Thursday, December 23, 2010


-the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity

         We're are officially in remission. I couldn't be more thrilled, or scared for that matter.  I'm thrilled that Brinley is following protocol, she has stayed on a steady path, and so far so good. We have now started our consolidation phase, which lasts a minimum of 6 1/2 months.  Today Brinley had her 3 doses of chemo, and tonight she will start her oral chemotherapy at home. 

        She will be taking the oral chemo for 29 days, every night before bed, and then on Thursdays, she will have her lumbar puncture and the spinal chemo, she just knows it as 'surgery'.

       Then after the 29 days are up, she will start on a 57 stint of vincristine, and methotrexate every 10 days, in this phase her methotrexate will start at 100mg, and go up by 50 every dose.  She also will only have one spinal chemo done.

     Then we start a 29 day therapy of thioguanine, cytarabine, vincristine, doxorubicin, PEG-asparaginase (one shot) and she will have small doses of dexamethasone a few days at a time.

     After ALL of this...she will hopefully be into the maintenance phase of her disease, and that means chemo once a month.

     It seems confusing, and hard to grasp sometimes, I'm grateful to the amazing staff at the stollery, they are able to take the time and explain to the tiniest detail.  They can't tell me how she will be, or react because every child is different, but they can prepare me for what could happen. 

      I am also proud to report that everyday Brinley is more and more like herself.  She's almost back to her happy go lucky bouncy self. Right in time for Christmas too! I just hope with tonight and tomorrow's dose of chemo she won't be sick. Her need to eat and sleep is tapering off too which is nice to see.  Yesterday was the first day she actually played with her toys since OCTOBER!

     Today while at the hospital the Kids With Cancer Society gave her a rolling suitcase FULL of loot.  She got my little pony toys, coloring books, crayons, as well as two huge over night kids full of things that a parent and child may need for an extended stay.  And not those little silly travel sized bottles of shampoo, the regular sized ones.  I was shocked!

Tuesday, December 21, 2010

consolidation here we come

The hospital called today about Brinley's urine test that was done on the Saturday Blake had brought her in with a fever.  Looks like monkey has a UTI. So after telling her no more medicine everyday, looks like we have 10 days of antibiotics. On top of it the chemo is starting to wear on her nerves and you can see it when she walks.  She has always walked on her toes, but lately it seems more severe, as if she's trying to relieve some kind of pain in her muscles.  Watching her sit on the floor is painful because she moves like an 90 year old woman with prosthetic hips.  Her arms hurt and she often complains of her bones being sore, thank god for codeine. Even though she's much happier, and perky, her body is taking a toll with all the effects from chemo, and it will only get worse.  Even though the cytarabine and methotrexate  are fed into her cerebral spinal fluid to avoid some of the pain and nerve damage, it's not ALL avoidable.

I called her oncology unit today and found out that not all of her results are in, but some of them are.  Based on those results it looks like we will be starting consolidation on thursday.  Brinley will undergo 3 more *different* doses of chemo, and have another surgery, and more than likely take oral chemo home. Blake will also come with us because we will probably meet with her doctor to discuss her new 6-7 month protocol.

Looks like another very long thursday is in store.  I just hope she's not super sick for christmas, and can actually enjoy her gifts.

As a parent, witnessing this, and living in these moments, it really plays on your nerves. Most of the time I feel like I'm barely holding it together, and there are times where I feel so removed from the situation I just want to avoid, avoid, avoid.

Sunday, December 19, 2010

Exercising Protocol

So first, I will start off saying that Brinley is doing very well.  Imagine a huge balloon with a smallest tiniest pin prick, and all of that air is leaving.  That is my little girl, each day she slow deflates back into the old Brinley-Roo. Each day her cravings lessen, and she becomes less irritated with my existence, it's a lovely thing.  Even though her hair is falling out more and more, her personality is less grouchy and more...Brinley.  I'm also thrilled that she only has to take an antibiotic 3 days a week now, less medication means less negotiating on my behalf...which is good because I'm running out of options.
cuties ready for the party
         On Saturday we had a Christmas party to attend, an event I was super looking forward to, mingling with adults, gets a thumbs up from this cooped up momma.  The kids were well behaved, and happy to go, Brinley was especially thrilled to get dressed up in a new party outfit.  Around 6pm she felt a bit warm to the touch, so I took her temperature (yes I carry a thermometer with me everywhere). Her temp was 37.9 and it stayed there for a bit, then went to 38.2, at the hospital they tell you over and over that any elevation in body temp is an emergency.  For a few reasons, but one major reason is that if her body is fighting off an infection her temp will rise, part of that "infection" could be cancer cells multiplying again, relapse.  Lucky for us this was not the case with Brinley, they took her blood and her counts were good, and whatever her body was fighting off, her blood was healthy enough to do that on it's own. SIGH OF RELIEVE. 

