Child Run

It was about this time last year that we did the Spring Sprint, a run benefiting the Brain Tumour Foundation of Canada. We had an excellent turnout and amazing team! This year, we will be running the Child Run, with Charlotte's Army on June 2nd. All proceeds benefit the Children's Hospital.  Last year, all the proceeds went directly to the oncology practice.

We have a lofty goal of $10,000. We are still a ways away from achieving it, but I do think it's possible! We would love to see some of you join or support us, remember, the more the merrier! You need to join by May 8th, in order to get a Charlotte's Army t-shirt!

We checked with the Dr. today about the possibility of Charlotte joining us for the run, and it is possible - we will try our best to have her with us - albeit in her stroller bubble!

If you can't make it June 2nd, we will also be doing the Spring Sprint again on May 27th, if you would like to join us then!

And, the whole reason for having a blog is it's my soapbox for showing off my adorable family - so, I leave you with a picture from this morning of Charlotte at the workbench in the playroom.  She always goes straight for the trains or cars every time.  My heart shouts a "you go girl" every time she bypasses the dolls for the cars!

Blood 101

Here is my blood 101 crash course to help everyone who is not a doctor, nurse or a science major understand.  We get a lot of blood tests, in the past week Charlotte has had 3.

There are three counts that we are most interested in - and impact whether Charlotte needs a transfusion, and how tight we keep her bubble.

This is taken almost verbatim from my "children with cancer" handbook:

Hemoglobin (HGB) - If she does not have enough hemoglobin, she is anemic - tired, weak and pale.  The HGB gives energy to the body, provides color to the skin, and carries oxygen to all parts of the body.  If her levels are low, she gets a transfusion of red blood cells.  Chemotherapy is rarely postponed due to low HGB.  A normal range is 107-131.  Adequate is 70-80.

On Monday, her level was 75, warranting a transfusion (her chemo drugs lower her levels, so I don't think they wanted to send us home for 2 days at 75 and dropping).  When she was diagnosed, her level was 26.  If you or I had that level, we would be on the floor knocked out.  Goes to show how resilient kids are.  Transfusions have to be done over 3 hours so as not to tax the heart.  When she had the very first transfusion - they just did a small amount over that period of time as she likely had been low for a while.  The heart gets used to pumping the little amount, that to add all that blood at once would shock it.

Platelets - If the platelets are too low, blood will not clot well.  There is a risk that she will start bleeding and this will be hard to control.  If her levels are low, she gets a platelet transfusion.  A normal range is 180-440.  Adequate is 50.  They don't like to perform lumbar punctures or biopsies when it's below 50.

At diagnoses, Charlotte's platelets were 13!  We go back to the hospital on Thursday to check platelet levels before her lumbar puncture Friday.  She may need to get a platelet transfusion Thursday.

Absolute Neutrophil Count (ANC) - These are a type of white blood cell, and the most important for us.  These are the most powerful killers of bacteria.  A normal range is 3.9 to 10.2.  Adequate is 1.0.  Anything less then 1 and we are in the bubble and watching out for fever as she basically has little to no ability to fight infection!  They will delay chemotherapy at certain stages until it hits 0.75.

At diagnoses, Charlotte's ANC was 0.56.  It has gone as low as 0.03 during her treatment so far.  On Monday it was 0.78.

Charlotte's current drugs reduce all her counts, hence her transfusion Monday, and frequent blood tests.  We have a frequent flyer card for the local lab, and have to be aware of her most recent counts for any late night calls to the ER.  She will very likely need many transfusions over the course of her treatment.

So....on that note...I encourage everyone to hit a blood bank!  www.blood.ca

I'll leave you with a picture of Charlotte from Monday....riding a bike while getting her blood transfusion!

We begin the consolidation phase

This blog is full of details - a boring but necessary posting for those who want to be in the know.  My apologies for any overkill.....

Friday went quite smoothly, and we have so far had a puke free weekend (knocking on wood!).  Friday was day 1 of this new phase which consists of two 29 day segments.  It was a long day - we were scheduled to be at Childrens from 8 until 5, but we ended up being there till 6. 

