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
Wednesday, October 24, 2012
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.
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.
Tuesday, October 23, 2012
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 4thEvie 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 14th) 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
Sunday, October 21, 2012
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.
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.
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