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.
Friday, January 27, 2012
Tuesday, January 17, 2012
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.
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.
Friday, January 13, 2012
Our little community get's bigger....
Evelyn was diagnosed with a Hypothalamic Optic Glioma on October 29, 2010. At the time, she was 6 1/2 months old, had just started to sit up on her own, was smiling and laughing, had doubled her birth weight on cue, and was our first experience with the words "brain tumour".
Those first days at SickKids are frozen in time for Paul and I. They seem so rushed, so blurred, and yet we can picture ourselves back there, in our room on 8D (and then 8A) so vividly. I can remember seeing the outline of Paul standing at the window as the daylight shone in our room in the early morning, making calls to those closest to us, briefing them on what was happening. Those phone calls, I can only imagine, were horrific to receive. I lay on the parent bed/couch, glancing back and forth at him, and then at our sleeping baby, so fragile looking in a big bulky metal crib. I could hear him start to talk, and then stop for long periods of time. I imagine him explaining, yet not really knowing how yet. We were so naive. We had little clue of the reality we were facing at that point. We were so new, in uncharted territory...or so we thought.
I have heard this referrence before, "we belong to a club that nobody ever asked (or wanted) to join". We felt so alone, and yet knew that there were others out there going through the same thing. We have been in a place where we felt singled out - different from everyone else. All of a sudden a new label attached to our family, knowing that we were talked about in a different light. But in the past 15 months, we have also been distant spectators as two other families have gone through diagnosis, and now treatment (or in one case, a lack thereof).
When Evie was first diagnosed I had no real interest in "connecting". Let's be honest, Paul and I didnt even want to see the MRI scans - it was just too much. It changed quite suddenly for me. I had debated support groups, and was not convinced it would be a good fit for me. I now have "others". And it is nice. Nicer than I imagined.
I connected with J's family first. They saw an email I sent that was published in a newsletter. J was diagnosed when he was the same age as Evie. He is now in first grade, and doing really well. He has never relapsed in his treatments, and other than a need for growth hormone regulation, seems to be doing wonderfully. He is a very busy, happy little boy.
I met K and her Dad only a few weeks ago. She also shares Evie's diagnosis, and though a little shy, she is a lovely little girl. Her Dad and I have talked a lot when we meet up in the clinic, and it has opened my eyes (sometimes a bit harshly) to the reality of our future with Evelyn. K is 4, was also diagnosed around 6 months, went through her initial 60 week treatment, and remained stable for almost 2 years before a "routine" MRI scan last May showed further growth. She is now on her 2nd course of treatment, another 60 weeks.
S is a story that I find hard to try and share. I feel as though we were destined to become a part of each other's lives, there were just far too many coincidences along the way. Though S does not share Evie's diagnosis, I share many of the same feelings as her parents. S is dying. Any day now really. She has DIPG, Diffuse Intrinsic Pontine Glioma. Essentially a tumour that is wrapping itself around the brainstem, with a 0% survival rate. It is killing her, slowly, and painfully. S will be three in April.
Just before Christmas we became aware of N. She is my cousin's (other) grandmother. She was also diagnosed with a brain tumour and within days underwent surgery. Though they took out 80% of her tumour, and she has been recovering remarkably well after surgery, she is still expected to live only another year or so. The tumour is just too devastating.
What Paul and I have learned through the past 15 months, is that it is not uncharted territory, as we once thought. It was simply new to us. As with most things, once you're eyes are opened, you realize that you are in fact surrounded. I simply cannot believe that this is happening. Now, two of my "others" I surely only met as a result of Evie's diagnosis. BUT, the other two.....they just happened. You think "not me, not us" - and it's so dumb, because of course you never acutally think anything is going to happen to you or your family. Isnt that naive? It's happening, all around us. Who exactly do you think its going to happen to you? Why do you assume that you have an invisible shield, a protective force. You dont. It's happening. I sincerely hope it doesnt happen to you. This is something I wouldnt even wish on my worst enemy. It's awful, and it's just not fair, but it's happening, perhaps you just need to open your eyes a little wider and take a look.
