Friday, August 30, 2013

The plan

I keep putting off writing because honestly it just makes this entire nightmare more real.  Even after 21 days, I am still in shock and sometimes I look around wondering what the heck we are doing here.  Even though we hate that we have to be here, the 4th floor of Primary Children's has become our home.  I am grateful to spend time in the cancer unit.  I say that because the feeling in that unit is indescribable.  You can just feel the powerful energy radiating from each of those kids rooms and the spirit just pours over you the minute those double sealed doors open!  I would have to say that we are really learning to love it here.  Cami has made this little room her own and it is quite cozy.  Pat and I take turns sleeping with her each night because sleeping here is not very restful.  I am trying to learn to love the nights at the hospital,  even though they are extremely exhausting and that's when my anxiety seems to get the best of me.  BUT... the nights in the hospital are full of snuggles, movie time, nail polish, hair dye and glitter tattoo's!  Wouldn't miss them for the world! (thanks Amanda)


Cami was thrilled to learn about her CamiStrong bracelets!  
Giant thank you to Kaitlyn for thinking to order these for us!

Cami is hooked up to her IV almost constantly
 

She has daily physical therapy to keep her little muscles as strong as possible through this process.
video

So what's the plan?  Things were a little up in the air at first and we STILL wont know EVERYTHING until we get Cami back into remission, but we have a MUCH better understanding of what this battle entails for our Cami.  First, she will have to go through 3 rounds of intense, inpatient chemotherapy (we are just finishing up the first round now), we will get to go home in between each round for about a week or two while Cami's bone marrow and blood cells recover.  Once we make it through those 3 rounds, we will go in for the bone marrow prep (which includes more chemo and radiation) to clear out and prepare the bone marrow cavity.  They told us that they will basically take Cami to the brink of death with the chemo/radiation (to the point where they know her marrow will never recover on it's own), then they will rescue her with the new marrow.  We were really hoping that Caden (little brother) would be a match, but he is not.  Cami's bone marrow team has looked into the registry and found some really great options that are potential donors for Cami.  They need to dig more into each donor, but they feel confident with what the registry has to offer.


Cami has been given a handful of chemotherapy, most of which she has seen before.  The chemo is the same, except it is double or triple the doses she got the first time around.  The one new chemo and most toxic is Mitoxantrone.  The nurses call this the blue devil as it is potent and nasty.  This is the bad boy that dropped her counts for so long, hence our long stay in the hospital to keep her safe.  Here are the listed side effects of this nasty little chemo: Low blood counts 1-3 weeks after treatment, mouth sores, nausea, vomiting, loss of appetite, abnormal liver function, urine turns blue/green, the sclera (white part of eye) may temporarily turn blue/green, hair loss, skin rash, fatigue, increased heart rate, heart muscle damage, and headaches.  YIKES!  No wonder they call it the blue devil!

Cami got the blue devil on day one

Her little body just gets worn out


Around day 11, Cami's counts had dropped and she needed a red blood transfusion.  
Thank you to all those selfless people who give blood.  
It save's our Cami's life after the chemo kills all her cells. 

Obviously another side-effect of chemo is hair loss.  Since Cami has done all of this before, she knows what is coming.  She told us she would love to color her hair sunset colors before it falls out.  
Huge thanks to my long-time friend Emily (owner of Salon Revive) for researching non-toxic hair colors and getting this done in such a hurry!  

She was so happy with the end result!

Cami has kept busy and happy thanks to some great family and friends,
lots of visitors and so much support.
Thank you from the bottom of our hearts.
Truly, each and every one of you are pulling us through this!




Caden loves and misses his sister, when he visits he is so worried about her and he tries to be very gentile.  They are the sweetest together.  We just love that little guy of ours...

One day, Cami got the of attention another cancer friend across the courtyard.  They waved from their windows, got out their white boards and wrote back and forth for a good hour.  Gwen made Cami so happy that day!  They asked each other questions like:
"how long have you been in?"
"what's your favorite hospital food?"
"want to be friends?"
 It was seriously adorable! 
 


Cami got a bald moxi doll and she LOVES it!  She named her Katie and she takes her everywhere!

Oh, and of course Froggy goes just about everywhere too.


While her counts were still high enough, we were allowed to go for walks and play in the little oncology playroom.  

a plain sheet of paper and colored pencils are her favorite right now!


 A few days ago, Cami's hair just gave out.
It was coming out like crazy and she decided it was time to shave it.

Of course, Froggy watched with a thumbs up for his Cami!


There's our sweet bald girl.. oddly enough, I have missed that little bald head.

Of course Daddy got a buzz cut too.


Here she is getting her very last chemo ( in this round)!  YAY!!!


