Email #13

Hello friends,

All of a sudden we're well into 2013, so I thought it might be time to update everyone again...once again, much has happened in the three months since I last wrote - that should be my first sign that I need to think about doing this a little more often.  To get everyone sort of up to date, here are the "high lights" (low lights?!)

We got to start the month of November at home, a "clean slate"...that being said about two weeks after discharge we had a day trip back to the ER as Evie was having a few problematic symptoms.  We were well prepared this time (I took my time, packed a few overnight bags just in case they were needed, made a few phone calls and even got a friend to drive us down to the ER so we didn't have to take our own car), and well taken care of, as usual.  After a day in an ER room, and visits from several of her team (including our amazing NeuroSurg Resident), she was fully checked out and cleared to go home.  We were home just after dinner, and thankfully Evie's symptoms were gone by the next morning. 

Upon our discharge in October,  we were told Evie would need to start taking thyroid medication, and so she did.  Despite being a bit of a dietary adjustment (she cannot have milk/milk products 4 hours before and after.....that means no milk with her cereal, no yogurt, no cheese for breakfast.....all of her favourites of course!), it is going well.  She has since had a follow up appointment with her Endocrinologist and they seem happy once again.  Evie is tall for her age, and her weight is getting back on track.  She has yet to gain all she lost, but is still considered to be in healthy range for her age.  Skipping ahead a bit, after weeks and weeks of tests, we have recently discovered that Evie is anemic.  This too should be somewhat of a simple fix, in that she needs to take a liquid iron supplement every day as well.  Blood work will be done to keep checking that both the Thyroid meds and Iron supplements are working - so far so good....but always more blood work. 

Within a week of arriving home, we had out first (and what would be our only) visit from our CCAC Home Care worker, and a week later I got the call that Evie was being called up to Holland Bloorview.  Evie started her rehab at Bloorview on Monday November 12th.  We had met with a social worker there the week prior and were told that they did not believe that Evie would need to be an In Patient (meaning live at the Centre), but would instead start as a Day Patient (meaning come to the Centre daily for therapy).  This is great news for our family - after living in hospital, the last thing we wanted to do was come home for a few weeks and then move out again, so it came as a big relief and we were more than willing to commute every day.  Evie's therapy would consist of daily 30-45 minute sessions with Janet (Occupational Therapy), Jennifer (Physiotherapy), Sarah (Speech and Language Pathology).  When she isnt in therapy, there is a therapeutic play room, fully staffed, that I am able to take her to (and stay, or go have a break myself).  Evie really enjoys coming to Bloorview.  I generally take Isabelle to school in the morning, and then pack Evie up and head there right after.  Her therapies are all tailored to her, so she does a lot of puzzles, plays with Mr. Potato Head, rides "her" tricycle down the hallways. Though I wasn't good about emailing, I did take a lot of pictures and videos, and I have uploaded them all to a new YouTube account.  You can watch a bit of her progress here: Our YouTube Channel.  She does her therapies, and has her snacks in between sessions.  In December Bloorview even started a toddler Music therapy session once a week!  Therapy at Bloorview is 1:1, but they made it a group program to accomodate how many toddler aged kids were currently in the Day Program - which is great because this is the normal kind of stuff that I would be doing with her....if we weren't spending our days at therapy. 

On top of starting Bloorview, Evie's NeuroOncology team shocked us a little when they told us in late November they didnt want to wait to start a new Chemotherapy protocol.   We were kind of given the impression at one point that Chemotherapy would come after rehab.....but as one of her Oncologists put it, "It looked like it was working, so we dont want to stop...".  As we remember, the last time we stopped, things kind of got out of hand.  And so we were rapidly introduced to yet another chemotherapy protocol (for those keeping track at home, this would be #4).  The new regime is a bit complicated at first: running on a 42 day cycle it involves four days of chemotherapy at home (every six hours for 14 doses), followed by two visits to clinic for a dose of chemo there.  Basically we're at SickKids every two weeks either getting chemo or chemo prescriptions for home.  I wouldn't call us pro's, but by now, we know the drill.  Some doses go down without a fight and we're amazed at how cooperative she is, and some go down with tears galore....both mine and hers.  Either way, we're getting through it, one dose at a time.  This protocol is expected to be about 60 weeks long. 