Those first days at SickKids are frozen in time for Paul and I. They seem so rushed, so blurred, and yet we can picture ourselves back there, in our room on 8D (and then 8A) so vividly. I can remember seeing the outline of Paul standing at the window as the daylight shone in our room in the early morning, making calls to those closest to us, briefing them on what was happening. Those phone calls, I can only imagine, were horrific to receive. I lay on the parent bed/couch, glancing back and forth at him, and then at our sleeping baby, so fragile looking in a big bulky metal crib. I could hear him start to talk, and then stop for long periods of time. I imagine him explaining, yet not really knowing how yet. We were so naive. We had little clue of the reality we were facing at that point. We were so new, in uncharted territory...or so we thought.
I have heard this referrence before, "we belong to a club that nobody ever asked (or wanted) to join". We felt so alone, and yet knew that there were others out there going through the same thing. We have been in a place where we felt singled out - different from everyone else. All of a sudden a new label attached to our family, knowing that we were talked about in a different light. But in the past 15 months, we have also been distant spectators as two other families have gone through diagnosis, and now treatment (or in one case, a lack thereof).
When Evie was first diagnosed I had no real interest in "connecting". Let's be honest, Paul and I didnt even want to see the MRI scans - it was just too much. It changed quite suddenly for me. I had debated support groups, and was not convinced it would be a good fit for me. I now have "others". And it is nice. Nicer than I imagined.
I connected with J's family first. They saw an email I sent that was published in a newsletter. J was diagnosed when he was the same age as Evie. He is now in first grade, and doing really well. He has never relapsed in his treatments, and other than a need for growth hormone regulation, seems to be doing wonderfully. He is a very busy, happy little boy.
I met K and her Dad only a few weeks ago. She also shares Evie's diagnosis, and though a little shy, she is a lovely little girl. Her Dad and I have talked a lot when we meet up in the clinic, and it has opened my eyes (sometimes a bit harshly) to the reality of our future with Evelyn. K is 4, was also diagnosed around 6 months, went through her initial 60 week treatment, and remained stable for almost 2 years before a "routine" MRI scan last May showed further growth. She is now on her 2nd course of treatment, another 60 weeks.
S is a story that I find hard to try and share. I feel as though we were destined to become a part of each other's lives, there were just far too many coincidences along the way. Though S does not share Evie's diagnosis, I share many of the same feelings as her parents. S is dying. Any day now really. She has DIPG, Diffuse Intrinsic Pontine Glioma. Essentially a tumour that is wrapping itself around the brainstem, with a 0% survival rate. It is killing her, slowly, and painfully. S will be three in April.
Just before Christmas we became aware of N. She is my cousin's (other) grandmother. She was also diagnosed with a brain tumour and within days underwent surgery. Though they took out 80% of her tumour, and she has been recovering remarkably well after surgery, she is still expected to live only another year or so. The tumour is just too devastating.
What Paul and I have learned through the past 15 months, is that it is not uncharted territory, as we once thought. It was simply new to us. As with most things, once you're eyes are opened, you realize that you are in fact surrounded. I simply cannot believe that this is happening. Now, two of my "others" I surely only met as a result of Evie's diagnosis. BUT, the other two.....they just happened. You think "not me, not us" - and it's so dumb, because of course you never acutally think anything is going to happen to you or your family. Isnt that naive? It's happening, all around us. Who exactly do you think its going to happen to you? Why do you assume that you have an invisible shield, a protective force. You dont. It's happening. I sincerely hope it doesnt happen to you. This is something I wouldnt even wish on my worst enemy. It's awful, and it's just not fair, but it's happening, perhaps you just need to open your eyes a little wider and take a look.
Tuesday, January 10, 2012
Friends and......I'm not quite sure....
A person with whom one knows and with whom one has a bond of mutual affection, typically exclusive of sexual or family relations.
