Goodbye Carlotta

It's day 4 since finishing the steroids, and Carlotta has made her exit.  Charlotte won't be getting anymore Dexamethasone.  She will get Prednisone during maintenance, but I don't think that will be quite so mood altering.  

With saying goodbye to Carlotta, a couple things happened, almost like magic:

1. A more manageable amount of tv time.  The TV was on almost constantly with Carlotta around.  I guess this also is blamed on her not having energy to do anything BUT sit on the couch watching the telly.  I haven't disclosed what exactly 'manageable' means, as I'm sure we are still watching more then the recommended daily allotment for pre-schoolers, but it's about a tenth of what it was a week ago - baby steps
2. Meals at the table.  Lunch and dinner were had at the table, with no bribing, coercing or timers needed!  Woot woot.  She also hasn't been demanding a different meal every 10 minutes - I can put away my short-order cook hat!
3. Sweet Charlotte.  I have my girl back.  My energetic, playful, silly girl.  nuff said.

Our pumpkins!

PS. we got our wish for poop - all has been good on that front (or should I say back)!

Carlotta

A hospital visit

We had a stay in the hospital this week.  Charlotte woke up early Wednesday morning (4am).  At first she asked for crackers, which I got her.  Then she was upset and wanted cuddles.  This escalated into crying, and eventually "my tummy, my tummy".  At first I thought it was nausea and gave her the anti-nausea medicine, but this didn't seem to help.  I gave her a heating pad for her tummy.  At 5am, I had Stefan call the oncologist on call.  Feeling her tummy, it felt on the firmer side.  They wanted us to bring her in.  Murphy's law - as soon as we got off the phone with the oncologist, Charlotte stopped crying.  On the trip to the ER, she was non-stop talking.  ("oooh, it's dark out mommy", "it's Halloween", etc. etc.). 

The ER was dead, and as an oncology patient, we were given a room right away (to keep her away from germs).  She had an x-ray done, and then we went to the oncology clinic once they were open at 8am and spent the day there. 

Bottom line was she had severe constipation.  (Is Charlotte going to hate me in 10 years for this being on the internet?).  The chemo she has had can cause constipation.  There had been a number of kids in with the same problem.  The doctor also said there are some virus's that can cause the bowel system to slow down.  She was in a lot of pain and received a couple doses of morphine.

They kept us admitted in the hospital for a few reasons:

1. The steroids that she is on can mask a fever among other things
2. She is in the most intense part of her treatment
3. There have been 'incidences' in the past when kids have gone home in this condition (didn't expand so as not to worry me)
4. Since the morphine makes constipation worse, it's hard to manage at home
5. The x-ray had no red flags, they were being cautious

I was fine with staying at the hospital and making sure Charlotte was taken care of.  The hospital was so busy, we actually had to share a room with another oncology patient.  This is pretty rare, but supposedly does happen a couple times a year.  So, Stefan had a very rough night the first night as the other child didn't sleep.  The second night Charlotte finally had her bowel movement before bed, and everyone slept much better.  Another movement Friday morning - and we got our exit ticket!

She unfortunately hasn't had a movement since we've been home, so I'll be doubling up her laxative tomorrow and will probably pick up another concoction too.  My poor girl!  She has been in pretty good spirits though, and I loved having her help me make muffins today!

It was kind of good timing for us as we had my brother, sister-in-law and sister in for a visit so we had extra help at home with Nathan and some company at the hospital.  My maid of honour from our wedding was also in town and I got a good visit with her too! 

Tonight we are feeling a bit spoiled.  My parents came and helped out today and I had a fantastic nap while Stefan went and watched some rugby!  Then my friend Christine of Almondine brought us a fantastic dinner and dessert!  So - I'm sitting down with a very full belly and a glass of wine! 

Here's hoping tomorrow brings us some poo!

Thank you Noriko

A while back, when we were staying at the hospital, we had the opportunity to have some professional photo's taken of Charlotte.

We got to meet the fabulous Noriko of Life in Images (www.lifeinimages.ca), who volunteers her time at Childrens.  She is also a teacher for Stefan's school district, and also has her own family cancer story.  Charlotte and I had a lot of fun with our mini photo shoot at the hospital so when Noriko followed up with us and offered to take some family photos, we of course jumped at the chance!  Nathan was a cranky pants that day, but that's okay, as he is usually the easy one to photograph and I have lots of smiling Nathan shots. 

It was very hard to choose my favorites - but here are a couple!

Giving her 'hip hop' move with some 'tude, classic Charlotte!

happy girl

at the hospital - playing hide and seek with mommy!

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!