Evie Update #10

Hello again,

Sadly I am sending out this update with a bit of bad news. I know that many of you are aware of the whirlwind that has been the past 5 days, but I felt like it was important to follow up, and give everyone a bit of an update….and to be honest, it will help us remember what we’ve told who. So, best to start at the beginning…

*In Update #9 we pointed out that Evie's tumour had grown, and she was being given a 12 week rest period from chemo to give her body a break. She would have routine check ups and then would be given her next MRI at the end of the 12 weeks - October 21.*

As of October 4^thEvie has been feeling a little off. We noticed that with each day that passed, she was a bit more tired. As the days went on, we watched as she began to sleep more and more, her naps became longer and her bedtime earlier. When she was awake, she was happy for the most part, but fairly quiet. After a week of sleepiness, I decided that I was uncomfortable, nothing was overly bad, but something wasnt right. I made an appointment to bring Evelyn in to see her Neuro-Onc team at SickKids. That Friday (October 14^th) she was assessed, but with no other symptoms, it was assumed that she likely had something viral that she was fighting off. I left feeling ok, and figured she would be getting better over the weekend. That however wasn’t the case. Paul and I watched Evie sleep most of the weekend away. By Monday morning I had decided that SickKids had only really ruled out her tumour as a problem, but not diagnosed anything (which isn’t really their job anyway). I took her to the walk in clinic as I was unable to secure an appointment with her family doctor. There she was checked out, and found to have what appeared to be an ear infection. By Wednesday we had seen no change in Evelyn. In fact, she appeared to be sleeping more. I called SickKids, and they suggested we follow up with the Family doctor, which we did on Thursday. Our Family doctor ordered blood work, but once again, with Evie showing no other symptoms, and any sign of infection had ceased due to the antibiotics she had been given, it was difficult to assess. By evening Paul and I were getting a bit anxious. Something just wasn’t right and we didn’t know what to do. Evie went to bed at 6:30pm that night, and when I left for work at 8:30am she hardly stirred. I called Paul from work and told him I wanted her to go to the ER at SickKids. Evie was still asleep, and we were both frustrated and scared. I called her Contact Nurse at SickKids and simply informed her that we intended to bring her to ER.

We arrived at the ER by 1pm, and at 5pm on Friday we were told that Evie was going to get a CT scan. Her routine MRI was already scheduled for Sunday. We took Evie to her CT –which she did without sedation….because she’s so awesome….and then headed to our room, as we were to be admitted. Within 30 minutes we were being talked to by a NeuroSurgery Resident. She explained that Evie’s CT showed excess spinal fluid built up in her brain, Hydrocephalus. The only way to relieve the pressure was to operate and insert a shunt. This procedure was done immediately, and by 9:30pm we were meeting Evie in the Recovery Room. We were told that the shunt would give the fluid a passageway to drain, relieving pressure, which would basically put an end to the constant sleeping.

Saturday and Sunday however showed little change. Evie had an Xray (to confirm the shunt was properly placed – which it was), and her MRI (to check status of tumour, but would also display if shunt was draining fluid properly – unfortunately her tumour had grown again, fluid was still draining). Aside from that, her weekend was very quiet, she slept a lot, ate and drink very little. Her awake periods were not much better than before her surgery. On Monday a second CT was done to see if perhaps the shunt had stopped working again– they expected Evie to be recovering better by now. Once again, we got results quickly, but they were not good. The shunt was working fine, so it could no longer be blamed for the sleeping (but was still 100% necessary to relieve the Hydrocephalus). Her sleeping was now believed to be a result of her tumour growing again. It looks like the tumour grew, and blocked the passage for the spinal fluid (causing Hydrocephalus). The MRI had shown growth, but also looked like the cells inside the tumour, at the centre had died off. This may mean that Chemotherapy was more successful than originally thought….her tumour grew, but something was killing those cells as well.

It was decided this morning that even though chemo had likely killed something, nobody wanted to wait to see if a new protocol would continue that process. Evie is scheduled to have surgery tomorrow morning, and the plan is that the “dead” parts of her tumour will be removed. As many of you will remember, from the day we were diagnosed, surgery was not supposed to be an option for Evie’s tumour. It was always said, it would be the step taken only if it became necessary, a “lesser of two evils”. This is where we are. Evie cannot simply sleep her days away while a tumour may/may not continue to grow, while more chemotherapy may/may not work. Surgery is risky and it is scary, but right now, it is the best way to relieve the pressure and help her. This is what Evelyn needs.

Today we met with her surgical team. They have an impressive set of credentials, and we trust them. We believe that we are in the best place we can be, and that we are getting the care Evie needs. We felt like it was important to get this information out to everyone tonight, on the eve of this very big, very important surgery, because we need you. There is much to be said about the power of love, of positivity, and of healing energy. Tomorrow morning, at 8am Evie will go into surgery. She will spend much of her day there. We are asking for your support, for your thoughts and for your prayers.

We will do our best to send out a brief update about her surgery and her progress in the coming days.

xoxo

Paul & Kristine

I spy with my little eye...

Right now I am sitting on a bed, nestled up nice and cosy, beside my beautiful little girl.  She is sleeping, and I can hear her soft breaths in and out, and every once in a while it is enhanced by a deep sigh.  We are sharing a warm flannel blanket, and even a pillow.  Her little hand is resting on my thigh, as she is wedged under my arm.  She looks so peaceful, and comfortable. 

In the background Treehouse is on the tv, and the damn Bubble Guppies are on...again. I hate that show, but to be honest, the droning sound of the tv is nice. I can hear at least three different conversations going on, all of which seem to be of a personal nature, so I do my best not to overhear.  Instead, I find myself quietly looking around my surroundings, taking in the sights.

I spy with my little eye
a tired little girl
a plate of untouched, cold macaroni and cheese
two empty Tim Hortons coffee cups
one full bottle of water
brand new Ernie and Bert stuffies
two homemade cards, made from marker and construction paper
my camera
my blackberry, dangling alongside the wall as it is charging
a tupperware container filled with roast chicken, potatoes and cauliflower
a starbucks bag with lemon poppyseed cake inside
a half full Chai Tea Latte
my duffle bag, overflowing with a mixture of clean and dirty clothes
a towel and toiletries waiting for me to decide when to shower
our broken down stroller
a red SickKids parent ID badge, for 24 hour access
a handout explaining procedures that have or will happen during our stay
some extra "stickers" for Evie's torso, which will attach to her heart monitor
a melted "pink" (red) freezie, dripping, and ultimately making the table sticky
my PJ20 book, a useful and interesting distraction, as they always are to me

On a hospital bed, with a curtain tightly pulled around, with room for only a chair and some monitors I sit and listen to my daughter breath deeply and sleep.  At the end of the night, it is just the two of us, inside that curtain.  It is quiet, with only a night light, and the glare of tv. 

It is my 30th Birthday. 

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