We've all had our fair share of friends, and it is no secret that they come and go. Some friends seem to last for generations, always there, picking up right where you left off, no matter how much time has passed. Some friends we see often, talk often, some not very often at all. Some stay no matter what, loyal to your friendship. But some go. Sometimes there is a big fight, sometimes it is as simple as lives moving forward and not seeing someone as often. This surprised me after highschool, but more so after university. Friends that I felt very close to, I realized were not that close once there had to be effort put in to getting together. Sometimes maintaining a friendship is easy, and sometimes it's very difficult, arguably as hard as any romantic relationship. Sometimes something happens in your life, that changes you so much, that it truely does test your friendship, without you even wanting it to. Sometimes your child gets diagnosed with something terrible, and you realize that on top of their declining health, your friendships are declining as well.
Over the past 15 months I have experienced this first hand. My friendships have been tested. I didnt mean, or want them to, but it seems that this is what has happened. Now the results of any unanticipated test can be surprising, and this is no different. I have seen people change right in front of me. I have seen people disengage with me, take steps backwards, and I have seen friends emerge seemingly out of nowhere. Some have been faithful, some not so much.
It saddens me to think of true colours being shown in a time when we really need our friends support. I'm not trying to "call anyone out" or point the finger - but this loss has affected me a lot. I feel I have "lost" some people that I was very close to not so long ago. Where we once talked, or texted almost daily, weeks now pass with nothing. Where there was once a level of comfort, I now feel awkward and uncomfortable, as if I'm in a room full of people I don't know, instead of close friends. I feel I must also assume responsibility, it is a two way street.....but I cant ignore what my life has become. It is going to come up in conversation....and if that makes YOU uncomfortable....well, just think about how WE feel about it. It's our life, but not what we chose.
On the contrary there are some friends I have not given enough credit. They have been there for me always, and have not faltered when things have become more difficult. Friends who have supported me, encouraged me, been happy for me, and cried with me. There are friends that like clockwork will send me a BBM every Friday morning to tell me they're thinking about me and that they hope we have a good day. Friends that are excited to hear about whats happening in your life, good or bad. Friends that will always be waiting with a hug and a fresh cup of tea. Friends that are really only in your life because of the one thing that pushed other people away.
In the past year there has been in shift in my friendships. I have been fortunate to say that I feel I have gained more than I have lost. I have a new respect for my friends, and I have a new goal about what it means to me to be a good friend. Treat people how you want to be treated, in other words, be the friend you'd like to have.
We've all had our fair share of friends, and it is no secret that they come and go. Some friends seem to last for generations, always there, picking up right where you left off, no matter how much time has passed. Some friends we see often, talk often, some not very often at all. Some stay no matter what, loyal to your friendship. But some go. Sometimes there is a big fight, sometimes it is as simple as lives moving forward and not seeing someone as often. This surprised me after highschool, but more so after university. Friends that I felt very close to, I realized were not that close once there had to be effort put in to getting together. Sometimes maintaining a friendship is easy, and sometimes it's very difficult, arguably as hard as any romantic relationship. Sometimes something happens in your life, that changes you so much, that it truely does test your friendship, without you even wanting it to. Sometimes your child gets diagnosed with something terrible, and you realize that on top of their declining health, your friendships are declining as well.
Over the past 15 months I have experienced this first hand. My friendships have been tested. I didnt mean, or want them to, but it seems that this is what has happened. Now the results of any unanticipated test can be surprising, and this is no different. I have seen people change right in front of me. I have seen people disengage with me, take steps backwards, and I have seen friends emerge seemingly out of nowhere. Some have been faithful, some not so much.