It was a first time scare since she's been diagnosed, and one we will probably revisit many times again, but now we know what to expect so it's a little less scary, just a little bit.

Once Blake and Brin arrived back home she was in a good mood and ready for bed. Once she was settled back in Blake and I just looked at each other, knowing exactly what the other was thinking..."yep this is our life for a while now, sit down and get comfortable"

before decadron
after decadron

Friday, December 17, 2010

Stuck in the in between

Brinley's IVAD, incase you're wondering
Yesterday we reached out 29th day of induction. At 6am Brinley took her last dose of dexamethasone and away we went to the children's hospital.  Her procedure today was to have a lumbar puncture, and another Intrathecal methotrexate, and cytarabine, but that wasn't until 1pm. Brinley was had her IVAD accessed without any issues, and her blood work was looking good.  The wait was a bit brutal, just based off the fact that I had given her a steroid that makes her crave food...and she can't have anything to eat or drink until 1pm.  But Brinley was a champ, she sat quietly and patiently waiting not saying much and at the odd time would play with her brother. Oh yes I brought Carter! I was super glad i did because he did amazing, and he was able to take part in making Christmas crafts at the beach. 

Finally we get the call that they are coming up to get Brinley for her surgery! After waiting 20 mins outside the O.R. they wheel her in and the anesthesiologist starts asking me questions about day of diagnosis, what type of cancer she has, how she handles anesthetic, etc etc...has this lady even read her chart?  Anyways I go over Brinley's chart with her pointing out her procedures, medications all of the above.  They inject Brinley, with what I like to call the Micheal Jackson drug and she's out like a light.  I'm telling you, it doesn't get any easier watching you're child get put to sleep, I've been through it 6 times in the last month, and it doesn't get easier.

watching fireworks
An hour goes by and Brinley is back in the clinic. She's in much more pain due to the bone marrow aspiration.  They try and draw marrow from the same general area, and after each draw they have to manipulate the area more and more, so she's in a bit of pain, nothing codeine won't fix.

After Brinley is settled with a snack the doctor comes in to speak with me about the next step.  And the next step....*drum roll* .............

Is that we have to wait until next week for her bone marrow to get back, possibley the week after.  All bone marrow is sent to Calgary, and it takes time, and with Christmas added to that, it may take even a bit longer.  So right now we cannot consider consolidation yet because that is all based off of her bone marrow.  2 weeks ago, her lymphoblast cells here 2% which is great, but they have to be 1% or lower for consolidation.  If they are still 2% she will enter "extended induction" which means high doses of chemo, more often, for a week...which could result in....Christmas at the Stollery. If we results are 1% or less, we might be able to kick off consolidation in the out patient clinic...again sometimes a week at the hospital is needed to make sure the child balances out and can handle the chemo.

So for right now we are stuck between induction, and extended induction, OR consolidation. What a mouthful.

Oh joy. So here is my Christmas wish, bone marrow results come in on the week after Christmas, it's less than 1% and we can continue to stay home. Come on Santa I've tried really hard this year!

So right now I'm going to get my stuff together, choke down some kind of christmasy coffees from Starbucks, and finish my Christmas shopping...or should i say start it?

Tuesday, December 14, 2010

Today sucks.

Not sure what else to say, other than today just sucks.  I keep telling myself I have 4 days left, thats it...but things have taking an insane turn in the last 24 hours.  Brinley is full effect of the steroids, she has two 2.1mL doses a day and everyday her cravings, and moods get worse.  Yesterday afternoon watching her eat made me nearly sick and so stressed out.  She had 3 bowls of soup, two tacos, 2 flour tortillas, half of a ukranian sausage ring, apple sauce, bowl of grapes, popcorn, and rice.  YES from 3pm-7pm she ate NON STOP.  What's heartbreaking is that she eats so much she cries because her tummy hurts.  My little tiny petite girl literally looks like she has gained 40-50 lbs. They did a weight check last thursday and she was only 36lbs, but she is MASSIVE.  And to be honest I don't care about that, I just hate that she has these awful tummy aches because she's feeding the steriod.  It's bad enough that she can barely walk up the stairs because her legs are so weak, and her hair is falling out, or that she's so exhausted she just moves from the couch to the bed thats it, but she her tummy hurts so bad because she is literally gorging herself on everything in sight. 

I hate this.

The nurses said once she's off of the dexamethasone (4 days left) she will be back to normal eating habits, and all of her puffiness will go away in a week. But then the dexamethasone thing will probably look like a walk in the park compared to what she's up against next step. 

So welcome to the next 2 and a half years Morgan.

Today sucks, and I'm finally going to say it. Today, I'm not ok.

Monday, December 13, 2010

words can't express.

