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. 

WRONG!

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.

WRONG!

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!

WRONG!

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

20 comments:

  1. Awww, so so sad you have to go through that. We'll keep praying for your cute family!

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  2. I found your blog while "blog-hopping". I am a kindergarten teacher and Cami's story has touched my heart. I would love to send her a card and/or fun package full of 'goodies'! Please send me your address :)) Here is my e-mail:

    cassieannpierce@yahoo.com

    Thanks!

    Cassie Pierce

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  3. As a "cancer warrior mom" I hear and understand your words. Sometimes it is tough to stay on the happy side, sometimes you need to just YELL and tell cancer that you HATE it. Yes, we are lucky that our children are healing and it could be worse, but sometimes it just SUCKS SO MUCH!! Sending you strength and understanding from someone who knows JUST HOW YOU FEEL!

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  4. Chel, i am so so so sorry that you guys are going for this! You CAN and SHOULD feel this way! You have every right to feel this way! Know that I love you and I am here to do anything you want/need! Cami's hair looks beautiful! It is growing really fast! Cant wait to see it grow grow grow!
    Love you so much!
    -Nat

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  5. Hey Chel.. When I showed Mia your post this morning.. she started to cry and she said, " Mommy Cami is soo beautiful,and look how pretty her hair is"... It was soo sweet! She loves Cami! We love you Cam.. XOXOXO
    Danielle/Mia

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  6. I wish i had the right thing to say....but i can tell you that you amaze me and that i love you!!

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  7. I too wish I had the right thing to say. I cannot imagine the pain and fear you must feel all of the time. I pray for your little Cami, you and your family and hope for brighter days ahead.

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  8. Cami's hair is BEAUTIFUL! It is so fun to see it growing. It is not fun however to read about all the awful things you guys are going through right now. It is SO HARD to say "no" to everything "normal". It is not fair for a child to go through this.

    As for the french fries, I was thinking back to Erin's chemo and I remembered that she went through stages of eating just one thing at a tim. The chemo changed her taste buds so much. She would have these major swings in foods she loved and then hated. For one round all she ate was CHEESE. The next round cheese made her want to throw up. I hope you can figure it all out.

    I am SO SORRY you guys are stuck in your house. It really stinks to see everyone else having fun. It is so sad to read that she watches her friends come home from school and stuff. Ugh! Not fun! I am so sorry.

    We think about you guys a lot and I'm glad you posted. :)

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  9. P.S. who is that Oncologist? I have never seen him before.

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  10. I'm not sure if you remember me...I met you when I visited Jenny Heyman a few years ago. She has the link to your blog, and I think Cami is Beautiful. Her eyes can be so bright and they sparkle. I work as an OT at a Children's hospital right now...and I've learned from those families that it is ok for you to vent. You need to express yourself sometimes, just like Cami does. I am so excited about your future make a wish trip!

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  11. I'm so sorry things have been rough! I hope she recovers soon.

    When we were in Interim Maintenance and Daph was on 6MP it was the worst. WORST! She wouldn't eat a thing and we were in and out of the ER several times. Now she seems to be fine. I don't know if that is what is causing some of Cami's issues, but hopefully things will level out.

    They say the first phase of maintenance they are still recovering from DI. So keep that in mind as well.

    Also, I've noticed each pulse of steroids has produced slightly different effects on Daph. The dose a few weeks ago she got thick (not as bad as Induction or DI, but more than I'd thought she'd get). She was moody, her legs hurt. It was not fun. The pulse before that was a dream. You'd never guess she was on steroids.

    I know we're really not very far ahead of you guys, so this advice might not be worth much- especially because everyone is so different. But I things will get better. And I totally understand just not feeling it some days.

    In other news- her hair is really coming in! It looks fabulous. I'm not sure if Daph's is coming in more slowly, or it is thinner, or just so blonde I can't tell. I'm jealous of all these dark-headed baldies and the fast results you're seeing in hair-growth!

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  12. My heart hurts for you. This TOTALLY sucks, but I know how incredibly strong you are and how amazing that little Cammers is. I love love love you guys. Cancer is going to get its big nasty butt kicked.