It saddens me to think of true colours being shown in a time when we really need our friends support. I'm not trying to "call anyone out" or point the finger - but this loss has affected me a lot. I feel I have "lost" some people that I was very close to not so long ago. Where we once talked, or texted almost daily, weeks now pass with nothing. Where there was once a level of comfort, I now feel awkward and uncomfortable, as if I'm in a room full of people I don't know, instead of close friends. I feel I must also assume responsibility, it is a two way street.....but I cant ignore what my life has become. It is going to come up in conversation....and if that makes YOU uncomfortable....well, just think about how WE feel about it. It's our life, but not what we chose.
On the contrary there are some friends I have not given enough credit. They have been there for me always, and have not faltered when things have become more difficult. Friends who have supported me, encouraged me, been happy for me, and cried with me. There are friends that like clockwork will send me a BBM every Friday morning to tell me they're thinking about me and that they hope we have a good day. Friends that are excited to hear about whats happening in your life, good or bad. Friends that will always be waiting with a hug and a fresh cup of tea. Friends that are really only in your life because of the one thing that pushed other people away.
In the past year there has been in shift in my friendships. I have been fortunate to say that I feel I have gained more than I have lost. I have a new respect for my friends, and I have a new goal about what it means to me to be a good friend. Treat people how you want to be treated, in other words, be the friend you'd like to have.
Monday, November 28, 2011
Email # 7
Hi Everyone,
I will first apologize and say that I have been meaning to write this email for about 2 weeks now, but somehow time has escaped me. Though I know you will all understand that, I still feel guilty, as I know many of you are thinking of us, praying for us, loving us, and waiting for the day where we are all given some good news about Evelyn. Well.....it has finally happened, and we couldnt be happier.
On November 3rd Evie had her 5th MRI. Paul and I took her to SickKids, and are quite used to the routine of the MRI department. This time we didnt really know what to think. MRI # 1 was her diagnosis, so we knew nothing. #2 was our first check in, we expected good news, but accepted the growth when the doctors explained it to be normal to progress before regress. #3 was a kick in the gut, still growing. #4 was when my heart basically dropped. I did not want to be let down once again, so I tried to not even think about it as it was approaching. It was scheduled a year (to the date) after her first dose of chemo. We all really needed some good news. Immediately after her MRI her doctors reviewed the scans and told us they thought it looked promising, potentially stable, but would not officially know until they went through with a technician and reviewed everything. The following Friday I was able to call Paul and tell him that it was confirmed. Evie's tumour was stable, at least for now. Stable is the best news we have been given in a year of treatment, and is the first step in the right direction. We are thrilled.
Evelyn began a new treatment in late September. A fairly new drug, more commonly used in adults with aggressive tumuors, more commonly other cancers. It is "thinking outside the box" as the other "typical treatments" have not been working. The drug is used only when other options have not been successful. Evelyn is administered this drug on a bi-weekly basis, via IV infusion...which basically means every other week we are at the hospital the majority of the day, similar to when she first began treatment. This drug is given in conjunction with a drug she has been on since March, given weekly. It is undecided how long she will remain on this treatment, initial hope was that it would kick start the primary drug into working, and then she would be taken off. I assume she will stay on until the next MRI and then they will decide what the best path to take will be.
There are clearly concerns with any treatment, this one is no different. Her vitals need to be taken every 15 minutes throughout the infusion, and I often am asked to obtain a urine sample.....not always easy! As always, Evie's size and age are big concerns. That being said, or little girl is growing up. Evie is now 27lbs, getting taller and taller. She is a full on toddler, and quickly becoming quite the little girl. Her blonde hair is getting thicker and longer, and is hinting at a bit of a curl as it wisps away over her ears. Her nystagmus (shaky eyes) is settling down, and is hardly noticed. Those who see her regularly, and even those who dont, are happily surprised by how much she has grown lately. Every day she is looking plumper, a little toddler belly hanging out over her pants. She runs around the house, climbs on the furniture, often falls off of it. She finds purses and sorts them for me (um, thank you?!).....she carries around my cell phone and has in depth conversations with Dada (even when he is sitting in the same room watching her). She likes to do things her way, even if that means keeping her winter hat on in the house for a good half hour after we've come inside. She runs away often to the park next door, insisting on more "yides" (slides)...no wonder it takes forever when Paul is out doing yard work. This morning she even gave me quite the look when I suggested she have Cheerios for breakast....."Mama, unt oop boops peeeeeese" (translation, Mama, I want Fruit Loops please!). Please is always said with a giant grin and shoulders raised....makes it hard to say now! Wrapped around her little finger, yes we are.
