I'm back

First off - just wanted to apologize for the longer than usual delay since my last post.  I've just been in a bit of a funk, and priority was to try to take care of me.  I'm doing that, things will be okay!  It's amazing how stress takes such a physical toll on the body.  I had a checklist of physical signs of depression - and Stefan and I went through it together and I could check off 90% of the items.  I was surprised Stefan was so aware of my symptoms, as he said "I do live with you!".

Just wanted to say how blessed I am to have such amazing friends and family.  They recognized when a storm was brewing and offered coffee dates or chats. I know people wish they could do more for us, but I can honestly say there isn't much anyone can do.  Our sick little girl is our burden, and I wish I could pass on some of the pain and tears, but we can't.  We can read all the comments of support though, we can get together with a friend to vent, and we can accept all the prayers and positive wishes - for that we thank you!

Charlotte is doing pretty good, aside from the extra helpings of tantrums and Carlotta outbursts.  We were in today for her chemo and a possible blood transfusion, but she didn't end up needing any blood - so that's good.  Her neutrophils are low though, so while we have been cautious all month, we are officially in the bubble.  We are scheduled to be back in next Friday for a possible blood transfusion.

Tomorrow we are going to do the Light the Night walk in Stanley Park.  Not too late to join us if anyone wants to!

Birthday Turkey

It was our little boys birthday this weekend, on Sunday.  Can you believe he is one already?  It seems like yesterday we welcomed him into our family!  We had a pretty low-key birthday for him, and celebrated on Monday with Turkey dinner and cake with both sets of grandparents, Aunty Rebecca and his little cousin Abbey. 

While I wish the day could have been all about him, that was quite difficult with Carlotta out in full force (Carlotta being the name of Charlotte's steroid induced alter-ego).  Carlotta will be whimpering with full on tears one minute, screaming for something to eat the next minute, and happy talking-a-mile-a-minute the next minute.  She also requires 'mama' at her side at all times.  This made for some difficulty in making a turkey dinner, thanks to family we were able to get one on the table!

Nathan, thank you for being such an easy going happy baby!  You have been very patient my boy in quite a chaotic year!   I love how much you LOVE splashing in water or eating dirt, how you go all 'Jerry Lee Lewis' on the piano, and how you happy dance when you eat!  I love your endless energy.  When I'm tired of bouncing you, I pass you off to your father and tell him "it's your turn, it's your fault he's like this, he's your mini-me!"  I love how I can pick up your sleeping body after a long day of not being with you, and you cuddle up to me!  Hugs and kisses my boy!

On his actual birthday - Spaghetti face Nathan!

Delayed Intensification

We started Delayed Intensification today, the last phase of active treatment before Charlotte is in Maintenance.  This is supposed to be the hardest phase of Charlotte's treatment.  We have basically written off October and November.

The first month is quite different then the second.  Right now we are scheduled to be in twice next week (Tuesday and Friday), and then the following Friday (the 19th).  This month she gets Vincristine, Doxorubicin, PEG-asparaginase (3 chemo drugs given through IV, all she has had before), IT Methotrexate (given through lumbar puncture) and Dexamethasone (the steroid which gives us Carlotta - Charlotte's hulk like alter-ego).

Next month she will again get Vincristine, PEG-asparaginase and IT Methotrexate.  In addition, she will get Cytarabine (which she has had before) and two new chemo drugs, Cyclophosphamide (given by IV - and by reading things, doesn't sound very pleasant) and Thioguanine (an oral drug given at home).  

She will lose her hair again this phase, will likely require some blood transfusions, and will have the usual symptoms, nausea being the biggest. 

She handled this morning's lumbar puncture really well - my little trooper.  She also had the Vincristine and Doxorubicin.  We were only at the hospital for a couple hours.  We had a quick stop at my Mom's for lunch and a little playtime, and were home for naps.  She awoke from her nap screaming.  I couldn't calm her or find out what was bothering her.  I gave her some gravol (it was too early for her next dose of her anti-nausea medicine) and that seemed to do the trick for her.  She is now curled up in front of the telly.  Welcome to Delayed Intensification.

I am tired.  sad.  frustrated.  Yesterday wasn't a good day.  I've applied for sick leave from work, and yesterday had a call with the disability management person.  She was not very nice.  I don't think I have ever been treated with such obvious contempt.  I'm still upset over it.  I'm doing my best to put on my 'mom face'.  I feel like a weathered away statue.  I know I'm strong, I've been through a lot.  But I feel like the storm just keeps getting stronger and I can no longer recognize myself.  Like one hard hit will shatter me down the middle. 

"Give sorrow words; the grief that does not speak whispers the oe'r fraught heart, and bids it break." - Shakespeare

It's days like this I just lean on Stefan a little more.  It's likely I'm just due for a couple good crys.   Sorry- remember - cancer blog - you get it all.

*Follow-up: I wrote the above a few hours ago.  Since then, Charlotte had her anti-nausea medicine and perked back up, and was her silly crazy self.  She was being so silly, I asked her if she was on drugs, she said 'yes'.  We went for a family walk which always helps.  I'm now sitting down with my hubby and a blizzard about to watch glee, so feeling a bit better.

I hope everyone has a great thanksgiving - hug your loved ones, and enjoy your turkey dinner!  I will!