I want to thank everyone for being so amazing to me and my family.  I am incredibly touched by all of your love and kind words every day.  I cannot put my thoughts into words when it comes to how greatful i am to have such wonderful people in my family's life.  Thank you, thank you, thank you.  You give me the strength that I can pass on to my daughter.

Thank you.

Sunday, December 12, 2010

My dexamethasone monster

Protocol.  28 days and we hope for remission.
We're on day 22, 6 days left and I have no idea what the next step will detail, other than it's a 6 1/2 month stretch and it's called consolidation.

This thursday she will have her 3rd lumbar puncture, and she will have cytarabine fed into her spinal fluid, and again they will pull more bone marrow. She handles this better than I do, as a matter of fact it takes every ounce of energy I have to stay in place and be strong. Sometimes I just feel like I'm in a giant vaccum, and all the air is sucked out of the room.

I see brinley change everyday, not just physically, but her personality has shifted. Her bubbley, whimsical manner has slipped away and left me with a little girl struggling. We have our good days, and we have our bad days, sometimes its a combination of the two.  Most of the time she just sleeps, and if she's not sleeping, she's eating, all thanks to the dexamethasone. I keep having to remind myself that she's not going to get better in a week, that this is going to be a long fight for all of us and I have to stay positive and strong.  Most of the time I'm good with that, other times I'm worried about relapse, or what if this doesn't work...

I know. Everyone says, "you can't think about that" but I do, I constantly worry about the unknown, and I think it's perfectly normal that I do so.

On top of this all, there is christmas in 2 weeks.  I struggle with this more than I'd like to admit because I'm just not there, I can't fathom celebrating, shopping, decorating, right now it just seems silly.  But I have two children who are SUPER excited and for them I'll fake it until I make it.  I'll smile and get just as excited as they are and secretly hope it's all over soon.  The single thought that keeps me going is knowly they will have an amazing christmas and they will be excited about the festivities. I will do everything in my power to make this christmas memorable for them. 

Anywho, here is a before and after pic of my monkey...

                         this was in the summer for great Gramma's 90th

this was taken a few days ago, steroids make her super puffy

In the begining...

When you become a mother for the first, second, third or what have you time…you never expect the bad.  You look at your beautiful baby and nothing in the world matters.  From there you begin to imagine their life, who would they grow up to be? Would they be someone you would respect, someone you would even look up to? Would you be able to smile at the thought of your child and say “yep I did a damn great job.”  You start to mould them at a young age to be respectful of others and themselves, to teach them consequences, and accountability. You notice they’re changes in attitude, the shift in their personalities that lead you to believe that you are on the right path. You do every, and anything in your power to ensure that they are healthy, and happy, and sometimes, no matter how hard we try, life happeneds.
I met my husband when I was 16; I fell madly in love with him.  12 years later I can proudly say I am more in love with him than I was when I was 16 years young.  From an early age I was told that children were not in my future, first I was told I would never get pregnant, and then I was told I would never be able to carry a baby full term.  I proved them wrong.  Twice.
I gave birth to our beautiful BIG baby boy July 14th, 2005, 4 days after my 23rd birthday.  Carter Ronald Pawluk entered this world at 9lbs 10oz.  He was a brute, but he was my brute.  He was handsome and honestly a perfect baby.  He slept through the night, ate well, never fussed or cried and was incredibly adaptable.  As he grew up he became more fascinating, I was moulding my own little person.  He was sensitive to others, kind, and polite.  Yes he had his aggressive moments, but he was a little man in the making and I adore every moment. 
Fast forward to 5 months later and I find out I am pregnant again.  Immediately I panic, I feel sick, and scared, and I’m hung up on the idea that there is no possible way I will ever love another baby as much as I love my son.  My husband even has to call my mother to get me to calm down because I am in completely shock.
September 13th 2006, Brinley Ryann Pawluk entered this world screaming in rage.  She was hungry and needed to be fed right away.  Because I under general anaesthetic, I was unable to feed her, so daddy popped a bottle into her tiny mouth and they had their first father daughter moment.
Through the 5 years of raising Carter and now Brinley, we have had few hospital visits.  One for stitches in Carter's face, another for a peanut allergy Brinley had at age 2, but we are a happy family enduring life’s little bumps along the way. 