Otherwise we are all moving forward. Isabelle is adapting to life as a 2nd grader, slowly realizing that school isnt all fun and games as it has been in previous years. It's tough, but she's working hard, and doing a good job. In case word has not spread to everyone, Paul asked me to marry him in October! Wedding planning has begun, and I think my experience in tv is greatly easing the process. It's very similar to planning a special event or one night show.....except I'm used to doing it on someone else's dime! Either way, we're having fun with it, and are very much looking forward to the wedding.
As we are in our last days of November, we realize that the Holiday season is just around the corner.....we hope that we will see all of you, or at least most of you, in the near future. Evie has appointments coming in December and early January, so we wont have any other news until at least then. So for now, enjoy the build up of Holiday Cheer!
lots of love,
Paul and Kristine
ps. to my lovely loyal friends and family......Air Farce New Year's special is airing on NEW YEARS DAY this year.....crazy eh? Watch it.
I will first apologize and say that I have been meaning to write this email for about 2 weeks now, but somehow time has escaped me. Though I know you will all understand that, I still feel guilty, as I know many of you are thinking of us, praying for us, loving us, and waiting for the day where we are all given some good news about Evelyn. Well.....it has finally happened, and we couldnt be happier.
On November 3rd Evie had her 5th MRI. Paul and I took her to SickKids, and are quite used to the routine of the MRI department. This time we didnt really know what to think. MRI # 1 was her diagnosis, so we knew nothing. #2 was our first check in, we expected good news, but accepted the growth when the doctors explained it to be normal to progress before regress. #3 was a kick in the gut, still growing. #4 was when my heart basically dropped. I did not want to be let down once again, so I tried to not even think about it as it was approaching. It was scheduled a year (to the date) after her first dose of chemo. We all really needed some good news. Immediately after her MRI her doctors reviewed the scans and told us they thought it looked promising, potentially stable, but would not officially know until they went through with a technician and reviewed everything. The following Friday I was able to call Paul and tell him that it was confirmed. Evie's tumour was stable, at least for now. Stable is the best news we have been given in a year of treatment, and is the first step in the right direction. We are thrilled.
Evelyn began a new treatment in late September. A fairly new drug, more commonly used in adults with aggressive tumuors, more commonly other cancers. It is "thinking outside the box" as the other "typical treatments" have not been working. The drug is used only when other options have not been successful. Evelyn is administered this drug on a bi-weekly basis, via IV infusion...which basically means every other week we are at the hospital the majority of the day, similar to when she first began treatment. This drug is given in conjunction with a drug she has been on since March, given weekly. It is undecided how long she will remain on this treatment, initial hope was that it would kick start the primary drug into working, and then she would be taken off. I assume she will stay on until the next MRI and then they will decide what the best path to take will be.
There are clearly concerns with any treatment, this one is no different. Her vitals need to be taken every 15 minutes throughout the infusion, and I often am asked to obtain a urine sample.....not always easy! As always, Evie's size and age are big concerns. That being said, or little girl is growing up. Evie is now 27lbs, getting taller and taller. She is a full on toddler, and quickly becoming quite the little girl. Her blonde hair is getting thicker and longer, and is hinting at a bit of a curl as it wisps away over her ears. Her nystagmus (shaky eyes) is settling down, and is hardly noticed. Those who see her regularly, and even those who dont, are happily surprised by how much she has grown lately. Every day she is looking plumper, a little toddler belly hanging out over her pants. She runs around the house, climbs on the furniture, often falls off of it. She finds purses and sorts them for me (um, thank you?!).....she carries around my cell phone and has in depth conversations with Dada (even when he is sitting in the same room watching her). She likes to do things her way, even if that means keeping her winter hat on in the house for a good half hour after we've come inside. She runs away often to the park next door, insisting on more "yides" (slides)...no wonder it takes forever when Paul is out doing yard work. This morning she even gave me quite the look when I suggested she have Cheerios for breakast....."Mama, unt oop boops peeeeeese" (translation, Mama, I want Fruit Loops please!). Please is always said with a giant grin and shoulders raised....makes it hard to say now! Wrapped around her little finger, yes we are.