Otherwise Evie had a follow up with Dr. Wong (Opthamology), and was once again said to be on track.  Her vision is what it should be for a toddler, but it is becoming increasingly more difficult to test her.  I feel that the problem is a few things, not only is she a "typical toddler" (meaning sometimes temper-mental, argumentative, stubborn...), but she also has yet to learn some of the vocabulary needed to answer the questions...I'm not convinced she can identify all of the objects, so it's not that she cant see them, necessarily....What's amazing is that since Evie had her surgery in October, her nystagmus has settled down - a lot.  I'm hesitant to say it, but it's hardly there at all.  This isnt something that was expected from surgery - so let's just call it a happy surprise.  Dr. Rutka, Evie's NeuroSurgeon has had a follow up with her as well and is also happy with her progress.  We don't need to see Endocrine, Opthamology or NeuroSurgery for six months!

On January 24th Evie had MRI #10 and the results show that the tumour is stable.  There are no major visible changes in the tumour since her post-op MRI in October.  Though I know we'd all love to hear that it is shrinking, stable is ok - we'll take it, for now.  A week later, on January 31st Evie had her last day as an In Patient at Bloorview!  She has graduated out of the Day Program and will now be an Out Patient, taking our therapy visits down from every day to once every 2-3 weeks.  I couldn't be happier - I know Evie enjoys it there, but for me, it's been a long haul, and I am getting a bit tired. 

I want to be honest and say that things have not been easy for us over the past four months.  Evie being in hospital last fall has had a lasting impact on our family, and we are slowly coming to terms with just how serious things were.  It was a scary time, and we're still walking a long road to recovery.  I like to write with an air of optimism most of the time, because we are, I am.  I have said many times, "You get what you give", so I felt I really needed to put out more positivity in order to get that back from each of you.  But right now we're 28 months into something we thought was only going to last 11, still months away from "the end".  After such a long time, it's hard to stay and feel positive all the time.  I feel comfortable saying this now because I realize who I am sending this to.  You are our friends, our family, our community and our support system.  You have all listened, cared, and been there when we needed you to.  Remembering this makes it easier for us to admit when we feel low, because that's when we have needed you more.  Thank you. 

This is an epic update, but I wanted to cram one more thing in:

Last week Paul and I were invited to attend the Meagan's Walk Gala.  It was a great night, we were seated at a table with other parents which was so nice, and also got the opportunity to hear two of Evie's doctors speak about the advancements in brain tumour research, the new Research Centre being built, and the difference Meagan's Walk and Sick Kids are making in regards to Pediatric Brain Tumour Research.  As of today, Evie's Team is registered for Meagan's Walk 2013.  We were so proud to have so many of you walking with us last year, and would like to invite you all to join us again this year!  Here is the link to join our team: Join or Sponsor EVIE'S TEAM.  This year we walk again in support of Evie, but also in support of her friends.

Paul & Kristine

Email #12

Hi,

After 13 days in SickKids, enduring 2 Surgeries, 2 MRI's, 2 CT's, 1 X-Ray, and multiple rounds of blood work, not to mention a total of 62 Bravery Beads, we are happy to tell you that Evie has been discharged. Evie and Mommy got home on Wednesday evening, just in time to see the trick-or-treaters!

After Evelyn's surgery on October 19th, she was admitted to the NeuroSurgery ward, 5C, and placed in the Constant Observation room. This room is shared with three other patients, and has it's own nursing station, with two nurses on duty at all times. Each patient had only the space contained within the curtain that pulls around the bed...it was a bed, and a rocking chair. It was small, not very private, and basically a difficult place to spend your time.

On October 24th, Evie was taken into surgery. Once completed, she was transferred to the CCU / PICU (Critical Care Unit / Pediatric Intensive Care Unit). There she was closely monitored overnight, and by 7am was deemed stable, and transferred back to her previous home on 5C. Evie stayed there until a private room became available on Friday October 27th.

