As they say, out with the old and in with the new. Personally I'd like to punt 2011 out, and slam the door. You won't be missed 2011, not one bit. Although it wasn't 100% bad and terrible, we had some amazing moments and made some beautiful memories, but unfortunately most of it was outweighed by the sorrow, anger, and endless sleepless nights.
In 2011 we hit the most intense part of Brinley's cancer treatment. This of course, went hand in hand with vomiting, headaches, tummy aches, burning bones, hair loss, hospitalization, fevers, steroid rages, endless eating, and the big bad world of nadir. Countless hours spent pacing the hallways of the Children's Hospital, silently telling yourself everything will be ok, blowing through boxes of Kleenex because try as you may, the tears just won't stop. Early morning appointments fighting with a very sick and grumpy Brin, begging her not to eat because, again has to go for a "big sleep" even though she had one last week, and the week before. Days helping Brinley navigate the house without hurting herself because the nerves in her legs don't respond so quickly, and she's so doped up on her synthetic marijuana to keep her appetite up and prevent her from vomiting. These are just a few things 2011 had in store for us, and I hate to sound like a broken record so I'll stop with the gore.
2011 also held some amazing moments for us as well. My lovely friends got together and threw us a fundraiser, to this day I cannot wrap my brain around, and then on top of it, a garage sale. These girls really saved a lot of my sanity, and I'll never forget, and will always be grateful for their friendship.
We also had a trip of a lifetime to Disneyworld. I love hearing the kids talk about it to this day. I love hearing over and over again the best moments they had in Florida. Feeding the dolphins, princess and pirate makeovers, teacups, space mountain, and oddly enough, putting on their swimsuits and splashing in the Florida down pours. And of course the move! I'm still not sure if I'd call it "amazing" but instead maybe a bit frightening. It's one thing to uproot your family and move, forget a new home, new location, but we're dealing with a new country, new medical system, new doctors, new new new, different different different. I do love living here though, I love the weather, and I love seeing old friends and their new families. I'm still getting use to the medical system and all of the lingo that goes with it. But given this last year, I've proven to myself that I can handle new words, terminology, and change. Change is the inevitable, change forces you to move forward and evolve.
So here's to hoping 2012 is boring, and if it has to be anything other than boring, let it be positive.
Saturday, December 31, 2011
Saturday, December 24, 2011
1 year, cancer free
..only a day late
Here we are at another milestone, Brinley has reached her one year, cancer free. One of the few days I've felt a tinge of relief, and a bit of the weight had been lifted. With weekly chemo appointments, and 30 days of steroids, we pretty much had a completely different child. I remember thinking, "will she ever be herself again?" I was so angry that she was different, she had changed not just physically, but her whole demeanor changed. It was like the life had been completely sucked out of her along with the cancer.
Last year I was given the best Christmas present when the doctor told us Brinley was in remission. Leading up to the holidays I was checked out. I could careless if there was Christmas, or festivities, I wanted no part of it. I wanted to crawl into bed with my baby, hold her tight and wake up when the nightmare was over. But as parents, you wear the smile on the outside and push through the pain to give your children the best positive environment possible. I was saved by the fact I had Christmas shopped in October and bought the kids their gifts (which NEVER happens, I'm always last minute). Our usual "invite everyone" Christmas dinner of 17, was cropped down to the 4 of us, my parents and Blake's great gram. I just couldn't deal with people around me, just in case someone exposed the happy lie, a crack in the "foundation of me". I couldn't risk falling apart on Christmas day. I didn't want to be sad, angry, or happy, I just wanted to be still.
This year, I'm looking forward to celebrating, I'm excited to wake up at 6am to squealing kids that Santa has been here! I look forward to them tearing open their gifts and helping them set it up. I anticipate Christmas dinner and sitting down with my family and celebrating, not just the holidays, but celebrating that Brin has been cancer free for a year. I am grateful to be able to celebrate with our family at home, I'm thankful to amazing friends who let me rant and rave without passing judgement. I'm thankful to my amazing husband who has been a rock through this wild rollarcoaster ride. He's been a huge support system for me, and a cheerleader for all of us when we need it.
Thank you to those who read this blog, and leave words of encouragement. I love reading them, they really fuel me to keep going.
Happy Holidays to you all, I hope you spend this holiday to celebrate love, compassion, sharing and family.
Here is a little flashback for you all, the difference is staggering.
Here we are at another milestone, Brinley has reached her one year, cancer free. One of the few days I've felt a tinge of relief, and a bit of the weight had been lifted. With weekly chemo appointments, and 30 days of steroids, we pretty much had a completely different child. I remember thinking, "will she ever be herself again?" I was so angry that she was different, she had changed not just physically, but her whole demeanor changed. It was like the life had been completely sucked out of her along with the cancer.
Last year I was given the best Christmas present when the doctor told us Brinley was in remission. Leading up to the holidays I was checked out. I could careless if there was Christmas, or festivities, I wanted no part of it. I wanted to crawl into bed with my baby, hold her tight and wake up when the nightmare was over. But as parents, you wear the smile on the outside and push through the pain to give your children the best positive environment possible. I was saved by the fact I had Christmas shopped in October and bought the kids their gifts (which NEVER happens, I'm always last minute). Our usual "invite everyone" Christmas dinner of 17, was cropped down to the 4 of us, my parents and Blake's great gram. I just couldn't deal with people around me, just in case someone exposed the happy lie, a crack in the "foundation of me". I couldn't risk falling apart on Christmas day. I didn't want to be sad, angry, or happy, I just wanted to be still.
This year, I'm looking forward to celebrating, I'm excited to wake up at 6am to squealing kids that Santa has been here! I look forward to them tearing open their gifts and helping them set it up. I anticipate Christmas dinner and sitting down with my family and celebrating, not just the holidays, but celebrating that Brin has been cancer free for a year. I am grateful to be able to celebrate with our family at home, I'm thankful to amazing friends who let me rant and rave without passing judgement. I'm thankful to my amazing husband who has been a rock through this wild rollarcoaster ride. He's been a huge support system for me, and a cheerleader for all of us when we need it.
Thank you to those who read this blog, and leave words of encouragement. I love reading them, they really fuel me to keep going.
Happy Holidays to you all, I hope you spend this holiday to celebrate love, compassion, sharing and family.
Here is a little flashback for you all, the difference is staggering.
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| December 2010 |
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| december 2010 |
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| december 2011 |
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| november 2010 |
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| december 2011 |
Happy Holidays to everyone!
Thursday, November 17, 2011
Three Hundred and Sixty Five Days Later
Year one
I still can’t believe it’s been a year since Brinley was diagnosed with leukemia. It’s been a tough year to say the least. As a family we’ve grown, and been there for one another, sometimes to just make it through a few hours, and sometimes those hours ran into weeks and months, and here we are, a year later. I find myself more emotional when I think about those crucial moments in learning that Brinley has cancer, more emotional than I did a month after the fact, or even the day after, which I can’t only describe as shock. For a moment, I stepped out of myself and put my words down, and when I go back and read it, I can’t believe the stuff that poured out, during such an intense and vulnerable time. Here is a link to my very first blog which kicked off this whole healing process for me.
I know it was dated Dec 12th, nearly a month after she was diagnosed, but it was written November 20th, I guess I didn’t have the courage to, “put it all out there”. Moving on…
I’d like to go over what I’ve learned in the last year, because after all, as much as I hate to admit it, this has been a very educational time for me as well.
