Monday Oct. 14th..... TESTING TESTING 1,2,3..... AND NED!!!!

Today was the longest day of our lives, I swear!!!!

Riley had to be fasting for the CT and he was already hungry by the time we left the house at 8:45 a.m.
We got there and got him accessed, blood drawn and down to CT at about 10:30. Then for an hour to an hour and a half he had to drink a special "root beer" so that it could feel up his belly and bowels so they could see inside them. Once they took us back, they injected die into Rileys i.v. port, so that would go through his body too.
Riley did it like a champ!! No probs and no fights!! 

Next we had clinic at 1:00 so we could talk with Dr. Afify about his CT results and blood work, but first we had to go get some Fruit loops and a Cinnamon roll for this little guys hungry belly!!!

We were given his blood work which was:

WEEK:      1    2    3     4     5     6    7    8   9   10   11   12   13  16 19 22 25  27

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   12.3   12.2    12.2   11.7         (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   34.9     34.3    34.7   33.3       (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   2.8     8.6    3.6     4.3               (5.5 is a low normal)

PLTS:   621      288        272    347   280      288   466   168    265   475  319  318  400  378    329     333       311    308         (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      1.0     5.4    1.3     1.9         (less the 1 is bad, less then .5 is really bad)

But the Dr needed to go down stairs and talk with the radiologist about the CT, in the mean time we were told to go have our scheduled echo done, but that they wanted an ultrasound of Riley's liver afterward. "Because they found something on it that needs to be checked out." 
WAIT?? WHAT????  Like what?? Should I be worried? Is this bad news? 
But before I could ask, we were on our way.....

Echo..... while watching "The Croads"!!!!!

His heart looked good!!!
We check his heart because of the Doxorubison drug they gave him, it causes heart damage. But I was thinking that the damage to his heart would be the valves but I found out it would be heart failure. His heart would get slower and sluggish and not work right. But usually that is a delayed complication that happens in the next 15 to 20 years...... NICE!!!

Then at 3:30 we were off to the cafeteria to finally get lunch as fast as we could to eat it in the waiting room, which Riley could only eat a tiny bit of because of the ultrasound.
Non the less, he was happy!!!

Next was back to the 4th floor for test results........

RILEY IS NED ( No evidence of disease)!!!!!!! 
He is in remission!!! They don't say cancer free until your scans are clear for 5 years, but we will take NED!!
They found a spot on his liver that is the size of a marble, they are hoping is just a cyst. They will watch it closely every 3 months and if there is any changes we will be more aggressive but if it stays a black hole with thin walls, then after the 2 years, we will call it a cyst and not worry about it!!
It makes me crazy knowing this could be a tumor but I'm trusting the pros on it!!

Riley was AWESOME all day and even got a few fun toys!!!
Thanks mom for going with!! I know it was no fun at all!!
And thanks to Chris's mom for taking care of Hunter after school!! 

Since this is our last time coming to the Hemat/Oncology floor for a while, we had to say by to our favorite "check-in" nurse Pam!!! 
From day 1 we come in our P.J's and ride in our convertible!!! And he NEVER gets on the scale by himself! I always have to hold him them put him down then weigh myself to get his weight..... NOT GOOD!!! (for me)! haha! But this last time.... Riley did it all by himself!! I wondered when this day would come!!! He went from 55 lbs to the lowest 43 lbs now back up to 47.5 lbs!! I'd say pretty good!!

We rolled out of there and got home about 5:30 p.m. What a LONG DAY!!!
But what a GREAT DAY too!!!
My heart is a little bit calmer and I feel a heavy weight lifted off my shoulders! I CAN BREATH FOR NOW!!
I'm not sure how to get back to normal or at least "our new" normal life.  Every day is a new "baby step" for us!!!

Next week...... Surgery to remove port!! WAHOOOO!!!!!!!