012.  "Evie's Team" did great last year, with only 5 members and two days to fundraise, we raised over $1,200.00!  Incredible.  Meagan's Walk supports Paediatric Brian Tumour Reasearch, and happens every year, usually on Mothers Day.  It's a 5km walk, from Ontario Place to SickKids Hospital, and ends with a big BBQ/Party!  Registration is not yet open, but I will  be letting everyone know when it is......we'd love to see "Evie's Team" grow!  This year's walk will be on Saturday May 12th.   

We hope you are all well, and again thank you for all your kind words, thoughts and prayers.


Paul & Kristine

Sixty going on Seventy, Seventy going on...

FRIDAY JANUARY 20, 2012

I woke up this morning, and for a Friday, I was pretty happy....I'd even say I was borderline excited.  Today is dose number sixty.  Sixty doses of chemotherapy.  Sixty.  It's unbelievable to me.  In the days following Evie's diagnosis, this number was thrown around a lot.  She would endure a sixty week treatment plan, as per the protocol.  Evie would go through sixty doses (not weeks) of chemotherapy.  It was such a big number, such a long time such a fast forward through her babyhood.  When you have children, in one way you do think about their future.  For us, it was more a hope, a dream, a glimpse into their growing up, first words, steps, birthdays, graduation, College/University, love...it was a lot of things that I thought about almost immediatley,without even knowing I was having those thoughts.  We thought about the future in the long term.  We thought about it in the that you think about your own life, in particular when you're younger: a very long period of time in which you are going to do/accomplish/succeed at so many different things...It never occured to us that the future in the short term would be what shocked and scared us the most. 

All of a sudden, we were looking ahead to the future, but the future was not all that we had hoped and dreamed for.  All of a sudden, the future was so short...and yet so long.  All of a sudden, everything about the next 60 weeks of our lives was going to be different than what we anticipated.  All of a sudden, a little fourteen pound, bald baby girl was fast forwarding to 2 years old.  All of a sudden, we were terrified, overwhelmed, ignorant, deeply saddened. 

The "future" that was thrust upon us on October 29, 2010 was a much different future than we anticipated. Now to some, sixty weeks might not seem so bad....but it is a pretty long time.  It's more than a year...and not just by a little.  Even though time seems to pass faster and faster as we grow older, the thought of sixty weeks felt like forever to us.  As it happens, sixty weeks is a long time for a six month old too.   Evelyn had time to grow up a lot.  She started out as baby who had just learned to sit up on her own, and taste solid foods.  Sixty weeks later she is a walking, talking toddler.  In sixty weeks she has grown pounds, inches, teeth and a mass of blonde slightly curly hair.  She has learned kindness and attitude.  She can communicate her needs, and often does so politely.  She is compassionate and loving.  She is a clown, and loves laughing and making others giggle too.  She pushes her luck and stomps her feet.  She wants it done her way, on her own....except sometimes when she just needs Mommy.  She is thoughtful, and inquisitive, and though is not yet at the "Why" stage, we know it's really only a matter of time....for now, she simply insists on telling me the same facts over and over again, ie.  "Daddy work".  She is nothing short of an awesome little girl. 

Ya know how they say a watched pot never boils? That's kind of what the first sixty weeks felt like.  To Paul and I, the weeks seemed to drag on, it took forever to hit week 15, 25, 40, and finally week 60.  The main problem is that in our struggle to adapt and wait out the sixty week timeline, the timeline itself lengthened.  Sixty weeks became seventy weeks, and then seventy weeks became, well, an indefinite period of time.  We dont know how many weeks we have left, there is no magic number to look forward to or to count down.  It all seemed to change in an instant, we read the final chapter and then saw the words "TO BE CONTINUED".  I cant speak for Paul, though often in this blog I probably do, but I felt angry and frustrated, and well, cheated.  How can Evie go through so much, she's just a little girl...she was just a little baby.  We sat on this information for a little while, let it torment us, and then we realized that it didnt have to be so horrible.  No part of me wants to keep going to chemo every Friday, but if we dont know when we will end, at least we wont have the opportunity of being let down in case things change, again. 

Babies dont watch pots, they play, and laugh and cause trouble.  When you are unaware of the time period, like a baby is, it is a much different experience.  In fact, arguably, you get to experience...more.  That pot, stop watching it.  FInd something to do in the meantime, anything.  When the pot is boils, it wont be in secret - you'll figure it out, and move on to the next step, whatever it may be. 

the ugly truth

I dont like to tell people this....


But I'm going to because I find blogging to be therapeutic.  It's a much needed outlet.  It's a safe place. A place where I can be honest.  Perhaps because I have yet to let anyone in, never given out the url.  I find I can easily write about how I feel and it doesnt burden anyone.  I dont need to censor my reality to ensure others are comfortable.  So in this post I wont.  And if you're not able to handle it....well tough, because I'm not given a choice.  So here goes, I'm going to tell you.


