Saturday, February 12, 2011

Looking back and looking forward...

Looking back on my last post I feel a little guilty complaining about being stuck in the house.  I mean there are people who don't even have a home to be stuck in.  There are kids out there a LOT sicker than Cami who might never get better.  I almost deleted it because I don't want this blog to be a place to complain or feel sorry for myself, but I also want to keep this blog real.  Obviously, with childhood cancer comes some really bad days physically and emotionally.  It felt good to write about it, but what feels even better is looking back on those days and thinking 'I did it, I made it through and it was hard, but things are looking up'.  

Cami's nurse came to check her levels and they were a little higher!  Hooray!  We even snuck out of the house and went to a movie with Hopekids today (the movie theatre opens early so there aren't any crowds).  Cami wore a mask in, I disinfected her seat, and she was grinning ear to ear the entire time (I think I was too).  The minute the movie was over she asked when we could go to it again.  It was such a simple family activity, but it seemed much bigger somehow.  It is amazing how much sweeter these little outings become after we cant do them for awhile.  Its just another reminder not to take the little things for granted.  2 weeks into maintenance and I was already taking everyday life for granted again.  It's funny how life will just keep teaching you those little lessons until you get the point.   

I thought I would post this picture I took of Cami's port when it's accessed.  She has had this done hundreds of times and will do it thousands more before she's off treatment, and she is SO SO brave every time.    

Caden gets really concerned about Cami and her "owie" when she is getting accessed.  This time he unzipped his PJ's like he wanted to take it for her.  Nurse Nancy gave him a bandaid just like Cami.

Today is a new day, the sun is shining and we have so SO much to be grateful for. 

There are many things we are looking forward to:
Higher counts, Valentines day, spring is right around the corner, and our Disney World trip is coming up  in 2 weeks. 

Cami's counts:
WBC: 2.4
Hmct: 29.7
 Platelets: 437
ANC: 800

Tuesday, February 8, 2011

her hair is growing... her counts are NOT!

The first 6 months of Cami's treatment, things were constantly changing.  If a certain drug was causing her problems, there was a good chance she'd be taken off that drug within the month.  This made it bearable.  I could think to myself: just get through the next two weeks and things will surely get better.  Sometimes they did get better and sometimes they didn't, but thats not the point, the point is that there was a light at the end of the tunnel.

The light at the tunnel was maintenance.  The Doctors and nurses couldn't say enough wonderful things about maintenance.  They told us Cami would be back to normal again, she'd be able to do anything a "normal" kid would do.  They said it would be just like our life was back to normal. 


Instead I have found myself telling Cami "no" more than ever.  She wont eat, and she feels "throw-uppy" quite often, she is pale with dark circles under her eyes, and she is tired all the time.  Not to mention the pill schedule and steroid grumps.    

The first few weeks in maintenance Cami went back to school and she was LOVING every second of it (even though she came home looking like she'd just ran a marathon).  She was playing with her cousins, going out to eat, and I even started taking her grocery shopping again.  The Doctors told us to live a normal life and we didn't hesitate.  We had a blast!  Then she got a cough and I kept her home from school and away from her friends and cousins (like any "normal" mother would to protect others from getting sick).   Cami was upset that she couldn't play and go to school, but its normal for kids to get coughs especially in the winter months so I assured her that when her cough was gone she could be "normal" again.


I had been so anxious to go back to clinic (I never thought I'd actually look forward to clinic).  I wanted to know where Cami's levels were and talk to her Doctors about her cough and the few other issues we'd been having.  Finally after a long month we had our appointment.  We were in and out in record time!  They accessed her port and gave her a good dose of Vincristine (chemo), the oncologists came in and checked her out, then they sent us on our way.  I was SO excited and so was Cami... clinic had never been so fast and easy.  I remember thinking, the Doctors were right, maintenance IS easy!


A few hours after getting home, I got a call from our nurse.  She told me Cami's levels were really low and to STOP her chemo pills for at least 2 weeks!  She also said that because they'd given her chemo earlier that day that her levels were expected to drop even more!  WHAT!?!  I thought maintenance was easy and "normal"!  Cami has always, ALWAYS had really high levels (so high in fact, I worried the chemo wasn't doing its job) and she has bounced back from even the most intense chemo like a champ.  I don't understand how this could happen and it feels like a slap in the face.  It's like we got a glimpse of how fun life can be and cancer would just not have any of that!

Now Cami's cough is gone and she has been asking (more like begging) me to let her go play.  She was invited to 2 birthday parties and I fully intended on letting her go, but of course she couldn't.  She watches her friends playing outside or getting home from school and she just cries or BEGGS me to let her go play.  Those first 6 months she would see her friends and she just knew she couldn't play.  She had accepted it, but now that she has had a taste of real life again she is starving for more.  It is depressing and sad, and I don't know what to tell her anymore.  I have learned that I cant promise her anything anymore because we just don't know.  

Cami has also been on steroids again (for the next 2 years she will have steroid pulses once a month for 5 days).  This could be another reason she is so upset.  Her mood swings are CRAZY on these things.  When she is feeling sad it is WAAAAY sad, if she is happy she is giggling non-stop, if she feels lovey she cant stop telling me how much she loves me or snuggling me (that mood is the best), when she is mad she full-on shakes from the rage (its actually really funny, but if we laugh it is OVER for the rest of the night).  Instead refusing to eat...all she wants is McDonald's french fries.  I have tried feeding her everything we have in the house (to stop her from eating greasy fries all day) and she practically gags on it all.  If she's not begging to go outside she is crying for me to drive through "Old McDonalds" (as she calls it).  

I am sorry for the unpleasant post.  I just don't feel like looking on the bright side today.  Im sad, and I HATE HATE HATE cancer!  I know things could be a lot worse.  I know we are SO very blessed and this is such a minor thing compared to what others are going through.  I know this hard stuff will pass and we have lots of good times ahead.  Tomorrow I will feel better, but today I need to be sad for my daughter, my family and for myself.

On a more positive note, her hair is coming in quite nicely.  I am amazed at how quickly it has been growing....

I was trying to get some good shots of Cami's hair coming in and she was goofing off.  We were both laughing so hard, this girl is hilarious!  
I had to include some of her silly faces...

Caden NEVER wants his picture taken... that is until his big sister shows him that he can goof off for the camera.  This is him trying to be silly...

Here she is at clinic, having her liver and spleen checked by one of the oncologists....

Clinic stats:
Height: 107.8
Weight: 17kg (37.4 lbs.)

ANC: 400 (so low for maintenance)
WBC: 1.2
Hematocrit: 28.4%
Platelets: 291