That is up until November 9th 2010.  That Tuesday Brinley fell ill, she was complaining of leg pain, I had thought maybe she pulled a muscle in ballet and it would go away in a few days.  Her pain was quickly followed by a high fever, which is your body’s way of saying, “hey something is wrong” I take her into the hospital where she is quickly dismissed for having a cold. “Take her home and give her Advil, if she gets worse take her to the children’s hospital,” they tell me.  I follow protocol and no surprise she gets worse. Her fevers are up and down (mostly up) and she’s very lethargic.  I take her to the children’s hospital where she has blood drawn, and an IV placed in her arm to get her hydrated.  They pop her into an x-ray and see some stuff around her hip, but nothing major at this point.  An orthopaedic surgeon follows up saying that the chances of septic arthritis are slim, and there are two ways to check.  One is to put her under sedation and they draw fluid from around the area, and 2 is to go home for 2 days and, one of two things will happen.  Either she will get worse, and will not be able to walk at all, or she will clear up and then it can be ruled out as a virus. I go for option #2 because she has been through so much in the last 24 hours; I’d hate to stress her out more.  They tell me if it gets worse, bring her in.  Wednesday, Thursday, Friday fly by, she’s no better, no worse. Then Saturday rolls around, Brinley seems worse, her fever is higher, she’s lethargic and unwell.  I bring her back to the children’s hospital.

They inform me that they will be keeping her for observation and some blood work and tests.  They don’t tell me what they are testing for; they just smile and say that she will be in good hands.  We get up to our room on the surgery ward, and tell me that they can’t let her go until her blood smear is back from the lab, and that will take a few days, probably back on Tuesday.  They also book for an MRI which, because of the weekend, they can’t squeeze her in until Monday, or the Tuesday anyways.  So I go home, back our bags and prepare for a few days away from home.  Monday rolls around and they have a spot for Brinley and she will be sedated and need another IV due to the last one clotting.  The nurse starts another IV in her arm, she is then put out, and we wait.  After Brin is awake they tell me that her blood smear is back, and YAY they are no lymphoblast cells.  This is the first time they actually confirm that they were indeed looking for leukemia, and are proud to say that her blood looks great and that leukemia isn’t an issue.  THANK GOODNESS. However something strange has showed on her MRI in her hip bones, and her blood counts are low, which is odd because the bone marrow appears to be working over- time to produce a low amount of cells.  She will need to have bone marrow removed to see what is going on; this will take place Wednesday, results Friday.   During this time, another IV has clotted, been pulled out with the promise of another one.  The nurse comes in to check Brinley veins, sighs and leaves the room.  She returns at 8pm with numbing cream, and tells me that the PICU (paediatric intensive care unit) nurse will be down shortly to start Brinley’s new IV.  She can’t do it because Brin’s arms are completely tapped out and her veins are collapsed.  The PICU nurse arrives at 12am and the chaos begins.  At first she finds a good vein to access, Brinley is already on edge and trying her best to be a good girl, but she’s terrified.  The nurse finds a good spot, and BAM hits a valve bending the IV in Brinley’s arm.  They try again on another spot which in turn, the vein slips, and they try and fish for it, I’m literally holding my daughter down, and I look up at her and notice her pupils are going in and out; she’s sweating and screaming like a wild animal... she's seconds away from passing out. I tell them to stop.  I’m a wreck.

The next day Brinley is scheduled for her Bone marrow aspiration and they take her in, put her out and pull marrow from two places in her back.  When she arrives out of the surgery I notice they have put an IV in her foot…there is nothing left in her arms.  I was proud of her to see how well she bounced back from the bone marrow, she was a little sore, but still very active.  The next day rolls around and I think that it’ll be easy going because no results come in until Friday, and there are no procedures booked, so it’s basically a free day. Brin and I go to The Beach (huge kid’s play and activity area) and do some crafts, play with a doll house, the usual.  Noon rolls around and we go back to her room for lunch and the doctors come in.  They inform me that the results being finished, and they expect them by 2pm, and if I could please call my husband to be here as well.  At this point your brain kind of does a switch into survival mode.  Deep down I knew something was wrong, deep down every fibre of my body knew that something was seriously wrong with Brinley, but you talk yourself out of it.  As a human, you ignore your instincts and try and reassure yourself that everything is “fine”.  I ask Blake to be at the hospital by 2, and that Brinley’s results are in and they need to speak with us.  I can’t say he was relieved but, in a sense we’re both thinking, “We can finally take her home”.  Blake shows up at 1:30, and Brinley’s nurse Stacey (I remember her name because she was amazing with Brin) takes Brin to do some crafts and make cupcakes. 

At 2pm Brinley’s doctor comes into her room and says he would rather talk about this somewhere else, again I know it’s bad news, but I chose to ignore that and tell myself that it’s probably a long drawn out conversation about Brinley having a virus…silly I know.  Dr Desai takes us to the children’s oncology unit into the confrence room to have a chat about Brinley.  He leaves the room to get his notes, and a social worker comes in to “help us” with the news.  The moment she reaches out to tell us who she is I see her name tag, and it all hits me at once.  This is NOT good news, this is not a virus, there is something wrong and I just lose it.  Blake panics because I’m crying and nobody has told us anything, in which all I can do is reply that, “I’m scared”.  Dr Desai came in, and rambled off blood counts, the whole time I’m thinking, “just say the words” and he does.
“Your daughter has leukemia”

After that I hear white noise.