The morning started with a lumbar puncture under general anesthetic - this was to deliver one of her chemo medications.  It was again a fasting morning - but Charlotte didn't ask once for food or water!  She was easily distracted with her IPad on route to the hospital - and the staff were really quick at getting her in and out of her treatment. 

They have now perfected what works for her for when they put her under anesthesia for her lumbar punctures or bone biopsies.  I still remember her hysterics for the first one - such a difference now!  She has to stay laying down for an hour afterwards - she is quite the trooper.

We sat down with the Dr. to go over the months plan and an overview of the drugs she will be taking:

• April 20 - lumbar puncture and chemo given at the hospital (all day)
• April 21 and 22nd - into the hospital for chemo - a quick IV push - in and out in about 10 minutes
• April 23rd - into the hospital for chemo and possible blood transfusion
• April 27th - Lumbar puncture, chemo and possible blood transfusion (all day)
• April 28th and 29th - quick trips to hospital for chemo
• April 30th - in for chemo and possible blood transfusion
• May 4th - hospital for lumbar puncture, chemo and possible blood transfusion - long day
• May 11th - hospital for lumbar puncture, chemo and possible blood transfusion - slightly shorter day

Meanwhile - we administer one of the chemo drugs at home each night until May 3rd.  As you are probably aware - chemo is pretty toxic stuff - so that means wearing cloves while preparing it (very carefully!), and wearing gloves when dealing with any of Charlotte's bodily fluids - scary stuff - especially when we have a little baby in the house who is putting everything in his mouth!  There are 6 different chemo drugs she will be taking this phase.

The next segment could start on May 18th (depending on her levels) and will be a repeat of the above.  When we mentioned her birthday being the 21st, they said we could possibly take the week off for her birthday!

The drugs have the typical chemo side effects of nausea, vomiting, hair loss and loss of appetite.  There were some other scary ones - but we were told that they won't apply since her dose isn't that large, and they take precautions against them.  (for the one she gets on Fridays - she is pumped with lots of fluids to flush it out so it's not so hard on her (hence the long day).

Her blood counts drop with a couple of these drugs so she will get quite tired (and grumpy) over the next couple weeks.  This is why there are the possible planned blood transfusions.  The counts should rise again closer to the 29 day mark - and need to be at a certain level to start the second segment.

It's Sunday evening as I type this.  She hasn't been sick (we are staying on top of her anti-nausea drug), but I can tell she isn't feeling herself as she's on the grumpy side, and wants mommy by her side.  I can tell we are entering into the couch/tv/dvd phase again - but at least I know we will get back to the fun playful Charlotte in a couple weeks (in time for her birthday)!

I leave you with a couple photos from Saturday, and today.  The second photo is from the oncology ward playroom.  After her dose, she always requests to play.  Great to associate the hospital with the awesome playroom!  And since we can't go to gym times, libraries or play groups - fun to hit a safe play area!

Can you tell she picked her outfit?  She loved her 'mouse' shirt - a present from a family friend!

Riding the Dora bike in the playroom after chemo!

Deja vous

It happened again - hit the brick wall. It brought back memories of the identical feeling, just over a year ago, January 18, 2011.  I guess 5-6 weeks is my bodies time frame for dealing with shocking news, and powering through before it hits the wall.

Wednesday afternoon, the last month caught up with me, I layed down to attempt a nap while my awesome hubby took over. Felt much better yesterday, and ready for our long day today - we will be at Childrens from 8 till 5, as Charlotte get's her new chemo drugs and we will get the plan for her next stage of treatment. She is currently getting a lumbar puncture as I write this.

Reading the January 18th blog entry from just over a year ago, so many things remain the same:

• Charlotte continues to have superpowers, despite being sick, she is tons of fun right now, it is impossible to deny her calls to play (and I would be crazy to not take advantage of this time!). Her brother joins her with his cheerfulness (and he now wears those same booties she is wearing in that picture).
• I still consider my self lucky despite our absurd situation. We indeed have a fantastic support network!  Every day I am overwhelmed by peoples love and generosity.

It might be a long weekend for us - but will update on how chemo day went when I get a chance.  Wish us luck!

The more the merrier

My blog was recently featured on the website momincmovement.com, in a beautiful (humbling) article about my little family.