Otherwise we are all moving forward. Isabelle is adapting to life as a 2nd grader, slowly realizing that school isnt all fun and games as it has been in previous years. It's tough, but she's working hard, and doing a good job. In case word has not spread to everyone, Paul asked me to marry him in October! Wedding planning has begun, and I think my experience in tv is greatly easing the process. It's very similar to planning a special event or one night show.....except I'm used to doing it on someone else's dime! Either way, we're having fun with it, and are very much looking forward to the wedding.
As we are in our last days of November, we realize that the Holiday season is just around the corner.....we hope that we will see all of you, or at least most of you, in the near future. Evie has appointments coming in December and early January, so we wont have any other news until at least then. So for now, enjoy the build up of Holiday Cheer!
lots of love,
Paul and Kristine
ps. to my lovely loyal friends and family......Air Farce New Year's special is airing on NEW YEARS DAY this year.....crazy eh? Watch it.
Friday, November 25, 2011
A little for you, a little for me...
November 25
"So a funny thing happened today....."
Ever notice how when people say that, it doesnt necessarily mean that the "thing" that happened was actually funny? Well imagine me saying that, but adding "at the chemo clinic" to the end of that sentence....I bet you're thinking, there is no possible way this story is actually funny....but just wait...
Evie and I were at the hospital, just like any typical Friday. It was a "long" day, and by 10:30am Evelyn had been accessed, and hooked up to her IV, and we were placed in our room for the duration. Now it was time to wait for her chemo to actually arrive. Sometimes this takes an hour, sometimes 2 or 3. It's actually a little frustrating at the discrepencies week to week, but when it's totally out of your control.....you just get comfy, bring more snacks, more toys, more books.
Evelyn is much more active now....in fact she is more active with each passing week, be it at the hospital or at home. This is a good thing of course, except it means that I have to chase after her with her IV pole close behind so that it doesnt pull too tightly, otherwise her needle could pull out. This has happened before, and if can be quite serious, especially if it happens during the chemo infusion. It stresses me out to be honest, so much so I've often found myself trying to figure out a better way to get this done. At the same time, I'm sure it is hilarious to watch. This woman running around a small hospital room, or worse the hallyway, after a toddler who's new trick is not only walking, but "unn" - arms waving hysterically in the air, an stricking resemblance to ET the extraterrestrial.
So there we are, taking a break from "unning" and sitting nicely on our hospital bed, quietly looking at some books. Finishing the stack I had brought, Evie quickly stood up. She quickly turned to look at me, horror in her little face, and then tears and cries. I looked frantically to try and figure out what had upset her.....and that's when I saw it. Evie's line was pulled very tightly, she had stood up on it, and it was yanked right out, the needle in her port falling out of her shirt. As this was not the first time, I knew that it was not good, especially as her chemo drip was not yet finished. I immediately lurched forward on the bed and grabbed the "CALL" button, paging the nurse to our room. I could hear them in the hallway coming to see what was needed...I snuggled Evie so she would settle down, which is when I noticed....Evelyn's needle, still connected to her IV drip, was in my shin. I was now hooked up to the machine, getting my very own dose of chemo. Without even thinking I pulled it out. Almost instantly a nurse was in the room, and as I attempted to explain the situation I saw the confusion and likely a bit of hilarity hiding somewhere in there too.