(this part has been written on and off over the last few weeks, I find myself being emotionally raw from time to time, and I have to take a break and pick up where I left off)
I’ve learned that a place of disbelief and shock can engulf you completely. The shock comes as a dull feeling, and your brain can only process little bits at a time, I often found myself re-reading notes taken at the conference the day after Brinley was diagnosed. Catching up on “what I missed” sure I was there, in body, but my mind wasn’t. It was locked away in the steal vault of, “you’re not strong enough to process this now”. The brain is a funny like that, it’s almost as if it says, “you sit, be calm, I’ve got this, and when you’re strong enough, go ahead and take the reins”. And sure enough, when the shock fades, then you get the experience the joy of fear, guilt, anger, and helplessness.
The fear is something I don’t dive into too much; I guess I’m fearful of fear…imagine that! I try not to get my brain wonder there, but it happens, I’m only human. Fear is something that can be very sneaky, and it only really shows its face when my guard is down. Like when I’m snuggling with my daughter, and I think, “I’m so grateful I can snuggle her…what if I couldn’t? What if she relapses and then its game over?” or worse off “what if she dies?” It’s something I’ve never said out loud, the words scare me, but it’s such a reality that it can’t be ignored for long. Of course you can’t show your fear, especially around your child. We’re supposed to be the brave, invincible parents who aren’t afraid of anything. We hope that if wear that mask on the outside they will mimic the same fearlessness. Deep down lurks a completely dark and different feeling.
Guilt is something I haven’t spent much time on, in the beginning I did. As a parent, I’ve wrecked my brain over and over “what could I have done differently?” But the facts are there, leukemia is not a cold or virus, it’s a disease, and you cannot prevent it. Basically we were dealt a crappy hand, and now we have to make the best of it. I have comfort in knowing that we are giving Brinley the best care we can, and that her health will always been a top priority. But the days when the fevers spike, and her blood levels drop I go through my brain, “maybe I shouldn’t have taken her to that park? Maybe I shouldn’t have let her swim for 5 hours, maybe I should pull her out of ballet” some form of guilt will always be there.
Now anger is something I have experience with. I’ve been angry a lot in the last year. Angry, bitter, pissed off, irate, enraged, however you want to spin it, I’ve felt it. Angry because cancer can cast a shadow on everything, it can cloud your vision and take over your whole mind. I’m also pretty sure anger and fear are best friends because when I experience one, the other quickly follows. Anger usually takes place when I least expect it, and more so on chemo days. I hate going to the hospital, I hate that something so abnormal, has become normal to us. I should NOT be taking my 4 year old to cancer treatments; I should be taking her to the park, or to dancing. I’m angry at the fact that she’s completely unmoved by what has become her normal routine in life (grateful at how she handles it though!!) I hate pacing the halls waiting for her to wake up from the anesthetic; I get angry at the “hum drum” of it all, when I just want to scream. I'm angry at the pointing fingers, the invasive questioning I get from complete strangers, and the school yard giggling has often moved me to tears.
So now that I’ve ranted and raved, I should probably jot down a few not so important things I have learned this year as well.
- It doesn’t matter what time of day or night it is, it is always a good time for spaghetti when you’re on steroids.
- It doesn’t matter what time of day or night it is, it is always a good time for spaghetti when you’re on steroids.
- To avoid nervous break downs, sometimes you have to give up control.
- You’re true friends will always be there to listen and take some of the load off, no matter how much you resist and want to say, “I got this” you don’t, stop kidding yourself…and it’s ok.
- Don’t forget the magic cream…ever
- Have a pen and paper out ready to take notes when you’re roided up child is about to go into surgery. The “what I want to eat when I wake up” list can be exceptionally long…and don’t skimp on the food.
- Spend a little time on yourself when it comes to the hair loss. You spend so much time and effort teaching your child how to cope that when the day happens, you’re the one left sobbing in the bathroom de-clogging the drains.
- When Brin wants “pizza” it means she wants “meat” just buy the meat and forget the $20 pizza.
- Brinley can eat with both hands, at the same time.
- I want to be like Brin when I grow up
- 20 hours of sleep is completely necessary
- Grow a bigger internal voice that says, “yes I can” to override the one that says, “you can’t”
- Being tired, weak and in pain is common, invest in a comfy compact stroller.
- The more Brinley knows about her illness the better she copes.
- Don’t dance around the subject, “Hi my name is Brinley, this is not a haircut, I am not a boy, I have cancer, and my chemo made my hair fall out so it’s growing back” is a perfectly good introduction to inquiring minds.
- I find humor in the strangest moments. “maybe I’ll hang a sign around her neck that says, it’s not lice, it’s not a haircut I have cancer, just so people stop asking”
- 2 hands are make a fast thinking puke bucket
- Surviving is not the same as coping.
- Surviving is not the same as coping.
I’m sure this list will grow in time; we still have another year to battle big bad leukemia. Brinley’s off treatment day is January 19th, 2013, provided she remains fighting and on the right path. It still seems like yesterday I was bundling her up in her red down winter jacket and rushing her off to the Children's hospital. I will never forget the look of panic that came across Blake's face as he did the forbidden "web MD" symptom research, "Morgan she has all the early symptoms of leukemia".
As much as I’d like this cancer gig to not be part of our life, it is, but in a much smaller light now. We’re no longer consumed by the treatments and hospital visits. Brinley is able to lead the normal life of a 5 year old. She is in ballet once again, and in a class with 6-7 year olds due to her past experience. She will be going into soccer when the season starts and after she’s had her IVAD removed. In Arizona they remove the central lines as soon as front line treatments are over, so they were shocked to learn Brin still had hers in. After talking it over with her, she’s decided she would like it taken out. This means we’ll have to start to strengthen her veins with practise IV’s. I’m not banking that this is all going to go over well; it’s going to cause some issues because she’s terrified of needles. But maybe if they are gentle and show her there’s nothing to be afraid of, she’ll go for it. Or maybe she will freak out and call the whole thing off. I’m just happy she’s willing to try.
As much as I’d like this cancer gig to not be part of our life, it is, but in a much smaller light now. We’re no longer consumed by the treatments and hospital visits. Brinley is able to lead the normal life of a 5 year old. She is in ballet once again, and in a class with 6-7 year olds due to her past experience. She will be going into soccer when the season starts and after she’s had her IVAD removed. In Arizona they remove the central lines as soon as front line treatments are over, so they were shocked to learn Brin still had hers in. After talking it over with her, she’s decided she would like it taken out. This means we’ll have to start to strengthen her veins with practise IV’s. I’m not banking that this is all going to go over well; it’s going to cause some issues because she’s terrified of needles. But maybe if they are gentle and show her there’s nothing to be afraid of, she’ll go for it. Or maybe she will freak out and call the whole thing off. I’m just happy she’s willing to try.
Tuesday Brin will be having her first LP in the US. It’s going to be different considering she has blood counts done the day before surgery so everything is ready to go once Brin arrives Tuesday.
And finally, my letter to Cancer:
Cancer,
I could start off by telling you that I hate you, I could sling insults, and accusations, but not today. You’ve changed my life, and my perspective of the world. You’ve given me the gift of compassion, and empathy; you have made me stronger. I’ve had to watch my 4 year old daughter go through pain, and anguish, and you never gave me the ability to take any of it away. I was a spectator to my own horror show, while you tried to do your damage. I’ve lived through your nightmare for a year now, and I've grown and evolved because of it. I now know your tricks, and I’ve built up a wall around my daughter to keep you at bay. The next year I will fight even harder to make sure you are banished from her body. I wish that would be the end of you, but you will find your way into another body. I hope they fight you as much as Brinley did, I hope that you are less and less successful on wreaking havoc on the lives you touch.
