Monday, August 5, 2013

Monday July 29th: Chemo week 16 and Echo

Today is going to be a very hard day, not only because we get the dreaded Doxorubison but because we have had such a good break and had fun!!

Before we got Chemo, we had to have an echo on Riley's heart, which is an ultrasound of the heart. Everything looked GREAT!! His heart has not changed or over grown or been damaged because of the chemo and radiation. YAY!!!
Riley however, did not do so great with it......
 From the day before when we talked about going in..... all the way through it, Riley was struggling. He was so scared.
And he HATES to take off his shirt.

Riley's port was placed just barely above his heart, which meant, to get a picture of his heart, they had to maneuver around and on top of his port. Riley cried a lot, he said it hurt and stung. The tech said he didn't think it hurt to bad, and that Riley was probably more scared then anything. I'm not sure, probably both. Either way, it was hard for me to not be a mom and be sad and scared for him too.

We are just relieved that everything looks like it's supposed to!

Chemo was just as fun! He hasn't been accessed for 3 weeks and the night before, he kept asking me, are they going to do this.... are we going here..... are they using this.... will they cut me open again..... (while he's crying in my arms).  No, no and no. Poor thing, doesn't know what to think.

His labs came back good! Not great of course but good enough for chemo! Yay!! no delay!!

Here are his counts:

WEEK:      1    2    3     4     5     6    7    8   9   10   11   12   13  16


  HGB:   14.1    12.9         ??      11.7      10.7    9.5   9.8   10.3   9.2   9.2   8.8   10.8   11.5    11.9                      (less then 8 is bad)   


  Hct:    41.8%    37.8%   35%  33.2    30.2   27.4    28.6   29.7   26.5   27.1   25.1   31.4   33.5   34.2                       (less then 24% is bad)   


  WBC:  10.5      4.7         3.6      4.2     2.3       1.9   6.3    3.7   3.9   2.8   1.9   2.6   2.85   3.3                                (5.5 is a low normal)


  PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378                             (less then 30 is bad)    
ANC:   7.6       3.0          2.2     1.5    1.5          .6     2.4    2.3   2.2   .8  1.0   .6   .8    1.2                             (less the 1 is bad, less then .5 is really bad)


BUT..... in discussing his side effects, they decided NOT to do Vincristine. His nerves are being effected and his legs are starting to get foot drop. Not really bad but bad enough and he can't walk for very long at all. But this is not why..... His eye had started to droop as well. To the point that when he is really sick or tired, it shuts more then half way.
The foot drop is reversible after the treatment ends..... the eye drop is not. If it gets to bad, they will have to do surgery to correct it.
So this time we are not giving him this drug, and we'll see how he does and if his eye stops drooping this week.
For a mom, was this the right decision???? Stop killing cancer to stop nerve damage?? Or continue with both??? I want my son cancer free but at what cost?

We left the house at 9:30 and got home at 5:30...... LONG DAY..... and by we, I mean my wonderful friend Marie got to come too!!
I hope you weren't too traumatized Marie!! Love you! You were very helpful!!
No, I don't like to go alone!
Yes I have fabulous family and friends that will go at a drop of a hat!

And a huge THANK YOU to Aunt Jo for taking Hunter!! You have helped us out so much! Couldn't do it without you!! xoxo

This time Riley did not get sent home with I.V. fluids, I was VERY nervous about that. The other 2 times we got this drug we were either in the hospital or on i.v. at night for 6 nights. But I was very hopeful the doctor's were right in their decision.

We had a very good conversation about whether Riley should start school (kindergarten) or not. She was very confident in sending him. She said he needs to feel normal. Of course we won't send him when he's sick or not strong enough, or when his counts are to low, or when there's other kids in the class sick, and I will be that crazy mom going to the classroom to Lysol and check up on him, but I am going to take a deep breath and just trust that he will be better off, even if he does get sick. (I hope) (am I crazy?) (I'm sick about it)....... I'll be okay.... I think!!













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