When I started this blog at the time of Stefan's diagnoses in December 2010, it was set up to keep family and friends updated.  At first I was some what private about the blog, keeping the google search settings off (so a google search wouldn't show the blog).  But I have recently taken that off and been open to spreading our story.

I came to the realization that the more people that hear our story - the more prayers, good wishes and positive vibes will come our way - and let's face it - my little family could use lots!

So please - if you pray - pray that my husbands tumour continues to shrink and my little girls treatment goes well and she kicks this thing to the curb.  And if you don't pray - then just send positive vibes and good wishes our way!  I so believe in the power of prayer and positive thinking - and we will forever be thankful to what comes our way!

Enjoying the high

Charlotte has been doing fantastic, we have had almost a month at home with no trips to emergency.  We have had some absolutely gorgeous days we have been able to enjoy by getting out for lots of walks/runs and getting the back yard ready for summer!

There have been two fantastic things that have happened over the past 2 weeks:

1. Watching Charlotte's development pick back up - particularly her speech has grown exponentially!  She is catching up for the past few months, so lately we have had the joy of hearing her 5 word sentences, telling stories, and singing songs! 
2. Charlotte has taken interest in her baby brother!  She was somewhat indifferent to Nathan for the longest time - it wasn't that she didn't like him - she just couldn't really be bothered by him.  But the past couple weeks she is into 'playing' with him.  (playing consists of handing him a toy and saying "here Nathan")  And tonight she even helped bathe him!  Big milestone!

We are now down to a very manageable amount of tv time.  During our peak of steroids, we would put a timer on for dinner time - she had to stay at the table with us for 10 minutes, then she could go back to the couch with her meal.  She'll still ask for the timer, but usually after she's already been sitting with us for 10 or so minutes, and once it's gone off, we will continue to chat, and sometimes she'll ask for it on again.  So - meal times are now the usual 30-40 minutes of family chit-chat!

I think having such lows, make the highs all the more lightening - I really feel buzzed right now on all the good.  It brings back memories of those periods of respite during Stefan's treatment.  I think back to the crazy emotions during the first week of his diagnoses and surgery.  After one week in the hospital - we got to go home... it was Christmas Eve.  That was the best Christmas ever!  This year we had the best Easter ever!  We do our best to shut off the worry and 'what if's' and just focus on the present goodness.  This is what we did that Christmas, and it's what we have done now.  It will recharge us for the next dip.

Charlotte had bloodwork today and was supposed to be starting her next phase of chemo on Monday.  But, her neutrophil count is not high enough (those are the cells that fight infection).  They are supposed to be at 0.75 to start the next phase, but hers are at 0.3.  So, we are now on hold, she will go for bloodwork again on Thursday, and should be starting Friday. 

In the meantime, we will enjoy the extra week of her feeling well and get in lots of playtime, stories and cuddles! 

A quick Stefan update
As you can guess, Stefan rehabilitation program is on hold for now.  Since stress and anxiety are his two biggest issues, you can imagine that Charlotte's diagnoses hasn't been good for him.  He was a bit on edge after the week in hospital as he hadn't had enough sleep, but he's managing pretty well right now since we are home and rested.  He will touch base with his occupational therapist again in June.

Hair

It's now coming out by the handful.  I'm thankful for Charlotte's innocent age.  As she pulls out clumps of her hair she just laughs!  The only thing that seems to concern her is when she gets one in her mouth or food - now a regular occurrence - it's everywhere!  We have been discussing how she's going to look like Caillou once she's lost her hair.  I wonder if Caillou has cancer?  I'm genuinely concerned one of us is going to cough up a hair ball.

remnants from Charlotte's bath

"There is one thing about baldness: it's neat" - Don Herold

Me time and Easter Pics

I know people have been concerned that we aren't getting "me time". I will admit, I'm actually not too bad at practicing self care. It usually takes the form of blizzards or chocolate or a nice glass of wine! I don't know how i got through most of Stefan's treatment without the latter (since I was preggers!), but I managed!

Well Friday night I had some pretty quality "me time" with these lovely ladies!

