Notes from the Clink

We're on day 5 of being holed up in the hospital. You would think that this is something I've grown use to due to the last two times being stuck in the cancer pit but that just isn't so.  After months of being free to roam about you tend to forget what it feels like to have to sit bed side to a sick child.  I always find that I enter the same patterns when we're admitted.  The first 2-3 days, I'm happy mom abiding by the hospital rules and regulations.  I happily sit in the play room, play "shopping" and do endless crafts that we cart off to our cell ..err room and hang on the walls. Then days start to run together, I find myself repeating questions, or having a conversation with Brinley's nurse, and pausing because I remember having the same conversation yesterday. By day 4, I want answers, answers that cannot be obtained by looking in a book, or hassling the doctors about.  These answers are in the blood work.  Every morning at 4am the nurse enters our room to draw blood, and every morning at 8am the results are in. I sit there waiting for the good, or bad news. Good news being that we can go home, her counts have picked up and we are FREE, but instead I get the bad news, "her counts are up but not enough" or, like this morning, "her counts have dropped, you're probably going to be here for a few more days" with each 8am crash, I beg the day to move by quickly so we can get to the next 8am news.

Today has been particularly rough because Brinley hasn't been feeling well.  Last night she had her IVIG transfusion where they checked vitals every 15 mins over the course of 4 hours to make sure she wasn't having a reaction.  This stretched into the early morning for us, so when 8am rolled around neither one of us was ready to wake up.  But the hope that her ANC was up to 200 forced us both to get ready for the day.  Only to have the nurse confirm that her counts actually dropped from 137 to 105...fuck (sorry mom).  To top that off, her mouth swab came back positive for a viral infection and we're now on "contact isolation" meaning we're on lock down.  No playroom, no walks, just sit and wait.  Of course even sitting and waiting can't go smoothly, nope not today.  Brinley is now suffering from migraines.  After a dose of Oxycontin she was still crying her eyes out in pain, so what the heck lets give her some morphine and see if that helps.  After sitting on her bed, holding her, and rocking her for a good hour, she pokes her little head up and says, "mom, put me down I have to puke".  Sure enough, she wretches enough to cover the floor, grabs her head and starts sobbing.  I'm scrambling now to ring the nurse, reassuring her that it's ok that she threw up on mommy's socks, and rushing her to the toilet before I get caught in the line of fire again. After getting her cleaned up she's given a dose of zofran and now she's passed out, for what I assume will be the rest of the night.

...and now I will quietly sit and wait for 8am

Burning out

Today was yet another milestone.  One I'm kind of takingg in quietly because I'm stuck in my own head lately. In a year from today, Brinley will be OT (off treatment.) The idea of off treatment worries me, it gives me crazy anxiety, and I literally feel sick.  I suppose I should be excited about not having to hit up the hospital every month, I should probably be at ease that treatment is over and we can resume what most would consider a normal life?  However off treatment takes on a whole new role inside my brain.  OT for me means no monthly check ups, and no blood counts to see how her body is responding or, isn't responding.  Again, I enter the world of unknown, and "what if"  it's a place I don't do well in. 

I have to admit, I was doing really good up until today.  Brin's appointment started off well, and when I was worried about her hemoglobin being down, I was surprised that it can actually went up! First time in 5 months since it's been over 9!(below 8 calls for a transfusion) What I wasn't prepared for was that her ANC dropped from 2400 to 516.  Which means in 2 weeks time we'll have to head back to the hospital for another CBC, and fingers crossed it'll go back up.  Hopefully before she catches something from herself..or someone else.  These are the days I spend worried and beating myself up, especially if something goes wrong. "Why did I let her play outside?" "I shouldn't have taken her to the movies" "maybe she caught something from the restaurant we had dinner at."  At the same time she might just float through and be just fine.  But I've been in this situation before, and it ended with 10 days of isolation in the hospital.  To add to the mess, Brinley has been battling a cold on and off for 5 months now, which has spurred her doctor into checking her immunoglobulin count (her IgG to be exact) to see if she even has the ability to fight this off once and for all.

So there is it, I'm totally running out of steam.  I'm so sick of dealing, and coping.  I realize I have no other choice in the matter, but I wish I did.  As my husband always says..."If you don't like it, fix it.  If you can't fix it, find a way to cope". I just feel like my coping abilities are wearing very thin...

2011 won't be missed.

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.

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.

December 2010

december 2010

december 2011

november 2010

december 2011

Happy Holidays to everyone!

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.

http://mpawluk.blogspot.com/2010/12/in-begining.html

I know it was dated Dec 12^th, nearly a month after she was diagnosed, but it was written November 20^th, 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.

-          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.

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 19^th, 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.

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

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.

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 26^th. 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. 

So now we’re in Arizona, and we finally have a house.  The last house we were geared up to buy fell through…or we pulled out of the deal due to dealing with crazy sellers.  We ended up buying a bank owned home and closing in 3 weeks.  It was a nice feeling to have the deal done and a place to call home.  Now it needed a lot of work, and I didn’t buy the house because I loved it just the way it was…I bought it because I could see the potential.  So far we have painted, installed new lights, had the tile professionally cleaned, and added new carpet throughout.  And I have to say, I LOVE IT.  I keep smiling and saying “this is our home…this is OUR home”  Don’t get me wrong, I loved the house in Edmonton, but we bought it ready to go, the house literally needed nothing.  I didn’t have to do much to make it our own, I took it for what it was and went with it.  This house we made our own. Yes it’s far out, but I like it, it’s quiet and I have everything I need close by.

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*

Getting IV fluids after days of vomit that resulted in a fever

Carter and Lou

weird IVAD port

Feeling much better after new blood