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

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.

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!

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!

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.

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.

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. 

CAN-cer

7 months and 2 weeks.  She's done it, she's in maintenance. Today I put my brave mommy face on, I smiled through the tears of joy and squeezed my baby tight, she has hit another milestone in this long journey.  I cannot believe that we're here, looking back I always knew we'd make it, but the reality is setting in and it's overwhelming.

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.