M.Pawluk
Monday, November 7, 2011
almost there
The months seem to be flying by lately, it seems like just yesterday we were in the middle of September, and now October is done and out of the way, which leads me to November. I don't have very found memories of November, or an appreciation of the month at all. It use to mean, fall, the changing of colors, the anticipation of Christmas. Now I view the month has a reminder. November 18th 2010, totally flipped our world upside down. The world as we knew it changed and evolved in a way we were completely unprepared for. Brinley was diagnosed with leukemia, and life as we knew it stopped, and a new life began. As the days tick on, I find it hard looking at pictures that I know were taken in the month prior to her diagnosis. Our family had a lovely photo shoot in October, prior to her diagnosis, and looking back at those pictures, I can't help but think about how much she's changed. Not just physically, but in the pictures you see a vibrant, happy go lucky little girl who would do anything to keep up with her older brother. A tiny little girl who loved to dance, and never got tired of running and twirling about. Looking at the pictures (and I do love them) makes me angry. I feel robbed of the little girl I was raising, her personality has changed so much sometimes I can barely recognize her. She has her moments, where in a little second she reviles a small part of who she was, but it's usually masked by the sickness that has been lingering in her system. How awful to know and feel the things her body must feel. I know when I had a stomach flu how weak and terrible, dizzy and foggy I felt...and that was only for a week. But to have those feelings 90% of the time? To have to deal with that, and worse? It breaks my heart.
We're coming up to our first year, and I don't feel happy, or relieved. I feel dispare, nostalgic, and I have a pit sitting in my chest. I've learned a lot in this year. Most of which I have been able to store in my brain, and some that I have books of notes to keep track. I have an expert when it comes to dealing with "Brin VS Leukemia" and I've become to fellow warrior in this battle. But I still miss the days when we were at peace.
There are still a few hurdles that I have to make, mainly in dealing with the anger and pain. I don't expect it'll go away soon, each day I think it's gotten better and then one bad day ruins the process of healing a bit. There are certain things that trigger my emotions, usually completely unexpected things that send me back, sometimes it's a smell, or a song, (21 Guns by Green Day, can't listen to it, it was playing on the radio Novembers 20th, it was my weekend to go home right after Brin had her first dose of chemo, and the lyrics still make me cry like a baby).
The year mark is around the corner, it's coming, whether I want it to or not the "anniversary" wears on my mind. I hate that I give a date so much power over me. Maybe in years to come I'll be bale to take a little bit of that power back.
We're coming up to our first year, and I don't feel happy, or relieved. I feel dispare, nostalgic, and I have a pit sitting in my chest. I've learned a lot in this year. Most of which I have been able to store in my brain, and some that I have books of notes to keep track. I have an expert when it comes to dealing with "Brin VS Leukemia" and I've become to fellow warrior in this battle. But I still miss the days when we were at peace.
There are still a few hurdles that I have to make, mainly in dealing with the anger and pain. I don't expect it'll go away soon, each day I think it's gotten better and then one bad day ruins the process of healing a bit. There are certain things that trigger my emotions, usually completely unexpected things that send me back, sometimes it's a smell, or a song, (21 Guns by Green Day, can't listen to it, it was playing on the radio Novembers 20th, it was my weekend to go home right after Brin had her first dose of chemo, and the lyrics still make me cry like a baby).
The year mark is around the corner, it's coming, whether I want it to or not the "anniversary" wears on my mind. I hate that I give a date so much power over me. Maybe in years to come I'll be bale to take a little bit of that power back.
Tuesday, October 11, 2011
Poor Neglected blog
Its been a while since I’ve done this, and looking back at the last entry I can say I’ve been sort of MIA due to the on going craziness that has consumed my life. I can’t say preparing for a move is easy, it's especially challenging with two small kids, throw in a trip to Florida, packing, hospital visits, and did I mention this was an international move? And with that comes paperwork. Anyways it has been a fun few months, lots of coffee binges, deep breaths, and constantly thinking to myself “what the hell am I doing?” But we made it, we’re here and we’re home.
As I had mentioned we spent most of June/July and August packing and purging. Brinley had her last appointment at the Stollery on august the 26th. She had her monthly dose of chemo with another lumbar puncture and chemo done through her spine. Everything went well, the goodbye to the doctors was a big tough. It’s hard to leave a team that has been more than wonderful to your very sick child. It’s stepping into the unknown that really makes me sick with worry, “will the new team of doctors care for her as well as the first team of doctors? Will they mesh well with her personality? What if she hates them? What if she’s just as terrified as I am?” I cannot begin to describe my anxiety. For the last 9 months I handed my daughter over to the pediatric oncologist and nurses on 4E3 and trusted them with one of my most precious little humans, and said “you make her well, all I can do is comfort her and hold her, but you have the key to her recovery” and now I have to do that over again. It’s not such an easy feeling, and I wish it was.
I remember my first walk through the oncology floor, and the first time I had met Brinley’s team and thinking, “I do not want to meet you, it is not nice to meet you” (harsh I know, but I was in a dark place) and with each visit, I looked forward to seeing them more and more. Dr Desai, Nettie, Wendy, Roxanne, Rea Lee, Leah, Karina and Louis, each one handled Brinley with such ease and love that it was hard to let go and say goodbye. I hope our paths will cross again. I love them because they loved Brin.
Moving on…
We had our first appointment with the Phoenix Children’s hospital 2 weeks ago. I was nervous to say the least, but once I had met Brins new doctor I felt much better, she is a warm caring doctor and Brinley took to her immediately. She was also kind enough to transfer us to the east Children’s hospital in east Mesa, so instead of driving an hour and 20 mins, we only have to drive 20-30 mins. So not only will her treatment be closer, but we wont have to transfer doctors again.
In other news Brinley got very sick last week, she took a bit of a turn from being happy and perky to being incredibly lethargic, vomiting, and then came the fever. After a few days of being tired and sick the doctors concluded she probably had the stomach flu. Then once the fever kicked in, I called the clinic and they told me to come in right away. It's strange how my brain automatically goes to, "oh no, is she relapsing?" I mean, the last time we thought she had a "virus" she had cancer...so am I repeating the past? It's such a dark gross place to be, you go into panic mode and it's hard to reel yourself back in. So there we are, sitting in the doctors office waiting for blood work to come back. The good news is that her blood work was just fine, her hemoglobin was down a bit, which explains her being so tired all the time, but everything else was just fine. So from there we prepared for an obvious blood transfusion for the next morning. I have to say, those blood transfusions are better than coffee...one moment Brinley was totally out of the game, and within an hour she was happy and full of energy! What a turn around!!
In other news, Carter got a new dog. He's been begging us for a while to get one of his own, HE wanted to be the master. Over the last month or so, we've been telling him what being a "master" means, and that its not all fun and games, owning a dog comes with huge responsibility. So then came little Lou. Carter named him by himself, and I'm thrilled to say, he totally takes care of him all on his own. He goes outside and cleans up the mess without being asked, he makes sure that Lou doesn't go potty in the house, and constantly plays with him. So far, it's been a great fit for the Pawluk family.
I leave you with some photos, and promise to blog more...after our stuff arrives...and I unpack...*wink* *wink*
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| Getting IV fluids after days of vomit that resulted in a fever |
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| Carter and Lou |
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| weird IVAD port |
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| Feeling much better after new blood |
Thursday, July 28, 2011
That Place
Today was Brinley's monthly chemo treatment at the hospital, her blood tests came back decent, not amazing, but she's trucking along and that's all I need. This kid handles treatment like a champ. She's almost excited to go, bouncing off the walls giddy. Mainly because when she hears that we're going to the hospital, she figures it'll be a day of crafts, poke prizes and getting spoiled by the staff. She's well aware of the routine of pokes, chemo, questions, and physicals, but the prizes and crafts out shine all of those things. She sits well for her IVAD access, doesn't flinch or frail about, she just takes it on the chin and moves forward. I've said it many times before, I'm in awe of this little girl. She could seriously teach me a lesson or two in acceptance.