In the past few months chemo has become awful.  I hate going, and it is by far the worst part of my day, if not week.  I dread it, and often find myself already anxious on a Thursday night, with my anxiety increasing exponentially by the time I arrive at SickKids Friday morning.  I bought a homeopathic anxiety reliever with the intention of giving it to Evelyn to ease her nerves before access....and often find myself wondering if it would do me any good to sneak some myself.
I guess to be fair, the real source of my anxiety is the port access, and not the actual chemo.  For those unsure of what I'm talking about I'll refresh your memory.  A port is a small device that was inserted into Evie's chest.  It facilitates any IV medications she needs by having a needle inserted into the port, and then the meds run through the tubing directly into her bloodstream.  It is helpful when you need to have longterm IV drugs.  In order for her port to be accessed, we need to first freeze the area, so that she doesnt actually feel the needle.  For that we use an EMLA patch, which we put on at home before we pack up.  There was a time, maybe 7 or 8 months ago when Evie would find the EMLA patches in my medical bag and place them on her chest.  She also used to help the nurses take them off.  They are sticky like a bandaid, but she never minded the pulling off part.  Now she pulls away.  As soon as I tell her we need to put on her patch, she turns and cries.  She holds her shirt down, stiffens her arms down her side so I cant even get her shirt off.  Once I manage to get it in place, I need to re-cloth her, suit her up in outside gear so she forgets about it and doesnt try to remove it. 


Once we're there she has forgotten all about the patch, and we're seemingly in the clear.  At least until it comes time to take it off.  This is where it gets awful.  She knows as soon as I try and take her shirt off.  Now she desperatly wants to keep it on.  Her arms re-stiffen, and she starts to cry (again).  It gets worse as soon as she sees the nurse.  Decked out in her bright blue coveralls, we both put our masks on and take a breath.  They have learned.  We all know what to expect. 


I remember what it was like before.  It was easy.  I used to tell people, "It's really not that bad".  And I wasnt lying.  I used to sit with a tiny little baby on my lap, I would hold her hands in my hands, as she would gently lean back on me and watch as the nurse sterilized her port area (twice), and would then quickly jab the butterfly like needle into her port.  It really doesnt take very long.  Once inserted, the outer tubing is connected to the IV line, and depending on the week (that I have dubbed "short" or "long"), they take blood and administer her medication.  These days the few minutes it takes seem like hours.  I still sit with her on my lap, but the once tiny little baby is now a full on toddler, all arms and legs hanging over the side of me.  Instead of quietly watching the nurse she makes her discomfort, her disapproval, her frustration, her anger, her fear known....quite loudly.    Instead of holding hands, I am using all of my strength to hold her down.  As she sits on my lap, I cross my right leg over her little legs to firmly hold them down.  I wrap my left arm around her chest in an attempt to hold down her arms and keep them from smacking her nurses and pulling out her line.  I use my right hand to hold her head against my chest, looking off to one side.  The goal is that I will be able to hold her firmly in place long enough for the nurse to get her accessed and either hooked up to her IV or get her medication in and the needle back out again. 


That is the goal, but we dont always get there easily.  Evie doesnt make it easy, and has a way of finding the strength to rival mine.  She will arche her back at the wrong (or right?) time.  She can move her little limbs quickly making it hazardous for anyone closeby.  I personally have been smacked, kicked and headbutted.  The nurses....well, they get their fair share as well. 


As if having to hold her down wasnt bad enough, I have to listen to her cry, and scream, and eventually tire herself out, but still cry.  Her face is red and she looks tired.  I wonder what she is thinking.  Her skin is clammy, and she looks at me with sadness in her eyes.  I so badly want her to know that I would do anything to make it better, but that I need to let this happen.  I'm worried she doesnt know.  I'm worried that she is looking at me, confused and frustrated, and as upset with me as she is with the needle itself.  She must be scared.  Why isnt my Mama helping me?  Why is she standing there, idle. 


Kids are not rational people.  Kids are anything but.  They experience emotions quickly.  They are instantly happy, or sad, angry, or excited.  It sweeps over them like a tidal wave.  They dont use what adults call common sense.  They expect to be rewarded first, not second.  They dont understand why they need to brush their teeth or make their bed, even if they do it every single day.  They are selfish.  They are unaware.  They are unassuming.  They live in the here and now.  It's hard to remember a time when life was that simple...when I thought only so far ahead as the next activity.  Right now my calendar is booked weeks and weeks in the future....this concept is lost on my 7 year old....my 1 year old has absolutley no clue.  This gives me comfort, but also makes me upset.  Evie knows in the moment that I am doing nothing. I am letting her down.  In the long run, and even minutes later, she doesnt remember at all. 


The thought of letting her down ever, even for a minute, is heartbreaking.  I just want to do right by her.  I want her to know that the choices we are making are for her.  They are in the moment.  We are doing what we need to do right now, to make sure she is here, with us, for a long time to come.  I dont know if they are the right choices, but I also know that we dont have many options in front of us.  We're doing what we think is best....and that's all any parent can do I guess.