Within about 20 minutes everything was back to normal; Evie had been checked out, cleared to go home, and I had a chat with one of the neuro-oncologists to ensure me that my tiny dose of chemo would leave me generally unscathed....still shaken up, coming down from a bit of an anxiety attack, and slightly mortified, I couldnt wait to leave.
I guess it's more one of those, funny now that it's over.......so it's over, and it's fine....we can all share a laugh.....god knows the nursing staff at 8D likely are.
"So a funny thing happened today....."
Ever notice how when people say that, it doesnt necessarily mean that the "thing" that happened was actually funny? Well imagine me saying that, but adding "at the chemo clinic" to the end of that sentence....I bet you're thinking, there is no possible way this story is actually funny....but just wait...
Evie and I were at the hospital, just like any typical Friday. It was a "long" day, and by 10:30am Evelyn had been accessed, and hooked up to her IV, and we were placed in our room for the duration. Now it was time to wait for her chemo to actually arrive. Sometimes this takes an hour, sometimes 2 or 3. It's actually a little frustrating at the discrepencies week to week, but when it's totally out of your control.....you just get comfy, bring more snacks, more toys, more books.
Evelyn is much more active now....in fact she is more active with each passing week, be it at the hospital or at home. This is a good thing of course, except it means that I have to chase after her with her IV pole close behind so that it doesnt pull too tightly, otherwise her needle could pull out. This has happened before, and if can be quite serious, especially if it happens during the chemo infusion. It stresses me out to be honest, so much so I've often found myself trying to figure out a better way to get this done. At the same time, I'm sure it is hilarious to watch. This woman running around a small hospital room, or worse the hallyway, after a toddler who's new trick is not only walking, but "unn" - arms waving hysterically in the air, an stricking resemblance to ET the extraterrestrial.
So there we are, taking a break from "unning" and sitting nicely on our hospital bed, quietly looking at some books. Finishing the stack I had brought, Evie quickly stood up. She quickly turned to look at me, horror in her little face, and then tears and cries. I looked frantically to try and figure out what had upset her.....and that's when I saw it. Evie's line was pulled very tightly, she had stood up on it, and it was yanked right out, the needle in her port falling out of her shirt. As this was not the first time, I knew that it was not good, especially as her chemo drip was not yet finished. I immediately lurched forward on the bed and grabbed the "CALL" button, paging the nurse to our room. I could hear them in the hallway coming to see what was needed...I snuggled Evie so she would settle down, which is when I noticed....Evelyn's needle, still connected to her IV drip, was in my shin. I was now hooked up to the machine, getting my very own dose of chemo. Without even thinking I pulled it out. Almost instantly a nurse was in the room, and as I attempted to explain the situation I saw the confusion and likely a bit of hilarity hiding somewhere in there too.
Within about 20 minutes everything was back to normal; Evie had been checked out, cleared to go home, and I had a chat with one of the neuro-oncologists to ensure me that my tiny dose of chemo would leave me generally unscathed....still shaken up, coming down from a bit of an anxiety attack, and slightly mortified, I couldnt wait to leave.
I guess it's more one of those, funny now that it's over.......so it's over, and it's fine....we can all share a laugh.....god knows the nursing staff at 8D likely are.
Saturday, October 01, 2011
the incident
"The Incident" used to make me think of LOST. Season Five finale, did Juliet detonate the bomb? Did Jacob reallly get pushed into the fire? by Locke? I know, I know, I'm crazy...but let's face it...it was a great finale, and a pretty awesome TV show. However, after a brief email-ersation, "the incident" will now bring me to Friday September 30th. So let me explain "the incident"...
This day was to mark the 2nd dose of Evie's new chemo drug, Avastin. It is given via IV drip, every other week. This means that instead of quickly zipping through the clinic, we have to go through the longer process that we were first introduced to last fall when Evelyn was first diagnosed. We check in, play for a while, get called in to the "Blue Pod" for assessment, go back and play (and typically make a stop at Timmy's for tea #2 of the day, plus some "balls", aka TimBits, for Evie, then wait to be called into the IV room, then moved into the Day Hospital for the duration.
