Monday, May 20, 2013

CHEMO day 6! COUNTS are down

Riley took Chemo today like a champ! We actually only needed 1 nurse instead of 3 this time and he didn't even kick and scream. He did cry, but it wasn't for very long! Our ride up to P.M.C.H is about an hour and 15 minutes so at about the half way point, is when I put on the numbing cream over his port, so we are good an numb when they access it! Today he fought me on that part but it was all good! A big thanks to my driver and support system today, my sweet Angie!!

We have had a good week! Riley was down most of Thursday, Friday and Saturday but come Sunday with dad and Hunter, he was crazy!!! It's a wonderful sight! 
So we thought we were doing so good..... Until we got his blood counts today......

WEEK: 1  2  3   4   5  6  
  HGB:   14.1    12.9         ??      11.7      10.7    9.5   (less then 8 is bad)   
  Hct:    41.8%    37.8%   35%  33.2%    30.2%  27.4%  (less then 24% is bad)   
  WBC:  10.5      4.7         3.6      4.2     2.3       1.9    (5.5 is a low normal)
  PLTS:   621      288        272    347   280      288   (less then 30 is bad)    
  ANC:   7.6       3.0          2.2     1.5    1.5          .6   (less the 1 or .5 is bad)

Riley is in the "scary zone" (as I say!) with his HCT, WBC, and ANC.

The HCT is the % of red blood cells, this is what makes you tired and weak. They told us if he gets at or below 24% we need a transfusion, they said this may happen before next weeks appointment so we need to watch for extreme exhaustion and possible headaches. 

The WBC is the white blood count, this helps your body fight infection. Riley's is very low.

The ANC is basically his immune system. They call this the "soldiers" that fight infection. With this being so low it put's Riley at great risk for infection and his body can not fight it off.  When he gets to .5 they will do a transfusion. If his body gets low and the transfusions don't work, or don't get his counts up high enough, they have us give him a shot everyday in the leg to try to boost the count up.

So we were told that if Riley gets very tired or gets a fever to come in right away. They said he will more then likely need transfusions next week and we may possibly post pone next weeks chemo treatment. We are to NOT have any visitor's and Riley is NOT to go anywhere. We need to sanitize the house and every time we come in from being around anyone, we need to scrub down. 
So I guess we are on lock-down! SUPER!! That is so easy with a 1st grader too!! 

I'm trying really hard not to have a breakdown about all of this. I guess it means my child is sicker then he looks on the outside. And that breaks a my heart. It's nothing we didn't know could happen, but when it does, it's hard to swallow. 
I need to foccus on the positive things...... like his side effects that he has NOT gotten as of yet....
-Foot drop 
-nerve problems in hands and feet
-jaw pain (requires pain killers)
-major stomach pain (requires pain killers)
-Mouth sores 
-bum sores
-skin issues
-nose bleeds
 He has however had a major change in his sleep habits! He usually can't go to sleep at night for the couple of days following treatment until after 1 a.m. 
He also has body temperature changes from extreme cold to hot. In fact some nights he moves from the rocking chair to his bed, switching all night because he's to hot or cold. 

I told the boys today that we needed to be very careful for a bit and that Riley can't be around anyone in case they make him sick. Riley said "then I'll have to go to the hospital, hun?" Then let out a huge SIGH. 
So sad he knows what to expect. I'm just glad he can still give me that beautiful smile everyday! Love my Riley Roo!!! 

I'm so thankful for everyone's love, prayers and support. We're so grateful to have so many of you fighting with us. We are very blessed!  


  
  




      




 

2 comments:

  1. You are quite the little dr yourself. You seriously amaze me at how much of everything you comprehend!! You got this Brand!!! xoxo

    Watch
    Sanitize
    Rinse
    Repeat!!

    :)

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  2. Ditto what Katie said...watch, sanitize, rinse, repeat! I'm so sorry you guys are on home shut down! We thought we could come and visit this week...but I guess not. I could never live with myself if we brought something bad into the house. Yikes. But you are all in our thoughts and prayers non-stop! Hang in there...and keep up the good fight! You are well educated and have terrific doctors...and eventually this will all be over soon and Riley will be back to his rowdy old self! We love you sooooo much!

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