Christmas time, more delays, and back to work

what we've been up to
Sorry I haven't posted in a while.  We have been enjoying time at home.  Last weekend, Stefan and I both got separate nights out to attend events.  I popped into work on Friday to drop off my computer to get updated for my upcoming return to work (more on that later) and then attended my work's Christmas party and a going away for a friend.  Stefan had his night out on Saturday.  Otherwise we have just been getting ready for Christmas - shopping, gingerbread houses, drives to look at lights - we are all very excited for Christmas!

Charlotte has been delayed again.  Her ANC was 0.4 on Friday.  That means she is still neutropenic.  Despite that, we received special permission to take Charlotte to my work's children's Christmas party on Saturday.  I really wanted for her to go as she hasn't been able to do any 'party' like events and it was a chance for her to see Santa.  So - despite heart attacks for both Stefan and I anytime anyone coughed, it was so worth it.  We dressed the kids up, Charlotte wore her dress and shoes from last Christmas, a sign of her small size.  Charlotte had a blast.  She had her face painted, did crafts, ate, watched a magic show, and of course, received a gift from Santa!  Nathan just loved running around!

Then Saturday evening, we attended a neighbors celebration of life.  We had grown close to this neighbor due to her inspirational fight against cancer.  Whenever we are out with Charlotte, people don't seem to associate her bald head with cancer.  But at this event, people KNEW what a bald head means.  The sympathetic looks, along with the reason for the event had me shedding extra tears. 

work
So....work.  Yep, I'm back to work this week.  It will be a gradual return, with just two half days this week, and three half days next week.  That unfortunately means I have to work Christmas eve, but at least only the morning.  I am resigned to going back to work.  I like my job, and I like the people I get to work with, that's not the hard part.  As much as it will be tough to leave my little family though, it will be okay. 

Stefan has his next meeting in mid-January where they will be talking about his back to work plans, so no ETA on his return yet.

to come
With Charlotte's delay, we had two options.  If Charlotte is a go, we can come in Friday (the 21st). Unfortunately, our appointment wouldn't be until the afternoon.  That would mean we could try to get Charlotte to eat at 7am, and then she would have to fast until 1:30/2pm.  Also, Charlotte would probably be at the peak of her steroids side effects on Christmas.  Our other option was to go in Christmas Eve. We would have an early appointment (we had our choice of time) and no raging emotions for Christmas.  Can you guess what we chose?  So Charlotte will get a lumbar puncture, chemo and steroids for Christmas.

Because I have to work on Christmas Eve, I was actually hesitant to choose that day for Charlotte's treatment .  Usually the first day of treatment comes with discussions with the Dr. regarding what to expect.  But after a chat with the nurse clinician, I found out I won't be missing anything.  We will find someone to watch Nathan and it will be daddy and daughter day at the hospital for Christmas Eve.  Granted, this is all dependent on Charlotte's counts, you never know, she could get delayed again.  I will be anxious to check on Charlotte's weight again, she has been really hit and miss with eating, and still gets sick a couple times a week.  We celebrate with a Swedish style Christmas Eve dinner, but the visit shouldn't hinder our preparations!

I will now leave you with a photo bomb - comes with not posting in a while!

Checking out various Christmas lights.

Getting her face painted for the first time - she did so good!

The final result - our little girl reindeer!  Adorable no?

Crafts!

Charlotte got a new crown and wand from Santa and then explored the halls!

The things we do to the people we love

In the face of a cancer diagnoses, there is a lot of anger.  Often, people will lash out at the ones we love the most.

Here is an excerpt from I'm with you now by M. Catherine Ray, "We are hardest on those we love most deeply.  We make more demands on them, trusting them not to abandon us, even if we aren't polite or kind." 

I was guilty of this both times.

When Stefan was diagnosed, I got angry with one of my best friends, due to the sole fact that she had come to the hospital when I told her not too.  Kinda silly.  But another good friend consoled her with the sage advice of "Taleen probably needs to be mad at someone right now.".  No truer words could be said.  My friend handled it like anyone in that situation should - with patience and compassion.  I'm so thankful she stood by me, didn't take it personally, and continued to be the amazing friend she is.

When Charlotte was diagnosed, I again lashed out at someone close to me.  Unfortunately, that relationship didn't hold up.  My advice to others who have a loved one who goes through something like this, is to allow compassion and patience.  If they lash out - I advise you to not take it personally (as best you can) and saying something like "I know you are hurting, I'm here for you when you are ready", and continue to tell them you are there for them.

I think the greatest lesson I learned when I worked with children is to not take bad behaviour personally.  When a toddler strikes out - our first thought is usually "is he hungry, tired, teething?".  If we deal with a grumpy cashier, peoples first thought tends to be "what a poopiepants" instead of thinking "they are probably tired, hungry, or had a fight with someone they love".

So, in the spirit of Christmas (or which ever holiday you celebrate), next time you run into a poopiepants, try to imagine what their custom shirt might say; "my husband has a brain tumour and my kid has cancer", or "how will I pay my credit card this month", or "my mother is ill", "or "I'm hungover".  Use your imagination and remember some kindness and compassion. 

Love and compassion are necessities, not luxuries.  Without them humanity cannot survive.
Dalai Lama

a little longer in the bubble

We were into the clinic on Friday for Charlotte's last chemo of this phase.  Her neutrophils were as low as they can go.  So it's not very likely they will be high enough for us to start maintenance this week.  She gets blood checked on Friday, and I'm sure it will be at least another week delay. 

Till then, we are staying home with walks out and keeping an eye out for fevers!

Charlotte is super excited about Christmas.  Everything is Christmas.  When we went to Tim Hortons, her regular ole' bagel order was now a 'Christmas bagel' along with mommy's 'Christmas tea'.  She has her advent calendar, and we made a gingerbread house today! 

I sometimes try to do visualization to get me to a happy place and try to help me sleep.  I try to picture my happy healthy family in 10 or 15 years from now.  I have a really hard time picturing Charlotte with hair in that future.  She is usually a feisty little spitfire with a buzz cut or pixie hair cut.  She can certainly pull it off!