The day was going so smoothly - the IV drip was to be given over a 60 minute period this week, bumped up from 90 minutes on the first dose. It is standard practice with this drug, that vitals need to be checked every 15 minutes during the administration, which is usually a pain...what toddler wants to be poked and proded and bothered with every 15 minutes? This however, was the very first time Evie has managed to sit still and stay calm while having her vitals checked: blood pressure and pulse are always the worst...she hates the arm band and the finger thingy. I credit her nurse, Laurie, with this, she was very attentive, calming, and had some pretty awesome noise making animal toys attached to her ID necklace. When Evie was younger, by the time we made it into the Day Hospital for her IV, she was worn out, and would usually sleep in her stroller for the entire duration of her chemotherapy. This meant that I would relax, sit on the couch, eat my lunch, and watch some TV. Having a toddler is much different. She is now walking around, back and forth, and keeping up with her while pulling along an IV machine, well, it's not so easy. I typically sit with her on the hospital bed, play with toys and eat snacks. This is what we were doing yesterday, until she got a little restless, and wanted down. I'm not exactly sure what happened, but all of a sudden she was screaming and grabbing her chest, I grabbed her hand away and pulled back her shirt and saw that her needle was coming out of her port, blood trickling down her chest, tears streaming down her face. It was awful. I immediately paged the nurse, and when I told her what happened she quickly ran away and came back with four other nurses. I then had to hold Evie down as she cried, and struggled, and resisted, as they tried to re-navigate the needle back into her port. Once again, awful. I didnt realize the danger involved if chemo drugs are administered interstitially...it can make the skin swell/can cause rash or allergic reaction/can actually burn the skin...I didnt know. At the time, all I knew was my daughter was bright red, sweating, squirming, looking at me through tear filled eyes, likely wondering why I wasn't helping her, picking her up, stopping these nurses from "attacking" her.
So I ultimately became shaken after the fact. Everytime someone would come in the room to check on her afterwards I would ask them, "Is it dangerous?" Just about every time, I got a "No, but it could lead to _______ (fill in the blank with one of the previous mentioned complications). This just made me more and more anxious. I tried to call Paul, but didnt reallly want him to know how upset I was, so when he said he was a bit busy, I let it go . Not wanting to burden anyone else, or make a mountain of a mole - given the crisis had been averted - I rocked Evie back to sleep, and sat quietly for the next hour and a half, quiet with my thoughts, my worries, my fears, waiting to go home.
Yesterday reminded me of the seriousness of what we're doing. I think it's easy sometimes to, not forget, but maybe dismiss? Chemo is part of our routine, it's something we do, it has become habit. I know and understand the process, the expectations, in general the results. I go the the appointments, I do my part as best I can. I mother my baby. It's when something not planned, a deviation to my schedule of events, it brought me right back to last October, it brought back my fear, and my upset, and my anger. Anger is one emotion I have little use for - I spent a lot of time angry, could hold a grudge with the best of em, but it has never helped me. But for a brief while, last fall, I needed it. I think I needed to feel that initial anger, to realize that it wasn't going to help, that it was much better to get past it as quickly as I could and move forward.
As stressful as the day was, it could only last so long. By the time we left the hospital Evie had moved on and happily waved goodbye to the nurses. My nerves were eventually calmed, with a little help from a bottle of red wine, and the company of a good friend. But despite feeling better by bedtime, it is clear in my head that I had perhaps forgot, or chose to neglect for the sake of myself and my sanity, that my daughter has a brain tumour. Chemo is not just "a Friday activity" as we often joke it is, it is a treatment, the only treatment we have right now, to hopefully save and restore our daughter's health. It is serious business. It is her life, and she is mine. I hope I can remember this moving forward, and not have to be reminded by another horrific "incident".
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