It's no surprise to anyone now that I hate hospital days. I loathe them. I try every morning to wake up and smile, prep Brinley with magic cream (numbing cream), grab my coffee,head out the door, and just keep positive...but I fail miserably. It starts on the drive in, my legs start to get jittery, almost numb and noodley, I'm happy to be sitting and driving because if I was standing I may fall. As I get closer to the hospital and feeling moves up my body. My stomach does flips and turns, my heart starts to race and I have to take deep breaths. I hate this routine. Then I feel this lump of sad in my throat, like I can't choke it down, try as a I may, it hits my eyes. I try to blink away some of the tears, try glancing off in another direction, because maybe if I see something on the side of the road, I will be distracted enough to forget how sad this drive makes me. It never works. A few tears manage to always find their way out. I wipe them away before the kids catch on. It's no surprise that the time we leave the hospital I want to lay down and sleep for the rest of the day. It kind of leaves you in a fog. Sometimes I find myself thinking that maybe front line treatment was easier to deal with because you don't forget that dreading feeling, you're completely aware that your life is anything but normal, you see weekly visits keep you "in check" with your reality. But once you move to maintenance, (and yes it's a HUGE lovely exciting deal) but you forget your position a little, the feelings of helplessness evade you for a month, and you kind of forget about it. Out of sight out of mind....but then you have to go back to that place, the sad/helpless/depressing/overwhelming place of pediatric oncology.
So that's what I'm feeling today, heavy right? There's sometimes when I can't turn my head off, I get so blogged down with my thoughts that I can't shut off. This has helped today. Next month Brin will have surgery again, I can only try and prepare myself for these feelings to be magnified a bit more.
It's no surprise to anyone now that I hate hospital days. I loathe them. I try every morning to wake up and smile, prep Brinley with magic cream (numbing cream), grab my coffee,head out the door, and just keep positive...but I fail miserably. It starts on the drive in, my legs start to get jittery, almost numb and noodley, I'm happy to be sitting and driving because if I was standing I may fall. As I get closer to the hospital and feeling moves up my body. My stomach does flips and turns, my heart starts to race and I have to take deep breaths. I hate this routine. Then I feel this lump of sad in my throat, like I can't choke it down, try as a I may, it hits my eyes. I try to blink away some of the tears, try glancing off in another direction, because maybe if I see something on the side of the road, I will be distracted enough to forget how sad this drive makes me. It never works. A few tears manage to always find their way out. I wipe them away before the kids catch on. It's no surprise that the time we leave the hospital I want to lay down and sleep for the rest of the day. It kind of leaves you in a fog. Sometimes I find myself thinking that maybe front line treatment was easier to deal with because you don't forget that dreading feeling, you're completely aware that your life is anything but normal, you see weekly visits keep you "in check" with your reality. But once you move to maintenance, (and yes it's a HUGE lovely exciting deal) but you forget your position a little, the feelings of helplessness evade you for a month, and you kind of forget about it. Out of sight out of mind....but then you have to go back to that place, the sad/helpless/depressing/overwhelming place of pediatric oncology.
So that's what I'm feeling today, heavy right? There's sometimes when I can't turn my head off, I get so blogged down with my thoughts that I can't shut off. This has helped today. Next month Brin will have surgery again, I can only try and prepare myself for these feelings to be magnified a bit more.
Sunday, July 24, 2011
Changes
I've been avoiding writing/venting about this for a while. And maybe word "venting" isn't the most appropriate word, because usually venting goes hand in hand with dislike, and I can't very well say I "dislike" the situation. The situation itself is exciting, and nerve wracking all at the same time, the adventure into the unknown...ish.
We're moving. As in done, over final. We sold the house and are Arizona bound in September. Blake was transferred with his company and he will be managing the Honeywell training accounts in the US in the US. This move as been going forth since June, and suddenly with packing, and making arrangements it has become very real. I'm nervous about it because Arizona will not be the same it was when we left, I've been mentally preparing myself that change. When we lived in Arizona we weren't parents, life was different and I'm embracing that change. This also leaves me nervous because we're leaving a lot when we leave Edmonton. We've been fortunate enough in life to have many friends and family who have really pulled together in the last 7-8 months and become a support team for us, these are the people who have created a soft place for us to fall and a rock to lean on. In a strange way, I feel like I'm slapping those lovely people in the face when it comes to this move...it's an uneasy sad pit of a feeling. I hate leaving Team Brinley...
Again, this relocation comes hand in hand with ...MOVING...yes the physical move, the packing, the organizing, the purging...all things I dislike.
However...I'm excited. Excited to see old friends, looking forward to no snow, warm weather, new house (not the house hunting part...blegh) I'm excited for whats to come. It may not be all sunshine and butterflies, but the idea of something new can be a thrill.
And of course, I'm also sad. This was our first home as a married couple. This was the first big investment we bought together. This is where I brought my babies home from the hospital. It holds so many memories for us, some good, some bad, but mostly good memories. I will miss these walls, I will miss my home.
I will miss the exceptional care Brinley has received in the last 8 months. This has been a a hot topic between her and I. She doesn't like the idea of a new doctor, or new nurses, because, "What if they don't know how to poke me so it doesn't hurt?' It's not an easy thing trying to reassure her that everything will be ok, she's adapted so well to her environment that changing it seems almost cruel.
Moving along...
I was lucky enough to see my best friend this weekend. She has been my best friend since I was 10 years old and she liked my lunch better than hers, and something clicked. Tawnya is someone who has always been there for me, no matter what, and as we've gotten older...nothing has changed. We still laugh at the same stuff we did 19 years ago, and we usually laugh so hard that one us ends up with the hiccups....I'm sad to be further away from her, she's been a rock for me, especially when it comes to dealing with Brinley. I will miss her tons, but I know even moving back to Arizona won't change that bond.
Tomorrow marks the 30 days until this house is someone else's home...let the packing begin!
We're moving. As in done, over final. We sold the house and are Arizona bound in September. Blake was transferred with his company and he will be managing the Honeywell training accounts in the US in the US. This move as been going forth since June, and suddenly with packing, and making arrangements it has become very real. I'm nervous about it because Arizona will not be the same it was when we left, I've been mentally preparing myself that change. When we lived in Arizona we weren't parents, life was different and I'm embracing that change. This also leaves me nervous because we're leaving a lot when we leave Edmonton. We've been fortunate enough in life to have many friends and family who have really pulled together in the last 7-8 months and become a support team for us, these are the people who have created a soft place for us to fall and a rock to lean on. In a strange way, I feel like I'm slapping those lovely people in the face when it comes to this move...it's an uneasy sad pit of a feeling. I hate leaving Team Brinley...
Again, this relocation comes hand in hand with ...MOVING...yes the physical move, the packing, the organizing, the purging...all things I dislike.
However...I'm excited. Excited to see old friends, looking forward to no snow, warm weather, new house (not the house hunting part...blegh) I'm excited for whats to come. It may not be all sunshine and butterflies, but the idea of something new can be a thrill.
And of course, I'm also sad. This was our first home as a married couple. This was the first big investment we bought together. This is where I brought my babies home from the hospital. It holds so many memories for us, some good, some bad, but mostly good memories. I will miss these walls, I will miss my home.
I will miss the exceptional care Brinley has received in the last 8 months. This has been a a hot topic between her and I. She doesn't like the idea of a new doctor, or new nurses, because, "What if they don't know how to poke me so it doesn't hurt?' It's not an easy thing trying to reassure her that everything will be ok, she's adapted so well to her environment that changing it seems almost cruel.