Me, Alex, Michelle, Aleta and Anna (missing Krista, Lisa and Allison)

Particularly the one in the middle, who is one of my best friends who came into town from Whitehorse. Her family are our favorite travel buddies, and who we just went to Hawaii with. Hard for us to think we probably won't be taking another trip until 2015. She is my daily touch base to normal life though our often daily texts- a god send during hospital stays! From the mundane "is Nathan on solids yet" to the more exciting "how about 'Carlotta' for steroid Charlottes alter ego?". It was so nice to see her (and her adorable kiddies!) and download!

texting about Charlotte on steroids - Sebastien was the name of Stefan's alter ego - hence sebastienette!

The night out was in honor of the beautiful lady beside me in the pic above - a milestone birthday! This lady has quite the amazing story of her own! Another survivor - she has just started blogging her remarkable story. - you can follow it here.

It is guaranteed laughs whenever I get together with this group, and Friday didn't disappoint! Great food, sangria, and laughs made for the perfect night of "me time"

I would not have been able to go with a clear conscience and actually enjoy myself except for these two things:

- Charlotte is really doing excellent right now. The best we have seen her in months! She is happy, laughing, smiling! I guess it can be chalked up to the steroids being out of her system, and her hemoglobin and platelet levels returning to normal. We are enjoying this respite, as her next round of drugs will make her levels drop again.
- Stefan got an invite to the hockey game with a friend of his, so he got his "me time" too. I didn't have to feel bad leaving him. He managed excellent with the kids on his own on the Friday, and they were both great for him!

Here are a couple pics from this morning - Charlotte had a great time finding her Easter eggs!  Hope everyone has a wonderful Easter!

Our favorite gifts

We have been very fortunate to receive some really lovely gifts!  Meals, gift cards, and stickers galore for Charlotte.  Among these though, I have to admit to a few favorites:

the blankie
Charlotte has always been a blankie baby.  She received this white blankie from my Auntie Barbie when she was born.  We had always succeeded in it being a bed blankie - and it wasn't to leave the house.  With my germaphobe husband - this was the only way it could be - otherwise he would have ended up washing it every single night before it went back into her bed!

Since her diagnoses - Charlotte has been attached at the hip to this said blankie - and we didn't dare take it away.  But....there were times it HAD to be washed.  Luckily for us - her cousin Chase had the identical blanket and having outgrown his - passed it on to his little cuz.  So - we now have a back up blankie (perfectly worn in to boot!) - much to all our delight!  Thank you Chase!!!!

The blankie

the iPAD
Yep - Charlotte got an iPad from Kelly - we are jealous too!  We are keeping it for 'hospital' days and face times.  Monday was her first day with it and of course it was a hit!  We have found a medical log app for it that we can now keep track of her meds/symptoms/measurements - so it will go where she goes!  Hoping she will let mommy and daddy use it too now and then!

I know - it's an iphone in the pic!  She has only had one day with the ipad, so no picture of her yet - but this pic is cute and recent (Sunday)!  So sue me?!


Zuri
Many of you know Zuri as the organizer of Charlotte's army and our helping calendar.... some of you are lucky enough to know her much better.  I definitely count her as one of our favorite gifts, and she is on a whole other level then the blankie or ipad!  For those of you who don't know, Zuri has always been one of the main organizers of our group of rugby girls.  If it wasn't for her, I'm sure I would see this group of amazing ladies (each one a gift in her own way) a lot less often. 

Cancer hit the first of our group in December of 2009 when one of our friends husbands was diagnosed (also a rugby guy - with the same birthday as Stefan).  Zuri organized meals and care packages from our group here to send up to our friend in Quesnel.

Then Stefan was diagnosed - and she again did the same thing for us. 

Last year, she captained the nothing butt class ride to conquer cancer team (you may remember a blog about them I wrote last year!).  Well - after all that - 1 month after completing their bike ride from Vancouver to Seattle - Zuri was also diagnosed with cancer.  Charlotte's diagnoses happened the day before Zuri's last day of radiation- and that didn't stop her from being one of the first to step up to help. She is a mother, a military wife, a sister, a daughter, a web designer, a rugby coach, and a friend.  

This year - she is riding again to conquer cancer!  I will be donating to this cause and supporting Zuri.  Please check out Team Nothing Butt Class 2012 and consider donating!



Zuri with 9 day old Nathan