From October 26th to October 31st we were given the luxury of our own room. This meant Mommy had a bed to sleep in, and didnt need to walk down the hall to use the bathroom or shower. It also meant our visitor capacity went from 2, to 4......however I think we broke those rules more than we followed them. It meant that we didnt have to listen to 3 other patients troubles, discomforts and guests...I do not mean that to sound insensitive, but it was hard enough to deal with our own issues withour hearing those of others. In the days after her 2nd surgery, a frontal craniotomy resection (for debulking), Evie was medically coping well, but to us, she was very much a different little girl. She was on a morphine drip, and half a dozen other medications to help her recover. She was quiet, and her eyes gazed vacantly. I would tell all her visitors, "I know it's not quite Evie, but the doctors say she is doing really well". We had been told prior to surgery that this would likely happen, simply a delay in processing from having "poked around" in her brain. She was also very quiet, some days only speaking a few words. This was initially a bit of a concern for her doctors, but not for Paul and I....she spoke to us, and could easily be bribed to talk with Skittles. She was eating and drinking very little on her own, and we continually talked about feeding tubes and IV fluids. However, in order to push her body to recover on its own, and not become dependent, she was taken off all IV's and machines on October 27th. By Monday morning, October 29th, Evie woke up and seemed to have "turned the corner". She was expressing interest in eating (for the entire 13 days in hospital, if Evie ate, it was Fruit Loops for Breakfast and Macaroni and Cheese for lunch....AND dinner). She was talking more, though usually still being bribed into it. She was slowly becoming more interactive. Those who saw her over the weekend, and then again by Tuesday October 30th could see a visible difference in Evie. During morning rounds on October 31st, I was a little shocked to hear Dr. Rutka ask me if we would like to go home that day. We have been home now for a few days, and though they have been a bit chaotic, it feels nice to be home. Evie is so much more herself. She is talking a lot more, interacting with everyone, and eating.....a steady diet of Fruit Loops and Macaroni and cheese......though we have been able to sneak in some Babybel, Arrowroot cookies, apples, and Skittles.

Moving forward, the recovery process is well underway. Though the physical signs of surgery are healing beautifully, there are other things that will take longer to heal:
- Evie lost about 13% of her body weight in the weeks around when she first became sick and her stay in hospital.
- Evie is having balance issues. She is currently unable to walk unassisted, and is even having trouble sitting at times. We are working with CCAC for Home Care right now, however we have a referral in for Holland Bloorview Kids Rehabilitation Hospital and will be checking in there as soon as a place becomes available. Evie will likely be doing some form of physiotherapy (starting with fairly intensive In Patient status, and graduating to Day Patients and then Out Patients) for the next 8-10 weeks.
- From the blood work taken while in hospital, it was found that Evie's thyroid has been affected by the growth of her tumour (when last seen by Endocrinology in June 2012, all levels were good). Evie has Pediatric Hypothyroidism, which simply means that her thyroid gland is underactive, not producing enough of certain important hormones. Thankfully, as we have mentioned before, any Hormone deficiency can be treated with synthetic drugs, which Evie will take once a day from now on. This is totally manageable, and is an issue many people deal with all the time.
- Evie will be seeing her entire (expanding) team over the next few weeks for follow ups. Endocrinology will ensure the thyroid meds are working properly and at the right dosage, NeuroSurgery will ensure she is on track from her surgical recovery, Opthamology will re-assess her vision (which seems to be ok, despite all the recent happenings), and NeuroOncology will assess, and evaluate Evie, likely deciding on a new Chemotherapy protocol. It is expected that Evie will need more chemo, as there is still a large chunk of that tumour that needs to be dealt with. However, as surgery told us, chemo was working and killing the tumour, so there is hope that it will continue that process.

As she sits beside me at the table eating her lunch, white cheddar Annie's Mac and Cheese, I asked her what I should tell everyone about her. Her response, "I got a new balloon". She is doing well. Thank you to everyone for all of your continued support. This has been one of the scariest things we have gone through as a family, even more so then 2 years ago when Evie was first diagnosed - likely because we simply know more now. While I was sucked into the SickKids vortex, living in hospital with Evie, Paul was jumping back and forth between home and hospital, picking up the pieces and making sure that everything else was taken care of....and he was able to do this so well because of the help from so many of you. Without those playdates, dinners, drives, hugs, and of course, all the love we felt from all of you, I'm not sure how we could have done it. Thank you.

http://www.youtube.com/watch?v=G8EzVqw97rA&feature=g-upl

Take care,

Paul& Kristine

Email #11

Hi again,

It has been a long day, and we are all very tired.  I want to first say a big THANK YOU.  We received every email, every text message, every bbm, every facebook message.  We felt the love and positivity flowing today, and it honestly made it that much easier for Paul and I to endure the day.  We are so humbled, and overwhelmed....we knew we had a kick ass support system....but this was just incredible.  Thank you so so much...clearly, our little one is loved.