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  13. Sister...
    You totally have every right you have a BAD/HARD day...you don't have to say sorry for it either! I think out of these 7 months I have heard you complain maybe twice...I think thats pretty AMAZING! Chel I love you and I think you are an incredible person...I seriously dont know how you get up every morning and deal with what you have to deal with...I dont know how you do what you do. I seriously look up to you so much! Like I said you AMAZE ME! Just when I always start feeling down for myself or start feeling depressed about something small...then I read your post and think to myself.... Im pretty lame for even starting to feel depressed or feel bad for myself. I LOVE YOU...YOU ARE DOING A GREAT JOB!

    Cami's hair is growing sooooo fast.... Its so cute! (I sure am going to miss her soft bald head though) She is so dang beautiful its scary! Im so lucky to be her aunt!!! I just love you guys and am happy to be apart of amazing family and to have incredible family as my example! xoxo

    By the way you NEVER EVER leave my prayers at night! :)

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  14. Thanks for all the sweet comments. It really was just a bad day and Im kind of feeling bad about posting such a bummer of a post, but it is the cancer life reality... some days are just BAD!

    Jill- the oncologist pictured is Dr. Frazer, he is an attending, but he is also a research DR, so I think he spend a lot of time up at Huntsman.

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  15. Your post sounds like it came out of my mouth. Thank you so much for sharing your thoughts and concerns. I know how you are feeling. Some days are good and it's all do-able, but other days I am so angry that our Easy Breezy Maintenance has caused Millie so many set backs. It breaks my heart when she can't go to school or gymnastics because of her cancer. I hoped it wouldn't be an issue anymore, but it will be an issue until this nightmare is over.

    Millie's counts are all over the dang place and her ANC has been as low as 400 (they then gave her chemo because we didn't know at the time) NOT GOOD.

    All in All it is better. We all have our hard days and I think it's great that you vent about it. It's amazing how therapeutic it can be.

    We love you guys. Please let me know what I can do to help or just call if you need a friend.

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  16. Honesty is nice sometimes. You deserve a day to feel sad for all of you. In fact it would be unusual if you didn't sometimes. I hope tomorrow is happier for you. You do deserve that!! Cami's green eyes are stunning!!

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  17. ditto to amanda - i felt like i could have written this post. it must be something about the months of january and february! i'm sorry to hear that cami's counts are low and that she's feeling rotten! i TOTALLY feel you on the getting all excited and going out to the store and restaurants and doing things and loving feeling "normal" and then having it all dashed by low counts. :( meh. i hope you guys get back to that soon.

    elena also craves salty foods. she is a little salt/carb monster. i laughed at cami crying for "ronald mcdonald food". elena does something similar - she cries for "mcdonalds food" whenever we pass anything that resembles a fast food restaurant. oh boy! :)

    cami (and all of you) are in our prayers!

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  18. I got on to read your post after we talked and it made me feel so much better about mine. I am so glad you vented. My post was a poor me post because Chase is not as old as Cami and doesn't understand that he can't/can go out and play with friends like Cami does. Soon they will both have high counts and this part of the crappiness will end. I am sure it will come back again, but there will be good days and bad. And on the bad, we need to vent. Venting onto a post on my blog always helps me because I can say what I want and just get it out of my system. Sometimes it helps, sometimes it doesn't, but cancer SUCKS and I think the neighbors might call the looney bin if they saw me on my roof top screaming cancer sucks like I want to. So instead venting on the blog will have to do. SO JUST VENT. I love it and it makes me feel more normal to read your posts!!!!

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  19. I just got your email and so I showed Millie the pictures of Cami. She said, "I really think cami looks adorable in that picture (one one on the right in the group of pictures) and she is so SILLY in the other one"

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  20. It was SO fun to be with Pat last night! It was fun to show pictures of Cami to my friend Margart who has gone through extensive chemo because of very aggressive breast cancer. She knows just a big o what you're going through and was amazed at how great Cami looked. Hang in there you guys! It's going to get better...the sooner the better huh?

    Love you,
    The Eyres

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