Moving along...
I was lucky enough to see my best friend this weekend. She has been my best friend since I was 10 years old and she liked my lunch better than hers, and something clicked. Tawnya is someone who has always been there for me, no matter what, and as we've gotten older...nothing has changed. We still laugh at the same stuff we did 19 years ago, and we usually laugh so hard that one us ends up with the hiccups....I'm sad to be further away from her, she's been a rock for me, especially when it comes to dealing with Brinley. I will miss her tons, but I know even moving back to Arizona won't change that bond.
Tomorrow marks the 30 days until this house is someone else's home...let the packing begin!
Monday, July 18, 2011
Family Adventure
We're back! We had an amazing time in Florida, I can't even put into words how amazing the trip was.
First off a limo came and picked us up to take us to the airport, Brin was over the moon that she was able to ride in a princess car. Both kids were so excited on the way there. Once we got settled into the airport, they played until we got onto the plane...at 1250am....never again. Red eye + tired excited kids = melt downs. They both passed out on both of the air planes, but Carter had a hard time going from plane 1, to plane 2 because he was so sleepy. Even though it was 6am Toronto time, it was only 4am on his watch. On the plane from Toronto to Orlando the west jet pilot came onto the speaker to let the rest of the plane know that they were flying with with Brinley for her Make A Wish trip and the whole plane erupted in applause...it was hard to not get teary about it, even for Blake. Oh and did I mention, while we're eating brekky in Toronto, our waiter came up to us and told us that the meal was "taken care of by the lady sitting in the corner" I had to send Blake over to say thank you in fear of bawling my eyes out. Turns out that her son passed away before his wish was granted. So needless to say, we kicked off this journey with a lot of raw emotions.
Once we got settled into GKTW (give kids the world) we took the kids for a nice swim, and dinner and ice cream to follow. I cannot say how amazing this place is. They spoil you rotten, kids and parents alike. The kids were treated to ice cream whenever they wanted, Santa visits, gifts left in their room every day, "kids night out" (yes no parents allowed) candy land night, you name it...these kids got it! The villa was lovely, lots of space and very comfortable.
We took the kids to Sea world on our first full day there, they got to feed dolphins, stingrays, and sharks! We took in a whale show, and then got to experience the full Florida rain experience...and let me tell you, when it rains it pours...for a long long time! There were some places in Sea world where the water was almost up to your knees because it couldn't drain fast enough. It was awesome! The Thunder was a bit loud, but after a few good BOOMS the kids got use to it. By the time we got to our van we were soaked...totally soaked.
2nd day we took the kids to Disney World Magical Kingdom. WOW!!!! We first kicked off with a pirate and princess make over, followed by lunch with the princesses. The first princess at our table was the fairest of them all...Snow White...and Brinley HATES Snow White. I have no idea why, but Brinley doesn't like her, what-so-ever, and she made it very clear but turning her nose up and giving 'Ol Snow White and Brinley Ryann SNUB. We tried passing it off as shyness...partly out of embarrassment. The rest of that day flew by, we knocked the park out in a single day...getting in the front to every line really helped, instead of 3 hour wait times, the longest we waited for a ride was maybe 5 mins...on ALL of the rides including universal studios.
Day 3, 4, 5, 6, we staggered Disney World and Universal and it worked out well. We had Carter's birthday in Universal and ate lunch at Captain America's diner, which he was over the moon about. I still can't believe my little man is 6 years old. Everything went by so fast it's almost like a dream, but we had a great time, made lots of memories and now it back to real life. And right now my real life is consumed with packing, BOO!
I'll post more some picture when I can, I put a bunch on my laptop while we were in Florida, but my laptop has taken a dirt nap. Once I get it back from Dell I'll post them!
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First off a limo came and picked us up to take us to the airport, Brin was over the moon that she was able to ride in a princess car. Both kids were so excited on the way there. Once we got settled into the airport, they played until we got onto the plane...at 1250am....never again. Red eye + tired excited kids = melt downs. They both passed out on both of the air planes, but Carter had a hard time going from plane 1, to plane 2 because he was so sleepy. Even though it was 6am Toronto time, it was only 4am on his watch. On the plane from Toronto to Orlando the west jet pilot came onto the speaker to let the rest of the plane know that they were flying with with Brinley for her Make A Wish trip and the whole plane erupted in applause...it was hard to not get teary about it, even for Blake. Oh and did I mention, while we're eating brekky in Toronto, our waiter came up to us and told us that the meal was "taken care of by the lady sitting in the corner" I had to send Blake over to say thank you in fear of bawling my eyes out. Turns out that her son passed away before his wish was granted. So needless to say, we kicked off this journey with a lot of raw emotions.
Once we got settled into GKTW (give kids the world) we took the kids for a nice swim, and dinner and ice cream to follow. I cannot say how amazing this place is. They spoil you rotten, kids and parents alike. The kids were treated to ice cream whenever they wanted, Santa visits, gifts left in their room every day, "kids night out" (yes no parents allowed) candy land night, you name it...these kids got it! The villa was lovely, lots of space and very comfortable.
We took the kids to Sea world on our first full day there, they got to feed dolphins, stingrays, and sharks! We took in a whale show, and then got to experience the full Florida rain experience...and let me tell you, when it rains it pours...for a long long time! There were some places in Sea world where the water was almost up to your knees because it couldn't drain fast enough. It was awesome! The Thunder was a bit loud, but after a few good BOOMS the kids got use to it. By the time we got to our van we were soaked...totally soaked.
2nd day we took the kids to Disney World Magical Kingdom. WOW!!!! We first kicked off with a pirate and princess make over, followed by lunch with the princesses. The first princess at our table was the fairest of them all...Snow White...and Brinley HATES Snow White. I have no idea why, but Brinley doesn't like her, what-so-ever, and she made it very clear but turning her nose up and giving 'Ol Snow White and Brinley Ryann SNUB. We tried passing it off as shyness...partly out of embarrassment. The rest of that day flew by, we knocked the park out in a single day...getting in the front to every line really helped, instead of 3 hour wait times, the longest we waited for a ride was maybe 5 mins...on ALL of the rides including universal studios.
Day 3, 4, 5, 6, we staggered Disney World and Universal and it worked out well. We had Carter's birthday in Universal and ate lunch at Captain America's diner, which he was over the moon about. I still can't believe my little man is 6 years old. Everything went by so fast it's almost like a dream, but we had a great time, made lots of memories and now it back to real life. And right now my real life is consumed with packing, BOO!
I'll post more some picture when I can, I put a bunch on my laptop while we were in Florida, but my laptop has taken a dirt nap. Once I get it back from Dell I'll post them!
Tuesday, June 28, 2011
Single Digits
For the last 2 months the kids and I have been counting down the big family trip. On July 6th we will be traveling to Disney world with my parents. As the day draws closer we all get more and more excited for this vacation. It's been over a year since Blake and I have been to a destination vacation, 2 years sicne we've taken the kids on a vacation to Arizona, and a good 6 years since my parents helped us move here from Arizona...so I'm not sure you can even call that a vacation!
Next week Brinley will go back to the hospital for her second round of chemo in maintenance. She'll have blood work done, and go for vincristine which is usually a 10 mins IV drip. She also will be on those lovely little steroids once again, but only for a week. The last time she was on DEX the mood swings hit her pretty hard around the 2nd day, the eating however didn't kick in until the week after, when she was off of the steroids. So according to my calender, her mood swings should be tapering off the first few days we're in Disney world but then the eating will be full effect while we're there....lots of eating...in happiest place on earth.
I really hope this next dose won't put her out of commission for the week we're there. She usually bounces back pretty good, I don't want this to be the time she doesn't.
