Monday, October 28, 2013

Our little soldier (the negative days)

I titled this post 'the negative days' because 7 days before Cami's bone marrow transplant we started the countdown to transplant.  They call these days the negative days (or preparative regimen).  They countdown until the day of the transplant and that day is called day ZERO, after that day we get to start counting UP!  Once Cami gets to day +100 her risks for infection and graft verses host disease will go down a bit.  Then at the one one year mark, we can really take a deep breath and she can return to school and normal life.  So as you can see, this will be a very long process for our little Cami and it is not an easy road, but she is strong!  I am so proud of how she has handled things so far!  

Once we got home from Disneyland, it was time for the bone marrow process to begin.  In order to destroy the maximum number of cancer cells, the combination of total body irradiation and chemotherapy are given at very high doses that would be fatal if Cami did not receive a transplant because all of her bone marrow will be destroyed.  After this point, the bone marrow transplant is crucial.  One Doctor described it to us as taking Cami to the brink of death and bringing her back again.  Obviously this part of the process was terrifying to us.

It all started with twice a day total body irradiation.  Each session lasted about 45 minutes.  I cried through the entire first radiation session and crying is not something I do in front of Cami, but this was one time I couldn't hold it in.  I had to watch as the Doctors hooked Cami up to what seemed like a torture device and then I was forced to leave.  Forced to lock my daughter in a room full of toxic poison.  I was a wreck and it didn't help that after the first session Cami was so weak and tired an extremely nauseous that later that night when it was time to go back she begged and begged us to let her stay home.  It was one of the hardest things I have done this entire time.  Forcing her to go back to get sick all over again.  Pat and I pleaded with her to stand still to get it done as quickly as possible
because each time she moved they had to stop the machine and go in to adjust her lung shields and it just added that much more time on to her sessions.  It was a VERY long and VERY difficult 4 days.  Cami was exhausted and nauseous afterward and to drive up there twice a day was just awful, but I am so proud of her.  Even though she didn't want to, each time she walked into that room knowing that she would come out feeling awful, but she still did it!  She held so still and stood there even when her body was weak and tired and I'm sure she wanted to just give up.  She said to me "mom, I'm standing still and strong like a soldier."  I am so proud of my strong little soldier.  She showed that cancer who's boss even when it wan't easy.  I love my little fighter and I am so glad that battle is over and done with!

Here they are getting her all set up (this process takes about 10 minutes)

Trying to peek over them to see her movie

Each session was 15 minutes on the front and 15 minutes on the back. 

Fighting with a smile!

This is how she looked on the way home each day

Thanks to Aunt Jessie for coming to one of the longest days and being a giant help!  This is Cami after one of her treatments.. just completely zonked out!


On our way home we spotted some gorgeous trees that were "raining leaves".  We realized Cami hadn't had a chance to play in the leaves since the seasons changed, so we pulled over to celebrate no more radiation and danced in the leaves.  It was perfect.

Cami loves her Grandma Di-Di

Later that night we had a surprise at the door.  Cami was thrilled when she opened the door and real life soldiers were standing at there to greet her.  Cami was made an honorary AMMO troop member by the 649 Munitions Squad for being a brave little soldier through her treatments.  She was grinning ear-to-ear the entire time and she has told each and every nurse, tech and visitor all about it since!
Thank you 649 MUNS!  You are all heroes in more ways than one.

The next day it was time to check in for the fight of her life, so she put on her new soldier cap and walked in like a brave little fighter...

This are the only pictures I got while she was getting chemo.. 
here we are passing the time playing with my lipstick.  
Oh, I love my girl!

Oh, and here they are taking her into our new, bigger bone marrow transplant room.
Here we go.. ready or not!


  1. Reading this has been really touching.

    I hadn't realised before how much a person has to go through before & after a transplant.

    I really enjoy reading your blog & check it for updates often.

    What is the actual day of the transplant? I'd like to put Cami, your family & the bloke donating on the temple prayer roll in the UK & also remember you in my prayers.

    Thinking & praying for you. X


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