Cami has had a great attitude for the most part.  Yes, there are days where she sits at the window, looking out at the world and cries just wishing she could be out there.  There are days she wonders why this had to happen to her, but for the most part she wears that big beautiful smile.  She handles this with such spunk.  She is my hero.

23 comments:

  1. Oh boy, so many memories of living there! You guys are so tough (you know you have to be). It is a special place living in ICS for months on end. I love your attitude and I'm really grateful that you can feel the spirit of the place. Erin was diagnosed in 4422...isn't that your room? If so, we left you LOTS and LOTS of good vibes there!!

    The days seem long and the nights seem even longer, but we are all thinking of you at nearly every moment. Lots of love!!! --Jill

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  2. What a brave girl she is! How is Cami handling everything now that she's older and can understand more? Does the passing of sweet Millie factor into much of the fears that everyone has? It's so unfair that your family has to go through this again but I have great faith that Cami can beat this again. She's in my prayers.

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  3. I just wanted to let you know that prayers are being said in Colorado for your sweet little girl. I rarely comment on blogs but found yours in a round about way and have been directly impacted by your little one. Her strength and bravery is something we can all learn from. Lots of prayers....

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  4. Thinking of you all everyday! Sending lots of love and hugs to sweet Cami and the whole Carver family <3

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  5. Thanks for posting. Happy Birthday to Cami! Our prayers are with you. We feel so blessed that we met you through the window. Cami makes Gwen very happy too!

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  6. tears in my eyes. she is such a strong little girl, it's amazing. i'm just downstairs (on floor 3) of PCMC every mon-fri, and i'm sending my good wishes and prayers up your way :)

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  7. Such a brave little girl and a brave family! I have been following her journey since the beginning and it breaks my heart to read about her going through this again. I give blood every other month and am a bone marrow donor and was inspired by stories like Cami's to do this! Hopefully I will be able to help, whether its with Cami or someone else!

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  8. I hope you don't mind if I follow your blog. I was Millie's preschool teacher (and Amanda's too!), and I met Cami several times. She touched my heart way back then. She has such a beautiful spirit! My prayers are with your family. -Miss Patti

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  9. Way to go cami!!! You are such a great example to all of us!! We love you and your family and think of you often!!

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  10. What a trooper--and a beautiful one at that!!! Hang in there Cami, you can beat cancer again!! Lots of love and prayers from St. George :)

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  11. Happy Birthday Cami, I am so glad you made it home. Chelsea thank you for taking the time to update. It's so hard, but everyone is wondering and praying, you will be happy you have an account. I have to say I bawled like a baby during the pictures of all the visitors. Oh how I wish Millie was there physically, but I know my little angel is surrounding her constantly. Just wish she could be there bring a smile to Cami's face, the way Cami did for her. xoxo

    ps, so glad you are enjoying your nights. It took me a long time to get that frame of mind, I missed out.

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  12. With a big lump in my throat and tears in my eyes I just have to tell you how cute your Cami is. I don't know you but read your blog often and love your updates. Lots and lots of prayers for Cami.

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  13. I don't know your family, but I read your blog through someone's post on facebook.

    My prayers are with you and your sweet family. I experienced the same journey with my sister several years ago.

    Praying for you all!

    - Nancy Thomas

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  14. Oh Chelsea my heart aches for all of you when I read this -- and yet I feel so inspired when I see the faith and courage you have. I can so relate to your thoughts of "wondering what the heck we are doing here". There were so many times last year I kept thinking that this couldn't be my life. This couldn't be the life my kids were supposed to have. And yet somehow like you guys we could always find some joy and happiness and laughter amidst all of the garbage.

    I wish I had some profound wonderful thing to say to make this all better, but just know there are so many people out here praying for all 4 of you and being inspired by all of you. Love you!

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  15. There is always room for one more name in our prayers... yours was added today Cami!

    Warmly,

    Cristin Smith

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  16. I have followed your blog for years and was sad to hear she relapsed. But found it really cool that she was able to become friends with my sweet cousin Gween.

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  17. our family is praying for you Cami! You are so beautiful and brave and you have touched our hearts!!

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  18. Pat and Chelsea our prayers are with your sweet Cami right now. We do love you.

    Love,
    Steve and Peggy Geurts

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  19. You guys are amazing! This hurts my heart but we are praying for sweet Cami and the rest of your family! xoxo

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  20. Chel, I think about you and your family all the time! I am so hopeful that everything goes well!

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  21. I read Shawni's blog and heard about Cami. What a beautiful courageous little girl! Our prayers are with your family.

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  22. I just started reading the blog and was linked over from Presley's page. Seeing she has a bald moxi doll, have you seen the American Girl without hair? You can get it without hair and then when Cami's hair grows back you can send your doll into the hospital and her doll can have hair too.

    You should check it out:
    http://store.americangirl.com/agshop/static/dollHospital.jsp

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