I'm really trying to get back into the swing of things and back to frequent blogging. For a while I just felt like a broken record, relaying how I was feeling, how treatment was effecting Brinley and everyone around her. In part I just wanted it all to stop and go away. I found as maintenance got closer, the more angry I became. I know it sounds backwards, I should have been happy we're going into maintenance right? And I was....but I was also on the tail end of hospital visits every week for nearly 7 months. I started to resent it, I hated walking the same hall ways, seeing the same faces (even though they are the nicest kindest faces ever) I was angry about every part of taking Brinley to the hospital, and not at her, never at her...but angry at our reality. Quiet days at home had changed to mornings rushing off to the hospital, IVAD pokes, chemo, lumbar punctures, and waiting. Waiting to get to this place that is maintenance. Waiting for peace, a sigh of relief, and the energy to refocus our life a little bit. But we're here, and as much as I'd like to say "it was all worth it" I don't know if I feel that way right now, or if I ever will....guess time will tell.
I stole this from my friend Lisa, I hope she doesn't mind, but it's very fitting.
Next week Brinley will go back to the hospital for her second round of chemo in maintenance. She'll have blood work done, and go for vincristine which is usually a 10 mins IV drip. She also will be on those lovely little steroids once again, but only for a week. The last time she was on DEX the mood swings hit her pretty hard around the 2nd day, the eating however didn't kick in until the week after, when she was off of the steroids. So according to my calender, her mood swings should be tapering off the first few days we're in Disney world but then the eating will be full effect while we're there....lots of eating...in happiest place on earth.
I really hope this next dose won't put her out of commission for the week we're there. She usually bounces back pretty good, I don't want this to be the time she doesn't.
I'm really trying to get back into the swing of things and back to frequent blogging. For a while I just felt like a broken record, relaying how I was feeling, how treatment was effecting Brinley and everyone around her. In part I just wanted it all to stop and go away. I found as maintenance got closer, the more angry I became. I know it sounds backwards, I should have been happy we're going into maintenance right? And I was....but I was also on the tail end of hospital visits every week for nearly 7 months. I started to resent it, I hated walking the same hall ways, seeing the same faces (even though they are the nicest kindest faces ever) I was angry about every part of taking Brinley to the hospital, and not at her, never at her...but angry at our reality. Quiet days at home had changed to mornings rushing off to the hospital, IVAD pokes, chemo, lumbar punctures, and waiting. Waiting to get to this place that is maintenance. Waiting for peace, a sigh of relief, and the energy to refocus our life a little bit. But we're here, and as much as I'd like to say "it was all worth it" I don't know if I feel that way right now, or if I ever will....guess time will tell.
I stole this from my friend Lisa, I hope she doesn't mind, but it's very fitting.
Susan Sontag in her work Illness as Metaphor said this:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at lease for a spell, to identify ourselves as citizens of that other place.
Tuesday, June 14, 2011
Stuck in the moment
Well, wow this is long over due. I can't lie, I'm caught up in the world of maintenance right now and thoroughly enjoying every week that passes that we don't have to drive into the hospital.
The first week of maintenance is behind us and we're on to the second and things have been going well. During the first week we had a bit of a battle with nausea and Brin had a hard time keeping food down. We tried different forms of zofran, and have finally found that having her swallow a zofran melt away works best for Brin. Last Thursday she had her methodrexate dose, which sent me running to the computer to look up side effects, as the days following were a bit rough. Brin woke up Friday with a major headache and a pair of very very sore legs. When she did walk around the house she would be on her very tippy toes again, trying to release some of the pain in her legs. I gave her morphine and it helped a little bit, but she was still in a lot of pain. She ended up sleeping most of the day away. The days following she really picked up and bounced back pretty quick. I haven't been letting her play soccer at all, mainly afraid of her "over -doing" and getting sick. Something I want to avoid since Disney world is 21 days away!
During this down time I've also had a few moments to sit, be still and really take in the last 7 months. I've felt things that I've never imagined myself capable of feeling. I've put my head in my hands and sobbed uncontrollably, I've had to pry myself away from my daughter, while her eyes close in a number of surgeries she's had. I've had moments of overwhelming joy and sorrow. I've celebrated milestones along the way, and I've cursed at the set backs. I've felt completely helpless and lost, and I've had moments of strength and power. The last 7 months have been a roller coaster, and the ride still isn't over, but each day I find more room to breathe.
So cheers to hair loss, hair growth, fewer hospital visits, and having the energy to run and play. Hats off to those who have encouraged, supported, and helped along the way, even if you were an ear to listen to me rant, thank you, you've made cancer easier to deal with.
The first week of maintenance is behind us and we're on to the second and things have been going well. During the first week we had a bit of a battle with nausea and Brin had a hard time keeping food down. We tried different forms of zofran, and have finally found that having her swallow a zofran melt away works best for Brin. Last Thursday she had her methodrexate dose, which sent me running to the computer to look up side effects, as the days following were a bit rough. Brin woke up Friday with a major headache and a pair of very very sore legs. When she did walk around the house she would be on her very tippy toes again, trying to release some of the pain in her legs. I gave her morphine and it helped a little bit, but she was still in a lot of pain. She ended up sleeping most of the day away. The days following she really picked up and bounced back pretty quick. I haven't been letting her play soccer at all, mainly afraid of her "over -doing" and getting sick. Something I want to avoid since Disney world is 21 days away!
During this down time I've also had a few moments to sit, be still and really take in the last 7 months. I've felt things that I've never imagined myself capable of feeling. I've put my head in my hands and sobbed uncontrollably, I've had to pry myself away from my daughter, while her eyes close in a number of surgeries she's had. I've had moments of overwhelming joy and sorrow. I've celebrated milestones along the way, and I've cursed at the set backs. I've felt completely helpless and lost, and I've had moments of strength and power. The last 7 months have been a roller coaster, and the ride still isn't over, but each day I find more room to breathe.
So cheers to hair loss, hair growth, fewer hospital visits, and having the energy to run and play. Hats off to those who have encouraged, supported, and helped along the way, even if you were an ear to listen to me rant, thank you, you've made cancer easier to deal with.
Thursday, June 2, 2011
CAN-cer
I am so grateful for the people in my life, for the friends and family who have given us unconditional love and support from day one. I am amazed by this little 4 year old girl, who has taught me more about life in 7 months, than I have learned in my full 28 years of life. Brinley handles her reality with such ease and finesse that I'm often left speechless.
Things I have learned:
1. There is never enough pepperoni, spaghetti, hot dogs, or milk in our house when dealing with a 4 year old on steroids.
2. No milestone is too small
3. Cancer does not define Brinley
4. My daughter has to ingest medication that I have to wear gloves to handle
5. My son is a very compassionate protective human
6. lemonade from lemon's/silver linings do exist
7. Sometimes all you can do is laugh
8. I can learn, adapt and cope at the blink of an eye in means to keep positive.
9. My husband is a phenomenal man and father. He keeps me sane.
10. Cancer gives you perspective
I would love to be sitting here saying that Brinley's journey is over. But it's far from over. We have 2 years of maintenance left before she is off treatment. However reaching maintenance is a huge success. The brunt of the treatment is over, the lumbar punctures are now 3 months apart, and she will only get doses of vinecristine once a month. There is oral chemo to be taken at home, as well as methotrexate, but we're down to the nice spaced out monthly visits.
It couldn't have come at a more perfect time, summer is around the corner, Disneyworld is a bit over a month away, and I feel like I've had a piano lifted off my chest. Time to regroup, refocus, and heal.
Wednesday, May 25, 2011
It's been a long time..