Evie went into Surgery right on time. 
We received a call at noon letting us know that things were going well.
By 1:30pm we were standing in the hallway of the Critical Care Unit, talking to Dr. Rutka, the Neuro Surgeon who was leading the procedure.  He was quick to inform us that it had gone well! 

What does "well" mean?  It means that the surgery went according to plan, they were able to do what they intended to do - remove portions of the tumour.  There were no complications, everything went smoothly.

What does this mean longer term?  We will have to wait and see.  Evie woke up from anesthesia perfectly, a good sign. She is responsive, and awake.....and has been all afternoon and evening....a nice change from the constant sleeping!  She is quiet, has hardly said anything, but is interacting, holding hands, and has even given us a few high fives.  The next few days will be a good indication of her recovery. 

We will be sure to be in touch,

xoxo

Paul and Kristine

the waiting game

I thought working in television I knew what it meant to "Hurry up and wait".  I cant even count the number of times this has come up, something is super urgent, and the deadlines are crazy, and everyone on set is waiting for you to hurry the hell up.....so you do, you move so fast, you run instead of walking, you take the stairs instead of waiting those few minutes for the elevator, your fingers dart over the keyboard faster than you ever knew they could.  You get it done.  And then you wait.  Your part is over.  Now it's up to the rest of them.  And so you wait.  Hours sometimes, and inevitably, you're really just waiting and waiting to do it all over again.  To get the call, to have the moment of panic, to scramble and get your part done.  Again.  A few years ago when I was working on a weekly live show, I had to adopt and rememeber: "It's only television.  It's not like we're saving lives or anything.  It's just TV."

It's so ironic that I now find myself, years later, sitting in a hospital wing remembering all of this.  Hospitals are the MASTERS of "Hurry up and wait".  They cant exactly help it - I get that.  There's just a lot going on around here.  In the past six days alone we've been seen by well over 30-50 different people, reception/nurses/doctors/surgeons/oncologists/interns/social workers/occupational therapists/physiotherapists/research coordinators.....seriously I could continue.  It's crazy.  They all want the same thing, and they all need each other to get it.  So one by one they come around and we chat for a minute or two, or more, and we make some decisions, and then we run some tests and then we wait.....and wait, and wait, and wait.  We wait so long that you get distracted because someone else has already come by to chat, and make more decisions and run more tests.  Whats crazy, and scary really, is that when they want to hurry up - they are not kidding.  Evie needs a CT scan, it's done and we have results in 20 minutes flat.  Evie need's surgery, we're doing it NOW....(good thing she's already NPO).  We appreciate this, for sure, but it's kind of scary watching these strangers really, make huge decisions about your child (her head, her life, her future) so quickly, after only knowing her for a day.....perhaps only by reading her file. 

We know Evie is in good hands.  Her team is remarkable, an honest to god situation of the best of the best, not only at SickKids, but Internationally reputable people.  We know that even though it seems rushed to us - they do this for a living.  I bet the head Surgeon has been doing this as long as I've been alive.  It makes sense to them, a whole lot more than it does to us anyway.  I'm glad they get it.  As an Associate Producer in TV and an Electrician, it is way beyond our realm of understanding.  We're relying on them, literally with our daugters life.  We need them to do this, we need them to be able to do this.

Right now we are almost five hours into an estimated six hour surgery.  We are doing prettygood I think.  No tears, just a little apprehension and anxiousness.  We did as we were told.  We ate, we walked around outside.  We did the ICU tour, as this is where Evie will be for a day or two.  We checked in.  We're waiting on the surgical floor, watching the screen from afar as it displays;
La. E., (1J5) IN OR

We're very cautiously optimistic.  We are terrified of this surgery, but are hoping that it will make the difference.  We kind of need it to.  I miss Evie.  She just hasnt been the same lately.  I need her back.  And I'm hoping that all this waiting, if we're patient, and if we respect what is being done, and what she is going through, if we just put our faith in the right people, have the love of all of our people, wait patiently and follow the rules....that this time, it will work. 

And so we wait...and I think we're getting better at it. 

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!