It's been a long time since I've sat down and actually published a blog. I have one that I started, then walked away from a week ago. I've been finding it hard to write without sounding like a robot going through the motions trying to get to maintenance with my sanity in tack. So lets rewind to last week...
Monday we were released from the hospital, it felt more like a jail break, Brinley was giddy to go home. Being stuck in a 14x14 room with nothing to do...and with a very demanding, bored, impatient 4 year old is no holiday. Although I don't blame her for being grouchy most of the time, and I'd like to say she actually took isolation better than I had expected. However near the end we were both getting on each others nerves, it was very clear that we don't make very good roommates. Over the weekend Blake came in and rescued me, but only after driving 10 hours to drop Carter off with my parents for the week. Did I mention my husband is a saint? That's right, he drove 10 hours, then volunteered himself to be an inmate of 4E3 room 12 for 24 hours. I was happy to go home, but found that there wasn't a thing for me to do. Blake had taken care of the laundry, dishes, vacuuming, etc etc etc...So I had to sit in an empty, quiet house, by myself. Normally I love moments like this, but this time I felt overwhelmed and sad. My daughter was in the hospital, her body trying to recover from an infection that most of us get and can fight off before we even notice or get sick. My son was 10 hours away because we didn't know what the next week held for us, and simply because we couldn't take care of him, see him off to school, welcome him home, etc. That in itself was a huge hurdle for me. I just wanted my family together again.
The weekend came and the doctors had hope Brinley would be released early because the infection only turned out to be strep. They did another blood culture that came back negative which was great, but we still had the neutropenic factor staring us in the face. Her counts were recovering, but she didn't have an immune system. So instead to being home for Sunday, which I had hoped, Blake and I were able to slip away for a few hours (with the help of our friends) and have our 6 year anniversary dinner. How things can change in a year...Last year we were beach side, drinks in hand, celebrating 5 years of marriage in Mexico. This year we've exchanged that for the Stollery Children`s Hospital. But one thing has stayed the same, I`m still sitting beside this wonderful guy who is keeping my sanity intact with his jokes and easy manner when dealing with this challenging time.
Tomorrow Brinley will start maintenance. Of course this is based on her blood results, and something tells me she will be delayed a week, but nonetheless maintenance is on the horizon. I'm a bit anxious because she will have another lumbar puncture with chemo, and as you know, she doesn't have much luck with anesthetic. So on top of being witness to watching her get put out, I`m constantly wondering, "what if she stops breathing?", "what if they use a bigger needle again and she has migraines for the week?", "what if she wakes up again in the middle of it?"
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| Looking out the window, wanting out. |
The weekend came and the doctors had hope Brinley would be released early because the infection only turned out to be strep. They did another blood culture that came back negative which was great, but we still had the neutropenic factor staring us in the face. Her counts were recovering, but she didn't have an immune system. So instead to being home for Sunday, which I had hoped, Blake and I were able to slip away for a few hours (with the help of our friends) and have our 6 year anniversary dinner. How things can change in a year...Last year we were beach side, drinks in hand, celebrating 5 years of marriage in Mexico. This year we've exchanged that for the Stollery Children`s Hospital. But one thing has stayed the same, I`m still sitting beside this wonderful guy who is keeping my sanity intact with his jokes and easy manner when dealing with this challenging time.
During last week Brin and I stayed home, other than our daily trips to the hospital to have IV antibiotics. Her blood counts have been picking up by themselves which was a relief. For a while her hemoglobin was sitting around 72, and then jumped to 89 so there was no need to transfuse. My parents returned with Carter Saturday evening and I was thrilled to see that smiling face again. I missed him so much.
Tomorrow Brinley will start maintenance. Of course this is based on her blood results, and something tells me she will be delayed a week, but nonetheless maintenance is on the horizon. I'm a bit anxious because she will have another lumbar puncture with chemo, and as you know, she doesn't have much luck with anesthetic. So on top of being witness to watching her get put out, I`m constantly wondering, "what if she stops breathing?", "what if they use a bigger needle again and she has migraines for the week?", "what if she wakes up again in the middle of it?"
I'll be glad when the dust settles.
Friday, May 13, 2011
friday the 13th
I should have updated this yesterday, but I was too busy running around preparing for what I was told would me 10+ days in the hospital.
Wednesday the doctors came in and informed us that Brinley's blood cultures came back positive. There is an infection gr owning in her central line leading to her heart. So they switched up the antibiotics to two different kinds, one is very 6 hours, the other is every 8 hours. The type of infection is gram positive cocci in chains, which could be a number of different infections. We were told yesterday that nothing had come back from the labs, so my mind was in over drive on how I was going to manage the next 10 days in the hospital.
I ran home and packed a bag for Carter because he is now being shipped off to Gramma and Papa's house. Unfortunately, Blake has meetings, and I'm stuck in the hospital with Brinley, so Carter is going to have some good one on one time for grandparents. He's really excited for it. I did get to spend sometime with him Wednesday which was important to both of us, I miss him like crazy when I'm here.
Thursday was a hard day, the whole agony of being away from home and locked in this 14X14 room was getting to me. I missed my husband like crazy, and knowing that he was only minutes away was driving me nuts. Brin had another platelet transfusion because she dropped from 23 to 9. Her WBC was at .6. She also received many her daily doses of antibiotics throughout the day, and refused to eat or drink anything. She was lethargic, and moody to boot. After 24 hours of her not eating, the doctor came in and suggested they insert an NG tube so she could be tube fed. This morning she was eating. Thank goodness no nose tubes! She's not eat much, but at least she's eating, even if its only yogurt, peas, and a few crackers.
Also the news came back that the virus was indeed strep, which means we should be going home this weekend! Carter will still be going to my parents house, because Brinley will still need IV antibiotics everyday for 10 days, but it's a lot better than having to stay here. Her counts have picked back up, platelets are 93, WBC .9, Hemoglobin 87. She may need a blood transfusion before we head home, but that will just give her an extra push to feel better.
I ran home and packed a bag for Carter because he is now being shipped off to Gramma and Papa's house. Unfortunately, Blake has meetings, and I'm stuck in the hospital with Brinley, so Carter is going to have some good one on one time for grandparents. He's really excited for it. I did get to spend sometime with him Wednesday which was important to both of us, I miss him like crazy when I'm here.
Thursday was a hard day, the whole agony of being away from home and locked in this 14X14 room was getting to me. I missed my husband like crazy, and knowing that he was only minutes away was driving me nuts. Brin had another platelet transfusion because she dropped from 23 to 9. Her WBC was at .6. She also received many her daily doses of antibiotics throughout the day, and refused to eat or drink anything. She was lethargic, and moody to boot. After 24 hours of her not eating, the doctor came in and suggested they insert an NG tube so she could be tube fed. This morning she was eating. Thank goodness no nose tubes! She's not eat much, but at least she's eating, even if its only yogurt, peas, and a few crackers. 
Tuesday, May 10, 2011
All you need is love
Well...we're in the big house again. Big house as in the hospital, not jail, although we're in isolation so it's kind of like jail, but nicer. Yesterday Brinley was having issues regarding her temperature, nothing that was considered a "fever" but more or less elevations. Her pattern was 99.9, 97.5, 100.7, 98.3, I called the oncology unit to let them know and they told me to keep her hydrated and keep an eye on her, which I did, so when she spiked to 101.3 I called them to let them know I was bringing her in. When we first arrived the ER was packed, I've never seen it that full in my life, they must have had at least 5 ambulances all at once, plus a full room. The triage nurse told Brin to go find a seat in the waiting room, which is a HUGE no no when dealing with compromised immune systems. I informed her that we were told in the beginning that that we're never to wait in the ER due to high risk infection, she gave me her biggest "I don't give a crap" look and told me "tough". Well tough for you missy because I called Brinley's oncologist and told him that we're sitting in the waiting room, in a matter of seconds after hanging up, the phone behind triage rang, there was a "yes...yes...I'm sorry" and we were called back.
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| This was written on the whiteboard in Brinley's private room. |
Well...we're in the big house again. Big house as in the hospital, not jail, although we're in isolation so it's kind of like jail, but nicer. Yesterday Brinley was having issues regarding her temperature, nothing that was considered a "fever" but more or less elevations. Her pattern was 99.9, 97.5, 100.7, 98.3, I called the oncology unit to let them know and they told me to keep her hydrated and keep an eye on her, which I did, so when she spiked to 101.3 I called them to let them know I was bringing her in. When we first arrived the ER was packed, I've never seen it that full in my life, they must have had at least 5 ambulances all at once, plus a full room. The triage nurse told Brin to go find a seat in the waiting room, which is a HUGE no no when dealing with compromised immune systems. I informed her that we were told in the beginning that that we're never to wait in the ER due to high risk infection, she gave me her biggest "I don't give a crap" look and told me "tough". Well tough for you missy because I called Brinley's oncologist and told him that we're sitting in the waiting room, in a matter of seconds after hanging up, the phone behind triage rang, there was a "yes...yes...I'm sorry" and we were called back.The nightmare didn't end there. We got into a room in the ER and they did a vital check, and a temp read, which was at 104. They then decided to go ahead with antibiotics right away, and then draw blood for labs. The nurse came in and held out two different IVAD needles and said, "which one do you want to access her with". Excuse me? I'm not doing your job...I've never accessed Brin, and I've never wanted to. It's not bad enough that I have to drag her into the hospital kicking and screaming, now you want me to poke her? She then said, "ok well...which needle do they use on her?" I have no idea! I assume it's the small 3/4" needle because of her size, so she preps the 1" needle. As another nurse comes in, she gets the IVAD half way in and says, "there we got it" and I tell her, "no it's still half way out of her chest" so she bares down on the needle to jam it through....Brinley is screaming at this point and I tell her to stop and I want another nurse and a smaller needle. So smart nurse #3 comes in, accesses Brinley without an issue WITH the smaller needle and we're done.
Labs come back 30 mins later, Brinley's hemoglobin is 130 (great) white blood cells are 4 (bad bad bad) and platelets are 9 (super bad). All defenses are down, and she has no immune system. This was something we had kind of emotionally prepared for, and it was a huge possibility that this could happen during the last part of standard delayed intensification. But it's a whole new feeling in itself when you find out you're being admitted, especially since we haven't had to be admitted since we left back in November. For that we're lucky, and the fact that this is her first time being neutropenic is lucky as well. But I did get a little anxious about having to stay here again, it just brings up old feelings, and memories of walking the hallway late at night trying to hold myself together.
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| Getting platelets |
Today so far, Brinley has been remarkable. She's full of energy, happy and fever free. We have to wait for her cultures to come back which takes 48 hours, and she also has to have a good run of antibiotics for 3 days. We'll be here until at least Thursday they say, possibly longer depending on blood tests, cultures, and we need to be fever free for 48 hours. So there is a lot riding on discharge, but there's not much I can do except enjoy the sun from the 4th floor window.
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| Happy |
Saturday, May 7, 2011
One Hundred and Sixty Nine
Friday was the last day of hard core chemotherapy for Brinley. I've never felt so many emotions all at once. I was happy, relieved, frustrated, angry, and sad. Of course being happy and relieved stems from finally being able to see the light at the end of the tunnel involving this disease. I'm thrilled that we're "getting there" we're getting to a beautiful place of healing, and we're now steps closer to being cancer free, or "cured". This is a milestone in a long race, and something I have learned in the last 7 months is that there is no small milestone when dealing with cancer.
However my frustration, anger, and sadness stems from the one hundred and sixty nine days my daughter has spent in pain and distress fighting this evil disease that threatened her life. I'm angry because she's 4, and has had to endure a lifetime of medications, surgeries, procedures, and needle pokes that most people have to endure during a full lifetime. I'm frustrated because cancer isn't prejudice, his victims are chosen at random. I'm sad because Brinley had her first soccer game, it was the first time she refused to take her hat off, she was worried people would laugh at her, or ask her why she doesn't have hair. Even at 4 she has an idea of self image that cancer has tarnished to an extent. There are days that she does amazing and could careless that she doesn't have a strand of hair on her head, and there are days that thinks she's ugly. The other days I asked her, "what am I going to do if I can't kiss your beautiful head?" and she said, "you'll just have to learn to like kissing my hair" fair enough.
The next 2 weeks we have blood draws, we have one on the 12th, and another on 19, and everything is good on the 19th, she will, get another dose of chemo. Then long term maintenance. I do expect her to be delayed the week of the 19th, it seems that it's pretty common, so if that means more relaxing, then so be it. Brinley and I both seem to be battling a cold, and I'm fingers crossed that it doesn't amount into something serious for her. Her immune system has been taking an ass kicking due to drugs, so hopefully it'll pass quickly.
So here it goes, 169 days down, 603 left until off treatment...4840 until she's cured.
However my frustration, anger, and sadness stems from the one hundred and sixty nine days my daughter has spent in pain and distress fighting this evil disease that threatened her life. I'm angry because she's 4, and has had to endure a lifetime of medications, surgeries, procedures, and needle pokes that most people have to endure during a full lifetime. I'm frustrated because cancer isn't prejudice, his victims are chosen at random. I'm sad because Brinley had her first soccer game, it was the first time she refused to take her hat off, she was worried people would laugh at her, or ask her why she doesn't have hair. Even at 4 she has an idea of self image that cancer has tarnished to an extent. There are days that she does amazing and could careless that she doesn't have a strand of hair on her head, and there are days that thinks she's ugly. The other days I asked her, "what am I going to do if I can't kiss your beautiful head?" and she said, "you'll just have to learn to like kissing my hair" fair enough.
So here it goes, 169 days down, 603 left until off treatment...4840 until she's cured.
Tuesday, May 3, 2011
Unphased
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| Beaded Journey, 19/11/2010 to 03/05/2011 |
It's Tuesday, that means Brinley has 3 more days left of ara-c and then we have a 3-4 week breather from all of the chemo. I keep telling myself it's 3 more days, and then we can let her rest. A few more weeks then we're in long term maintenance, and with a sigh of relief there is also a tinge of fear. You mean I won't be getting blood results every week? You mean every sniffle, cough, fever, complaint of pain will set me off? And then what after that? When she's off treatment, it feels like a nail biting game of "wait and see" Don't you wish you could just get a break from yourself sometimes? I tell ya, I'm getting very sick of myself.
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| Pushing around Steve and her new blood. |
Last week Brinley did awesome, despite the chemo everyday she is truly a remarkable little human. To top it all off Brinley's hemoglobin was 60 today...yeah 60! She was full of energy and happiness and she was sitting at 60 the whole time. The doctors were blown away on how lively she was for being so low in counts. Needless to say she had a transfusion, she had to be given 2 full units of blood to bounce back and also give her a little booster for this weeks chemo. She sat for the whole 4 hour transfusion and didn't say a word, she watched 2 movies, we played a few games, read a few books, but she was absolutely perfect. She did ask why she needed new blood again and I told her because her old blood needed help, and she said, "why because my bones are making sick blood?" Something like that Brin. Tomorrow we're back at it, but only for a quick little chemo push, and back home to send Carter off to school. She also starts soccer again tomorrow evening *gulp* she's looking forward to it, even if that means she wears a jersey and sits on the side lines cheering.
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